How to deal with extreme physical pain(hanselman.com)
hanselman.com
How to deal with extreme physical pain
https://www.hanselman.com/blog/how-to-deal-with-extreme-physical-pain
361 comments
I'd just like to say that, while I see people responding in exactly the way you and gwbas1c are describing, and trying to turn the criticism back around on you, you have made me think about my actions in the past and the way I express concern, and what sort of boundaries I should have with people. Reading about your experience, and seeing it happen in real time, has been extremely educational for me.
I hope it is heartening to know that you've inspired a self awareness in at least one person with this thread. Thank you for taking the time.
I hope it is heartening to know that you've inspired a self awareness in at least one person with this thread. Thank you for taking the time.
I'm less dangerous if I know nothing, but duly noted about how unwelcome medical advice can be
I always appreciate advice (or any input, really) when it comes from someone with experience or wisdom regardless of whether they are a medical professional.
This is maybe not completely clear, but one of the issues is that if you have a serious condition, you may know more than most doctors do about the condition. I mean you may know more about it than general practitioners and you will only have some hope of learning more from a doctor if you see a specialist.
So you have buckets and buckets of info and you run into well-meaning people who want to feel helpful and they toss out some random snippet of an idea without even really talking with you. It would be sort of like if you walked into a doctor's office and said "I have x condition" and they replied "Do you want X antibiotic?" without taking a history of finding out what your current complaint is.
And it becomes about their emotional needs. Even if they are sincere, it's exhausting to try to explain.
It's like if you go to a cocktail party and you spend the entire evening repeating your entire medical history to everyone you meet to satisfy their curiosity and you never get one minute to actually enjoy the party and socialize a little.
So you eventually just don't want to talk to people casually about it at all. Because it is one hundred percent downside for you.
There is a long-shot scenario in which maybe you will meet someone who actually knows something useful and is actually sensitive about how they talk with you about it and it's mostly not worth leaving that door open in hopes of connecting with that one rare person once in a great while because the rest of the time it is such a huge burden on your already limited time and energy that you are better off just betting that "This person cannot help me. Moving on. Yeesh."
So while I welcome sincere interest in my various problems, no, some random person who knows nothing of my background and just wants to get their jollies feeling "helpful" for five minutes isn't really going to enhance my life at all. It is all downside and I mostly want to avoid having certain topics come up.
So you have buckets and buckets of info and you run into well-meaning people who want to feel helpful and they toss out some random snippet of an idea without even really talking with you. It would be sort of like if you walked into a doctor's office and said "I have x condition" and they replied "Do you want X antibiotic?" without taking a history of finding out what your current complaint is.
And it becomes about their emotional needs. Even if they are sincere, it's exhausting to try to explain.
It's like if you go to a cocktail party and you spend the entire evening repeating your entire medical history to everyone you meet to satisfy their curiosity and you never get one minute to actually enjoy the party and socialize a little.
So you eventually just don't want to talk to people casually about it at all. Because it is one hundred percent downside for you.
There is a long-shot scenario in which maybe you will meet someone who actually knows something useful and is actually sensitive about how they talk with you about it and it's mostly not worth leaving that door open in hopes of connecting with that one rare person once in a great while because the rest of the time it is such a huge burden on your already limited time and energy that you are better off just betting that "This person cannot help me. Moving on. Yeesh."
So while I welcome sincere interest in my various problems, no, some random person who knows nothing of my background and just wants to get their jollies feeling "helpful" for five minutes isn't really going to enhance my life at all. It is all downside and I mostly want to avoid having certain topics come up.
I spent years having people tell me I should eat more fibre or try to not let myself get stressed out, etc. That stopped when the lower half of my digestive system was replaced with a very obvious ostomy appliance. Now, the visible reminder of my illness makes me different enough that they know there's no really shared experience and we talk about other things. That and my increasing resemblance to Quasimodo as my joints fuse and deform, of course. Anyway, just commiserating!
This exactly. Most people, including medical professionals, don't have the time or interest to actually, really listen to you - nor enough understanding to not require going into explaining detail and patterns. They are there to fairly poorly observe, ask a set of questions based on their observations - use responses by people who are less than fully self-aware and likely don't have the best self-observation skills either, and then prescribe - but not there to learn or understand; I'm convinced this role will be replaced by adequate diagnostics and AI within the next 10 years, save the institutions, unions, etc. trying to self-protect to save their jobs if they're not willing to adapt (and not require such a high salary for what ultimately will be a technician role - and training the system and protocol will be the role of serious researchers).
I do however have seemingly infinite amount of time to talk, share, and explain my story in depth if they are willing, wanting, and curious.
I am in this difficult position right now regarding doctors not understanding, and behaviour and decisions not being so much critical thinking and reason based but behaviour based on indoctrinated knowledge that's skewed by the medical industrial-institutional complex: in brief, my chronic pain causes severe executive dysfunction - and only recently was I able to try a dopamine agonist which is the only medication that's helped the pain and very significantly reduce the executive dysfunction - but only starting at .5mg dose, however I have only been able to get a .25mg daily dose after trying with 5 different types of doctors - including pain management doctors - because dopamine isn't commonly used for pain, it's "somehow" slipped out of part of their practices - much like how MDMA was demonized for many decades and now MAPS.org has proven its extreme effectiveness in treating things like treatment resistant PTSD; MDMA which can't be patented, so what better way to kill competition than a drug war.
Anyway, I have been struggling to see a neurologist and/or neurosurgeon - primarily as I am in Canada and the system is very slow - who apparently are the types of doctor who are less conservative when it comes to medications like dopamine agonists; used to treat people with Parkinson's for their tremors (and ~80% also have pain issues that it helps with), and also research shows dopamine helps improve executive function in people with Alzheimer's as well. The pain level and executive dysfunction level has me struggling daily however, life is very hard just waiting when I know just having a higher dose of cabergoline would greatly alleviate symptoms, so I've now initiated seeing a neurosurgeon and neurologist when I go to San Francisco for December.
I'm right fucked if a neurologist or neurosurgeon won't prescribe me a higher dose - and unless a good samaritan points me to how to buy it from a black market - then come the new year I will be done trying to fight; I've looked through tor browser those sites don't seem to sell cabergoline - a little surprising as it would seemingly pair well with other sex-related enhancers that are popular, since it can aid in reducing refractory period - I guess it's just knowledge that's little known.
Edit to add: I'm only "on the ball" so well this morning because I took .25mg last evening, so I have just that much more dopamine in my system helping me focus away from the pain - not be so distracted by the pain - which I only get to do once per week, the leftover of .25mg daily (1.75mg) leaving .25mg remaining of my 2mg weekly prescription; and I got two other important emails written and sent this morning, whether they lead to anything it doesn't matter - I just knew I needed to send them and I could instead of pain disrupting me from being able to put them together.
I do however have seemingly infinite amount of time to talk, share, and explain my story in depth if they are willing, wanting, and curious.
I am in this difficult position right now regarding doctors not understanding, and behaviour and decisions not being so much critical thinking and reason based but behaviour based on indoctrinated knowledge that's skewed by the medical industrial-institutional complex: in brief, my chronic pain causes severe executive dysfunction - and only recently was I able to try a dopamine agonist which is the only medication that's helped the pain and very significantly reduce the executive dysfunction - but only starting at .5mg dose, however I have only been able to get a .25mg daily dose after trying with 5 different types of doctors - including pain management doctors - because dopamine isn't commonly used for pain, it's "somehow" slipped out of part of their practices - much like how MDMA was demonized for many decades and now MAPS.org has proven its extreme effectiveness in treating things like treatment resistant PTSD; MDMA which can't be patented, so what better way to kill competition than a drug war.
Anyway, I have been struggling to see a neurologist and/or neurosurgeon - primarily as I am in Canada and the system is very slow - who apparently are the types of doctor who are less conservative when it comes to medications like dopamine agonists; used to treat people with Parkinson's for their tremors (and ~80% also have pain issues that it helps with), and also research shows dopamine helps improve executive function in people with Alzheimer's as well. The pain level and executive dysfunction level has me struggling daily however, life is very hard just waiting when I know just having a higher dose of cabergoline would greatly alleviate symptoms, so I've now initiated seeing a neurosurgeon and neurologist when I go to San Francisco for December.
I'm right fucked if a neurologist or neurosurgeon won't prescribe me a higher dose - and unless a good samaritan points me to how to buy it from a black market - then come the new year I will be done trying to fight; I've looked through tor browser those sites don't seem to sell cabergoline - a little surprising as it would seemingly pair well with other sex-related enhancers that are popular, since it can aid in reducing refractory period - I guess it's just knowledge that's little known.
Edit to add: I'm only "on the ball" so well this morning because I took .25mg last evening, so I have just that much more dopamine in my system helping me focus away from the pain - not be so distracted by the pain - which I only get to do once per week, the leftover of .25mg daily (1.75mg) leaving .25mg remaining of my 2mg weekly prescription; and I got two other important emails written and sent this morning, whether they lead to anything it doesn't matter - I just knew I needed to send them and I could instead of pain disrupting me from being able to put them together.
It is interesting that you benefit so much from Cabergoline. Are your problems also related to elevated Prolactin levels, Hyperprolactinemia?
Bromocriptine would be cheaper than Dostinex/Cabergoline.
I do not recommend anything in this comment. If you benefit from a fight-or-flight state, the extra focus and pain filtering, then Atomoxetine/Strattera or Vyvanse/Amphetamine could be worth it for the extra Norepinephrine (and Dopamine).
Emsam (Irreversible MAOI, transdermal administration) and Moclobemide (Reversible MAOI) are also interesting in general. DO NOT combine these MAOIs with Cabergoline or the other drugs mentioned above. You could die from the drug interaction! Besides that, the benefit and side effect profiles are excellent. The dietary restrictions are not as severe as with the classic MAOIs. I do not recommend anything in this comment.
I do not recommend anything in this comment. If you benefit from a fight-or-flight state, the extra focus and pain filtering, then Atomoxetine/Strattera or Vyvanse/Amphetamine could be worth it for the extra Norepinephrine (and Dopamine).
Emsam (Irreversible MAOI, transdermal administration) and Moclobemide (Reversible MAOI) are also interesting in general. DO NOT combine these MAOIs with Cabergoline or the other drugs mentioned above. You could die from the drug interaction! Besides that, the benefit and side effect profiles are excellent. The dietary restrictions are not as severe as with the classic MAOIs. I do not recommend anything in this comment.
You can buy Cabergoline in bulk from Alibaba (China).
Edit: Purity can be a problem. Testing is necessary.
This may or may not be a legal option where you live.
Ignore the listed price and quantities. Use common sense to find serious sellers. You communicate with the seller to learn the actual price and shipping cost for the quantity that you want to buy. If the Minimum Order Quantities (MOQ) are much more than you need, then negotiate down in size and throw more money at the problem.
Another option is a pharmacy in Vanuatu: https://www.inhousepharmacy.vu/p-1991-dostinex-tablets.aspx
Ignore the listed price and quantities. Use common sense to find serious sellers. You communicate with the seller to learn the actual price and shipping cost for the quantity that you want to buy. If the Minimum Order Quantities (MOQ) are much more than you need, then negotiate down in size and throw more money at the problem.
Another option is a pharmacy in Vanuatu: https://www.inhousepharmacy.vu/p-1991-dostinex-tablets.aspx
Losing executive function is just horrible.
At the risk of being the exact kind of asshole so many of us are decrying here: I know something about healing neurological crap and one of my sons has recovered lost executive function as a consequence. (Though it took years.) Hit me up if you want to just TALK with me on the off chance that it is moderately useful to you to some degree.
I don't like giving advice per se. I don't like saying "You should do X!" But I'm happy to talk about some of our experiences and some of what I think about neurological stuff (and possibly life, the universe and everything because help may end up being in some seemingly unrelated topic).
At the risk of being the exact kind of asshole so many of us are decrying here: I know something about healing neurological crap and one of my sons has recovered lost executive function as a consequence. (Though it took years.) Hit me up if you want to just TALK with me on the off chance that it is moderately useful to you to some degree.
I don't like giving advice per se. I don't like saying "You should do X!" But I'm happy to talk about some of our experiences and some of what I think about neurological stuff (and possibly life, the universe and everything because help may end up being in some seemingly unrelated topic).
I have found this to be true with respect to doctors. Ultimately though, where I made gains by gleaning from research papers or books, it comes from authoritative sources i.e. some who know quite a lot about the subject. I never had to meet anyone to get better, I just read books and papers on google scholar. But sometimes a random person online can lead me that direction.
But sometimes a random person online can lead me that direction.
I really only discuss my condition on the internet these days. I basically don't tell people I meet in person "I have (diagnosis)." I have taken to telling kind of a little white lie that "I have a paper allergy" to explain my aversion to handling papers and even that has proven to be so much ridiculous bullshit that it is a factor in me quitting all my volunteer work.
It's aggravating because my ATM asks me if I want a receipt, no receipt or email me a receipt and doesn't need an explanation or doctor's note or invasive chit chat as to why I prefer it emailed me. The paperless option in most settings is deemed to be the environmentally-friendly option and doesn't require justification or putting up with lurid interest and harassing comments about my health, my lifestyle, blah blah blah.
I don't want to discuss my condition under any circumstance anymore where I can't just give people a link to explain X if I want to share info but don't want to spend a lot of time and effort repeating things I'm bored to death with repeating because while my condition and situation may be new to "you," it sure as hell isn't new to me, good god and please shut the hell up and leave me the hell alone.
I really only discuss my condition on the internet these days. I basically don't tell people I meet in person "I have (diagnosis)." I have taken to telling kind of a little white lie that "I have a paper allergy" to explain my aversion to handling papers and even that has proven to be so much ridiculous bullshit that it is a factor in me quitting all my volunteer work.
It's aggravating because my ATM asks me if I want a receipt, no receipt or email me a receipt and doesn't need an explanation or doctor's note or invasive chit chat as to why I prefer it emailed me. The paperless option in most settings is deemed to be the environmentally-friendly option and doesn't require justification or putting up with lurid interest and harassing comments about my health, my lifestyle, blah blah blah.
I don't want to discuss my condition under any circumstance anymore where I can't just give people a link to explain X if I want to share info but don't want to spend a lot of time and effort repeating things I'm bored to death with repeating because while my condition and situation may be new to "you," it sure as hell isn't new to me, good god and please shut the hell up and leave me the hell alone.
Indoctrination is real when it comes to medical professions, there are major pitfalls with the current system including regulatory capture by for-profit interests, e.g. the medical industrial-institutional complex.
I've learned the vast majority of what I've needed to heal not through the mainstream medical system - and more often than not there's disbelief, skepticism, or false narratives they react with simply because they didn't learn it through their narrow specialized path, being selected primarily for their memorization skills and not critical thinking and reasoning skills.
I've learned the vast majority of what I've needed to heal not through the mainstream medical system - and more often than not there's disbelief, skepticism, or false narratives they react with simply because they didn't learn it through their narrow specialized path, being selected primarily for their memorization skills and not critical thinking and reasoning skills.
I tried to address that in a comment below but you both made it clearer.
It's hard to keep a neutral yet supportive stance toward others. We react or overreact due to our psychology and education (and mood at the time) but it can backfire.
I think this should be discussed because it's highly valuable for everybody .. both personally and for society as a wohle.
It's hard to keep a neutral yet supportive stance toward others. We react or overreact due to our psychology and education (and mood at the time) but it can backfire.
I think this should be discussed because it's highly valuable for everybody .. both personally and for society as a wohle.
I was rereading The Lord of the Rings a while back and one of the things that struck me was how seriously the characters take the giving of advice. In retrospect I think this is one of the biggest blind spots of American culture in general. We act like advice is cheap or even free, both in the giving and in receiving. It's not. Even when solicited. I think we'd all be healthier if we were slower to give advice, even outside of such extreme circumstances.
Advice gets old after awhile.
Someone finds out you suffer migraines, “oh drink some water!”
Also chronic conditions tend to have cycles of weeks to months.
People get tired of dealing with you much faster. So you learn to hide your symptoms as best possible.
Someone finds out you suffer migraines, “oh drink some water!”
Also chronic conditions tend to have cycles of weeks to months.
People get tired of dealing with you much faster. So you learn to hide your symptoms as best possible.
> “oh drink some water!”
Works for me. Headaches without. I often wake up a few times each night to drink water to get rid of dehydration headaches. And I carry water with me all the time, thirst all day, headaches when it runs out. (like yesterday). Worse in the desert.
One guy I worked with suffers from extreme debilitating migraines and only drinks about 1/4 of the amount of liquids that I find necessary to avoid headaches. (which is about ~3-4 litres/day). I would tell him if I did the same I'd have major headaches too. But no, he doesn't want to hear it, says water doesn't work. Too dumb perhaps.
Actually I can feel a slight headache now so will go drink some more water to get rid if it. If it hurt more I'd reach for 400mg of ibuprofen or two and, of course, more water.
Works for me. Headaches without. I often wake up a few times each night to drink water to get rid of dehydration headaches. And I carry water with me all the time, thirst all day, headaches when it runs out. (like yesterday). Worse in the desert.
One guy I worked with suffers from extreme debilitating migraines and only drinks about 1/4 of the amount of liquids that I find necessary to avoid headaches. (which is about ~3-4 litres/day). I would tell him if I did the same I'd have major headaches too. But no, he doesn't want to hear it, says water doesn't work. Too dumb perhaps.
Actually I can feel a slight headache now so will go drink some more water to get rid if it. If it hurt more I'd reach for 400mg of ibuprofen or two and, of course, more water.
I didn't notice this on my recent read. Can you think of an example?
Three is Company:
"Is it indeed?" laughed Gildor. "Elves seldom give unguarded advice, for advice is a dangerous gift, even from the wise to the wise, and all counsels may run ill."
The Mirror of Galadriel:
"Do you advise me to look?" asked Frodo.
"No," she said. "I do not counsel you one way or the other. I am not a counselor. [...] Do as you will."
"Is it indeed?" laughed Gildor. "Elves seldom give unguarded advice, for advice is a dangerous gift, even from the wise to the wise, and all counsels may run ill."
The Mirror of Galadriel:
"Do you advise me to look?" asked Frodo.
"No," she said. "I do not counsel you one way or the other. I am not a counselor. [...] Do as you will."
> It's because I don't want your advice on how to make the pain go away or to deal with it
Banana_giraffe isn't alone.
I had chronic obstructive sleep apnea and I quickly got tired of unsolicited woo-woo illogical suggestions to treat it.
Exercise and meditation doesn't fix problems with bone structure.
Banana_giraffe isn't alone.
I had chronic obstructive sleep apnea and I quickly got tired of unsolicited woo-woo illogical suggestions to treat it.
Exercise and meditation doesn't fix problems with bone structure.
I hear that. It took a reluctantly ordered sleep study for doctors to even take my case seriously (since I was in incredible shape). Then when I picked up the machine they said they were expecting someone morbidly obese.
Sometimes people just get a bad luck of the draw, and no amount of "hard work" can fix genetics.
Sometimes people just get a bad luck of the draw, and no amount of "hard work" can fix genetics.
Sleep apnea is like knee pain in that loosing significant weight either makes a huge difference, or does nothing. Unfortunately, if it doesn’t work for you people will still constantly bring it up.
As someone who struggles with weight and chronic conditions.
There are low hanging fruit. Dropping weight, removing processed foods, exercise are your bare minimum of what everyone should try for solving Medical problems.
Now a lot of problems can be solved this way. Just not everything.
I suffered exercise intolerance for decades. No mater how hard I tried I would need two weeks of recovery after any work out. Turned out I had underlying problems that none of the what I mentioned above were going to fix.
However I still feel strongly that if I’m going to complain to a doctor, I should be doing my part with diet and exercise.
There are low hanging fruit. Dropping weight, removing processed foods, exercise are your bare minimum of what everyone should try for solving Medical problems.
Now a lot of problems can be solved this way. Just not everything.
I suffered exercise intolerance for decades. No mater how hard I tried I would need two weeks of recovery after any work out. Turned out I had underlying problems that none of the what I mentioned above were going to fix.
However I still feel strongly that if I’m going to complain to a doctor, I should be doing my part with diet and exercise.
My spouse has something similar, do you mind sharing what the underlying problem was?
Two issues. IIH and Sjogrens.
I have a similar exercise intolerance, could you enlighten me to what the underlying problem was?
Two issues. IIH and Sjogrens.
Idiopathic intracranial hypertension Also called: pseudotumor cerebri.
Description A condition that occurs when pressure inside the skull increases for no obvious reason.
Idiopathic intracranial hypertension Also called: pseudotumor cerebri.
Description A condition that occurs when pressure inside the skull increases for no obvious reason.
One of the things that was a revelation to me about sleep apnea… it's not CAUSED by your weight. Here, I'd been carrying that around for years, and feeling like a failure.
I brought it up to my sleep doctor. I said I thought I had it because of my weight, he laughed at it. He said, "If you are overweight, that can exacerbate apnea, but IT ABSOLUTELY DOES NOT CAUSE IT. That's absurd."
My sleep doctor is suuuuper fit, and very lean. An avid runner. He said that he has a VERY bad case of sleep apnea. I was floored!
He said you either have it or you don't.
I brought it up to my sleep doctor. I said I thought I had it because of my weight, he laughed at it. He said, "If you are overweight, that can exacerbate apnea, but IT ABSOLUTELY DOES NOT CAUSE IT. That's absurd."
My sleep doctor is suuuuper fit, and very lean. An avid runner. He said that he has a VERY bad case of sleep apnea. I was floored!
He said you either have it or you don't.
I've heard different from sleep doctors, that is, it can be bad luck from genetics where weight is not the main (or even not at all) a factor, but for others it's largely caused by fat deposits blocking the upper airway, and with weight loss it entirely goes away.
So case by case?
So case by case?
I had a doctor in the sleep clinic tell me if I lost 10KG my sleep apnea would be cured. I lost 15KG and my prescription went up 5%. When the doctors treating you believe that nonsense and then are surprised it did not work there isn't much hope for the public. This myth actually comes from the doctors.
Weight loss is not curative, but it is a useful. About 2/3rds to 3/4ths of people with obstructive sleep apnoea are obese.
https://cks.nice.org.uk/topics/obstructive-sleep-apnoea-synd...
> These recommendations are based on the Scottish Intercollegiate Guidelines Network (SIGN) guideline Management of obstructive sleep apnoea/hypopnoea syndrome (OSAHS) in adults [SIGN, 2003].
> Advice on weight loss and exercise
> Expert opinion in a clinical review article from the British Medical Journal, Obstructive sleep apnoea, concluded that weight reduction programmes are not to be thought of as curative but rather as adjunctive for people with obstructive sleep apnoea syndrome (OSAS) [Greenstone and Hack, 2014].
> A meta-analysis of 5 small studies (n = 129) found a reduction in the apnoea/hypopnoea index (AHI) by –6.27 events/hour following supervised exercise training. This demonstrated a reduction in the severity of sleep apnoea (with minimal changes in body weight) with exercise [Iftikhar et al, 2014].
https://cks.nice.org.uk/topics/obstructive-sleep-apnoea-synd...
> These recommendations are based on the Scottish Intercollegiate Guidelines Network (SIGN) guideline Management of obstructive sleep apnoea/hypopnoea syndrome (OSAHS) in adults [SIGN, 2003].
> Advice on weight loss and exercise
> Expert opinion in a clinical review article from the British Medical Journal, Obstructive sleep apnoea, concluded that weight reduction programmes are not to be thought of as curative but rather as adjunctive for people with obstructive sleep apnoea syndrome (OSAS) [Greenstone and Hack, 2014].
> A meta-analysis of 5 small studies (n = 129) found a reduction in the apnoea/hypopnoea index (AHI) by –6.27 events/hour following supervised exercise training. This demonstrated a reduction in the severity of sleep apnoea (with minimal changes in body weight) with exercise [Iftikhar et al, 2014].
Spouse has a threshold weight. Above she snores like a train. I sleep elsewhere.
Below she’s fine.
Below she’s fine.
Yes they are, because sleep apnea causes obesity since lack of sleep messes enormously with your hormones. Its not causative its correlated, it is a symptom.
I had poor sleep for ages and was never overweight, which is true of most insomniacs I imagine. Sleep apnea may facilitate obesity but it doesn't cause it. It's calories in, calories out.
I think the strong correlation of obesity with sleep apnea however should lend credence to the idea that it at least exacerbates it. But more to the point, there are conditions that are very similar to sleep apnea but are misdiagnosed as such. And these may very well be more related to weight.
I think the strong correlation of obesity with sleep apnea however should lend credence to the idea that it at least exacerbates it. But more to the point, there are conditions that are very similar to sleep apnea but are misdiagnosed as such. And these may very well be more related to weight.
Exercise can help fix excessive body fat, which contributed to my apnea.
It’s actually pretty fascinating how many common and sometimes serious medical problems are known to be fixable with “woo-woo” advice like “don’t eat like shit” (advice that 95% of people don’t follow). E.g. type 2 diabetes and refractory epilepsy now have purely dietary interventions as front-line treatments. We have weak evidence that this will probably work for many other common diseases. But just 10 years ago you would probably have been accused of “woo-woo” for making this claim about epilepsy or diabetes.
It’s actually pretty fascinating how many common and sometimes serious medical problems are known to be fixable with “woo-woo” advice like “don’t eat like shit” (advice that 95% of people don’t follow). E.g. type 2 diabetes and refractory epilepsy now have purely dietary interventions as front-line treatments. We have weak evidence that this will probably work for many other common diseases. But just 10 years ago you would probably have been accused of “woo-woo” for making this claim about epilepsy or diabetes.
And perhaps this is a thing everyone deals with to some extent for one thing or another: I have a very strictly controlled diet. It's the result of a lot of testing, and discussions with my doctors.
Most people that are around me enough get a sense of this. Most don't know the depth of it.
What gets old is when I deviate from the diet, by say having a glass of beer at a social function, it's a big deal. Everyone's concerned about me, which I appreciate, but I have to justify the beer by pointing out how it fits into my diet, and how I've planned for this beer. I have had to pull up my diet plan on more than one occasion to make someone happy.
If I was known to have problems adhering to my diet, and asked for this sort of help, then fine. I don't have that, and I've tried to tell people that I know what my diet is. I try to be nice about it, and ask people to just let me be.
Instead I get to defend every beer I have. So, now I'm the teetotaler in the office. It's just easier than the alternative. But it's damned annoying.
Most people that are around me enough get a sense of this. Most don't know the depth of it.
What gets old is when I deviate from the diet, by say having a glass of beer at a social function, it's a big deal. Everyone's concerned about me, which I appreciate, but I have to justify the beer by pointing out how it fits into my diet, and how I've planned for this beer. I have had to pull up my diet plan on more than one occasion to make someone happy.
If I was known to have problems adhering to my diet, and asked for this sort of help, then fine. I don't have that, and I've tried to tell people that I know what my diet is. I try to be nice about it, and ask people to just let me be.
Instead I get to defend every beer I have. So, now I'm the teetotaler in the office. It's just easier than the alternative. But it's damned annoying.
[deleted]
centimeter(4)
Just so you know, you're effectively complaining that people care about you too much. People can't put themselves in your shoes, but they try, and when they see you having a beer, knowing it could be bad for you, they try to support you in keeping away from it.
I can see how it would get annoying. If you view it as love, instead of nagging, it might get a little less annoying.
I can see how it would get annoying. If you view it as love, instead of nagging, it might get a little less annoying.
It's virtue signaling, not caring. It's pretending to care and expecting to get pats on the head for it while actually being a burden to someone whose life is already overburdened.
It's the opposite of actually caring about a person. It's caring about them making you feel good about going through superficial "caring" motions while doing absolutely no good and lots of terrible harm when it is added up over time for the person with a chronic condition whom absolutely everyone wants pats on the head from for pretending to care while doing not a damn thing to actually make their life better in some meaningful way.
If people care, they do what actually helps you rather than insisting you make them feel good for superficial bullshit that only adds to your suffering.
It's the opposite of actually caring about a person. It's caring about them making you feel good about going through superficial "caring" motions while doing absolutely no good and lots of terrible harm when it is added up over time for the person with a chronic condition whom absolutely everyone wants pats on the head from for pretending to care while doing not a damn thing to actually make their life better in some meaningful way.
If people care, they do what actually helps you rather than insisting you make them feel good for superficial bullshit that only adds to your suffering.
> If people care, they do what actually helps you rather than insisting you make them feel good for superficial bullshit that only adds to your suffering.
This is a very simplistic way to look at people. A lot of people are misinformed or not thoughtful or don't fully understand your experience or frankly not that bright. The idea that people who genuinely care never do any damage is beyond ludicrous.
This is a very simplistic way to look at people. A lot of people are misinformed or not thoughtful or don't fully understand your experience or frankly not that bright. The idea that people who genuinely care never do any damage is beyond ludicrous.
That's a ludicrous interpretation of my remark.
People who actually care will be okay with being told "This isn't helping. Please just stop." But that's not what the vast majority of people do.
The vast majority of people want it acknowledged that they are good people because they care about you and are trying to help and all this shit.
If they cared, they would drop it when asked instead of doubling down on trying to demand that you make them feel like a good person for fucking with your life and trampling your boundaries.
I also have a serious condition. No, most people absolutely do not actually care about my welfare.
I have tons of firsthand experience with this and I'm not budging one inch.
People who actually care will be okay with being told "This isn't helping. Please just stop." But that's not what the vast majority of people do.
The vast majority of people want it acknowledged that they are good people because they care about you and are trying to help and all this shit.
If they cared, they would drop it when asked instead of doubling down on trying to demand that you make them feel like a good person for fucking with your life and trampling your boundaries.
I also have a serious condition. No, most people absolutely do not actually care about my welfare.
I have tons of firsthand experience with this and I'm not budging one inch.
I find it’s often due to people getting frustrated and not knowing his deal with it in an emotionally helpful way.
See it in kids constantly, adults often.
Kids getting mad at the cat for not liking being dressed in doll clothes.
Yes you care about the cat. However now everyone including the cat is unhappy.
Childish behavior, except it still hurts when loved ones get mad at you for not recovering fast enough.
Parents offered me some pills (blood thinners) that might solve some problems.
They got very upset when I refused without a doctors consent.
Only thing I wanted from them was emotional support. Instead I had go cut them off for a year.
All because they couldn’t fix me.
See it in kids constantly, adults often.
Kids getting mad at the cat for not liking being dressed in doll clothes.
Yes you care about the cat. However now everyone including the cat is unhappy.
Childish behavior, except it still hurts when loved ones get mad at you for not recovering fast enough.
Parents offered me some pills (blood thinners) that might solve some problems.
They got very upset when I refused without a doctors consent.
Only thing I wanted from them was emotional support. Instead I had go cut them off for a year.
All because they couldn’t fix me.
Based on other comments, I was under the impression that some people wanted zero unsolicited feedback. This instead sounds like you don't want people to keep offering suggestions after you tell them to stop. The former would make for a really cold society. The latter is completely understandable. I would tell the repeat offenders to fuck right off.
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Support groups are a good place.
Lots of forums dedicated to most chronic conditions. Much safer to ask advice in those places.
Within a range, you get to interpret the actions of others. It's like one of those optical illusions where you can see a rabbit or a duck, but not both at the same time. One of those illusions will anger you and sap your strength. The other will connect you with another human being on some level, however superficial, which is wired to make you feel happy and fulfilled. Neither is the full vision of truth. But you are free to choose the lens through which you view the world.
The ironic thing is that the original complainant is making this exact same point about those who give this advice. Typically they're not trying to connect - they're trying to fulfill their own needs without understanding the other's needs.
None of us fully understand each other's needs. You can get frustrated about that, or educate others. It's a personal choice. I don't judge anyone either way (or at least, I agree they are free to make their own decisions), but having done both, I certainly have my own observations about which of those leads more effectively to happiness.
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That’s not “caring about you too much”. It’s not knowing what’s appropriate.
As someone who had to follow a strict diet for a while, I know for a fact that the people who stuck their nose into my allowed indulgences did not care about me nearly as much as the people who actually cared and knew I was capable of managing my own diet.
As someone who had to follow a strict diet for a while, I know for a fact that the people who stuck their nose into my allowed indulgences did not care about me nearly as much as the people who actually cared and knew I was capable of managing my own diet.
If you meet an overweight person, do you begin conversation by telling them to eat less? If not, why don't you? They obviously get too much calories and may benefit from your advice. And they can always tell you to stop giving them advice if they don't like it.
Seriously, some people have no common sense and/or are just arrogant. Jumping into a situation where you have minimal information and assuming to know best is the hallmark of a fool.
Seriously, some people have no common sense and/or are just arrogant. Jumping into a situation where you have minimal information and assuming to know best is the hallmark of a fool.
How is it that you know that for a fact?
Edit: Please don't downvote a clear question. The truth is, you can't know another's intentions in most cases. It's very possible parent does know them in these cases for other circumstantial reasons. In which case I'd ask, how do you know that extrapolated to everyone else who asks those same questions?
Edit: Please don't downvote a clear question. The truth is, you can't know another's intentions in most cases. It's very possible parent does know them in these cases for other circumstantial reasons. In which case I'd ask, how do you know that extrapolated to everyone else who asks those same questions?
> Just so you know, you're effectively complaining that people care about you too much
I'm sure someone cares, but the majority of such folks? Nope.
I was once watching a crappy move, but it had one gem in it. The protagonist had lost the use of his leg in the Civil war, and he sought compensation for it, and received a lot easier than expected. Throughout the movie, he keeps wondering why it was so easy to get the money - he expected a fight. Towards the end, the revelation hit. They didn't pay him because they cared about him. They did it because they wanted to feel better about themselves. They did it so that they could walk away feeling tall.
And so it is with most advice: They do it because it makes them feel like they've done a good deed, and who knows - someone may even benefit from it? If they didn't, then no harm done.
That last sentence is quite wrong, though.
After hearing this, I got fairly good at figuring out who is trying to help vs who is trying to walk away tall. A little extra engagement with the person can usually reveal this.
I've learned from enough experience - both in giving and in receiving advice - that when you try to help someone, you should take on the burden on yourself. It becomes your responsibility to understand the pain points of the other person, know what he's tried, etc. This is exactly what random advice typically isn't. It's well known that saying "I had a similar problem" and talking about it is not empathizing[1]
One of the worst jobs I had involved a very knowledgeable person who would try to give advice whenever I was stuck. His advice often didn't work because he didn't understand the problem well, and made assumptions, etc. Every time he tried to help it was a huge time sink - to the point that I would mention my problems only when he wasn't around. Not exactly analogous to this situation, except to point out that this person never really understood the burden of helping someone. When you help someone, work with the person till the problem is resolved (or till you can't help). He failed as a teammate because of this.
(For those who recognize the movie - yes, I am taking liberties).
[1] Seriously - this is standard advice you'll find everywhere: When someone tells you their problems, do not respond with how similar your problems were - took me years to understand why.
I'm sure someone cares, but the majority of such folks? Nope.
I was once watching a crappy move, but it had one gem in it. The protagonist had lost the use of his leg in the Civil war, and he sought compensation for it, and received a lot easier than expected. Throughout the movie, he keeps wondering why it was so easy to get the money - he expected a fight. Towards the end, the revelation hit. They didn't pay him because they cared about him. They did it because they wanted to feel better about themselves. They did it so that they could walk away feeling tall.
And so it is with most advice: They do it because it makes them feel like they've done a good deed, and who knows - someone may even benefit from it? If they didn't, then no harm done.
That last sentence is quite wrong, though.
After hearing this, I got fairly good at figuring out who is trying to help vs who is trying to walk away tall. A little extra engagement with the person can usually reveal this.
I've learned from enough experience - both in giving and in receiving advice - that when you try to help someone, you should take on the burden on yourself. It becomes your responsibility to understand the pain points of the other person, know what he's tried, etc. This is exactly what random advice typically isn't. It's well known that saying "I had a similar problem" and talking about it is not empathizing[1]
One of the worst jobs I had involved a very knowledgeable person who would try to give advice whenever I was stuck. His advice often didn't work because he didn't understand the problem well, and made assumptions, etc. Every time he tried to help it was a huge time sink - to the point that I would mention my problems only when he wasn't around. Not exactly analogous to this situation, except to point out that this person never really understood the burden of helping someone. When you help someone, work with the person till the problem is resolved (or till you can't help). He failed as a teammate because of this.
(For those who recognize the movie - yes, I am taking liberties).
[1] Seriously - this is standard advice you'll find everywhere: When someone tells you their problems, do not respond with how similar your problems were - took me years to understand why.
I know exactly what you mean. This one time, I was talking with this guy and he wouldn't stop going on and on... Just kidding :)
I really like this story. It's definitely a tell when somebody only wants to help when it's easy and gives up right away. Although, that can also be a factor of them realizing that helping is beyond their ability, which can be different from not caring.
I think maybe a better tell is, how much time do they spend asking questions, versus giving "advice". Listening is nice but not always impactful. Talking is cheap and often irrelevant. But a good question can change your entire worldview. Or better yet, make you change your own worldview.
Did your coworker help everyone in this way, or was it just you?
I really like this story. It's definitely a tell when somebody only wants to help when it's easy and gives up right away. Although, that can also be a factor of them realizing that helping is beyond their ability, which can be different from not caring.
I think maybe a better tell is, how much time do they spend asking questions, versus giving "advice". Listening is nice but not always impactful. Talking is cheap and often irrelevant. But a good question can change your entire worldview. Or better yet, make you change your own worldview.
Did your coworker help everyone in this way, or was it just you?
In that case it is modern medicine that is woo-woo since we had dietary treatments for serval things before we had medications for it, like for epilepsy.
Yes, excessive body fat is known to cause sleep apnea. It's not the only cause.
I had to go through jaw surgery. It was worth it.
I had to go through jaw surgery. It was worth it.
Neither exercise nor meditation worked for me, but very intense throat exercises alleviated the condition. I also took up singing. Now, I daily follow a 5 minute intense throat exercise before going to beg until my neck and throat aches. Only then I hit the pillow.
People suffering from sleep apnea seem to have bad throat muscles and big tongues.
People suffering from sleep apnea seem to have bad throat muscles and big tongues.
Sounds right to me.
Also if I’m in a flare, those items will swell noticeably
Also if I’m in a flare, those items will swell noticeably
Would you mind sharing the excersises that helped?
The most helpful one is making the top of your tongue meet the roof of your mouth and pulling it backward as far as you are able. Simultaneously move your jaw down forcing it as much down as possible slowly, while not losing roof-tongue contact.
Hold the stretch, repeat the same for a couple of minutes and your muscles will ache. This also unclogs your sinus, so don't be surprised if you need to swallow or clear your nose. Also, don't do the full stretch at the first try. Warm up a bit first.
There are several others, but take too much time to describe here. You can research online. This is not obscure information. My doctor gave me a writeup. Please note they take a few days to take effect. Personally, I found them effective within a week, but YMMV.
Singing also helps - less effective but more fun (well, for you, if not others who will wince).
Hold the stretch, repeat the same for a couple of minutes and your muscles will ache. This also unclogs your sinus, so don't be surprised if you need to swallow or clear your nose. Also, don't do the full stretch at the first try. Warm up a bit first.
There are several others, but take too much time to describe here. You can research online. This is not obscure information. My doctor gave me a writeup. Please note they take a few days to take effect. Personally, I found them effective within a week, but YMMV.
Singing also helps - less effective but more fun (well, for you, if not others who will wince).
I am interested in researching it online, but what search terms should I use? I've never heard of this before. Thank you.
sleep apnea exercises. Additionally, sinus clear exercises will help if your nose is blocked.
https://www.sleepfoundation.org/articles/mouth-exercises-to-... https://www.cpap.com/blog/exercises-alleviate-sleep-apnea/ https://www.southfloridasinusandallergy.com/14-convenient-ex...
https://www.sleepfoundation.org/articles/mouth-exercises-to-... https://www.cpap.com/blog/exercises-alleviate-sleep-apnea/ https://www.southfloridasinusandallergy.com/14-convenient-ex...
I had it too. I finally got double jaw surgery. And changed to sleeping on my side.
In my case I had to tell people because I was quitting my job to have the procedure done. Some opinions from people in the healthcare field (nurses, etc) said I didn't need surgery because I wasn't overweight or old. Well they weren't maxillofacial surgeons.
In my case I had to tell people because I was quitting my job to have the procedure done. Some opinions from people in the healthcare field (nurses, etc) said I didn't need surgery because I wasn't overweight or old. Well they weren't maxillofacial surgeons.
Counter-point: the number of people with a sleep disorder who are determined to try every folk remedy they can get their hands on before seeing an actual doctor
While we're getting things off chests. I have a condition that's barely a condition; it causes minor, barely pain but it's always there. The problem for me is I am also pre-disposed to catastrophizing and that makes everything worse. My problem is as much (if not more) mental as it is physical. I've received help on both ends (for physical and mental health) but eight months of living with this discomfort and I can't help but think that it's forever, will never go away and in fact will get worse. I fear that the physical activities I love will disappear from life and that I won't be able to play with my kids.
Perhaps it's nothing more than future snakeoil but claims that humans will be able to CRISPR pain signals away in the not too distant future gives me hope. Opiates scare the living sh*t out of me.
I love Scott, I've followed and read him for a long time. From his involvement in the diabetes community and his glucose tracking projects, to advocating for .NET and MS, and just opening doors for others, it's clear he's a wonderful person.
From his posts, he's got an amazing family and I wish him and them all the best.
Perhaps it's nothing more than future snakeoil but claims that humans will be able to CRISPR pain signals away in the not too distant future gives me hope. Opiates scare the living sh*t out of me.
I love Scott, I've followed and read him for a long time. From his involvement in the diabetes community and his glucose tracking projects, to advocating for .NET and MS, and just opening doors for others, it's clear he's a wonderful person.
From his posts, he's got an amazing family and I wish him and them all the best.
I know the feeling. The most annoying discussions in my experience go something like this:
"Why aren't you coming to the company party?"
"Because that would likely exacerbate my chronic headache and I might be unable to work for several days."
"Oh wow, is it that bad? Have you tried acupuncture? My cousin had a headache and that really helped..." And a few minutes later: "Come on, the party will be fun, how bad could it be?"
I've learned to manage my condition well enough that people generally don't notice any problems. I've probably tried any remedies you can come up with, and so far the best way to cope is to live a boring life and go to bed at the same time every night after a peaceful evening. But because I'm not writhing in pain during the conversation, some people seem to think that I'm just coming up with excuses to not come to their party or whatever they are asking me to do.
"Why aren't you coming to the company party?"
"Because that would likely exacerbate my chronic headache and I might be unable to work for several days."
"Oh wow, is it that bad? Have you tried acupuncture? My cousin had a headache and that really helped..." And a few minutes later: "Come on, the party will be fun, how bad could it be?"
I've learned to manage my condition well enough that people generally don't notice any problems. I've probably tried any remedies you can come up with, and so far the best way to cope is to live a boring life and go to bed at the same time every night after a peaceful evening. But because I'm not writhing in pain during the conversation, some people seem to think that I'm just coming up with excuses to not come to their party or whatever they are asking me to do.
I'm in a fair bit of constant pain from Ehlers-Danlos syndrome, and what's helped me is finding support groups of the "life hacks" variety.
Everyone in the group has EDS or is a caretaker, so they "get" it. It's consent-oriented because people won't give you advice unless you post asking for it. It doesn't turn into a pity party because the forum is about asking questions and getting answers. The post history has everything from wheelchair tips to relocating joints. Direct medical advice is banned, only suggestions of what to ask doctors are allowed. It's nice.
Sometimes I really want somewhere I can scream into the void about my pain and degeneration though. I'm not sure of a psychologically-healthy way to scratch that itch.
Everyone in the group has EDS or is a caretaker, so they "get" it. It's consent-oriented because people won't give you advice unless you post asking for it. It doesn't turn into a pity party because the forum is about asking questions and getting answers. The post history has everything from wheelchair tips to relocating joints. Direct medical advice is banned, only suggestions of what to ask doctors are allowed. It's nice.
Sometimes I really want somewhere I can scream into the void about my pain and degeneration though. I'm not sure of a psychologically-healthy way to scratch that itch.
EDS outright fucking sucks. I have EDS and Thoracic Outlet Syndrome likely caused by it. Also being treated for a recurring visualizable CSF leak.
Literally have to drive 3+ hours/fly for the majority of my major treatments so far.
Literally have to drive 3+ hours/fly for the majority of my major treatments so far.
Yup, I have TOS too. It's not too painful for me, but prevents me from lifting my arms for more than a minute or so. So far I've avoided most of the other common complications besides POTS and nerve stuff, and I've been managing okay with lots of PT and bracing.
Hang in there, I hope they can patch your leak!
Hang in there, I hope they can patch your leak!
Just in case you're not aware, a pretty cool dude named Dr. Ian Carroll has been finding that a fairly substantial amount of POTS cases in EDS end up being a CSF leak, even though sometimes quite miniscule and very hard to identify. Not to say that POTS and EDS aren't a thing though. Very much is.
I was initially thought to just be suffering from POTS by some pretty well respected docs at Cleveland Clinic, but there were some outlying symptoms that just didn't add up. Ended up getting to see Dr. Carroll at Stanford and Dr. Wouter Schievink at Cedars-Sinai and they were able to visualize a leak, still in the process of trying to get blood/glue injections to work until I get through TOS surgery. After that it may end up coming to surgery for CSF as well.
Also, I hate to sound pessimistic but just want to try to give advice - from what I've heard anecdotally, TOS will slowly progress, especially in those with EDS. The younger you have surgery, the better the outcome as well. I tried to stick it out with some pretty seriously targeted physical therapy and bracing until I was 20 but shit just kinda hit the fan and I've had to opt for surgery.
There are 5-10 surgeons in the U.S. that are at the point of having really great outcomes, most notably Dr. Dean Donahue at MGH. I waited like 9 months to initially consult with him. As much as I loathe Facebook, here are some great groups with regards to knowledge of good surgeons if you ever decide to pursue that route. A bad surgeon for TOS is definitely a bit of a death sentence.
https://m.facebook.com/groups/15231937182
https://m.facebook.com/groups/205345126171314
P.S., apparently there's been a good amount of POTS cases induced by COVID-19 and not responding well to treatment. Doctor at Cleveland Clinic mentioned it to me, said they were a bit dumbfounded. Will definitely be interesting to see how things play out long-term, will hopefully end up giving POTS some more awareness it deserves. Also, I have great hope in Neuralink for EDS pain in the future. Hopefully.
I was initially thought to just be suffering from POTS by some pretty well respected docs at Cleveland Clinic, but there were some outlying symptoms that just didn't add up. Ended up getting to see Dr. Carroll at Stanford and Dr. Wouter Schievink at Cedars-Sinai and they were able to visualize a leak, still in the process of trying to get blood/glue injections to work until I get through TOS surgery. After that it may end up coming to surgery for CSF as well.
Also, I hate to sound pessimistic but just want to try to give advice - from what I've heard anecdotally, TOS will slowly progress, especially in those with EDS. The younger you have surgery, the better the outcome as well. I tried to stick it out with some pretty seriously targeted physical therapy and bracing until I was 20 but shit just kinda hit the fan and I've had to opt for surgery.
There are 5-10 surgeons in the U.S. that are at the point of having really great outcomes, most notably Dr. Dean Donahue at MGH. I waited like 9 months to initially consult with him. As much as I loathe Facebook, here are some great groups with regards to knowledge of good surgeons if you ever decide to pursue that route. A bad surgeon for TOS is definitely a bit of a death sentence.
https://m.facebook.com/groups/15231937182
https://m.facebook.com/groups/205345126171314
P.S., apparently there's been a good amount of POTS cases induced by COVID-19 and not responding well to treatment. Doctor at Cleveland Clinic mentioned it to me, said they were a bit dumbfounded. Will definitely be interesting to see how things play out long-term, will hopefully end up giving POTS some more awareness it deserves. Also, I have great hope in Neuralink for EDS pain in the future. Hopefully.
I'm 32 and, after previously being quite healthy, developed POTS after having gone through four years of chronic pain from a freak muscle spasm in my pec, chest and neck resembling TOS and continues to this day.
I've been seen at Stanford by Dr. Jaradeh in autonomic neurology, who found delayed orthostatic hypotension with sparing of the parasympathetics, caused by mild to moderate dysautonomia (the drop in blood pressure gives me orthostatic tachycardia; strictly speaking, this isn't POTS, which has no drop in blood pressure). I've got GI symptoms as well, plus widespread muscle tenderness, pain (and lately, burning sensation) to go with it (mostly in my calves and hips, but even in weird places like my jaw muscles). There seems to be no inflammatory cause, though, since rheumatological and inflammatory neuropathy workup has been strictly negative.
Now, I've never been diagnosed with EDS, although I am tall and thin enough to classify as borderline marfanoid habitus (I'm a couple inches longer in my arm span than my height.)
I'm pretty much at my wits end with what could be causing the POTS, though. As of now I am presuming it to be instigated by chronic pain radiating from the chest to the spine.
The really troublesome thing is my "TOS" doesn't really seem to be TOS at all, because although it continues to cause me great pain in the thoracic outlet area and pec, none of the diagnostic criteria for TOS show up when I do provocative tests like raising my arm. Instead I've been diagnosed by pain management as having intercostal neuralgia of the first rib and possible costochondritis. I can push my finger below my clavicle where it meets my sternum and elicit a lot of pain, which radiates to my pec. Earlier this summer I had a diagnostic nerve block in the intercostal area of the first rib, and it killed the pain locally (my neck and shoulder are still in a lot of pain).
As of now I am hoping a procedure I have scheduled to zap the first rib area will numb the pain long enough to do some kind of physical therapy consistent with what TOS patients do. The procedure is shy of RF ablation of the intercostal nerve, and is instead what's called pulsed RF neuromodulation, which doesn't quite melt the nerve, but is meant to interfere with the pain signals (much like TENS).
I've read in the literature that POTS has been seen in TOS patients. What's frustrating to me is that I am in about as much pain, but because as far as I can tell it's not actually TOS, I either don't need or don't want something like surgery. And yet here I am years later, having reassured myself that surgery wouldn't be indicated, but wound up with autonomic dysfunction / POTS anyway. In a way I regret simply not pursuing pain management earlier, and yet costocondritis isn't supposed to last this long from what I've read.
(I have never been referred to a TOS surgeon for evaluation, but I think about four doctors by now have had me do the provocative TOS measures, with negative results of course. A part of me thinks I should just self-refer anyway and have them at least do a TOS ultrasound to see what's going on.)
I've been seen at Stanford by Dr. Jaradeh in autonomic neurology, who found delayed orthostatic hypotension with sparing of the parasympathetics, caused by mild to moderate dysautonomia (the drop in blood pressure gives me orthostatic tachycardia; strictly speaking, this isn't POTS, which has no drop in blood pressure). I've got GI symptoms as well, plus widespread muscle tenderness, pain (and lately, burning sensation) to go with it (mostly in my calves and hips, but even in weird places like my jaw muscles). There seems to be no inflammatory cause, though, since rheumatological and inflammatory neuropathy workup has been strictly negative.
Now, I've never been diagnosed with EDS, although I am tall and thin enough to classify as borderline marfanoid habitus (I'm a couple inches longer in my arm span than my height.)
I'm pretty much at my wits end with what could be causing the POTS, though. As of now I am presuming it to be instigated by chronic pain radiating from the chest to the spine.
The really troublesome thing is my "TOS" doesn't really seem to be TOS at all, because although it continues to cause me great pain in the thoracic outlet area and pec, none of the diagnostic criteria for TOS show up when I do provocative tests like raising my arm. Instead I've been diagnosed by pain management as having intercostal neuralgia of the first rib and possible costochondritis. I can push my finger below my clavicle where it meets my sternum and elicit a lot of pain, which radiates to my pec. Earlier this summer I had a diagnostic nerve block in the intercostal area of the first rib, and it killed the pain locally (my neck and shoulder are still in a lot of pain).
As of now I am hoping a procedure I have scheduled to zap the first rib area will numb the pain long enough to do some kind of physical therapy consistent with what TOS patients do. The procedure is shy of RF ablation of the intercostal nerve, and is instead what's called pulsed RF neuromodulation, which doesn't quite melt the nerve, but is meant to interfere with the pain signals (much like TENS).
I've read in the literature that POTS has been seen in TOS patients. What's frustrating to me is that I am in about as much pain, but because as far as I can tell it's not actually TOS, I either don't need or don't want something like surgery. And yet here I am years later, having reassured myself that surgery wouldn't be indicated, but wound up with autonomic dysfunction / POTS anyway. In a way I regret simply not pursuing pain management earlier, and yet costocondritis isn't supposed to last this long from what I've read.
(I have never been referred to a TOS surgeon for evaluation, but I think about four doctors by now have had me do the provocative TOS measures, with negative results of course. A part of me thinks I should just self-refer anyway and have them at least do a TOS ultrasound to see what's going on.)
That sounds really frustrating and I think you've encapsulated what people who have these chronic conditions are feeling quite well.
It seems like when people with pain decide to share what they're going through, they aren't looking for solutions -- they just want people to know what's happening and that their experience in that moment is affected by it, and they want you to understand that.
I think this mindset is especially hard for people with a technical background to grasp because they are natural problem solvers and they will immediately switch to problem solving mode.
Instead of trying to solve the problem (which is not what the other person needs), they'll be able to connect better with the other person by empathising with them, validating what they are feeling and deferring to them for what to do next.
It seems like when people with pain decide to share what they're going through, they aren't looking for solutions -- they just want people to know what's happening and that their experience in that moment is affected by it, and they want you to understand that.
I think this mindset is especially hard for people with a technical background to grasp because they are natural problem solvers and they will immediately switch to problem solving mode.
Instead of trying to solve the problem (which is not what the other person needs), they'll be able to connect better with the other person by empathising with them, validating what they are feeling and deferring to them for what to do next.
Mix of both.
Went through massive medical problems. Zero support from doctors fo years.
I had to go into trail and error mode for years to start figuring out what was wrong, and what effected me.
All with an Exhaustion and pain level on par with a dying cancer patient. Oh and a comet brain fog.
Eventually found answers, several conditions that were inter-related. Uncommon response to most drugs the doctors tried.
If I hadn’t gone through this trial and error approach, I would not have lived through it all.
Went through massive medical problems. Zero support from doctors fo years.
I had to go into trail and error mode for years to start figuring out what was wrong, and what effected me.
All with an Exhaustion and pain level on par with a dying cancer patient. Oh and a comet brain fog.
Eventually found answers, several conditions that were inter-related. Uncommon response to most drugs the doctors tried.
If I hadn’t gone through this trial and error approach, I would not have lived through it all.
That's insanely rough, it's so hard to imagine that someone can go through all that and come out the other side. It even sounds like the doctors themselves were dismissive of you.
Maybe it's not so much that people aren't looking for solutions, but they don't want advice from people who haven't yet shown that they understand what they are going through/need?
Maybe it's not so much that people aren't looking for solutions, but they don't want advice from people who haven't yet shown that they understand what they are going through/need?
I wonder if it would help (bit nervous about this comment because it looks like giving advice, and I haven't had the frustration myself) to explicitly preface the sharing with an explicit request not to give advice?
I have been on the other end of that: when the father of a friend of mine passed away they explicitly said they did not want sympathy but instead to do something fun that night, and we did. Years later I still remember that because it felt somewhat as an eye-opener that people can just be that candid.
I have been on the other end of that: when the father of a friend of mine passed away they explicitly said they did not want sympathy but instead to do something fun that night, and we did. Years later I still remember that because it felt somewhat as an eye-opener that people can just be that candid.
I think it would probably help, it'd probably require that person to be pretty in touch with their needs (which seems like it could be pretty hard when you're already super frustrated and in pain).
It sounds like your friend was in touch enough to let you know how to help them and it sounds like you really connected that night. I wish people were more candid in general, but maybe people are a bit scared to ask for what they want?
It sounds like your friend was in touch enough to let you know how to help them and it sounds like you really connected that night. I wish people were more candid in general, but maybe people are a bit scared to ask for what they want?
Yes absolutely, and that is very difficult, but since the people in this thread were already articulating their needs, it looks like they have already acquired that skill?
(Of course, actually articulating those needs on the spot is yet another skill, so it's still easier said than done, but it might be worth focusing one's learning efforts on.)
(Of course, actually articulating those needs on the spot is yet another skill, so it's still easier said than done, but it might be worth focusing one's learning efforts on.)
At least they have in the confines of semi-anonymous HN :)
But yeah, some have some, haven't I'd say. And I agree with you 100%, it's extremely difficult, and much more difficult to do it on the spot. It feels like it's one of those skills that could take a lifetime to perfect.
But definitely agree that it's worth focusing one's efforts on as it seems like you'd get a lot more of what you want out of the world and other people.
But yeah, some have some, haven't I'd say. And I agree with you 100%, it's extremely difficult, and much more difficult to do it on the spot. It feels like it's one of those skills that could take a lifetime to perfect.
But definitely agree that it's worth focusing one's efforts on as it seems like you'd get a lot more of what you want out of the world and other people.
I occasionally limp due to a chronic condition. The last thing I want is any comments about it, because a few days later I might not. Unsolicited commentary is usually met with a sigh and a brush off, not telling the truth. The truth is I have built up defense mechanisms and anybody trying to point out my weaknesses can get a face full of their own by way of training watching Triumph the Insult Comic Dog.
"Mind your own business" is something that could use a little more respect now and then.
"Mind your own business" is something that could use a little more respect now and then.
This is rather off topic, but your post reminded me of it. In Uni, there was a professor who had a very pronounced limp. Whenever I saw him around, it was the only thing about him I'd notice.
In the 3rd year, we had a class with him. After the second lecture, I had so gotten accustomed to him that if you had asked me who the professor with the limp was, I would have honestly replied that I didn't know any professors like that. The fact that I had gotten to talk to him and see him teachn so I knew more about him than justn "has a limp" probably played a part.
I guess I have no point to make with this anecdote, take from it what you will.
In the 3rd year, we had a class with him. After the second lecture, I had so gotten accustomed to him that if you had asked me who the professor with the limp was, I would have honestly replied that I didn't know any professors like that. The fact that I had gotten to talk to him and see him teachn so I knew more about him than justn "has a limp" probably played a part.
I guess I have no point to make with this anecdote, take from it what you will.
Hello member of "limps occasionally" club.
For me it's syringomyelia which sometimes makes it extremely painful to put my foot down (best I can describe it is that feeling of hyper sensitivity you get after pins and needles where you don't want to move/touch your foot) but it's so variable that some days I walk normally, some days with a limp - I normally just tell people who notice that I sprained my ankle because it's easier than explaining what a syrinx is and that there isn't any cure beyond medication.
For me it's syringomyelia which sometimes makes it extremely painful to put my foot down (best I can describe it is that feeling of hyper sensitivity you get after pins and needles where you don't want to move/touch your foot) but it's so variable that some days I walk normally, some days with a limp - I normally just tell people who notice that I sprained my ankle because it's easier than explaining what a syrinx is and that there isn't any cure beyond medication.
Since so many posters can't seem to wrap their heads around what banana_giraffe is saying, let me try to put it in terms you can all understand:
Imagine you go to a cocktail party, tell someone that you're a software developer, and they immediately tell you that you should "do blockchain".
The next morning, you talk to your neighbor on the way out, mention that you work for a tech company, and they say "You should try this Rails thing!" "You mean Ruby on Rails?" "Oh, you've heard of it?"
Now imagine having variations of this conversation every single day, only it's about the intimate details of your personal life.
You wouldn't give career advice to a fellow developer without at least taking a moment to understand where they are in their career, or what their specialization is. Good advice for a junior developer writing WordPress plugins is not good advice for a mid-career embedded systems engineer, which is not good advice for a senior machine learning specialist.
Don't give advice to strangers about chronic medical conditions without first taking a few minutes to learn about their situation. If you're not comfortable asking about how long they've had the condition and what remedies they've already tried, then you're in no position to offer advice. It should go without saying that if the person doesn't want to discuss the details of their condition, then they don't want advice.
Context matters, people.
Imagine you go to a cocktail party, tell someone that you're a software developer, and they immediately tell you that you should "do blockchain".
The next morning, you talk to your neighbor on the way out, mention that you work for a tech company, and they say "You should try this Rails thing!" "You mean Ruby on Rails?" "Oh, you've heard of it?"
Now imagine having variations of this conversation every single day, only it's about the intimate details of your personal life.
You wouldn't give career advice to a fellow developer without at least taking a moment to understand where they are in their career, or what their specialization is. Good advice for a junior developer writing WordPress plugins is not good advice for a mid-career embedded systems engineer, which is not good advice for a senior machine learning specialist.
Don't give advice to strangers about chronic medical conditions without first taking a few minutes to learn about their situation. If you're not comfortable asking about how long they've had the condition and what remedies they've already tried, then you're in no position to offer advice. It should go without saying that if the person doesn't want to discuss the details of their condition, then they don't want advice.
Context matters, people.
What would you hope people do if you did tell them? My guess is "Damn that sounds awful. Let me know if I can help" and then dropping it entirely?
Pretty much. If you want to talk to me about what my symptoms are, and what I do to treat it, fine, I'm happy to discuss things most of the time, with the understanding that it's me telling you about my life experience, nothing more.
I know I'm coming off rude here, but the truth is, I don't want your advice on how to fix things, or worse, your advice that it's not as bad as I think it is, and that I can do whatever activity that I know will cause me problems tomorrow.
I know I'm coming off rude here, but the truth is, I don't want your advice on how to fix things, or worse, your advice that it's not as bad as I think it is, and that I can do whatever activity that I know will cause me problems tomorrow.
You're really not coming off as rude at all.
It's actually helpful. The bottom line is that I want to be supportive. And if I don't know how, I might make a guess at it and that guess might be the natural response of "try to help fix their problem."
It makes sense that you just don't want to hear that. I can empathize avec depression. Just listen to me and be patient with me. You can't fix this and it's kind of insulting that you try, as if I was too dumb to think up your idea.
(This also relates to software reviews too: I've spent a week on this problem. You suggesting I'm doing it wrong after five minutes of review can be really insulting)
It's actually helpful. The bottom line is that I want to be supportive. And if I don't know how, I might make a guess at it and that guess might be the natural response of "try to help fix their problem."
It makes sense that you just don't want to hear that. I can empathize avec depression. Just listen to me and be patient with me. You can't fix this and it's kind of insulting that you try, as if I was too dumb to think up your idea.
(This also relates to software reviews too: I've spent a week on this problem. You suggesting I'm doing it wrong after five minutes of review can be really insulting)
> I know I'm coming off rude here
On the contrary, this is excellent advice! I know I feel a tendency to want to share my knowledge with friends and family because I think it may help. I should know better, because I do not like being given advice, and yet I have a lot of trouble avoiding giving it myself. When I try, I am accused of being aloof or uninterested. A hard line to walk, keeping my mouth shut is enough work all by itself ;-)
On the contrary, this is excellent advice! I know I feel a tendency to want to share my knowledge with friends and family because I think it may help. I should know better, because I do not like being given advice, and yet I have a lot of trouble avoiding giving it myself. When I try, I am accused of being aloof or uninterested. A hard line to walk, keeping my mouth shut is enough work all by itself ;-)
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My employer had me go through training that had this video as part of the curriculum. Though I already understood the ideas, the video was still useful for me. It's less than 3 minutes long.
https://www.youtube.com/watch?v=1Evwgu369Jw
In short, sometimes people need connection to others; problem-solving mode isn't always the most useful path.
https://www.youtube.com/watch?v=1Evwgu369Jw
In short, sometimes people need connection to others; problem-solving mode isn't always the most useful path.
My wife once said to me, "I don't need an engineer I need my husband." And it clicked. She doesn't want a fix. She just wants a hand to hold and for me to hear her frustrations.
I can tell already that I do this and I should stop. My wife just hasn't said it yet.
I just always default to problem solving....
I just always default to problem solving....
It's hard, but you'll start seeing it in more people than just your wife. And once you become the person who sometimes knows to just listen instead of immediately trying to fix, people will like you more.
It’s not about the nail.
https://m.youtube.com/watch?v=-4EDhdAHrOg
https://m.youtube.com/watch?v=-4EDhdAHrOg
From my own chronic health issues, I think I just want pain to be seen and appreciated. Understand I need space/time to work on it. And whatever appropriate accommodations to be able to do my job.
That's actually fairly good, assuming you will actually try to help if the person asks for something specific. Since many people really can't help, you could also say:
"Damn that sounds awful. I hope you'll find a way to get better."
"Damn that sounds awful. I hope you'll find a way to get better."
Re the reactions to your pain, I think there is a belief deeply embedded in the American psyche that most any problem can be solved. And mentioning a difficult problem brings out this aspect.
In almost all cases, I like this quality and the underlying optimism it implies, but I also understand how it can be annoying and often come across as unconsciously insensitive.
Sometimes, expressions of sympathy are all that's needed or wanted.
In almost all cases, I like this quality and the underlying optimism it implies, but I also understand how it can be annoying and often come across as unconsciously insensitive.
Sometimes, expressions of sympathy are all that's needed or wanted.
Sorry to hear this. Mind if I offer a meta-woo remedy?
There are communities out there who value deep and non-judgmental listening. They recognize that it can be an act of aggression to offer unwanted advice. They have a healthy interest in others and know when to yield when it's really not their business to know.
If you could find such a community, you might feel better. You might feel understood.
There are communities out there who value deep and non-judgmental listening. They recognize that it can be an act of aggression to offer unwanted advice. They have a healthy interest in others and know when to yield when it's really not their business to know.
If you could find such a community, you might feel better. You might feel understood.
Most online support groups for medical conditions are terrible. I know a few principles that are constructive, but I don't know how to get traction with starting a community where people genuinely talk about useful information in a genuinely supportive fashion that's not invasive.
I'm agreeing with you, if that isn't apparent. This is a topic near and dear to my heart and I keep trying to figure it out and ...failing.
My Reddit has five members and no traffic, basically. I am stilling thinking on how one would position and promote such a thing.
(Edited for accuracy.)
I'm agreeing with you, if that isn't apparent. This is a topic near and dear to my heart and I keep trying to figure it out and ...failing.
My Reddit has five members and no traffic, basically. I am stilling thinking on how one would position and promote such a thing.
(Edited for accuracy.)
I think /r/cfs is a relatively good model and works fairly well and its counterpart forum phoenixrising also has similar qualities. They both have both been going through some growing pains of late with all the covid patients developing the condition but the rules and moderation is working well so far.
/r/covidlonghaulers on the other hand is busy working out how to exclude various people and becoming pretty hostile and I think shows one of the ways definitely not to do this.
/r/covidlonghaulers on the other hand is busy working out how to exclude various people and becoming pretty hostile and I think shows one of the ways definitely not to do this.
Thank you.
I have a form of cystic fibrosis, so a chronic fatigue group is unlikely to serve me well. Though I've "joined" and will keep my eye out for good ideas.
Many years ago, I joined an email list for parents of people with CF (yes, I also have a child with CF) and when I joined it was mostly prayer requests: "My child is facing X surgery. Please pray for us." and then outpourings of sympathy because people were so paralyzed with fear (because CF is really deadly and doctors can't fix it).
Under my influence as just a member, things gradually morphed into something more like "My child is facing X surgery. Have you or your loved one with CF had this surgery? Any pros or cons I should be aware of? What were your experiences?" and it was vastly better.
I managed to get this group to follow the principle that if you reply, you should tell your story and add new info and absolutely not get mired in the usual internet forum pattern of everyone arguing either for or against X. So if you had ten replies, you had about eight or so different personal stories and you could glean new and useful information of some sort from most of the replies without people competing over some sort of nonsense.
But the fact that I was the driving force behind that change helped make it really problematic for me to participate at all. Old timers who wanted to be the center of attention were jealous of me. I didn't want to be the center of attention and didn't yet know how to really successfully pull that off and being the person who had orchestrated those changes also made it very problematic that I had an explicit goal to not become some local "celebrity" and have everything revolve around me.
So I have firsthand experience with what works well for a health discussion group, I just don't know how to attract people to a health discussion group or how to position one from the get go as "We are here to talk in this way about health stuff rather than the usual BS for how online support groups usually work."
Most online support groups, whether health-related or not, are environments where it's really hard to talk about what actually works for fear of "blaming the victim" because, inevitably, some of the people with the worst problems are people who are their own worst enemy and it's never acceptable to in any way suggest or even imply that "maybe you should try not doing X." And that piece is something I don't have a solution for.
Health groups suffer the additional burden that pretty much everyone there is cranky and short tempered and feels awful. It's a pot constantly on the verge of boiling over at the slightest excuse and it's really hard to manage that element of it in a way that is fair and humane for all parties.
Plus there is inevitably a few people who are largely housebound and are trying to get their ego needs and social needs and so forth met through being "important" in some way to the group and these people inevitably need everyone to defer to their wisdom and agree with their ideas and they are often talented at gaining allies and so forth and the entire discussion ends up really revolving around this social nonsense and not really being about discussing health topics.
I set up a site called r/HealthWorks ages ago. I've tried repeatedly to figure out what to do with it and I remain stymied and that may never change because the truth is that I have spent nearly two decades getting healthier while the world calls me a liar and a teller of tales and accuses me of being mentally deranged, so there is no place it's really acceptable for me to talk about health stuff.
I've spent a lot of years trying to not end up like Semmelweis, who -- unlike me -- was an actual physician with actual studies to back up his crazy claim that doctors should sterilize their hands before delivering babies. Nonetheless, he ended up committed to an insane asylum where he was basically beaten to death in short order.
https://en.wikipedia.org/wiki/Ignaz_Semmelweis
I'm a former military wife and homemaker and had an entry level job with Aflac for a few years. The world is vastly less willing to listen to me than it was to Semmelweis to the point where I have been told that it is my fault people attack in me forums in violation of the supposed rules and I am the problem and I have been banned from more than one forum for the crime of just trying to talk about my life and trying to find some means to discuss health topics because my life literally depends upon my ability to seek out good information.
Hacker News has been the least worst place for that and even here I have had people attack me and tell me I deserve to be attacked for talking about "my cockamamie ideas" and that sort of thing. So it's not like it's some kind of safe zone for me, it's just a place that tolerates my presence to some degree and I can occasionally talk a little bit about health stuff, but it's really not adequate to my needs and the burden of this whole thing has taken a tremendous psychological toll on me.
I have a lot of baggage over the whole thing and I often feel like I am losing my marbles and that only makes me all the more unable to find some means to engage effectively in discussion of health topics.
So I don't have a solution, but I'm actually a talented moderator and I actually know a lot about fostering good discussion on health topics, I just have no means whatsoever to establish a group of people anywhere on planet earth who actually want to talk with the likes of me about health topics.
Most people have made it abundantly in-your-face super clear that if they must choose between slow, torturous death or being polite to me, they would much prefer slow, torturous death and I left all the CF lists I was on years and years ago.
I know exactly one person with CF who sometimes talks with me (edit: Other than my son, obviously). She hunted me down after I disappeared from all the lists because her number was up and she didn't want to die. As far as I know, she is still alive, though I haven't heard from her recently and she's now past the age of 40 -- which is quite old for classical CF -- so it's possible she's passed on and I'm just never going to be notified by anyone if/when she does die. ¯\_(ツ)_/¯
I have a form of cystic fibrosis, so a chronic fatigue group is unlikely to serve me well. Though I've "joined" and will keep my eye out for good ideas.
Many years ago, I joined an email list for parents of people with CF (yes, I also have a child with CF) and when I joined it was mostly prayer requests: "My child is facing X surgery. Please pray for us." and then outpourings of sympathy because people were so paralyzed with fear (because CF is really deadly and doctors can't fix it).
Under my influence as just a member, things gradually morphed into something more like "My child is facing X surgery. Have you or your loved one with CF had this surgery? Any pros or cons I should be aware of? What were your experiences?" and it was vastly better.
I managed to get this group to follow the principle that if you reply, you should tell your story and add new info and absolutely not get mired in the usual internet forum pattern of everyone arguing either for or against X. So if you had ten replies, you had about eight or so different personal stories and you could glean new and useful information of some sort from most of the replies without people competing over some sort of nonsense.
But the fact that I was the driving force behind that change helped make it really problematic for me to participate at all. Old timers who wanted to be the center of attention were jealous of me. I didn't want to be the center of attention and didn't yet know how to really successfully pull that off and being the person who had orchestrated those changes also made it very problematic that I had an explicit goal to not become some local "celebrity" and have everything revolve around me.
So I have firsthand experience with what works well for a health discussion group, I just don't know how to attract people to a health discussion group or how to position one from the get go as "We are here to talk in this way about health stuff rather than the usual BS for how online support groups usually work."
Most online support groups, whether health-related or not, are environments where it's really hard to talk about what actually works for fear of "blaming the victim" because, inevitably, some of the people with the worst problems are people who are their own worst enemy and it's never acceptable to in any way suggest or even imply that "maybe you should try not doing X." And that piece is something I don't have a solution for.
Health groups suffer the additional burden that pretty much everyone there is cranky and short tempered and feels awful. It's a pot constantly on the verge of boiling over at the slightest excuse and it's really hard to manage that element of it in a way that is fair and humane for all parties.
Plus there is inevitably a few people who are largely housebound and are trying to get their ego needs and social needs and so forth met through being "important" in some way to the group and these people inevitably need everyone to defer to their wisdom and agree with their ideas and they are often talented at gaining allies and so forth and the entire discussion ends up really revolving around this social nonsense and not really being about discussing health topics.
I set up a site called r/HealthWorks ages ago. I've tried repeatedly to figure out what to do with it and I remain stymied and that may never change because the truth is that I have spent nearly two decades getting healthier while the world calls me a liar and a teller of tales and accuses me of being mentally deranged, so there is no place it's really acceptable for me to talk about health stuff.
I've spent a lot of years trying to not end up like Semmelweis, who -- unlike me -- was an actual physician with actual studies to back up his crazy claim that doctors should sterilize their hands before delivering babies. Nonetheless, he ended up committed to an insane asylum where he was basically beaten to death in short order.
https://en.wikipedia.org/wiki/Ignaz_Semmelweis
I'm a former military wife and homemaker and had an entry level job with Aflac for a few years. The world is vastly less willing to listen to me than it was to Semmelweis to the point where I have been told that it is my fault people attack in me forums in violation of the supposed rules and I am the problem and I have been banned from more than one forum for the crime of just trying to talk about my life and trying to find some means to discuss health topics because my life literally depends upon my ability to seek out good information.
Hacker News has been the least worst place for that and even here I have had people attack me and tell me I deserve to be attacked for talking about "my cockamamie ideas" and that sort of thing. So it's not like it's some kind of safe zone for me, it's just a place that tolerates my presence to some degree and I can occasionally talk a little bit about health stuff, but it's really not adequate to my needs and the burden of this whole thing has taken a tremendous psychological toll on me.
I have a lot of baggage over the whole thing and I often feel like I am losing my marbles and that only makes me all the more unable to find some means to engage effectively in discussion of health topics.
So I don't have a solution, but I'm actually a talented moderator and I actually know a lot about fostering good discussion on health topics, I just have no means whatsoever to establish a group of people anywhere on planet earth who actually want to talk with the likes of me about health topics.
Most people have made it abundantly in-your-face super clear that if they must choose between slow, torturous death or being polite to me, they would much prefer slow, torturous death and I left all the CF lists I was on years and years ago.
I know exactly one person with CF who sometimes talks with me (edit: Other than my son, obviously). She hunted me down after I disappeared from all the lists because her number was up and she didn't want to die. As far as I know, she is still alive, though I haven't heard from her recently and she's now past the age of 40 -- which is quite old for classical CF -- so it's possible she's passed on and I'm just never going to be notified by anyone if/when she does die. ¯\_(ツ)_/¯
Thank you for your comment, it was really illuminating. I work for a company that is starting clinical trials for a new type of CF treatment. Let me know if you'd like any info.
I'm guessing that would be some drug trial or other and I am off all drugs and much happier that way. I'm guessing "any info" would be "how to try to get in on the trial" and not "this is what we are trying and what our hypothesis is."
So we probably have nothing to really talk about.
So we probably have nothing to really talk about.
It's whatever your interested in learning about. Honestly no pressure. I am from the scientific side, so I don't worry about trial enrolment.
You can drop me an email if you want to talk. Gmail: doreenmicheletraylor
Honestly, thanks for that.
The last community I joined ended poorly when I didn't, err, react well to the advice that I try going to church more.
I do need to work on my mental health side, and a community is a good way. I'll dig into that.
The last community I joined ended poorly when I didn't, err, react well to the advice that I try going to church more.
I do need to work on my mental health side, and a community is a good way. I'll dig into that.
Just want to voice my support. I deal with that too, and it’s almost as tiring as the pain some days.
You are at the borders of accepted medical science and facing the woods now, having exhausted the usually-accepted and documented approaches. You have two choices:
a) turn your back on the woods and return back to the usually-accepted and documented approaches and try them and their variations again or
b) continue in the unexplored woods.
For (b) to work you must try everything you hear. But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself.
But if you continue into the woods, it is the "Auntie" remedy, the anecdotal, the accidental personal discovery that will finally help you. IOW you have no choice: open up and listen to the "woo remedies" for there is nothing else for you, having exhausted what is "known". And when you find the remedy, no one will hear you speak of it, since it will be "anecdotal".
"There are more things in Heaven and Earth, Horatio, than are dreamt of in your philosophy.' - William Shakespeare
a) turn your back on the woods and return back to the usually-accepted and documented approaches and try them and their variations again or
b) continue in the unexplored woods.
For (b) to work you must try everything you hear. But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself.
But if you continue into the woods, it is the "Auntie" remedy, the anecdotal, the accidental personal discovery that will finally help you. IOW you have no choice: open up and listen to the "woo remedies" for there is nothing else for you, having exhausted what is "known". And when you find the remedy, no one will hear you speak of it, since it will be "anecdotal".
"There are more things in Heaven and Earth, Horatio, than are dreamt of in your philosophy.' - William Shakespeare
Ok, I've been disconnected from this discussion for a while, but I can't pass this comment by.
> But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself.
I do not want to live in pain. I continue to try things. I've lived with this condition longer than you might guess, and I have a few lifetimes of things left to try. I know some things that will help, so I do that for now, but I have no end of things to try in the future.
Stop assuming you know what's in my backlog. Stop assuming you know I've given up. It's all just tiring. If I had a lack of ideas, I'd ask for help. If my doctors aren't helping, I'd fire them, I have fired doctors that don't help me. And I'm not opposed to firing all doctors and finding other sources, but for now the doctors are doing good for me, and the provide avenues that aren't available via other means. For now, they're helping, they're communicating with me, and working with me as I test things. I hope to one day get to the point of no pain at all, but I also need to be able to get to a place of managing the pain I do have, since it's possible, indeed probable with my condition, that that's the best I can hope for.
And in case it's not clear, I'm not exactly speaking directly to you. I'm speaking to the mythical person conglomerate that you fall into of people that talk to me like this. So many people seem to assume they know more about my condition with so much less information, including cases like this with basically no information. Please stop assuming you know more about my condition than me.
> But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself.
I do not want to live in pain. I continue to try things. I've lived with this condition longer than you might guess, and I have a few lifetimes of things left to try. I know some things that will help, so I do that for now, but I have no end of things to try in the future.
Stop assuming you know what's in my backlog. Stop assuming you know I've given up. It's all just tiring. If I had a lack of ideas, I'd ask for help. If my doctors aren't helping, I'd fire them, I have fired doctors that don't help me. And I'm not opposed to firing all doctors and finding other sources, but for now the doctors are doing good for me, and the provide avenues that aren't available via other means. For now, they're helping, they're communicating with me, and working with me as I test things. I hope to one day get to the point of no pain at all, but I also need to be able to get to a place of managing the pain I do have, since it's possible, indeed probable with my condition, that that's the best I can hope for.
And in case it's not clear, I'm not exactly speaking directly to you. I'm speaking to the mythical person conglomerate that you fall into of people that talk to me like this. So many people seem to assume they know more about my condition with so much less information, including cases like this with basically no information. Please stop assuming you know more about my condition than me.
Yeah I'm in the same situation and I just started lying to everyone and obtaining treatment illegally, buying prescriptions online and treating myself based on what I've read instead of waiting 6 months for a 15 minute appointment with a neurologist who not even going to look at my medical history. While I'm no closer to being out of pain, I'm getting treatment at a pace and quality I find appropriate and not getting bogged down being prescribed several subtle variations of the same type of medication.
I literally had years of being prescribed different types of SSRIs for "mood" when my real problem is dystonia. My doctor, a specialist, finally revealed she's not "allowed" by the insurance company to prescribe the anti-Parkinson drugs that I can easily buy with bitcoin.
I don't I know you don't want advice, but my advice is fuck it you may not be a doctor but you only live once.
I literally had years of being prescribed different types of SSRIs for "mood" when my real problem is dystonia. My doctor, a specialist, finally revealed she's not "allowed" by the insurance company to prescribe the anti-Parkinson drugs that I can easily buy with bitcoin.
I don't I know you don't want advice, but my advice is fuck it you may not be a doctor but you only live once.
One of the things I've learned, in as much as
I can, is I don't tell anyone. I'd rather be
rude than explain I'm in pain
I learned to communicate my needs to people, instead of my diagnosis. Example: "I have trouble focusing on my work in crowded areas - could I work in [some other location] when I'm not pairing?" instead of "I can't work here, I have ADHD." (Not that I ever put it that way, but you know what I mean)
But pain is a different story. I don't know how you would even explain that to people without getting all of the unwanted and unhelpful advice...
What I found was that people cannot relate to individuals with chronic pain or illness.
If the person talks about it most will interpret that as complaining or having negative view on life.
It’s quite hard for me to watch as my loved ones get rejected by people in their environment if they sometimes mention their pain.
My advice is always to just not talk about it. I feel like most people today just don’t have the capacity to be emphatic, instead they give advice and get hurt when the advice isn’t accepted, accusing you of being negative and not accepting “help”.
If the person talks about it most will interpret that as complaining or having negative view on life.
It’s quite hard for me to watch as my loved ones get rejected by people in their environment if they sometimes mention their pain.
My advice is always to just not talk about it. I feel like most people today just don’t have the capacity to be emphatic, instead they give advice and get hurt when the advice isn’t accepted, accusing you of being negative and not accepting “help”.
When my Chrohn's flares I just want to be left alone.
I don't need your advice on something you don't understand and can't comprehend, just let me do me.
Work has no idea that I even have Chrohn's because it doesn't affect my job performance and I cover it well.
Peoples perceptions of you change when they know you have a long term chronic condition and it isn't always a positive change - I don't think it's conscious but it does happen so to avoid it, I just don't tell people.
I don't need your advice on something you don't understand and can't comprehend, just let me do me.
Work has no idea that I even have Chrohn's because it doesn't affect my job performance and I cover it well.
Peoples perceptions of you change when they know you have a long term chronic condition and it isn't always a positive change - I don't think it's conscious but it does happen so to avoid it, I just don't tell people.
Thank you for saying this. I've experienced the same thing. Like you, I seldom mention my chronic pain as a result. You're right, it's exhausting.
I try to remind myself that it's more about the other person's insecurities than my own pain, and I try to be gracious. Sometimes I still snap at people who don't take the hint.
I try to remind myself that it's more about the other person's insecurities than my own pain, and I try to be gracious. Sometimes I still snap at people who don't take the hint.
People do the same stuff with my vision loss. I have usher's syndrome, it's not curable right now but everyone has some answer for me. Of course I don't want to go blind, so yes, I have researched options and studies, thank you.
I can empathize. I have had doctors mock and scoff at my RSI related pains, and people who don't understand computer usage-related injuries give me all sorts of well-meaning advice.
I've stopped going to docs and listening to such people, and instead focused on overall strengthening. This strategy is mostly based on what kind folks at HN have shared in various threads as having worked for their RSI, and suffice to say, it has helped (not cured) much more than any other advice.
As a former marathon runner, I tend to stick to the adage "listen to your own body" along with medical advice.
I've stopped going to docs and listening to such people, and instead focused on overall strengthening. This strategy is mostly based on what kind folks at HN have shared in various threads as having worked for their RSI, and suffice to say, it has helped (not cured) much more than any other advice.
As a former marathon runner, I tend to stick to the adage "listen to your own body" along with medical advice.
Good luck. I hope things take a turn for the better.
This is terrible advice.
I ended three decades of migraines by following advice that they were triggered by food allergies to gluten and corn.
I ended three decades of migraines by following advice that they were triggered by food allergies to gluten and corn.
I understand because I have been on both sides of this. Unless people are really pushy and persistent about their advice I take it as well-meaning empathy -- one of the few redeeming qualities of human beings. Otherwise, to the advice giver, it comes across as being shouted and yelled at when all you did is hold the door for a person.
I hear you on not wanting the advice of others. I've also heard the flip side - where people had lived with pain for so long then somebody (my partner is a physical therapist) tells them something or teaches them something that changes their life and they wish they'd pursued it sooner.
I have to admit, one of my thoughts was 'Is there anything I can recommend'.
I get that. I'm like that too. If I see a problem, I want desperately to try and help fix it.
This has absolutely taught me that sometimes the best answer is "Wow, that really sucks. If you want to talk about it, let me know" and move on to some other subject.
This has absolutely taught me that sometimes the best answer is "Wow, that really sucks. If you want to talk about it, let me know" and move on to some other subject.
Yep. I try to be respectful by not suggesting common stuff since they would have already looked into. Sometimes I'll suggest looking into some less common things. There are many things that modern doctors won't suggest or don't know about.
For example, I'm an amateur mycologist and I have heard about health benefits of different mushrooms. If they don't want hear about the health aspect, the way I bring it up usually opens the door to a topic change about foraging for mushrooms, eating them, and many related questions.
In this case, I don't know of anything that would help frozen shoulder. There is some stuff that I find interesting to talk about but don't think it is worth suggesting to him. Like some studies on pain management that I barely remember, but I don't know if it was on psilocybin or maybe LSD. The way my dumbed-down brain remembers it is that it basically causes a pain "reset" where in some cases the brain ignores the persistent pain signals, or lowers the perceived pain level. There is also grayanotoxin that comes from tincture of ghost pipes that alters how pain is perceived, but I think that is only temporary. Interesting thing is that ghost pipes are actually a plant that doesn't contain any chlorophyll, but feed off of the roots of other plants, somewhat similar to some mychorrizal fungi.
For example, I'm an amateur mycologist and I have heard about health benefits of different mushrooms. If they don't want hear about the health aspect, the way I bring it up usually opens the door to a topic change about foraging for mushrooms, eating them, and many related questions.
In this case, I don't know of anything that would help frozen shoulder. There is some stuff that I find interesting to talk about but don't think it is worth suggesting to him. Like some studies on pain management that I barely remember, but I don't know if it was on psilocybin or maybe LSD. The way my dumbed-down brain remembers it is that it basically causes a pain "reset" where in some cases the brain ignores the persistent pain signals, or lowers the perceived pain level. There is also grayanotoxin that comes from tincture of ghost pipes that alters how pain is perceived, but I think that is only temporary. Interesting thing is that ghost pipes are actually a plant that doesn't contain any chlorophyll, but feed off of the roots of other plants, somewhat similar to some mychorrizal fungi.
Plants such as ghost pipes (saprophytes) can be found in abundance, along with rhododendrons, along the Elbo Creek trail in the Olympic mountains of Washington state. https://www.wta.org/go-hiking/hikes/elbo-creek
I had a frozen shoulder. It didn't get nowhere near as bad as this article describes, although I did look at surgery, considered pain killers and had injections. After research I decided the surgery and pain killers were probably worse than the disease.
Things came to head when I was on holidays, in a hotel lying on a double bed getting some rest. The double was two singles pushed together. They moved apart, and my body fell between them but my arms unable to move remained on the beds, forcing my frozen shoulders to do things they didn't want to do. My wife saw the end result written on my face, and decided something had to be done. She traipsed between doctors, one of whom said I should see a physio.
After a couple of visits the physio said the pain was caused by muscles pulling the wrong way. The initial injury (a sprain caused by my throwing a barrel onto a truck) had triggered an avoidance mechanism, where my mind had learnt all sorts of tricks to avoid triggering the pain. The result was atrophied muscles in some places, overworked ones in others. He gave me a few elastic bands, toys really, and exercises using them.
The exercises weren't particularly onerous - nothing as tiresome as a 5k jog for instance. Just 10 or 15 minutes each morning. To say I was dubious was an understatement, but I was paying for it and the discipline I force on myself to is either stop paying or do as the man says.
It took 6 months. But it was gone. Now it is as if it was never there. I've never looked at a physio in the same way again.
Things came to head when I was on holidays, in a hotel lying on a double bed getting some rest. The double was two singles pushed together. They moved apart, and my body fell between them but my arms unable to move remained on the beds, forcing my frozen shoulders to do things they didn't want to do. My wife saw the end result written on my face, and decided something had to be done. She traipsed between doctors, one of whom said I should see a physio.
After a couple of visits the physio said the pain was caused by muscles pulling the wrong way. The initial injury (a sprain caused by my throwing a barrel onto a truck) had triggered an avoidance mechanism, where my mind had learnt all sorts of tricks to avoid triggering the pain. The result was atrophied muscles in some places, overworked ones in others. He gave me a few elastic bands, toys really, and exercises using them.
The exercises weren't particularly onerous - nothing as tiresome as a 5k jog for instance. Just 10 or 15 minutes each morning. To say I was dubious was an understatement, but I was paying for it and the discipline I force on myself to is either stop paying or do as the man says.
It took 6 months. But it was gone. Now it is as if it was never there. I've never looked at a physio in the same way again.
Very interesting. I'm glad it turned out well for you.
I have impingement syndrome in one shoulder and it flairs up every once in a while. That shoulder has never been the same since the injury, but it's not nearly as painful or debilitating as I hear frozen shoulder is. I should probably do exercises/stretches more often so it doesn't flair up or get worse.
I have impingement syndrome in one shoulder and it flairs up every once in a while. That shoulder has never been the same since the injury, but it's not nearly as painful or debilitating as I hear frozen shoulder is. I should probably do exercises/stretches more often so it doesn't flair up or get worse.
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It's human nature. People like to offer solutions, particularly if they frequently see a loved one vent. Venting isn't free. So like you, I learned to stop sharing my pain in most cases.
The main thread is that people that tell you about their pains just want you to hear them, not solve their problems. They want empathy by being a good listener and just acknowledge with empathy
When I tell people I'm in pain (or similar), I'm usually trying to convey "Hey, sorry I am not at my best. I'm not trying to be rude. I'm not trying to bark at you. If I'm failing to get all the info, it's not for lack of trying or being too lazy or disrespectful to pay attention. I'm just doing the best I can right now and the best I can isn't that great."
And that's usually not how it gets interpreted so I do a lot less of that than I used to do.
And that's usually not how it gets interpreted so I do a lot less of that than I used to do.
How ought one respond? I struggle with responding to challenges outside of offering "problem solving" solutions, or sympathetic noises. What would /actually help/?
It's different for different people, so the answer is, find out what the other person wants and give that.
In my case, give me nothing, no sympathy, no opportunities to talk, no anything. I deal with stuff by not thinking about it, tuning it out. If someone tries to 'help' with suggestions, they're forcing me think about it and the huge chunk of my life I've lost to it. That hurts deeply.
So, find out first. If someone wants to talk they will, if not, don't bring it up.
Generally speaking, don't offer fucking stupid suggestions ("have you seen a doctor?"). Don't tell me repeatedly doing X is the right thing to do when I know it will make things worse (happens rarely but is very annoying).
Don't offer me psychic healing, or offer to pray for me (unless you've found that that person is open to that. I am not and it will infuriate me).
HTH!
In my case, give me nothing, no sympathy, no opportunities to talk, no anything. I deal with stuff by not thinking about it, tuning it out. If someone tries to 'help' with suggestions, they're forcing me think about it and the huge chunk of my life I've lost to it. That hurts deeply.
So, find out first. If someone wants to talk they will, if not, don't bring it up.
Generally speaking, don't offer fucking stupid suggestions ("have you seen a doctor?"). Don't tell me repeatedly doing X is the right thing to do when I know it will make things worse (happens rarely but is very annoying).
Don't offer me psychic healing, or offer to pray for me (unless you've found that that person is open to that. I am not and it will infuriate me).
HTH!
Oh man, this was the case for my (former) sleep disorder. I appreciate the suggestions, but trust me, if you'd heard of it, it's something I'd tried a few years ago.
Jordan Peterson talks about this: Trying to help someone, when you aren’t in any real professional position to, is a good way to put both people in a very dark place.
I am very, very familiar with this exact feeling. Hopefully at least those who are close to you understand this a little better and support in better ways.
I am exactly the same way. When people ask, I just say "I'm doing ok." and that is usually the end of the asking.
Hear, hear! Well put. That goes for small things like colds, too, which despite science everyone seems to have a cure for.
Do you mind sharing what diagnosis/labels you've been given as possible or confirmed causes? Do you know or suspect any specific cause(s)?
Edit to add: asking a question, if they're willing to answer - they don't have to, in case someone might know of a treatment or research they're not aware of yet, warrants being asked - unless we as a society want to be weak, shy, disengaged, and isolated in our suffering.
Edit to add: asking a question, if they're willing to answer - they don't have to, in case someone might know of a treatment or research they're not aware of yet, warrants being asked - unless we as a society want to be weak, shy, disengaged, and isolated in our suffering.
That sounds like the sort of question which OP may consider exhausting. And frankly I don't think the answer would add to the discussion.
There exists many chronic conditions which cause pain.
There exists many chronic conditions which cause pain.
No, they said people offering unsolicited advice is exhausting. Them posting in a thread about pain, along with saying they’ll read research if people have it - even “If you have research, fine, I'll read it. One day. Maybe months from now.” - says they are open to it. You have no idea if them answering would add to the discussion - quite arrogant of you. Not sure why you’re coddling. My asking questions isn't the same as offering unsolicited advice.
Too bad for those of us who weren't gonna say that stuff and just end up wondering forever why you were rude.
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Ah, people are just trying to relate and help. I get that it's frustrating, though.
Care by simply expressing someone wasn’t in pain is enough. No need to try to be the fixer.
Right, right. Just explaining. Not justifying.
And it’s not always wrong to try to help like that. But just want to give people another option.
At the risk of being a jerk: Have you read the book The Mindbody Prescription by Dr. Sarno? [1]
I sound like an infomercial pitchman but that book changed my life. I had a massive structural issue that was either going mean a knee replacement or dealing with "you won't walk right ever again". Well, it turns out there was a third option.
[1] https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?...
It sounds woo, I know. I was so fucking tired of people giving me their quack advice too. This was the one thing that made sense. And it literally changed my life.
I sound like an infomercial pitchman but that book changed my life. I had a massive structural issue that was either going mean a knee replacement or dealing with "you won't walk right ever again". Well, it turns out there was a third option.
[1] https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?...
It sounds woo, I know. I was so fucking tired of people giving me their quack advice too. This was the one thing that made sense. And it literally changed my life.
I was completely ready for that book to change my life after reading so many glowing testimonials. It did nothing, though I felt worse after reading it a few times, because it was supposed to be so transformative.
I guess the mind-body prescription isn't prescribed for celiac disease or my other health issues, because finding out that I had those conditions was the key, not Dr. Sarno's advice.
I guess the mind-body prescription isn't prescribed for celiac disease or my other health issues, because finding out that I had those conditions was the key, not Dr. Sarno's advice.
Sarno's book didn't help me either. I wasn't even sure what the point was, until I watched a documentary called "All the Rage" (available on Amazon Prime in the US) on Sarno and his method, which at least clarified the whole thing for me.
One of the things Sarno advises before taking him on is that every other medical condition that could possibly be relevant has been investigated and ruled out.
One of the things Sarno advises before taking him on is that every other medical condition that could possibly be relevant has been investigated and ruled out.
I think you're being unnecessarily dismissive of good, reliable information coming your way.
Anecdotal advice is some of the most reliable, trustworthy advice that we come across.
All those studies are affected by agendas from dozens of individuals and organizations, not to mention potentially poor procedure and general incompetence.
You're being gifted information which was transported to you graciously from an actual human being who maybe actually had your problem and found something useful to help with it.
I think if I were you, I would reconsider how you view these situations.
Anecdotal advice is some of the most reliable, trustworthy advice that we come across.
All those studies are affected by agendas from dozens of individuals and organizations, not to mention potentially poor procedure and general incompetence.
You're being gifted information which was transported to you graciously from an actual human being who maybe actually had your problem and found something useful to help with it.
I think if I were you, I would reconsider how you view these situations.
The only way to fix my ankle arthritis is to have the joint replaced, which is not ideal nor a consideration. Anything otherwise is not good, nor reliable information. It's kind of like me saying to you, "Hey, your advice is stupid, maybe you should go take some smart pills so you don't infect others" in seriousness, instead of as an off-hand reply gifting you with information graciously.
(With the disclaimer that I still think that unsolicited medical advice is kind of rude.)
If someone is giving you advice which worked for an unrelated condition, you're still ignoring useful information which may help someone you know if you actually bother to pay attention and remember it.
If someone is giving you advice for the same condition you have been diagnosed, you're taking information from authority figures (licensed doctors) over information from someone who is actually in the same boat as you, which seems foolish to me. Certainly un-hacker-like.
By the way, if you look at actual studies, results of surgery done for pain are not very encouraging -- less than half result in pain actually going away.
If someone is giving you advice which worked for an unrelated condition, you're still ignoring useful information which may help someone you know if you actually bother to pay attention and remember it.
If someone is giving you advice for the same condition you have been diagnosed, you're taking information from authority figures (licensed doctors) over information from someone who is actually in the same boat as you, which seems foolish to me. Certainly un-hacker-like.
By the way, if you look at actual studies, results of surgery done for pain are not very encouraging -- less than half result in pain actually going away.
Signal to noise, mate. This isn't like chat with coworkers over lunch, "have you taken thermal expansion of the turboencabulator into account?" where there's a high potential for novelty. Nay, 90% of these comments are:
Did you try (increasing exercise/water intake/sleep/just not sucking)? How about (decreasing gluten/carbs/aspartame/"toxins"/bogons)? it's just low-hanging fruit.
Did you try (increasing exercise/water intake/sleep/just not sucking)? How about (decreasing gluten/carbs/aspartame/"toxins"/bogons)? it's just low-hanging fruit.
You just saw somebody saying they've had too much advice, too many opinions from strangers on how to handle situations those strangers know nothing about. What made you think the best response was to assume you understand their situation and offer them advice?
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I’m dealing with chronic pain that’s bringing my current career to its end. I’m still unsure how active I’ll be able to be in the future due to it.
In my case it’s autoimmune; my body has decided it’s going to destroy itself from the inside out. Arthritis, psoriasis, GI issues. It’s getting worse fast enough that I’m being transferred to a hospital for care (Military, stationed overseas) and preparation for retirement.
I had a bad day yesterday; out taking care of errands to leave and everything flared. Sometimes there’s no discernible reason. It damned near floored me, but since I don’t have a vehicle I had to walk the couple kilometers back. It’s hard to describe how much ongoing pain changes who you are. It’s a constant struggle to not be an asshole because DAMNIT JUST LEAVE ME ALONE. It’s overwhelming and demoralizing. That’s before we get to the questions of what can you still do to make ends meet.
In my case it’s autoimmune; my body has decided it’s going to destroy itself from the inside out. Arthritis, psoriasis, GI issues. It’s getting worse fast enough that I’m being transferred to a hospital for care (Military, stationed overseas) and preparation for retirement.
I had a bad day yesterday; out taking care of errands to leave and everything flared. Sometimes there’s no discernible reason. It damned near floored me, but since I don’t have a vehicle I had to walk the couple kilometers back. It’s hard to describe how much ongoing pain changes who you are. It’s a constant struggle to not be an asshole because DAMNIT JUST LEAVE ME ALONE. It’s overwhelming and demoralizing. That’s before we get to the questions of what can you still do to make ends meet.
It's a shame how hard it is to appreciate the times we're in good health. Though probably an essential adaptation else we'd be in sheer amazement at all times while healthy if we could truly internalize how bad things could get. How would we get anything done if we could truly marvel at peak health if we knew what ultimately awaited us somewhere down the road.
I absolutely agree.
The positive I take away from it is that I DO appreciate the good days, and my family, and the life I have more. It sounds trite, but the silver lining is there.
The positive I take away from it is that I DO appreciate the good days, and my family, and the life I have more. It sounds trite, but the silver lining is there.
I started Taltz to deal with my psoriasis, and found out what I had thought was something else turned out to probably be psoriatic arthritis, because the pain definitely went down after starting it.
It isn't a cure, but perhaps you might find some relief there if you haven't tried it.
> It’s hard to describe how much ongoing pain changes who you are
This is definitely true. I spent years getting back to being myself, I hope you find your way as well.
It isn't a cure, but perhaps you might find some relief there if you haven't tried it.
> It’s hard to describe how much ongoing pain changes who you are
This is definitely true. I spent years getting back to being myself, I hope you find your way as well.
Part of the reason they are transferring me is so they have the freedom to try some of the immune suppressing drugs. Being deployed overseas means they can't.
I'm terrified, but hoping something will help.
I'm terrified, but hoping something will help.
Ah, i had forgotten about the being deployed bit. Being on taltz does mean having to take a tuberculosis test every 6 months, so I imagine that would be rough.
One suggestion is to not be pressured into a biologic before you do some research on incidence rates of side effects. Newer ones seem to be WAY safer than even those that came out a few years ago, but the insurance companies don't seem to care.
In fact, it isn't covered at all for me, but the manufacturers have a card you sign up for that lets you get it for $25 (or reduces your copay to $5 if you have a deductible).
I'm not sure what access to this stuff is like overseas or through VA, so I am curious and hope it pans out well!
One suggestion is to not be pressured into a biologic before you do some research on incidence rates of side effects. Newer ones seem to be WAY safer than even those that came out a few years ago, but the insurance companies don't seem to care.
In fact, it isn't covered at all for me, but the manufacturers have a card you sign up for that lets you get it for $25 (or reduces your copay to $5 if you have a deductible).
I'm not sure what access to this stuff is like overseas or through VA, so I am curious and hope it pans out well!
[deleted]
I am also dealing with a at least one autoimmune condition (TBD what exactly is the full story) that causes chronic pain and is seriously damaging my career. I suspect I'm not in as bad a way as you, but know that you're not alone. Sending good thoughts. One day at a time; hoping for more good days than bad for you.
Just wanted to send you good thoughts. Stay strong. Rooting for you!
Thanks! Positive support with no expectation that I listen to a miracle cure or something is one of those things that really helps on rough days!
Sorry to hear about that. Sending you positive thoughts, I hope it gets better.
Thanks! Positive support with no expectation that I listen to a miracle cure or something is one of those things that really helps on rough days!
A few years ago I fell and broke my elbow. It was a mess and had to have emergency surgery to put it all back together. After surgery I'm sent home with a "ball" around my neck that is a reservoir for some pain meds that are being fed into my body via a catheter that was threaded into a vein in my neck. So I am sitting on my recliner a few hours after the surgery , awake but groggy. Anesthesiologist calls me on my cell phone to check in on me. So the pain med ball has a valve on it calibrated from 1 to 10. It's on like 9. He asks me how the pain level is. I say "no pain". He say's "great, what's the setting our your valve" I say 9. He says "whoa! you need to turn that down! At that level it will be used up in about 10 hours and you need it last for at least 48 hours" I say "okay." He then hangs up. So being a groggy engineer, I think "okay, I will dial it down to like 2 and then as pain arrives adjust up to needed level" So I turn it down to 2. About 45 minutes later I am in the most excruciating pain I have ever experienced. Think teeth clenching. Sweating. Tears. I immediately turn the dial up to 10. The pain lasted for 2 hours. I'm an atheist, but let me tell you I was coming to Jesus in those two hours. Once the pain subsided, I call him back. He says "Oh yeah, you should have slowly backed down on the dial." Upside is that I have a lot of empathy for folks who say they are in pain. Seriously, if that pain had continued I would have taken anything, Heroin, whatever!!!
It's amazing what doctors don't think to explain. Like, buddy, I know you've seen this a million times before, but trust me this is the first time I've ever done this...
I have a different story of pain medication gone awry.
My wife had surgery and there was a hydromporphone pump where she could press a button. The button was then blocked for eight minutes. She didn't understand the system. Then I realized that it had two different beeps, one if the pump delivered a bolus and the different one if the pump was blocked. My wife and I we are both Deaf so we just didn't know. I requested then the pump turned around so she could have a look at the GUI of the pump.
But my wife already lost her confidence, refused to press the button and a few hours later the hospital removed that contraption completely and switched to a different regimen.
My wife had surgery and there was a hydromporphone pump where she could press a button. The button was then blocked for eight minutes. She didn't understand the system. Then I realized that it had two different beeps, one if the pump delivered a bolus and the different one if the pump was blocked. My wife and I we are both Deaf so we just didn't know. I requested then the pump turned around so she could have a look at the GUI of the pump.
But my wife already lost her confidence, refused to press the button and a few hours later the hospital removed that contraption completely and switched to a different regimen.
Slightly funny story similar to yours: we were having our 2nd kid and my wife was given no2 gas as a painkiller. I got to be in charge of the dial that controlled the no2/oxygen mix. We started at, like, 40% no2 but then she said she was in pain so I dialled it up to 60%. She was still in pain after half an hour so I increased to 80%. 30 mins later she was in a lot of pain and I noted you could actually set it to 100% no2, but didn't understand how she'd get any oxygen at that setting. I should probably have figured it out at that point, but was pretty sleep-deprived. I asked a nurse why the no2 wasn't working and she said "why, you're almost on 80% oxygen now!"
Kind of similar? I've woken up under NO2/Desflurane 2 times in my life and another time had NO2 just didn't seem to have much effect. After the first time I've made it a point to tell the anthesoilogists of my previous experience but with no personal record it just keeps recurring.
Litocane seems to metabolize or otherwise fade in effect faster in me too than what most dentists expect but at least they listen.
Litocane seems to metabolize or otherwise fade in effect faster in me too than what most dentists expect but at least they listen.
Binary search doesn't always turn out well.
9 to 2 definitely isn't binary search.
It could be if you're binary searching the range of 2 to 9 maybe, or -5 to 9.
But if not, you're right it's not exactly binary search, it's interpolation search, which is like binary search it just uses a different midpoint finding algorithm.
https://en.wikipedia.org/wiki/Interpolation_search
But if not, you're right it's not exactly binary search, it's interpolation search, which is like binary search it just uses a different midpoint finding algorithm.
https://en.wikipedia.org/wiki/Interpolation_search
A few years ago, my partner ran out of critical insulin pump supplies and I appealed to the internet for help. Eventually, Scott drove quite a way to our apartment to give her (a complete stranger) what she needed (and more!)
He's a stand-up grade A really nice guy, and I genuinely wish him the best. I wish that I had more expertise to help with this issue, as the only thing that comes to mind is I've had good results using kratom in a severe pain situation, but that's anecdotal and not quite analogous to his condition.
Wishing you the best, Mr. Hanselman!
He's a stand-up grade A really nice guy, and I genuinely wish him the best. I wish that I had more expertise to help with this issue, as the only thing that comes to mind is I've had good results using kratom in a severe pain situation, but that's anecdotal and not quite analogous to his condition.
Wishing you the best, Mr. Hanselman!
Is is normal in the US? I live in what one might consider a third world country, know quite a few insulin-dependent diabetics, and this story is appalling to me. I've never heard of any diabetic running out of their medication and having to ask the internet for help. Just call the local equivalent of 911 and they'll sort it out.
Jesus.
Jesus.
Americans have developed a survival strategy of turning horror stories into heartwarming tales.
"Homeless person turns to crowdfunding to get themselves a home!"
Americans: Aww how cute!
Rest of the world: What the actual fuck?
"Family turns to internet for insulin supplies because they can't afford them, man drives 1000 miles to give them some."
Americans: Amazing heroism!
Rest of the world: How the hell does a diabetic not get their life-saving medicine?
"96 year old woman flies 200 miles to queue for 6 hours to vote!"
Americans: Wonderful determination!
Rest of the world: Why couldn't she vote where she already was?
"Homeless person turns to crowdfunding to get themselves a home!"
Americans: Aww how cute!
Rest of the world: What the actual fuck?
"Family turns to internet for insulin supplies because they can't afford them, man drives 1000 miles to give them some."
Americans: Amazing heroism!
Rest of the world: How the hell does a diabetic not get their life-saving medicine?
"96 year old woman flies 200 miles to queue for 6 hours to vote!"
Americans: Wonderful determination!
Rest of the world: Why couldn't she vote where she already was?
Would be nice if americans acknowledged that although their country is great in many things, its not so great in quite a few others, or outright horrible at some. Just like any other place. Maybe take some humble inspiration from places where it can and does work better. It doesn't mean system ends up with communism, dictature and whatnot. Just a slightly more humane system to live in, where rich stay rich just with tiny little less wealth, on levels that don't make any difference to their luxury lives.
If the country is so prosperous as US, its also important for those rich and beyond such petty worries to live in well working society anyway. Otherwise they end up in their little fenced paradise with wolves roaming everywhere outside.
If the country is so prosperous as US, its also important for those rich and beyond such petty worries to live in well working society anyway. Otherwise they end up in their little fenced paradise with wolves roaming everywhere outside.
>Americans have developed a survival strategy of turning horror stories into heartwarming tales.
I could not agree with this more strongly. It was a terrible event that I don't think about very often, it just popped into my head because of this post.
I could not agree with this more strongly. It was a terrible event that I don't think about very often, it just popped into my head because of this post.
Yes, it is normal. There are coupons for insulin that some pharmacists can give out, but they are not guaranteed. Insulin is prohibitively expensive without coupons or insurance. So many people in the US die as a result because they simply cannot afford to purchase the drug that costs pennies to produce.
Type 1 diabetics regularly do not recieve adequate care, even at the basic life-support level here in the US.
I'm living in what is definitely a third world country. This does not happen here. Those who want the best quality care go to private hospitals while a good majority seeks free treatment in state run hospitals. On top of this, most employment contracts come with medical insurance.
That's amazing. I've followed Scott for about 10 years and he's always seemed like an incredibly compassionate person. I'm really hoping his PT starts working and he's able to recover soon.
That is a lovely story. He does come across as a genuinely good guy.
Yeah, he's great!
We needed just a couple insulin reservoirs for a Medtronic pump and he brought a bunch of them, and quite a few blood glucose strips (which can be ridiculously expensive), and gave us a little demonstration about a closed-loop "artificial pancreas" system based on open source software and relatively cheap hardware. I'd definitely never have heard about Tidepool or OpenAPS if it weren't for his visit.
We needed just a couple insulin reservoirs for a Medtronic pump and he brought a bunch of them, and quite a few blood glucose strips (which can be ridiculously expensive), and gave us a little demonstration about a closed-loop "artificial pancreas" system based on open source software and relatively cheap hardware. I'd definitely never have heard about Tidepool or OpenAPS if it weren't for his visit.
I'm going through other pancreatic issues ([idiopathic/undefined] acute pancreatitis resulting in several necrotic masses and another(s?) unidentified nodes)— would you be so kind as to share some of your info? Are the two items you mentioned the projects?
I'm hoping diabetes (or worse) isn't in my future, but you never know. Doctors don't have as much time lately due to Covid either to spend time with me on it until next year. In the interim it's just pain management...
edit: I had a look. I guess those have more to do with insulin management than a wholistic pancreas... really interesting nonetheless! This is the kind of effort that amazes me with regard to what we're really capable of with technology. Well if any one else knows of anything of a wider scope...
I'm hoping diabetes (or worse) isn't in my future, but you never know. Doctors don't have as much time lately due to Covid either to spend time with me on it until next year. In the interim it's just pain management...
edit: I had a look. I guess those have more to do with insulin management than a wholistic pancreas... really interesting nonetheless! This is the kind of effort that amazes me with regard to what we're really capable of with technology. Well if any one else knows of anything of a wider scope...
My partner hasn't actually implemented any external pancreas programs for a few personal reasons, I mostly bring it up because it's something that's solidly in the "goals" column and we're both excited about the possibilities in the future. (And it is very much the future as far as I can tell)
Yes, Tidepool and OpenAPS are both generally focused on insulin management, so if you're looking for something that involves glucagon-like things I've got no idea.
Honestly, Scott Hanselman is the guy I'd ask.
Yes, Tidepool and OpenAPS are both generally focused on insulin management, so if you're looking for something that involves glucagon-like things I've got no idea.
Honestly, Scott Hanselman is the guy I'd ask.
Cool, thanks for the response. It's really interesting and encouraging to see this kind of work at all. It was so far off my radar previously.
"A healthy man wants a thousand things, a sick man only wants one".
There are so many forms of illness where this is true. I've never experienced anything nearly as persistent and painful as frozen shoulder.
The worst thing I've experienced was probably Sciatica as a teen. It was particularly frustrating since the pain was intermittent and invisible to others. Through fairly substantial lifestyle changes, I haven't had issues in more than a decade.
I hope everyone in this thread (and the author) is able to become well enough to return to their lives.
There are so many forms of illness where this is true. I've never experienced anything nearly as persistent and painful as frozen shoulder.
The worst thing I've experienced was probably Sciatica as a teen. It was particularly frustrating since the pain was intermittent and invisible to others. Through fairly substantial lifestyle changes, I haven't had issues in more than a decade.
I hope everyone in this thread (and the author) is able to become well enough to return to their lives.
I had severe sciatica from ages 25-30 and it was like another lifetime. I don’t know where it came from or where it went, but that was a remarkably worse period of my life.
Reflecting on it I wish I wasn’t dragged down so much. But in all honesty I think I’d handle it even worse now. It was agonizing at times. I remember laying on the floor squirming in pain, no idea what to do. Hours of it. Thinking about it makes me a little anxious. I should be more grateful that I’m healthy again.
Reflecting on it I wish I wasn’t dragged down so much. But in all honesty I think I’d handle it even worse now. It was agonizing at times. I remember laying on the floor squirming in pain, no idea what to do. Hours of it. Thinking about it makes me a little anxious. I should be more grateful that I’m healthy again.
I am struggling with sciatica related to my SI joint right now. It's not nearly as excruciating as most of the other posts but it has rendered me unable to work at all. Am not able to sit for more than an hour before the pain is too much. Lying down is only slightly better. It's been quite some time since I have been able to get a good night's sleep without having to wake up with the pain buliding up slowly.
More than the pain, it's the fact that I'm prevented from being able to work on my computer that frustrates me so much. After a point the boredom becomes worse than the pain.
While am not seeking medical advice from someone on the internet, I'd love to know what you did to get "healthy again".
More than the pain, it's the fact that I'm prevented from being able to work on my computer that frustrates me so much. After a point the boredom becomes worse than the pain.
While am not seeking medical advice from someone on the internet, I'd love to know what you did to get "healthy again".
I've been suffering from Sciatica for the past 10 years or so due to bulging disks - If you haven't come across Stuart McGill's work already, he is the best when it comes to back health. I would recommend his book "Back Mechanic"[1]. It mostly targets disk related issues, not sure how much crossover it has with SI related sciatica, but I'd bet you could benefit from core-focused exercise.
1. https://www.backfitpro.com/books/back-mechanic-the-mcgill-me...
1. https://www.backfitpro.com/books/back-mechanic-the-mcgill-me...
The only thing I actively did that coincided with getting better was that I started lifting weights. I had a shoulder injury at the time too, and just... tried to take a holistic and engaged approach to building my health.
I don’t like to encourage people with back problems to do what I did because it just as easily could have gone south. All I knew was that when I did deadlifts or squats I would get this fleeting relief from the pain and I’d gain mobility back for hours.
I also reduced my running. I ran a lot at the time. I had sciatic pain before the running too, but it seems running never helped it. Perhaps only made it worse.
I also tried to do more yoga. Yoga was hard because it was never rewarding, always excruciating. However I had a sense in the moment that I wasn’t harming myself and that the pain was the gain variety. It was just intuition.
I really believe movement is healing, or trying to strengthen yourself. Something I wish I’d done at the time was stop drinking. I don’t think alcohol helps any. It’s appealing though because anything to take the edge off is hard to resist... I actually drank quite a bit through that pain. Maybe not by some standards, but by mine, far too much. When you have an inflammation problem though I think alcohol is the last thing you need to add to your diet.
Anyway, if you can handle it, maybe some light compound weight lifting is worth investigating. Or yoga. Look into sitting bends and twists - they’re very easy to learn and ease into, and very unlikely to harm you. Throw on a podcast and commit to a few weeks of trying maybe.
It’s such a hard problem to navigate and find solutions for. In any case, I wish you luck. I really wish I had good advice for you.
I don’t like to encourage people with back problems to do what I did because it just as easily could have gone south. All I knew was that when I did deadlifts or squats I would get this fleeting relief from the pain and I’d gain mobility back for hours.
I also reduced my running. I ran a lot at the time. I had sciatic pain before the running too, but it seems running never helped it. Perhaps only made it worse.
I also tried to do more yoga. Yoga was hard because it was never rewarding, always excruciating. However I had a sense in the moment that I wasn’t harming myself and that the pain was the gain variety. It was just intuition.
I really believe movement is healing, or trying to strengthen yourself. Something I wish I’d done at the time was stop drinking. I don’t think alcohol helps any. It’s appealing though because anything to take the edge off is hard to resist... I actually drank quite a bit through that pain. Maybe not by some standards, but by mine, far too much. When you have an inflammation problem though I think alcohol is the last thing you need to add to your diet.
Anyway, if you can handle it, maybe some light compound weight lifting is worth investigating. Or yoga. Look into sitting bends and twists - they’re very easy to learn and ease into, and very unlikely to harm you. Throw on a podcast and commit to a few weeks of trying maybe.
It’s such a hard problem to navigate and find solutions for. In any case, I wish you luck. I really wish I had good advice for you.
This might be late but thanks for taking the time to write such a detailed response.
You’re very welcome - I really hope you find some relief and recovery. Stay curious and I’m sure you’ll find something that helps.
Someone I know is dealing with sciatica now and it's not going well, do you have any insights on what helped you?
I had disabling sciatica for a year and I thought a break from work would do me good; perhaps 3 months of exercise, no slouching over a computer, no deadlines, etc. would improve the situation. Nothing worked. In desperation, I consulted many, many specialists, even chiropractors, but nope, no change.
Alas, I had banked on _something_ changing in 3 months, so I had planned a walking holiday in Western Ireland (Dingle) before rejoining work. I wasn't prepared to cancel the tickets, so I went anyway. I took along a plywood board to help me sit angled on the seat to avoid having to sit at right angles!
Started the walk on The Dingle Way in a dubious frame of mind. I knew I was doing it only because I was too cheap to cancel tickets. Then magic happened. The place is so exquisitely beautiful that I walked 25 kms on the first day, even sharing a backpack with my wife. That evening, everything was hurting, but not in the usual places I had been conditioned to expect. The sciatica was GONE! I couldn't believe it, but it didn't recur the next morning. It has been 20 years now.
It is possible mine was a simple case that just required a structural realignment. But I had tried walking before, and many other strategies to improve posture etc. In hindsight, the only difference is that my brain in Ireland was fully engaged in the beauty of the place and people, and disengaged from the pain. Perhaps exercising my back without being focused on a cure is what worked. Who knows? Perhaps this anecdote is of some value to your friend.
Thank you, Ireland!
Alas, I had banked on _something_ changing in 3 months, so I had planned a walking holiday in Western Ireland (Dingle) before rejoining work. I wasn't prepared to cancel the tickets, so I went anyway. I took along a plywood board to help me sit angled on the seat to avoid having to sit at right angles!
Started the walk on The Dingle Way in a dubious frame of mind. I knew I was doing it only because I was too cheap to cancel tickets. Then magic happened. The place is so exquisitely beautiful that I walked 25 kms on the first day, even sharing a backpack with my wife. That evening, everything was hurting, but not in the usual places I had been conditioned to expect. The sciatica was GONE! I couldn't believe it, but it didn't recur the next morning. It has been 20 years now.
It is possible mine was a simple case that just required a structural realignment. But I had tried walking before, and many other strategies to improve posture etc. In hindsight, the only difference is that my brain in Ireland was fully engaged in the beauty of the place and people, and disengaged from the pain. Perhaps exercising my back without being focused on a cure is what worked. Who knows? Perhaps this anecdote is of some value to your friend.
Thank you, Ireland!
My situation was unusual, so I'm not sure my solutions would generalize. Sciatica in teens is very unusual. The cause, likely, was a series of fairly involved surgeries I had had as a young child combined with overuse. None of the orthopedists I saw were particularly sure about the cause, nor were the physical therapists.
The long term solution was to avoid triggers and increase core strength. The short term solution was NSAIDs and correcting sleep posture (getting an 8-9 hour reprieve from loading the muscles that spasm remains very helpful).
Long-distance running was a trigger for me (particularly running slowly, oddly enough), so I haven't run in basically a decade. I used to run 5 days a week. It was pretty clearly part of my identity.
Years later, I picked up rock climbing (2-3 days a week) and my problems incidentally went away. Whenever I stop climbing for a while, I get periodic minor flare-ups. Fortunately, the short term fixes can nip this in the bud, particularly if I start exercising again.
I don't know the details of their situation, but I would encourage them to seek out a physical therapist. And to change therapists if it doesn't work. It took me a while to find someone that could actually help. I have no idea why the first therapists did not suggest improving sleep posture.
The long term solution was to avoid triggers and increase core strength. The short term solution was NSAIDs and correcting sleep posture (getting an 8-9 hour reprieve from loading the muscles that spasm remains very helpful).
Long-distance running was a trigger for me (particularly running slowly, oddly enough), so I haven't run in basically a decade. I used to run 5 days a week. It was pretty clearly part of my identity.
Years later, I picked up rock climbing (2-3 days a week) and my problems incidentally went away. Whenever I stop climbing for a while, I get periodic minor flare-ups. Fortunately, the short term fixes can nip this in the bud, particularly if I start exercising again.
I don't know the details of their situation, but I would encourage them to seek out a physical therapist. And to change therapists if it doesn't work. It took me a while to find someone that could actually help. I have no idea why the first therapists did not suggest improving sleep posture.
Not the OP, but I also had sciatica as a teen. In my case, it was caused by a chair whose seat was not level; it tilted slightly to the side. It went on for a year or two, I think. Eventually I realized what the cause was, got rid of the chair, and the pain gradually got better until it went away completely.
This is why I think that fighting torture is the second most important global task (after fighting climate change). All of you - all of us - who experienced unbearable pain, now imagine your pain but ten times worse, inflicted deliberately, on hours and days, over months and years, in combination with multiple other tortures, under sleep deprivation, in a state of learned helplessness.
As you read these lines, people are hanging from ceiling by hands handcuffed behind their back, being beaten all over the body until they lose consciousness, woken up and beaten over and over.
We have learned to ignore what is routinely happening in countries like SA, Egypt, NK, Turkey, China and many, many others. We use the newspeak "human rights abuse" to soften the sound of it, to avoid the emotional disturbance that comes with imagining the profesional, large scale, indiscriminate torture programs in countries that are our military allies and trade partners.
As you read these lines, people are hanging from ceiling by hands handcuffed behind their back, being beaten all over the body until they lose consciousness, woken up and beaten over and over.
We have learned to ignore what is routinely happening in countries like SA, Egypt, NK, Turkey, China and many, many others. We use the newspeak "human rights abuse" to soften the sound of it, to avoid the emotional disturbance that comes with imagining the profesional, large scale, indiscriminate torture programs in countries that are our military allies and trade partners.
Totally agree that reduction of pain is a worthy cause.
I am also vegan for this same reason. Animals in factory farms face continuous torture (look at Dominion or other undercover investigations to learn more). Once I learned this, I could no longer enjoy animal products.
About ten years ago I had around 9 months (maybe a little more) of chronic testicular pain. It felt like someone had kicked me in the crotch about 10 minutes ago, all day every day. I've been in more pain from some injuries I've had (bike accident), but this lasted for much, much longer.
It also made sleeping difficult, as for some reason lying down was extremely uncomfortable. I ended up sleeping in a chair for several months.
I ended up cancelling a conference visit and talks just because I felt so awful and I wasn't even sure I could sleep in a hotel away from home.
One thing I look back on and realize now is that it really changed my behavior. My temper was shorter and my judgement about how to interact with others was much poorer.
Fortunately, it eventually resolved itself. I used to have flareups for a week or two every few months, then for a few days less often, and now it's been a few years since I've felt it.
All of which is to say I feel for the author. This sort of thing sucks. For anyone else who's experienced any sort of similar pain, I would encourage you to continue looking for solutions. If you can, enlist family or friends to help you do so.
I think that after a while you forget what it feels to be pain free, and it becomes easier to accept your current state. But once my pain resolved itself I realized how much of a difference it made in my life.
It also made sleeping difficult, as for some reason lying down was extremely uncomfortable. I ended up sleeping in a chair for several months.
I ended up cancelling a conference visit and talks just because I felt so awful and I wasn't even sure I could sleep in a hotel away from home.
One thing I look back on and realize now is that it really changed my behavior. My temper was shorter and my judgement about how to interact with others was much poorer.
Fortunately, it eventually resolved itself. I used to have flareups for a week or two every few months, then for a few days less often, and now it's been a few years since I've felt it.
All of which is to say I feel for the author. This sort of thing sucks. For anyone else who's experienced any sort of similar pain, I would encourage you to continue looking for solutions. If you can, enlist family or friends to help you do so.
I think that after a while you forget what it feels to be pain free, and it becomes easier to accept your current state. But once my pain resolved itself I realized how much of a difference it made in my life.
Another person with orchialgia here, it sucks. Mine's been on and off for almost 20 months now. After three urologists I found something that worked (and it's like a miracle).
Something you touch on here implicitly is how much it changes little things in your life. For me it was long commutes, I can't sit for extended periods of time.
What I would add is that doctors can be great for things they recognize and can treat. With something like chronic pain that can manifest due to numerous causes and doesn't outright kill you, doctors can be very unhelpful. It took a really bad bout of pain to see a new urologist who diagnosed it as a damaged nerve and prescribed a device that works.
Not everyone is the same, but my experience led me to believe that if you suffer from chronic pain you just have to keep shuffling specialists until you find someone that's read different research than the others that works.
Something you touch on here implicitly is how much it changes little things in your life. For me it was long commutes, I can't sit for extended periods of time.
What I would add is that doctors can be great for things they recognize and can treat. With something like chronic pain that can manifest due to numerous causes and doesn't outright kill you, doctors can be very unhelpful. It took a really bad bout of pain to see a new urologist who diagnosed it as a damaged nerve and prescribed a device that works.
Not everyone is the same, but my experience led me to believe that if you suffer from chronic pain you just have to keep shuffling specialists until you find someone that's read different research than the others that works.
Yeah, regarding doctors I'm not sure anything they suggested help. The first one I saw that it was an infection and gave me antibiotics. That didn't seem to do much.
Then as it persisted another urologist thought it might be urine backflowing down my vas deferens and I took beta blockers to improve my urinary flow.
Finally the urologist basically said that sometimes after you have an infection you can have idiopathic pain for a long time afterwards.
And maybe that was it. It pretty much went away on its own. I feel quite fortunate for that, because it really sucked. If it had persisted I suspect I would've seen quite a few more urologists!
Then as it persisted another urologist thought it might be urine backflowing down my vas deferens and I took beta blockers to improve my urinary flow.
Finally the urologist basically said that sometimes after you have an infection you can have idiopathic pain for a long time afterwards.
And maybe that was it. It pretty much went away on its own. I feel quite fortunate for that, because it really sucked. If it had persisted I suspect I would've seen quite a few more urologists!
I had a similar problem, no urologist could tell me anything meaningful. After some time and a gigantic load of stress, I randomly stumbled upon a guy who had the exact same problem as mine. He did a shit ton of analysis, tests and scans. In his case, it ended up being a pain coming from a herniated disc. Coincidentally, he had the exact same disc being herniated as mine - L5S1. Once he told me about that, it all clicked for me, as I usually had pain sitting in a weird position. My brain just couldn’t identify the origin of the pain, and I thought it’s coming from my balls.
Given that it resolved itself on its own, I'd assume that wasn't the case for me. But it's very interesting how referred pain can be so confusing!
I had something like this that landed me in the ER. I got a diagnosis of deferred kidney stone pain at the time. I too was all about which way to sit in a chair. I can't imagine that going on for weeks.
What worked?
No joke, a vibrator applied to the inguinal area. It's a little uncomfortable and probably has a hefty dose of placebo effect but I'm told it's like a reset button for the way the brain interprets pain from the damaged nerve. Like sending it garbage data to trick it into clearing its cache.
It feels very strange to put out there that I've had the same issue, but it seems to be very common, and yet is rarely spoken about.
I had the same path as you — infection, antibiotics (through an IV), and then a few weeks later the pain sort of disappeared! Now and then I wake up with the same pain, maybe twice a month, and it lasts for 1-3 days. But otherwise it's mysteriously disappeared. (I feared it may have been torsion/Bell Clapper Deformity or something like that.)
I think you may find this article interesting: https://www.health.harvard.edu/blog/finding-help-for-pelvic-.... There is another article I found where two doctors noted that men in high-performing careers (ostensibly with a lot of stressors) often complained of chronic testicular pain. They had developed this sort of massaging device [...] which worked remarkably well for their patients, some of whom had even had testicles removed because of the pain, but oddly I can't find it now.
I had the same path as you — infection, antibiotics (through an IV), and then a few weeks later the pain sort of disappeared! Now and then I wake up with the same pain, maybe twice a month, and it lasts for 1-3 days. But otherwise it's mysteriously disappeared. (I feared it may have been torsion/Bell Clapper Deformity or something like that.)
I think you may find this article interesting: https://www.health.harvard.edu/blog/finding-help-for-pelvic-.... There is another article I found where two doctors noted that men in high-performing careers (ostensibly with a lot of stressors) often complained of chronic testicular pain. They had developed this sort of massaging device [...] which worked remarkably well for their patients, some of whom had even had testicles removed because of the pain, but oddly I can't find it now.
I never had any pain or difficulty urinating when I had the pain symptoms. But what the article describes is interesting. If my pain comes back (fingers crossed it never does) I'll try to keep this possibility in mind.
Self reply to add an addendum ... I almost forgot the follow up.
I've also experienced weird GI pain with no cause and reflux without any indication of reflux (throat looks fine, swallowing is fine, etc.).
For the GI pain, my GP prescribed a relatively low dose (20mg) of Amitrypyline, which is an old anti-depressant. Later, the GI specialist I saw recommended I double this to 40mg.
Apparently it's good in treating idiopathic pain like mine, and I it may have helped me. It's really hard to say because a lot of my pain issues have occurred on and off over long periods of time. So maybe the improvement is just a natural resolution of some underlying issue, or maybe it's the medication.
The theoretical mechanism of the drug is that when taken before bed it helps you sleep more deeply, and during good quality sleep your body is better able to repair itself.
Absent any reason not to, I'll just keep taking it.
I've also experienced weird GI pain with no cause and reflux without any indication of reflux (throat looks fine, swallowing is fine, etc.).
For the GI pain, my GP prescribed a relatively low dose (20mg) of Amitrypyline, which is an old anti-depressant. Later, the GI specialist I saw recommended I double this to 40mg.
Apparently it's good in treating idiopathic pain like mine, and I it may have helped me. It's really hard to say because a lot of my pain issues have occurred on and off over long periods of time. So maybe the improvement is just a natural resolution of some underlying issue, or maybe it's the medication.
The theoretical mechanism of the drug is that when taken before bed it helps you sleep more deeply, and during good quality sleep your body is better able to repair itself.
Absent any reason not to, I'll just keep taking it.
You're describing exactly what I went through! Two rounds of antibiotics, pain meds. Finally gabapentin was the only thing that worked and now I'm slowly weening myself off of it. It's been hell. I had to sleep on the couch elevated. I could barely walk. Everything looked fine down there physically, two ultrasounds, MRI, nothing looked odd. I'm really hoping it never comes back because it was like either someone was squeezing it off and on or someone replaced the boys with pine cones. The pain was just so bad I wanted to get rid of them. Thank god for the lock down because I was working from home during this. I probably would have lost my job or something had I had to go to the office.
Yeah, I did consider some surgeries like an epidydymectomy (the doctors though that was where my pain was coming from). Fortunately it did slowly resolve itself and I didn't have to do that.
I hope your pain resolves itself soon. It just sucks so much to have to deal with this.
I hope your pain resolves itself soon. It just sucks so much to have to deal with this.
That sounds horrific. Did you ever find out what the cause was?
See my other comment here - https://news.ycombinator.com/item?id=24948175
The only thing that made sense was that an initial infection triggered idiopathic pain long after the infection was gone.
The only thing that made sense was that an initial infection triggered idiopathic pain long after the infection was gone.
Weird thing that I've observed. I'd never suggest it. I've met several masochists (the m in bdsm) who live with chronic pain and participate in the kink community because, as far as I can understand, it's a way to reframe the chronic pain that they experience. Or maybe, it's like getting out of a boiling hot car into the relative cool of a blazing summer day. The people I've met under these circumstances have had extreme pain tolerance, to the point where their sadists tread a fine line of giving them enough without doing damage. I know that many masochists experience (and seek) a significant endorphin response, and I've long wondered if exercising that somehow increases their endorphin production capacity -- and if that would provide an enduring benefit to those who live with chronic pain.
> When I'm done yelling, I'm trying to sit quietly and meditate about this pain. What is it trying to tell me? Can I mentally follow the nerve from the location (referred pain or otherwise) to my brain and determine what the body wants me to know? Am I being told there's danger?
For many chronic pain conditions this is a vital step, and that acceptance can be a huge boost, allowing you to get through a day.
Unfortunately for many of us... It isn't. I'm in pain now, chronic and debilitating, but there's no known cause. There's no message my body is trying to send other than the equivalent of every light on the dashboard turning on. Something is malfunctioning, so the body is misbehaving, and I'm in agony.
Every moment, of every day, for the last fifteen years, the pain is there are increasing. As you learn to tolerate the pain, the body learns to increase the signal because it thinks there's something that needs to be addressed... But there's not.
Sometimes... There's simply no escape. And learning to live with that is a harder truth.
For many chronic pain conditions this is a vital step, and that acceptance can be a huge boost, allowing you to get through a day.
Unfortunately for many of us... It isn't. I'm in pain now, chronic and debilitating, but there's no known cause. There's no message my body is trying to send other than the equivalent of every light on the dashboard turning on. Something is malfunctioning, so the body is misbehaving, and I'm in agony.
Every moment, of every day, for the last fifteen years, the pain is there are increasing. As you learn to tolerate the pain, the body learns to increase the signal because it thinks there's something that needs to be addressed... But there's not.
Sometimes... There's simply no escape. And learning to live with that is a harder truth.
I was diagnosed with fibromyalgia ~15 years ago. Since then, having started an immunosuppressive for something else and it seemed to help with the pain- now the doctors think it is psoriatic arthritis.
I am in constant, mild pain. Some days it is nearly, but not quite debilitating. Some people think I am making it up, exaggerating, or that it is all in my head.
There is no certain test for either condition- in particular, fibromyalgia is basically a bucket you get tossed into if nothing else makes sense.
I am definitely sympathetic to people with chronic pain, because i know first-hand the extent to which it changes your personality, stress and anxiety tolerance, cognitive ability and focus.
You are not alone. It sucks, big time, but you are not alone.
I am in constant, mild pain. Some days it is nearly, but not quite debilitating. Some people think I am making it up, exaggerating, or that it is all in my head.
There is no certain test for either condition- in particular, fibromyalgia is basically a bucket you get tossed into if nothing else makes sense.
I am definitely sympathetic to people with chronic pain, because i know first-hand the extent to which it changes your personality, stress and anxiety tolerance, cognitive ability and focus.
You are not alone. It sucks, big time, but you are not alone.
> There is no certain test for either condition- in particular, fibromyalgia is basically a bucket you get tossed into if nothing else makes sense.
FM is young (around 1990 it got its name), so a lot of what we know has changed, especially in fifteen years, but it is no longer the case that there isn't a test for it (there's multiple), and it should not be the diagnosis of last resort when nothing else makes sense. There are specific diagnostic criteria.
For testing, we have things like the FM/a blood test (since 2012), and for diagnosis you need to fulfill "The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity" (2010), or similar.
FM also falls into four categories:
+ Extreme sensitivity to pain but no associated psychiatric conditions (usually treated by attempting to de-sensitise the nervous system)
+ Fibromyalgia and comorbid, pain-related depression (usually treated as the above, whilst also utilising an anti-depression regime)
+ Depression with concomitant fibromyalgia syndrome (usually treated as the above)
+ Fibromyalgia due to somatization (usually treated with psychotherapy)
The fourth category is sort of what everyone assumes the entire illness is like, at least in my experience. It also happens to be the least common form of the illness since we began standardised diagnosis.
---
I fall into the first category. I am not intending to provide any advice whatsoever, because that's one of the most infuriating things about living with the illness. I've been learning to deal with this for half my life, the person talking to me may be frustrated and want to help... But the chances of you coming up with anything I'm not aware of are practically zero. And an insult to my intelligence and determination.
However, fibromyalgia shouldn't get the stigma of being the "random disease" anymore. It isn't. Unless you fall into the fourth category, there are neural structures unique to sufferers, and blood markers that are unique to sufferers. This is a condition, not a wastepaper basket for people that are just too hard to diagnose.
The illness can already ruin you, don't let the stigma burn you as well.
FM is young (around 1990 it got its name), so a lot of what we know has changed, especially in fifteen years, but it is no longer the case that there isn't a test for it (there's multiple), and it should not be the diagnosis of last resort when nothing else makes sense. There are specific diagnostic criteria.
For testing, we have things like the FM/a blood test (since 2012), and for diagnosis you need to fulfill "The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity" (2010), or similar.
FM also falls into four categories:
+ Extreme sensitivity to pain but no associated psychiatric conditions (usually treated by attempting to de-sensitise the nervous system)
+ Fibromyalgia and comorbid, pain-related depression (usually treated as the above, whilst also utilising an anti-depression regime)
+ Depression with concomitant fibromyalgia syndrome (usually treated as the above)
+ Fibromyalgia due to somatization (usually treated with psychotherapy)
The fourth category is sort of what everyone assumes the entire illness is like, at least in my experience. It also happens to be the least common form of the illness since we began standardised diagnosis.
---
I fall into the first category. I am not intending to provide any advice whatsoever, because that's one of the most infuriating things about living with the illness. I've been learning to deal with this for half my life, the person talking to me may be frustrated and want to help... But the chances of you coming up with anything I'm not aware of are practically zero. And an insult to my intelligence and determination.
However, fibromyalgia shouldn't get the stigma of being the "random disease" anymore. It isn't. Unless you fall into the fourth category, there are neural structures unique to sufferers, and blood markers that are unique to sufferers. This is a condition, not a wastepaper basket for people that are just too hard to diagnose.
The illness can already ruin you, don't let the stigma burn you as well.
It sounds like the FM/a test is still experimental- at least in the sense that abnormally low levels of cytokenes are a potential indicator of FM.
https://www.healthline.com/health/fibromyalgia/blood-test#re... (Feb 2020)
Neither the American College of Rheumatology nor the Mayo Clinic appear to indicate it as an option, yet; both continue to claim that FM is a label after other options have been exluded:
https://www.mayoclinic.org/diseases-conditions/fibromyalgia/...
https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseas...
In fact, the The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity" that you refer to are still incredibly generic; basically it's just an extended period of pain, accompanied by poor sleep or mood to the exclusion of other possible causes. Naturally, months of chronic pain will contribute to feeling poorly rested and / or an altered mood, fibromyalgia or no.
I don't mean to disparage your assertions, and fully agree with your ultimate point of not letting it get to you. That said, I look forward to the FM/a test being more widely recognized.
The thing that surprised me the most about this conversation (and the quick research it forced me to do) is that there is a curiously high level of co-incidence between psoriatic arthritis and fibromyalgia. One of the more annoying effects I suffer (most frequently when I was younger, less so now) was a heavy "fibro fog" cognitive decline typically triggered by high levels of stress.
Maybe I have both? Who knows. Yet another website claiming that neither psoriatic arthritis nor fibromyalgia have a reliable test: https://www.everydayhealth.com/psoriatic-arthritis/living-wi...
(I just might ask my doctor about getting one of those FM/a tests though!)
https://www.healthline.com/health/fibromyalgia/blood-test#re... (Feb 2020)
Neither the American College of Rheumatology nor the Mayo Clinic appear to indicate it as an option, yet; both continue to claim that FM is a label after other options have been exluded:
https://www.mayoclinic.org/diseases-conditions/fibromyalgia/...
https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseas...
In fact, the The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity" that you refer to are still incredibly generic; basically it's just an extended period of pain, accompanied by poor sleep or mood to the exclusion of other possible causes. Naturally, months of chronic pain will contribute to feeling poorly rested and / or an altered mood, fibromyalgia or no.
I don't mean to disparage your assertions, and fully agree with your ultimate point of not letting it get to you. That said, I look forward to the FM/a test being more widely recognized.
The thing that surprised me the most about this conversation (and the quick research it forced me to do) is that there is a curiously high level of co-incidence between psoriatic arthritis and fibromyalgia. One of the more annoying effects I suffer (most frequently when I was younger, less so now) was a heavy "fibro fog" cognitive decline typically triggered by high levels of stress.
Maybe I have both? Who knows. Yet another website claiming that neither psoriatic arthritis nor fibromyalgia have a reliable test: https://www.everydayhealth.com/psoriatic-arthritis/living-wi...
(I just might ask my doctor about getting one of those FM/a tests though!)
> I don't mean to disparage your assertions, and fully agree with your ultimate point of not letting it get to you. That said, I look forward to the FM/a test being more widely recognized.
FM is young. Keeping up to date on it is something I'll leave to my specialist, living with it doesn't require knowing the latest or greatest, so I don't find it disparaging at all.
I mentioned the FM/a test in particular because it's FDA-approved under 21 CFR 866.5700 [0] back in 2012, which generally means it has moved beyond the experimental stage (the notification exception is because it isn't a take-home style test, only a doctor can use it). There's another blood test in the early experimental stages at Ohio State (Stage II) as well, and one from Oxford (Stage II) at similar stages.
Unfortunately, you'll find that the Mayo Clinic doesn't tend to keep up to date, either. They provide some good high-level information on the disease, but because of how young it is, the effort required to keep up to date on a deeper understanding, such as diagnostic options, is probably not worth it to them.
That and a lot of research into fibromyalgia runs into walls and funding problems. We don't have a great understanding of the disease, but we're getting there. The stigma of it being over-diagnosed is probably the most harmful part to research, when that no longer seems to be the case.
[0] https://www.law.cornell.edu/cfr/text/21/866.5700
FM is young. Keeping up to date on it is something I'll leave to my specialist, living with it doesn't require knowing the latest or greatest, so I don't find it disparaging at all.
I mentioned the FM/a test in particular because it's FDA-approved under 21 CFR 866.5700 [0] back in 2012, which generally means it has moved beyond the experimental stage (the notification exception is because it isn't a take-home style test, only a doctor can use it). There's another blood test in the early experimental stages at Ohio State (Stage II) as well, and one from Oxford (Stage II) at similar stages.
Unfortunately, you'll find that the Mayo Clinic doesn't tend to keep up to date, either. They provide some good high-level information on the disease, but because of how young it is, the effort required to keep up to date on a deeper understanding, such as diagnostic options, is probably not worth it to them.
That and a lot of research into fibromyalgia runs into walls and funding problems. We don't have a great understanding of the disease, but we're getting there. The stigma of it being over-diagnosed is probably the most harmful part to research, when that no longer seems to be the case.
[0] https://www.law.cornell.edu/cfr/text/21/866.5700
If I haven't had any luck with treatment options of fibromyalgia, what are good avenues to look down for treatment? What's the most renowned institution for treatment of fibromyalgia?
I'm loathe to answer this question. I'm not a doctor.
Where you live, and how the disease is impacting you, will change the answer.
Rather than issuing an institution name, because we likely live in different countries, it may be better to look at what kind of specialist you would be seeing, and perhaps adjusting expectations a little.
I know that it is common in the US to be assigned to a rheumatologist for treatment of fibromyalgia. This isn't the norm the world over, as they _may_ not have all the necessary experience. Rather, you may find it more helpful to see a Pain Specialist (actual doctor title), who can help you with the symptoms you experience. My own Pain Specialist also specialises in fibromyalgia. I also see a Physiotherapist who specialises in fibromyalgia, and a psychologist who specialises in chronic pain. All three regularly send each other reports. My general doctor isn't involved in the treatment of the illness, it's a specialist condition, and they are not. They'll always defer to the Pain Specialist.
---
However, the biggest part of the question "haven't had any luck with treatment options of fibromyalgia" comes down to your expectations.
FM is a chronic illness, that has both flare-ups and relapses. For many sufferers, but not all, there is _no_ expectation that they will ever be able to reach a level of normality. There is however, an expectation that you may go backwards every few years in what you are capable of, and what you are experiencing, regardless of whether or not you are capable of achieving near-normality.
This is not an illness that can be "cured". For a lot of people the best that _can_ be done is to make it tolerable to live with _most_ of the time. If the treatment is taking the edge off, but you still find yourself highly disabled - that's normal.
A very few number of people can return to near-normality, but for most sufferers, that's never going to happen. It doesn't matter what combination of medication/physio/diet/lifestyle regime that you're on. The illness is pervasive, and may affect all areas of life. However, without such a regime, you may suffer more than is strictly necessary.
Having a team of specialists that communicate is probably the most helpful safety net.
Where you live, and how the disease is impacting you, will change the answer.
Rather than issuing an institution name, because we likely live in different countries, it may be better to look at what kind of specialist you would be seeing, and perhaps adjusting expectations a little.
I know that it is common in the US to be assigned to a rheumatologist for treatment of fibromyalgia. This isn't the norm the world over, as they _may_ not have all the necessary experience. Rather, you may find it more helpful to see a Pain Specialist (actual doctor title), who can help you with the symptoms you experience. My own Pain Specialist also specialises in fibromyalgia. I also see a Physiotherapist who specialises in fibromyalgia, and a psychologist who specialises in chronic pain. All three regularly send each other reports. My general doctor isn't involved in the treatment of the illness, it's a specialist condition, and they are not. They'll always defer to the Pain Specialist.
---
However, the biggest part of the question "haven't had any luck with treatment options of fibromyalgia" comes down to your expectations.
FM is a chronic illness, that has both flare-ups and relapses. For many sufferers, but not all, there is _no_ expectation that they will ever be able to reach a level of normality. There is however, an expectation that you may go backwards every few years in what you are capable of, and what you are experiencing, regardless of whether or not you are capable of achieving near-normality.
This is not an illness that can be "cured". For a lot of people the best that _can_ be done is to make it tolerable to live with _most_ of the time. If the treatment is taking the edge off, but you still find yourself highly disabled - that's normal.
A very few number of people can return to near-normality, but for most sufferers, that's never going to happen. It doesn't matter what combination of medication/physio/diet/lifestyle regime that you're on. The illness is pervasive, and may affect all areas of life. However, without such a regime, you may suffer more than is strictly necessary.
Having a team of specialists that communicate is probably the most helpful safety net.
Thank you for your reply. It's about in line with my experience. I think my frustration so far isn't in the expectation of being cured, but in not have any treatment giving any kind of relief that's not measured in minutes, even just taking the edge off of the pain, as you described. I will definitely take to heart the suggestion of tempering my expectations. Thanks again for sharing.
For what it's worth on the expectation side of things, it took six months for me to begin seeing an improvement as mild as taking the edge off my pain. My recovery times from relapses are generally 18-24 months. It took me a very long time to come to terms with how slow moving things are, and it's entirely okay to not feel okay about that.
Your story is so much like my partner's, I had to wonder if they had a secret HN account and wrote this post.
With her initial diagnosis of fibro, we were... extremely disheartened to say the least. Professionals and laypeople alike hear that word and generally think of it as a made-up or at least psychosomatic disease.
I get a little bit of that, even from professionals, when I mention ADHD. Multiply that by 10 and that's roughly what we experienced with fibro, when that was their diagnosis.
With her initial diagnosis of fibro, we were... extremely disheartened to say the least. Professionals and laypeople alike hear that word and generally think of it as a made-up or at least psychosomatic disease.
I get a little bit of that, even from professionals, when I mention ADHD. Multiply that by 10 and that's roughly what we experienced with fibro, when that was their diagnosis.
> or that it is all in my head
I sometimes end up wondering that about myself. I have near-constant headaches of varying intensity (ranging from a barely noticeable ache to feeling like somebody a vice round my temples) with no known cause, and I occasionally find myself asking if I'm imagining it or it's psychosomatic. I think it stems from my frustration at not knowing the cause, but starting to doubt what you are sensing like that is an unpleasant feeling.
I sometimes end up wondering that about myself. I have near-constant headaches of varying intensity (ranging from a barely noticeable ache to feeling like somebody a vice round my temples) with no known cause, and I occasionally find myself asking if I'm imagining it or it's psychosomatic. I think it stems from my frustration at not knowing the cause, but starting to doubt what you are sensing like that is an unpleasant feeling.
Well, if it makes you feel any better, being psychosomatic doesn't mean it's not "real", it just means that there's an extra step in the causality. Like psychosomatic itching - you are genuinely feeling the irritation, it's not imaginary, but you can retrain yourself not to indulge to fix it. The same thing is true with other psychosomatic illness.
Many people act like psychosomatic illness is in the same category as malingering, delusion, or antisocial behavior. It's not. It's a real thing that you're really experiencing, not some kind of moral failing, it just happens to have a root in neurology and psychology instead of a different causative origin. Is a headache any less real or painful just because it's caused by stress instead of a hangover? I would say no, if anything, the opposite.
Same goes for psychosomatic nausea, high blood pressure, eczema, psoriasis, pain, dizziness, any of at least a dozen things. They're real things you're experiencing, that might have more to do with mental health than physical health, depending on the exact situation. But they're still all real - nobody with high blood pressure from somatic issues is imagining their numbers higher.
So, trust yourself. What you're feeling is genuine, regardless of the source - the fact that that source might be on one or the other side of the extremely fuzzy line of "mind versus body" is no reason to question your own experience.
Many people act like psychosomatic illness is in the same category as malingering, delusion, or antisocial behavior. It's not. It's a real thing that you're really experiencing, not some kind of moral failing, it just happens to have a root in neurology and psychology instead of a different causative origin. Is a headache any less real or painful just because it's caused by stress instead of a hangover? I would say no, if anything, the opposite.
Same goes for psychosomatic nausea, high blood pressure, eczema, psoriasis, pain, dizziness, any of at least a dozen things. They're real things you're experiencing, that might have more to do with mental health than physical health, depending on the exact situation. But they're still all real - nobody with high blood pressure from somatic issues is imagining their numbers higher.
So, trust yourself. What you're feeling is genuine, regardless of the source - the fact that that source might be on one or the other side of the extremely fuzzy line of "mind versus body" is no reason to question your own experience.
Only posting this in case it helps anyone else. I am aware it is a single point of data in my case but it is backed by research and accepted medical advice (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3412202/). I had severe chronic pain from herniated disc that was not a perfect candidate for immediate surgery.
My GP prescribed Cymbalta (https://www.cochrane.org/CD007115/NEUROMUSC_duloxetine-treat...) and I was surprised to find out that the depression med actually is known to help with chronic pain.
It took a few days/weeks to really kick in but it absolutely worked for me. What it did was dissociate my conscious self from my in-pain self. I was always aware that my body was in pain but frankly it didn’t bother me.
This allowed my body the time to properly heal itself without me consciously trying to adjust my position and movement to minimize pain. After about 9 months, I got off the meds, completely pain free. Cymbalta does have a ton of side effects and I experienced a number of them, especially when tapering off. However it was all worth it to get rid of the literal pain in my neck. Sounds like a parody to say “Ask your doctor about Cymbalta” but honestly if you are in chronic pain, don’t want to be addicted to opioids, have tried every rational thing but this, it is not a woo crystal oil gimmick. It is a risk that may be worthwhile to you.
My GP prescribed Cymbalta (https://www.cochrane.org/CD007115/NEUROMUSC_duloxetine-treat...) and I was surprised to find out that the depression med actually is known to help with chronic pain.
It took a few days/weeks to really kick in but it absolutely worked for me. What it did was dissociate my conscious self from my in-pain self. I was always aware that my body was in pain but frankly it didn’t bother me.
This allowed my body the time to properly heal itself without me consciously trying to adjust my position and movement to minimize pain. After about 9 months, I got off the meds, completely pain free. Cymbalta does have a ton of side effects and I experienced a number of them, especially when tapering off. However it was all worth it to get rid of the literal pain in my neck. Sounds like a parody to say “Ask your doctor about Cymbalta” but honestly if you are in chronic pain, don’t want to be addicted to opioids, have tried every rational thing but this, it is not a woo crystal oil gimmick. It is a risk that may be worthwhile to you.
Very interesting! I was recently prescribed Cymbalta as well for chronic pain in my first rib area [0], but until reading your post had some remaining skepticism about going through with it.
In my case, chronic pain seems to be affecting my sympathetic nervous system and causing dysautonomia, manifesting as delayed orthostatic hypotension (blood pressure drops after a few minutes of standing) and compensatory orthostatic tachycardia (heart rate increases to compensate), similar to POTS (postural orthostatic tachycardia syndrom, which, strictly speaking, is just the heart rate symptom and not the blood pressure one).
My doctor who prescribed the Cymbalta described the approach as "multi-modal", since I'll be getting a treatment of pulsed radiofrequency neuromodulation to the painful area (the first rib area) to numb the pain up. But I already have widespread chronic pain, which seems to relate to my POTS (the spine has nerves close enough to the first rib that pain signals could be spilling over and affecting the sympathetic fibers regulating the autonomic nervous system, i.e., things like heart rate and blood pressure). This gives me hope that if my doctor is right, something like Cymbalta could work in tandem with numbing up the pain locally to turn these pain signals down a notch, and hopefully do something to ease up the POTS over time.
[0] https://news.ycombinator.com/item?id=24949553
In my case, chronic pain seems to be affecting my sympathetic nervous system and causing dysautonomia, manifesting as delayed orthostatic hypotension (blood pressure drops after a few minutes of standing) and compensatory orthostatic tachycardia (heart rate increases to compensate), similar to POTS (postural orthostatic tachycardia syndrom, which, strictly speaking, is just the heart rate symptom and not the blood pressure one).
My doctor who prescribed the Cymbalta described the approach as "multi-modal", since I'll be getting a treatment of pulsed radiofrequency neuromodulation to the painful area (the first rib area) to numb the pain up. But I already have widespread chronic pain, which seems to relate to my POTS (the spine has nerves close enough to the first rib that pain signals could be spilling over and affecting the sympathetic fibers regulating the autonomic nervous system, i.e., things like heart rate and blood pressure). This gives me hope that if my doctor is right, something like Cymbalta could work in tandem with numbing up the pain locally to turn these pain signals down a notch, and hopefully do something to ease up the POTS over time.
[0] https://news.ycombinator.com/item?id=24949553
Fascinating. I gained the ability to dissociate very similarly after I had all 4 wisdom teeth removed in one surgery as a teenager. Post-surgery, I fell into a very deep depression and took a fair amount of Hydrocodone for the pain.
For the next number of months, I could almost at will separate my "thinking/conscious" self from my depressed and deeply in pain self (due to a TMJ disorder from the surgery, when they had to crack my jawbone to excise the teeth).
I was prescribed an antidepressant, Prozac, at the time. Prozac is only an SSRI, not an SSNRI like Cymbalta, but the mechanisms of action may be similar. I've always wondered why I was able to do that kind of dissociation — it would make sense if the Prozac prompted it.
I think this same kind of dissociation can be achieved through tremendous discipline and practice at meditation. I think it was the technique used by Thích Quảng Đức when he self-immolated: https://www.youtube.com/watch?v=OxrBik16Hzg.
For the next number of months, I could almost at will separate my "thinking/conscious" self from my depressed and deeply in pain self (due to a TMJ disorder from the surgery, when they had to crack my jawbone to excise the teeth).
I was prescribed an antidepressant, Prozac, at the time. Prozac is only an SSRI, not an SSNRI like Cymbalta, but the mechanisms of action may be similar. I've always wondered why I was able to do that kind of dissociation — it would make sense if the Prozac prompted it.
I think this same kind of dissociation can be achieved through tremendous discipline and practice at meditation. I think it was the technique used by Thích Quảng Đức when he self-immolated: https://www.youtube.com/watch?v=OxrBik16Hzg.
Funny, my wife was put on Cymbalta for a bit and the side effects were absolutely the worst. Then, she started tapering off and things got so much worse -- brain zaps, nausea, starry vision. We even got the drug compounded to a comically small dose to taper with even smaller steps, and it didn't really help.
So, while your advice isn't wrong, drugs work differently for people. Great for some people, terrible for others.
My wife would probably rank being on Cymbalta as the worst time of her life hands down.
So, while your advice isn't wrong, drugs work differently for people. Great for some people, terrible for others.
My wife would probably rank being on Cymbalta as the worst time of her life hands down.
Hmm. I was prescribed Cymbalta and wrote about the reasons for that in a sister reply to yours, and your post reminds me why I have been hesitant to take it. If I may ask, did your wife's post-withdrawal symptoms eventually subside?
Yes, it took months to ramp off it. She had starry vision whenever the lights turned off for several months after that, which doctors were pretty dismissive of. She claims to never have been quite the same since taking it (and she only ever took what the doctors described as a baby dose) but she seems quite fine and normal now, over a year later.
She's been on a lot of drugs, and the ramp down for this was by far the biggest pain. Compounding alone cost hundreds of dollars and tons of driving time to places that could actually compound it, all to get off the damn drug.
She was mostly prescribed it for pain/nerve damage.
Edit: that being said, her doctors did have patients who were on absolutely massive doses for the long term with basically little to no side effects, so I think it depends a lot on the person.
She's been on a lot of drugs, and the ramp down for this was by far the biggest pain. Compounding alone cost hundreds of dollars and tons of driving time to places that could actually compound it, all to get off the damn drug.
She was mostly prescribed it for pain/nerve damage.
Edit: that being said, her doctors did have patients who were on absolutely massive doses for the long term with basically little to no side effects, so I think it depends a lot on the person.
Thank you very much for sharing. I'll definitely need to give the decision to take the drug more consideration before I go through with it.
I started getting cluster headaches a couple of years ago. The level of pain that they inflict completely changed my pain scale.
I started doing something that I read in a fiction book series (The Dresden Files) - basically a little visualization that helps me compartmentalize the pain. It helps a ton, though the fact that the attacks are relatively short probably help in that regard as it takes a lot of concentration.
The reason I bring that all up is that people tend to discount what they can do about a problem, mentally. You’re not going to get rid of the pain, but you might be able to work out a way to deal with it better.
I started doing something that I read in a fiction book series (The Dresden Files) - basically a little visualization that helps me compartmentalize the pain. It helps a ton, though the fact that the attacks are relatively short probably help in that regard as it takes a lot of concentration.
The reason I bring that all up is that people tend to discount what they can do about a problem, mentally. You’re not going to get rid of the pain, but you might be able to work out a way to deal with it better.
What's the visualization? I'm always curious about how other clusterheads cope.
I "push my consciousness" into the pain-free side, essentially detaching the painful side of my head and picturing it not being a part of me, just a floating irritant nearby.
It works pretty well for the easy ones, and helps a little for the bad ones if I catch it while I can still concentrate.
I "push my consciousness" into the pain-free side, essentially detaching the painful side of my head and picturing it not being a part of me, just a floating irritant nearby.
It works pretty well for the easy ones, and helps a little for the bad ones if I catch it while I can still concentrate.
I saw the title of the article, read it, and came back to the comments to find fellow clusterheads.
Wishing you pain free days!
Wishing you pain free days!
I don't have extreme physical pain, but I do have chronic pain in the form of a constant, low-to-medium grade headache that sometimes turns into a crippling migraine-like pain for a few days. It flares with weather changes and stress, but on a 1-10 pain scale it's a 3-4 every day of the week 24/7. At times it surges to a 7-10. There is nothing modern medicine can do for me but turn my consciousness off -- which I refuse to accept.
I've learned to tune it out, but the fatigue it creates is sometimes overwhelming and I find myself crashing frequently on whatever surface I can find to rest on. I struggle mightily in the mornings to make it to work.
When I was in my teens I was part of an NIH study into chronic headaches, but doctors in general waive it away or don't know what to do about it. Constant back and neck stretches and 800mg of Ibuprofen daily seem to be the only things that alleviate it somewhat, bringing the average from a 4 out of 10 to a 3 out of 10.
Strangely, the first time I went headache free in my adult life was a week-long period in the Bay Area when I was interviewing for a few jobs. The headaches went away for a few glorious days I felt what it felt like to be "me", unencumbered by chronic pain for the first time in my adult life. It was absolutely glorious. I sometimes wakeup, in soaked sheets, sweating about the bizarreness of dreaming about that week. I once had a root canal without anesthetic, because it wouldn't take effect -- tuned it out -- I have nightmares still from the experience.
But I didn't get the jobs, I live on the East Coast, and despite a strange semi-immunity to anesthetic, probably a result of the same condition and genetics (I can get a cavity filled by using the same "tune it out" mental skills I learned dealing with absolutely disabling head pain) without fighting over if the anesthetic is working or not. Most dentists have no idea why the novocain isn't working.
My mother has an unspecified autoimmune disease that causes her global minor joint pain. Whatever she has, I'm sure I inherited it. Medical practitioners are universally unable to do anything at all about it. I sometimes drink too much so I can sleep once or twice a week despite (to spite) the pain.
It sucks and I hate it and I wish I had gotten those jobs in SV even if it meant I had one week a year, pain free. But now COVID-19 so....
I've learned to tune it out, but the fatigue it creates is sometimes overwhelming and I find myself crashing frequently on whatever surface I can find to rest on. I struggle mightily in the mornings to make it to work.
When I was in my teens I was part of an NIH study into chronic headaches, but doctors in general waive it away or don't know what to do about it. Constant back and neck stretches and 800mg of Ibuprofen daily seem to be the only things that alleviate it somewhat, bringing the average from a 4 out of 10 to a 3 out of 10.
Strangely, the first time I went headache free in my adult life was a week-long period in the Bay Area when I was interviewing for a few jobs. The headaches went away for a few glorious days I felt what it felt like to be "me", unencumbered by chronic pain for the first time in my adult life. It was absolutely glorious. I sometimes wakeup, in soaked sheets, sweating about the bizarreness of dreaming about that week. I once had a root canal without anesthetic, because it wouldn't take effect -- tuned it out -- I have nightmares still from the experience.
But I didn't get the jobs, I live on the East Coast, and despite a strange semi-immunity to anesthetic, probably a result of the same condition and genetics (I can get a cavity filled by using the same "tune it out" mental skills I learned dealing with absolutely disabling head pain) without fighting over if the anesthetic is working or not. Most dentists have no idea why the novocain isn't working.
My mother has an unspecified autoimmune disease that causes her global minor joint pain. Whatever she has, I'm sure I inherited it. Medical practitioners are universally unable to do anything at all about it. I sometimes drink too much so I can sleep once or twice a week despite (to spite) the pain.
It sucks and I hate it and I wish I had gotten those jobs in SV even if it meant I had one week a year, pain free. But now COVID-19 so....
I recently moved from the Bay Area to the East Coast and I'm experiencing some pretty bad headaches that seem to fluctuate with the weather, and sometimes turn into migraines.
I knew a guy with awful, awful seasonal allergies. He moved to Arizona for a year and a half, then moved back -- totally cured, no allergies at all.
I knew a guy with awful, awful seasonal allergies. He moved to Arizona for a year and a half, then moved back -- totally cured, no allergies at all.
Fuck. Shit sucks. I myself have dealt with long lasting (> 1 month) pain and it's horrific. Your whole perspective changes, you think life will never be the same. I can't imagine what it's like when these issues stretch into the years.
Had invasive surgery on my humerus that involved drilling & cutting into bone and muscle. The pain following the nerve block wearing off was indescribable. Groaning was about the most I could do. The pills might as well have been made out of sugar.
You're right, perspective does change permanently. There weren't "seeing the light" moments but I certainly know now who my friends are. I have an interesting view of life now. The residual pain is a reminder that I don't have time for nonsense anymore. A pain in the arm is enough, I don't need a pain in the ass also.
I'm also viciously dismissive now of any legislation or practices that limit controlled substances. I'm not an addict and I shouldn't be punished for other peoples acts.
You're right, perspective does change permanently. There weren't "seeing the light" moments but I certainly know now who my friends are. I have an interesting view of life now. The residual pain is a reminder that I don't have time for nonsense anymore. A pain in the arm is enough, I don't need a pain in the ass also.
I'm also viciously dismissive now of any legislation or practices that limit controlled substances. I'm not an addict and I shouldn't be punished for other peoples acts.
> I'm also viciously dismissive now of any legislation or practices that limit controlled substances. I'm not an addict and I shouldn't be punished for other peoples acts.
I find myself agreeing with this. Opiate overuse and addiction is certainly a problem, but I also question some of the negativity I see regarding their use (from a UK perspective). I was on tramadol (200mg/day) for about six months, and was told, by my consultant, that coming off them "will be worse than quitting heroin". I just stopped taking them, and saw no ill effects. I've twice been on codeine (240mg/day) for around 8-12 months, and was given similar, albeit less severe, warnings about withdrawal. In both cases, there were no side effects upon stopping. I have to wonder if such warnings make withdrawal symptoms more likely through the nocebo effect[1].
They certainly have been misused in many ways, but they also have their place and make long-term pain much easier to deal with.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3352765/
I find myself agreeing with this. Opiate overuse and addiction is certainly a problem, but I also question some of the negativity I see regarding their use (from a UK perspective). I was on tramadol (200mg/day) for about six months, and was told, by my consultant, that coming off them "will be worse than quitting heroin". I just stopped taking them, and saw no ill effects. I've twice been on codeine (240mg/day) for around 8-12 months, and was given similar, albeit less severe, warnings about withdrawal. In both cases, there were no side effects upon stopping. I have to wonder if such warnings make withdrawal symptoms more likely through the nocebo effect[1].
They certainly have been misused in many ways, but they also have their place and make long-term pain much easier to deal with.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3352765/
I've also been similarly able to cold turkey quit opiates taken for chronic pain. I know from listening to medical call-in shows that depending on the dose and frequency, that can be a very bad idea. I feel like there must also be some kind of other variable that factors into whether or not you'll experience adverse effects, or otherwise our experiences wouldn't be possible.
If it's a real concern then managing coming off the pills should really be part of the treatment. Don't just leave people to wing it. Did they offer that to you?
I've had unexplained knee pain for almost a decade. I've done everything people recommend, stretches, PT, rolfing (which is great to be honest) etc. I was and am currently in great shape and stretch for 30-60 minutes a day. The only thing I've ever found to work for bad days is over the counter 8mg Codeine tablets you can get in Canada. I can't get them in the US or even for a doctor to consider it, they're terrified of prescribing pain medicine. Because of Covid I haven't been able to go to Canada for a while and I'm worried what will happen in the next few months. The over reaction to opioid abuse and other people abusing the system has really punished people with chronic pain. I have friends who have been on opioids of pain management, veterans, getting cut off cold turkey by their physicians.
I need azulfidine (sulfasalazine, salazopyrine) to control my arthritis flare ups. It suddenly disappeared from pharmacies due to messed up logistics of precursors. It really made me aware of how totally dependent I am on this product of complex globalized industry and how if it was a fun or addictive recreational drug someone would have come up with a way to cook it in your backyard
Likewise, I broke/dislocated/tore ligaments in my ankle simultaneously and required nerve block for the surgery. By far the worst part of my injury was coming off the nerve block at 5am and taking a Percocet every 30 minute until I could fall asleep at 9am while holding back my groans so as to not wake up anyone else in the house.
My anecdote was I once asked for a prescription for 1 Percocet per month for the one time a month I need serious pain relief and was referred to physio therapy after having already done 2 years of it. I even had my previous prescription from the surgery with 40 out of the 60 pills remaining to offer as proof of my none addiction. I often wonder how many live with chronic pain because of similar circumstances.
My anecdote was I once asked for a prescription for 1 Percocet per month for the one time a month I need serious pain relief and was referred to physio therapy after having already done 2 years of it. I even had my previous prescription from the surgery with 40 out of the 60 pills remaining to offer as proof of my none addiction. I often wonder how many live with chronic pain because of similar circumstances.
Sometimes it ends up being over a decade and more than half your life when you're not even in your mid 20's yet because U.S. healthcare accessibility is fucking garbage, especially for those with abusive domestic situations.
I work with cannabis and CBD/CBG/CBN/CBDV/CBN-D.
I understand that others view may be that this has been marketed to death (in some very MLM-esque ways).
These products either help you or they don't. Some people with ocular pressure disorders can see large improvements to quality of life (vision) by using crude oil CBD. Nerve damaged individuals sometimes see relief with CBG. People with chronic sleep disorders can sometimes find relief with CBN / D9THC combos, while still others utilize D9 THC by itself to stimulate appetite, and still others may use products that contain D9 THC / THCV combinations to lose weight.
I just wanted to state that most of the stuff regarding everyone and their brother using CBD products to relax and have reduced anxiety is bullshit lifestyle business snake-oil, but those same products can immensely help a small fraction of the population struggling with life-altering pain management issues. Please don't discount the above cannabinoids when searching for solutions.
I understand that others view may be that this has been marketed to death (in some very MLM-esque ways).
These products either help you or they don't. Some people with ocular pressure disorders can see large improvements to quality of life (vision) by using crude oil CBD. Nerve damaged individuals sometimes see relief with CBG. People with chronic sleep disorders can sometimes find relief with CBN / D9THC combos, while still others utilize D9 THC by itself to stimulate appetite, and still others may use products that contain D9 THC / THCV combinations to lose weight.
I just wanted to state that most of the stuff regarding everyone and their brother using CBD products to relax and have reduced anxiety is bullshit lifestyle business snake-oil, but those same products can immensely help a small fraction of the population struggling with life-altering pain management issues. Please don't discount the above cannabinoids when searching for solutions.
Thanks. I have some minor nerve pain that sometimes flares up to moderate nerve pain, and another issue that makes taking NSAIDs contra-indicated (so I just grin-and-bear-it). I’ll look into this as a possible backup solution.
I had pretty extensive shoulder repair surgery a year and a half ago. I was amazed at how much recovery hurt, and I can't take opioids (too many physical and mental side effects).
I ended up smoking a ton of weed. It really helped so much.
The funny part was going from an occasional recreational smoker to using it medicinally. At first I was like, it's 7 in the morning, I don't want to get stoned, this sucks. But it worked at managing pain. I was not in pain and I could rest; I could rest so I could heal.
End result was anger and frustration at our stupid drug laws, mostly. But also, my shoulder works again, and I know how to manage pain, if anything happens again.
I ended up smoking a ton of weed. It really helped so much.
The funny part was going from an occasional recreational smoker to using it medicinally. At first I was like, it's 7 in the morning, I don't want to get stoned, this sucks. But it worked at managing pain. I was not in pain and I could rest; I could rest so I could heal.
End result was anger and frustration at our stupid drug laws, mostly. But also, my shoulder works again, and I know how to manage pain, if anything happens again.
Hello, Scott Hanselman.
Thank you for writing this. It has fostered some good discussion on HN on a very difficult topic that usually goes poorly, so you must have done something right.
I hope you get well soon, even if it takes some kind of miracle (in the sense of "wondrous happening," not necessarily in the sense of "intervention from god" if that second thing isn't your cup of tea). Sometimes people do get medical/health miracles.
All my best,
Some Random Internet Stranger named Doreen.
Thank you for writing this. It has fostered some good discussion on HN on a very difficult topic that usually goes poorly, so you must have done something right.
I hope you get well soon, even if it takes some kind of miracle (in the sense of "wondrous happening," not necessarily in the sense of "intervention from god" if that second thing isn't your cup of tea). Sometimes people do get medical/health miracles.
All my best,
Some Random Internet Stranger named Doreen.
I am also recovering from a frozen shoulder, but thankfully it was not nearly as bad as the author. This is also my second time having it. Both times have required months of PT, mostly stretching and some strength training.
As for the pain during PT, I found it helpful to talk to the physical therapist, which distracted my mind from lower-level pain. When the pain increased, I’d temporarily stop talking and free my mind of thoughts, trying to reach a near-meditative state. I’d let the pain come and go, like clouds in the sky. Some days that was easier than others. Perhaps it helped that I had already learned some meditative techniques years ago.
As for the pain during PT, I found it helpful to talk to the physical therapist, which distracted my mind from lower-level pain. When the pain increased, I’d temporarily stop talking and free my mind of thoughts, trying to reach a near-meditative state. I’d let the pain come and go, like clouds in the sky. Some days that was easier than others. Perhaps it helped that I had already learned some meditative techniques years ago.
How do you recover from this? Isn’t this a genetic disease?
Unknown.
Most common in post menopausal women with an autoimmune disorder such as diabetes or thyroid problem. i.e. not me but I got it anyway.
You "recover" when your body stops recognizing the soft tissue around your shoulder as the enemy and it has a chance to heal. For most it takes 9-18 months (per shoulder) and stops when it does regardless of physical therapy. The one thing that seems to help is a cortisone shot _early_ which seems to knock about three months off the the disease's course. Shots later do not have the same effect.
Logically it is an auto immune response, to what I have no clue. Starts like any strain you don't quite remember how you got and just keeps getting worse.
If you get it in one shoulder you are very likely to get it in the other. But you are more likely to recognize it early and get that cortisone shot.
You "recover" when your body stops recognizing the soft tissue around your shoulder as the enemy and it has a chance to heal. For most it takes 9-18 months (per shoulder) and stops when it does regardless of physical therapy. The one thing that seems to help is a cortisone shot _early_ which seems to knock about three months off the the disease's course. Shots later do not have the same effect.
Logically it is an auto immune response, to what I have no clue. Starts like any strain you don't quite remember how you got and just keeps getting worse.
If you get it in one shoulder you are very likely to get it in the other. But you are more likely to recognize it early and get that cortisone shot.
In my case, the recovery required physical therapy. My shoulders have also improved somewhat on their own over time. From what I’ve read, it’s not genetic. My shoulder injuries were each caused by a specific physical event, and then gradual loss of range occurred along with increasing pain.
oh my. yes.
first it will end.
Get full range of motion back? maybe not,
but more than enough how much it will not hurt.
Biggest thing I wished they mentioned is that constant pointless pain changes your brain in
ways it is difficult to see from inside.
Consider mitigating that earlier.
If anyone is still tolerating you at home or work tell them I promise that you they knew will be back someday soon. (but no hugs)
In the bright side once it has run its course through both shoulders you will never have to worry about getting it again.
Consider mitigating that earlier.
If anyone is still tolerating you at home or work tell them I promise that you they knew will be back someday soon. (but no hugs)
In the bright side once it has run its course through both shoulders you will never have to worry about getting it again.
I know exactly where he is right now.
I broke my clavicle and had it plated back together. It was only for 8 months until I had the hardware removed, but it was constant, jaw clenching, phone-ringing-in-the-ears white-out pain that lasted for months.
There's no position in you can sit in to relieve it. You can't move or adjust to make it go away, even for a minute (there were a few times it went away, but very few). It's not like when you cut yourself doing something dumb and the initial pain subsides. This pain just. kept. going. Initially I was on Dilaudid, and then morphine, but the constipation was awful, and mental disassociation and hallucinations were scary. I started Oxy, but was scared of addiction so I didn't take it as often. I just kept popping Ibuprofin like candy. I even meditated, but it didn't do much because it's hard to learn something like that on-demand.
The pain finally went away after the hardware removal. But you know what? I have a persistant fear of being like that again. I can't imagine what I would do if it was every day and there was no known source like OP.
I broke my clavicle and had it plated back together. It was only for 8 months until I had the hardware removed, but it was constant, jaw clenching, phone-ringing-in-the-ears white-out pain that lasted for months.
There's no position in you can sit in to relieve it. You can't move or adjust to make it go away, even for a minute (there were a few times it went away, but very few). It's not like when you cut yourself doing something dumb and the initial pain subsides. This pain just. kept. going. Initially I was on Dilaudid, and then morphine, but the constipation was awful, and mental disassociation and hallucinations were scary. I started Oxy, but was scared of addiction so I didn't take it as often. I just kept popping Ibuprofin like candy. I even meditated, but it didn't do much because it's hard to learn something like that on-demand.
The pain finally went away after the hardware removal. But you know what? I have a persistant fear of being like that again. I can't imagine what I would do if it was every day and there was no known source like OP.
Wow. Not chronic pain, but I've dealt with chronic debilitating lack of sleep (brought on by a strong urge to urinate all night). I got to some places of really deep despair with feeling complete exhaustion but no ability to sleep for any substantial period of time.
It took a while before I found some things that worked between sleep doctors, urologist, physical therapists, primary doctors etc. It was particularly frustrating because frequent urination was seen as a kind of low-level thing. Still it was causing great difficulty where I could barely keep functioning.
Ultimately, what ended up mattering was (1) enlisting family to help advocate for me to my doctors (2) getting 2nd and 3rd opinions (3) being persistent and continuing to try new things, not being stuck with one doctors opinion
I got the impression that unless you/someone is advocating for you strongly and working actively to solve the problem, continuing to keep going back to the same doctor over and over and trying to give them the benefit of the doubt doesn't work.
It took a while before I found some things that worked between sleep doctors, urologist, physical therapists, primary doctors etc. It was particularly frustrating because frequent urination was seen as a kind of low-level thing. Still it was causing great difficulty where I could barely keep functioning.
Ultimately, what ended up mattering was (1) enlisting family to help advocate for me to my doctors (2) getting 2nd and 3rd opinions (3) being persistent and continuing to try new things, not being stuck with one doctors opinion
I got the impression that unless you/someone is advocating for you strongly and working actively to solve the problem, continuing to keep going back to the same doctor over and over and trying to give them the benefit of the doubt doesn't work.
I didn’t realize how privileged I was until a relatively minor bike crash left me with a hard limp for a week or two. There’s a lot of lessons there (how can we design streets better? why don’t we focus on accessibility? why is the healthcare system hard to navigate?) but honestly the one that really hit me is how privileged I am to be healthy.
It's remarkable how many people I know, including myself, had significant bicycle-related trauma. I broke my ankle in three places due to a fall (do not recommend by the way, once the shock wears off the pain is pretty bad, and then after a while you have to walk on your still partially broken foot so that it heals properly). A friend of mine broke a clavicle. Another friend nearly fractured her spine. I sold my bike after the accident and wasn't tempted to buy another one since.
Not disputing, not arguing, just trying to understand.
How come you and people you know suffered so many accidents? Were you commuting, competing, mountain biking, what? Is the weather bad?
Maybe my serious accident is waiting for me still, but the only close call I had was due to my own recklessness. Just riding a bike going from A to B? I can see how one could get injured, but not THAT seriously, unless it's due to a collision with a vehicle. Or it's something involving the head.
I don't know anyone that got seriously injured in bike accidents. I'm trying to understand if I'm just naive (and lucky) or if there's something I should avoid.
How come you and people you know suffered so many accidents? Were you commuting, competing, mountain biking, what? Is the weather bad?
Maybe my serious accident is waiting for me still, but the only close call I had was due to my own recklessness. Just riding a bike going from A to B? I can see how one could get injured, but not THAT seriously, unless it's due to a collision with a vehicle. Or it's something involving the head.
I don't know anyone that got seriously injured in bike accidents. I'm trying to understand if I'm just naive (and lucky) or if there's something I should avoid.
Honestly, a lot of it depends on the design of the streets you ride on. Most of the people I know (myself included) have been injured commuting from being doored, having a driver make a blind left turn, having to merge into fast traffic because a car is parked in the bike lane, etc.
For me it was a fall as I was trail biking. Not anything white-knuckle, just a fairly pedestrian trail. I fell off and folded my ankle 90 degrees inward. For the guy who broke his clavicle it was slippery pavement - some leaves - he fell sideways. Don't know about the gal.
Yeah I got hit by a bike because someone wasn’t following the law and now I have a chronic issue
This also honestly makes me wonder how hard it must be for wild animals who get injured, and need to worry about predators throughout the whole recovery process.
A serious injury that limits mobility is certain death from starvation for many or most species. Adults of most species don't feed each other. This is true enough that finding a body or fossil with a healed fracture of a long bone is very interesting as it implies something about social behavior.
That's such a horrible death. Nature is brutal. One would wish there were a kill switch if you knew you were both in pain and going to die of starvation. Having that might even save some of your species members so that predators can't guess where the rest of the healthy ones are.
It's also strange that social behaviors didn't evolve in more species. They seem to have the brains to migrate thousands of miles and borrow homes, yet they don't have the brains to help members of their species, which would help them proliferate.
It's also strange that social behaviors didn't evolve in more species. They seem to have the brains to migrate thousands of miles and borrow homes, yet they don't have the brains to help members of their species, which would help them proliferate.
There's a reason most wild animals don't live more than 5 or 6 years. Imagine living as long as a toddler, tops, because your body is completely worn out.
You brain somehow get used to the pain when it meticulously destroy your body for no reason, no danger, no signal everyday. I have ankylosing spondylitis.
Lasg time I heavily cut my finger while cooking, didnt feel a thing. Didnt feel anything on my first tattoo - the tattoo artist was quite surprised.
Now I feel a bit better with some anti IL17 medicine.
And yet some day the pain comes back with new, untold and unreasonable levels of pain and you can't explain that to most people. The scale has changed and most of you will never feel that - or just once in a while. But not enough, not everyday with this consistency that shreds through your mental ability to take it and to shatter your life.
I would trade a night of torture against my health back.
And then the doctor with all his knowledge says that no - no other painkillers for AS ! Just nsaids !
Please donate for autoimmune disorders, they are awful
Lasg time I heavily cut my finger while cooking, didnt feel a thing. Didnt feel anything on my first tattoo - the tattoo artist was quite surprised.
Now I feel a bit better with some anti IL17 medicine.
And yet some day the pain comes back with new, untold and unreasonable levels of pain and you can't explain that to most people. The scale has changed and most of you will never feel that - or just once in a while. But not enough, not everyday with this consistency that shreds through your mental ability to take it and to shatter your life.
I would trade a night of torture against my health back.
And then the doctor with all his knowledge says that no - no other painkillers for AS ! Just nsaids !
Please donate for autoimmune disorders, they are awful
I had chronic, severe, debilitating pain for years until I read the book: The Mindbody Prescription by Dr. Sarno [1]
Someone on HN suggested it in a "carpal tunnel" thread. I didn't have carpal tunnel. I had a completely destroyed knee. No more cartilage. Bone on bone with every step I took (confirmed by MRI). Cortisone didn't make a bit of difference. I couldn't walk 20 feet without mind boggling pain.
That book changed my life. I can walk 10 miles (mostly) pain free now. I still don't have any cartilage. I never had surgery or did PT. The book explains it all, but the TLDR is that it's the brain that's causing the issue. You can have incredible structural issues. Herniated discs in the back. Zero cartilage in the knee. And the reason you feel pain isn't the structural issue, but your brain's response to it.
I wager that book would be life changing for 90 percent of chronic pain sufferers if they gave it a chance.
(Yeah, a lot of people are going to chime in and say that their pain is different or an MRI confirmed their structural issue or whatever. Yeah, I get it. I was there too. Frozen shoulder is almost certainly a manifestation of TMS, at least for some large number of people. For those who understand the mechanism, it's clear that 2020 is going to be a bad year for people in terms of chronic pain. It doesn't need to be.)
[1] https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?...
Someone on HN suggested it in a "carpal tunnel" thread. I didn't have carpal tunnel. I had a completely destroyed knee. No more cartilage. Bone on bone with every step I took (confirmed by MRI). Cortisone didn't make a bit of difference. I couldn't walk 20 feet without mind boggling pain.
That book changed my life. I can walk 10 miles (mostly) pain free now. I still don't have any cartilage. I never had surgery or did PT. The book explains it all, but the TLDR is that it's the brain that's causing the issue. You can have incredible structural issues. Herniated discs in the back. Zero cartilage in the knee. And the reason you feel pain isn't the structural issue, but your brain's response to it.
I wager that book would be life changing for 90 percent of chronic pain sufferers if they gave it a chance.
(Yeah, a lot of people are going to chime in and say that their pain is different or an MRI confirmed their structural issue or whatever. Yeah, I get it. I was there too. Frozen shoulder is almost certainly a manifestation of TMS, at least for some large number of people. For those who understand the mechanism, it's clear that 2020 is going to be a bad year for people in terms of chronic pain. It doesn't need to be.)
[1] https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?...
I came here to say this, thanks. Sometimes I hesitate from posting about this because It's a very sensitive topic. The reason for your pain might be totally different from mine and I hate to assume what worked for me would work for you, etc. In any case, I was also changed by reading Sarno's books and that's the interesting part.
My pain started in my chest, left and right. Then it transitioned to the center, I went to the ER thinking I was having a heart attack. Got blood tests and studies done. In the following months the pain took over other parts of my body and my arms, legs and back were hurting a lot. I was having a very hard time working, I had to ask for a couple of weeks off and try to figure out what was going on. Sometimes the pain would go away for a few hours and then come back. I didn't have a clue of what was going on because I couldn't find a consistent pattern, it was just moving everywhere and I couldn't even play with my kid, which was killing me.
I was browsing YouTube and was reading about this guy that had Carpal Tunnel, I was curious because I was trying to avoid making my pain worse. So when I was reading the comments, I saw someone wrote something like "Read Sarno's book and thank me later".
I was intrigued and started reading about him. I started with his book: The Divided Mind. From there it all started to change gradually. I found a local physician that specializes in TMS, and that help me so much. after a few weeks it all started to fade away considerably. Today I feel great. All this happened in a period of like 8 months.
My pain started in my chest, left and right. Then it transitioned to the center, I went to the ER thinking I was having a heart attack. Got blood tests and studies done. In the following months the pain took over other parts of my body and my arms, legs and back were hurting a lot. I was having a very hard time working, I had to ask for a couple of weeks off and try to figure out what was going on. Sometimes the pain would go away for a few hours and then come back. I didn't have a clue of what was going on because I couldn't find a consistent pattern, it was just moving everywhere and I couldn't even play with my kid, which was killing me.
I was browsing YouTube and was reading about this guy that had Carpal Tunnel, I was curious because I was trying to avoid making my pain worse. So when I was reading the comments, I saw someone wrote something like "Read Sarno's book and thank me later".
I was intrigued and started reading about him. I started with his book: The Divided Mind. From there it all started to change gradually. I found a local physician that specializes in TMS, and that help me so much. after a few weeks it all started to fade away considerably. Today I feel great. All this happened in a period of like 8 months.
In your case, I could definitely see the mind-body connection. And even in the case of some carpal tunnel.
But I went over some Sarno-related forum, and the mainstream view seems to be that pretty much all chronic neuropathic pain (including all NCV and EMG-confirmed pain) and all chronic musculoskeletal pain (including structural issues on x-ray) are mind-body. And there's a significant nutty minority who seems to think even some cancer and such is mind-body.
Also, how does it explain people who have chronic pain, then surgery, then they never experience pain again?
I'd like to buy into this, but that just seems vaccine conspiracy level crazy - overly simplistic for most cases to say the least. Maybe I'm wrong.
That said, I do strongly believe that your state of mind has a huge impact with how you deal with chronic pain. I know that's true.
But I went over some Sarno-related forum, and the mainstream view seems to be that pretty much all chronic neuropathic pain (including all NCV and EMG-confirmed pain) and all chronic musculoskeletal pain (including structural issues on x-ray) are mind-body. And there's a significant nutty minority who seems to think even some cancer and such is mind-body.
Also, how does it explain people who have chronic pain, then surgery, then they never experience pain again?
I'd like to buy into this, but that just seems vaccine conspiracy level crazy - overly simplistic for most cases to say the least. Maybe I'm wrong.
That said, I do strongly believe that your state of mind has a huge impact with how you deal with chronic pain. I know that's true.
> Frozen shoulder is almost certainly a manifestation of TMS, at least for some large number of people. For those who understand the mechanism, it's clear that 2020 is going to be a bad year for people in terms of chronic pain. It doesn't need to be.
I like Dr. Sarno's work but his thinking around TMS is IMO the weakest part.
The main insight is really just the fact that a lot of pain doesn't reliably map to any physical conditions. Beyond that we don't know too much. We can infer the brain is involved but not necessarily how. Dr. Sarno takes a psychoanalytic approach focusing on repressed emotions and so forth. But one can come up with many other explanations. One's ideas about pain itself may be a factor.
If deep seated psychological problems were to blame it wouldn't explain how so many people get tremendous relief by simply reading the book.
I like Dr. Sarno's work but his thinking around TMS is IMO the weakest part.
The main insight is really just the fact that a lot of pain doesn't reliably map to any physical conditions. Beyond that we don't know too much. We can infer the brain is involved but not necessarily how. Dr. Sarno takes a psychoanalytic approach focusing on repressed emotions and so forth. But one can come up with many other explanations. One's ideas about pain itself may be a factor.
If deep seated psychological problems were to blame it wouldn't explain how so many people get tremendous relief by simply reading the book.
Thank you for sharing. I've recommended Sarno a few times on HN and always wrestle with the guilt of offering unsolicited advice. But I figure if it helps even saves just one or two people from months/years/decades of pain, it's worth it.
Funny how you don't think about pain and how debilitating it can be until you experience it. I had some kind of bizarre arthritis in my ankle at the beginning of the year. First they said it was gout. When gout remedies didn't help, they took a fluid sample. Not gout, not rheumatoid arthritis, not another kind of arthritis. Basically they were stumped. Luckily it went away after about a month. But it was utterly debilitating while I had it. No good sleep angle, couldn't walk, couldn't get it off my mind. Changed my life.
Sympathies for everyone out there dealing with ongoing pain.
Sympathies for everyone out there dealing with ongoing pain.
Frozen shoulder is no joke. I didn’t see the domain name when I clicked on the heading. I have dealt with frozen shoulder off and on for about 2 years. Fortunately I think I’m on the downside of the pain but it can be a mind####. I was otherwise healthy but I couldn’t raise my right arm over my shoulder. It can cause a spin out of worry which I’m sure makes it worse. Thanks Scott for sharing your story.
I suffer from a chronic autoimmune condition that causes left-side chest pain (sometimes quite severe). Despite extensive medical workup, we have not been able to get it to go away.
One thing you don't hear about very much: more than a full third of people with atypical chest pain develop anxiety or panic disorders. I did.
I thought people could get used to anything, but years later, I am not used to it. Bodies suck.
One thing you don't hear about very much: more than a full third of people with atypical chest pain develop anxiety or panic disorders. I did.
I thought people could get used to anything, but years later, I am not used to it. Bodies suck.
The author of this article is in far more pain than I have ever experienced. I will, however, try to pitch in because I have had chronic intestinal issues and I've found a few hacks to make it feel better.
For me it helps to consider how many people have had it worse. It's cynical, I know, but knowing that diarrhea killed more people than guns in the USA civil war is comforting. The Union soldier who died squatting over a pit while cannons boom and flies descend makes me remember how comfortable my climate-controlled bathroom is.
Another thing I've learned is to not feel guilty when I've abandoned whatever I was up to before the pain started. I'm lucky to have a partner who is very forgiving when we are traveling or doing leisure activities and I have to rush to the nearest bathroom. It's not your fault that you're not doing what you were supposed to be doing. Don't hesitate to curse your maladies for interrupting your life. It feels good to stick it to the man, even when the man is your own digestive system.
For me it helps to consider how many people have had it worse. It's cynical, I know, but knowing that diarrhea killed more people than guns in the USA civil war is comforting. The Union soldier who died squatting over a pit while cannons boom and flies descend makes me remember how comfortable my climate-controlled bathroom is.
Another thing I've learned is to not feel guilty when I've abandoned whatever I was up to before the pain started. I'm lucky to have a partner who is very forgiving when we are traveling or doing leisure activities and I have to rush to the nearest bathroom. It's not your fault that you're not doing what you were supposed to be doing. Don't hesitate to curse your maladies for interrupting your life. It feels good to stick it to the man, even when the man is your own digestive system.
I'm really sorry for everyone here suffering. Just want to voice my support.
I wish you to get better and pain free some day.
I have a legendarily bad back, as does my father. One time at the office it seized up and and floored me for 45 minutes as coworkers walked by. My right leg went completely numb, and didn’t get back to normal for months.
Don’t need any suggestions, I have tried them all, lots of doctors, yes yes yes. I manage. But it is a pain in the back to deal with.
Don’t need any suggestions, I have tried them all, lots of doctors, yes yes yes. I manage. But it is a pain in the back to deal with.
whats the actual diagnosis?
I have several discs in my lower back that are impinging on my spine. They are bulging out.
I really feel for him, and hope he’s able to pull through. Dealing with one major health issue is a big deal. I can’t imagine dealing with multiple issues and still functioning to help others.
Gratitude for being “healthy enough” is what I try to practice, because I know that things could be unimaginably worse in a matter of days or weeks as time passes.
We’ve come a long, long way in healthcare — both in terms of preventative measures and curative measures — in the last one century. But many a times I’m still left with the feeling that the progress required, with the progress being affordable as well as accessible to all, is orders of magnitude more than what we’ve achieved. Almost makes me wish for a time machine so I could go two hundred years in the future and marvel at the medical achievements and how many issues are easily dealt with (considering a mostly-positive future scenario).
Gratitude for being “healthy enough” is what I try to practice, because I know that things could be unimaginably worse in a matter of days or weeks as time passes.
We’ve come a long, long way in healthcare — both in terms of preventative measures and curative measures — in the last one century. But many a times I’m still left with the feeling that the progress required, with the progress being affordable as well as accessible to all, is orders of magnitude more than what we’ve achieved. Almost makes me wish for a time machine so I could go two hundred years in the future and marvel at the medical achievements and how many issues are easily dealt with (considering a mostly-positive future scenario).
Have had neck and back pain for 10 years now, I've learned to live with it, sometimes it hurts so much that I'm wondering if I'm going to get paralyzed, or if I'll be in 5-10 years, and sometimes I forget the pain until it comes back. No doctor has been able to help, some doctors want me to do PT, some want me to do chiro, none helped. Some doctors don't want me to do X-rays, some are OK with it, after some X-rays some say I have an inverted vertebra, some say that I don't. At this point I have learned to understand that no doctors understand back pain, and that unless I'm willing to pay top money for high-end hospitals, I'll probably live all my life in pain until it gets so bad I'll end up killing myself or something. Well we'll see...
What seems to work for me sometimes: jogging and deep breathing.
What seems to work for me sometimes: jogging and deep breathing.
I have also had trouble with lots of inconsistent information from doctors. In my case urologists. Interstitial Cystitis / Chronic Pelvic Pain Syndrome. Some doctors say it's an allergy thing. Others tell you to do pelvic floor PT. Some tell you its an anxiety thing. Every doctor takes a different tack.
People wonder why folks question doctors, it's because for many issues, we often are forced to substitute our own judgment of what works from trying a menu of inconsistent medical opinions.
People wonder why folks question doctors, it's because for many issues, we often are forced to substitute our own judgment of what works from trying a menu of inconsistent medical opinions.
Wonder if he's able to code. I have Thoracic Outlet Syndrome (TOS) and work at a FANG. Everyday and every line of code is a challenge. Planning to push through for a few more years before I can find a new career where I don't haave to type as much but I don't know what yet. Really sucks.
Haha, I actually just sent him an email about TOS just in case he'd never heard about it. Large amount of people with TOS also having frozen shoulder as a down the chain issue.
Have you been seen by a good TOS doc yet/considered surgery? I have bilateral NTOS + left sided VTOS. I'll soon be having a first rib resection (FRRS) and scalenectomy, possibly a pec minor resection down the line, with Dr. Dean Donahue at Boston Massachusetts General Hospital. Donahue is arguably the best surgeon in the US, taking in a large amount of cases that have already had a botched surgery and being able to give them nearly total/total recovery.
There's around 5-10 great surgeons within the US though, and this unfortunately seems to be a condition it which surgery is mostly the best option. As much as I absolutely despise Facebook, here's two really great groups for TOS info/resources/top surgeons if you're not yet aware.
https://m.facebook.com/groups/15231937182
https://m.facebook.com/groups/205345126171314
Have you been seen by a good TOS doc yet/considered surgery? I have bilateral NTOS + left sided VTOS. I'll soon be having a first rib resection (FRRS) and scalenectomy, possibly a pec minor resection down the line, with Dr. Dean Donahue at Boston Massachusetts General Hospital. Donahue is arguably the best surgeon in the US, taking in a large amount of cases that have already had a botched surgery and being able to give them nearly total/total recovery.
There's around 5-10 great surgeons within the US though, and this unfortunately seems to be a condition it which surgery is mostly the best option. As much as I absolutely despise Facebook, here's two really great groups for TOS info/resources/top surgeons if you're not yet aware.
https://m.facebook.com/groups/15231937182
https://m.facebook.com/groups/205345126171314
I had open heart surgery at age 27, and the months after were full of pain in my abdomen and genital areas.
I went to multiple urologists, GI docs, etc. and was ultimately diagnosed with “chronic pelvic pain disorder”: basically a wastebasket diagnosis after they’ve eliminated all other culprits.
It’s not known exactly what causes it, but a leading idea (that makes sense in my case especially) is that you’re basically having a Charlie horse (cramp) in your prostate that lasts months. It can occur after a serious surgery or traumatic event.
Anyway, there’s no cure, but after months of stretching it’s mostly gone now.
While health issues still persist in my life, I feel healthy enough now to do basically everything in my life that I did before the surgery. But the whole incident really changed the way I look at health, life, and health care/awareness in America.
I went to multiple urologists, GI docs, etc. and was ultimately diagnosed with “chronic pelvic pain disorder”: basically a wastebasket diagnosis after they’ve eliminated all other culprits.
It’s not known exactly what causes it, but a leading idea (that makes sense in my case especially) is that you’re basically having a Charlie horse (cramp) in your prostate that lasts months. It can occur after a serious surgery or traumatic event.
Anyway, there’s no cure, but after months of stretching it’s mostly gone now.
While health issues still persist in my life, I feel healthy enough now to do basically everything in my life that I did before the surgery. But the whole incident really changed the way I look at health, life, and health care/awareness in America.
What kind of stretching helped?
[deleted]
The OP has "frozen shoulder". IIRC usual treatment is to immobilize the arm and eventually, after a year (or two) the shoulder will "unfreeze". When I read about frozen shoulder I was astonished: no good underlying diagnosis, little knowledge of what caused it, but clearly knowledge gained in the hardest way - experience over generations.
And in this case, rather than wait a year, someone decided to perform "adhesive capsular release" surgery not once, but twice! What happened to "Primum non nocere": "First, do no harm"?
My hat is off to the person(s) who first understood that doing nothing to the shoulder was the correct therapy. And woe to those who prolong suffering by "fixing" what they do not understand.
And in this case, rather than wait a year, someone decided to perform "adhesive capsular release" surgery not once, but twice! What happened to "Primum non nocere": "First, do no harm"?
My hat is off to the person(s) who first understood that doing nothing to the shoulder was the correct therapy. And woe to those who prolong suffering by "fixing" what they do not understand.
I remember reading a guide on various bug stings and how to treat them. The treatments were ordered by how painful the sting was. For the most painful sting, the tarantula wasp, the recommendation was to lie down flat on the ground and scream until the pain stopped.
My left knee occasionally locks up and if the little dance I perfected over the years to unlock it doesn't work, I have to straighten my leg with one swift move - something that brings pain which I am only able to describe as "magical" or "surreal".
USG yielded no results so I've been sent to have an MRI done, but corona got in the way of that.
Exercise helps in my case fortunately. My friend wasn't so lucky and once he started experiencing chronic pain, it never went away, despite efforts in this direction, and eventually started affecting his career.
Pain changes you. Especially if it's sudden and unpredictable. Anxiety sets in eventually.
USG yielded no results so I've been sent to have an MRI done, but corona got in the way of that.
Exercise helps in my case fortunately. My friend wasn't so lucky and once he started experiencing chronic pain, it never went away, despite efforts in this direction, and eventually started affecting his career.
Pain changes you. Especially if it's sudden and unpredictable. Anxiety sets in eventually.
> The cognitive dissonance is overwhelming. Your body says you're actively dying but your conscious brain can - must - override it and let the pain flow freely. You observe it, rather than obstruct it.
I have been doing this my entire life to every injury I have ever had, from small to big. As soon as something started to hurt me I did that movement so much until the pain vanished. I never let my body rust. Being active, healthy exercise, body stretches, feeling the blood rush through your veins and the sweat drop off your face is the best way to deal with any problems in life. It helps with mental and physical issues.
I have been doing this my entire life to every injury I have ever had, from small to big. As soon as something started to hurt me I did that movement so much until the pain vanished. I never let my body rust. Being active, healthy exercise, body stretches, feeling the blood rush through your veins and the sweat drop off your face is the best way to deal with any problems in life. It helps with mental and physical issues.
I am just connecting dots here with intermittent fasting article that was posted somewhere yesterday.
Scott is writing about cognitive dissonance where you feel the pain and you just want to stop physical therapy. But going through the pain and doing therapy is going to make it all better in the long term.
Main point would be staying in bed all days is easier than exercising, not eating whole day is harder than eating sweets all day, going through more pain to relieve it later is harder as well. Unfortunately we are mostly wired to get short term benefits right now and a person has to really put in effort to go for long term benefits.
Scott is writing about cognitive dissonance where you feel the pain and you just want to stop physical therapy. But going through the pain and doing therapy is going to make it all better in the long term.
Main point would be staying in bed all days is easier than exercising, not eating whole day is harder than eating sweets all day, going through more pain to relieve it later is harder as well. Unfortunately we are mostly wired to get short term benefits right now and a person has to really put in effort to go for long term benefits.
I have nothing to add other than I think Scott Hanselman is a wealth of information and a legitimate gem in the programming community. I hope he can figure this out, and I hope he doesn't stay in horrible pain forever.
Feel better, man.
Feel better, man.
Scott was a huge inspiration for me when I was a .net developer. I've recently become reacquainted with his work and his youtube computer explainers are great. Its sad to see him debilitated like this.
As migraine sufferer, I find relief in only two thoughts:
- my migraines last 4 hours and happen once every 3-6 months, and there are people who have 72hs long migraines, or migraine every few days
- I could've had cluster headache instead. People suffering from those call them "suicide headache" and are known to hit their head against different objects, because losing consciousness or felling other pain is preferable to it: https://www.youtube.com/watch?v=OO5oDaG45kE
- my migraines last 4 hours and happen once every 3-6 months, and there are people who have 72hs long migraines, or migraine every few days
- I could've had cluster headache instead. People suffering from those call them "suicide headache" and are known to hit their head against different objects, because losing consciousness or felling other pain is preferable to it: https://www.youtube.com/watch?v=OO5oDaG45kE
I get cluster headaches (as part of a larger pain condition). The easiest way I can think of describing it is that it starts out feeling sort of like a painful headache on one side of your head, that rapidly becomes more painful and _never stops_. The attacks can last literally months (My attacks tend to be 2-months long, two or three times a year).
The nickname of "suicide headache" is absolutely earned. Your face contains some of the most painful nerves in your body. Light them all up like a christmas tree, and keep it lit for months. Drive an icepick into your eye and keep that pain there for months. There is no escape. The pain can and will drive you from sleep, and there is basically no pain medication that will do anything noticeable.
I would never wish this upon anyone. Friend or foe.
---
All that being said, pain is a deeply personal thing. If your migraines are putting you in the worst pain that you know, then that's the very worst thing that you know. Coping with it means that you're dealing, and deserve sympathy, and understanding.
I don't get migraines, never have, so I don't understand what it's like. You have my sympathy for it. I am sorry that you suffer is this way, and I wish that it wasn't something that you consider part of your normal. I wish there was something I could do to ease your pain. Your living with it, is something to be proud of.
The nickname of "suicide headache" is absolutely earned. Your face contains some of the most painful nerves in your body. Light them all up like a christmas tree, and keep it lit for months. Drive an icepick into your eye and keep that pain there for months. There is no escape. The pain can and will drive you from sleep, and there is basically no pain medication that will do anything noticeable.
I would never wish this upon anyone. Friend or foe.
---
All that being said, pain is a deeply personal thing. If your migraines are putting you in the worst pain that you know, then that's the very worst thing that you know. Coping with it means that you're dealing, and deserve sympathy, and understanding.
I don't get migraines, never have, so I don't understand what it's like. You have my sympathy for it. I am sorry that you suffer is this way, and I wish that it wasn't something that you consider part of your normal. I wish there was something I could do to ease your pain. Your living with it, is something to be proud of.
I get both! Mostly clusters, but on occasion I'll have a looooong headache that I can't shake, and after a while I start feeling the nausea and realize it's a migraine.
Sigh... 2020 has gotten to my man Hanselman as well. I have been in a lot of emotional pain this year, likes of which I have never experienced before. Reading stories here now I realize I should be thankful to be alive and functional and still reach out and lift that cup of joe. That mundane action now looks amazing. My best wishes to Scott on his way to healing. His writings have always inspired me including today. May God bring us to the other end of this very dark year.
I have never struggled with mental health until the past couple months when I started having chronic GI trouble. I had to stop going into work and two CT scans, an ER visit, and a colonoscopy later it doesn't seem like I'm any closer to getting better. Waiting on the second CT scan and blood test results now. I just hope they can figure out what it is. Anyway, just wanted to say I get it. I didn't realize the toll physical pain would take on me mentally
Courage to Scott, and sufferers.
One thing, pain and expressing pain is vital. For you and also bonding. It's not a given on how to respond to someone's pain. If you deny someone too much he'll suffer a lot lot more [0]. Now sometimes pain is too intense and we also alienate people around us because they're, most of the time, not ready to understand or bear the load.
[0] something builtin our brains ?
One thing, pain and expressing pain is vital. For you and also bonding. It's not a given on how to respond to someone's pain. If you deny someone too much he'll suffer a lot lot more [0]. Now sometimes pain is too intense and we also alienate people around us because they're, most of the time, not ready to understand or bear the load.
[0] something builtin our brains ?
"Frozen Shoulder"
My mom had it over a decade ago when she was under 60. I saw her in constant pain and it really hurt. She used to get physical therapy, tons of professional heat therapy and forced stretching as well. It lasted for about a year and it went away. She is much older now but that thing hasn't come back yet. I can understand his pain even though I cannot feel it.
My mom had it over a decade ago when she was under 60. I saw her in constant pain and it really hurt. She used to get physical therapy, tons of professional heat therapy and forced stretching as well. It lasted for about a year and it went away. She is much older now but that thing hasn't come back yet. I can understand his pain even though I cannot feel it.
After decades of research into the cellular basis of chronic pain, McNaughton believes he has discovered the fundamentals of a drug that might eradicate it https://archive.is/e1W1X
I don't have physical pain thankfully, but I have severe tinnitus.
I'm unable to work for more than a few hours. I'm having a hard time to fall asleep.
The fear of it getting worse is generating a large amount of stress.
I'm unable to work for more than a few hours. I'm having a hard time to fall asleep.
The fear of it getting worse is generating a large amount of stress.
Mine doesn't bother me during the day, but it does at night. Depending on how tired I am, it may take me anywhere from 20 minutes to 3 hours to fall asleep.
A fan helps me to sleep with tinnitus.
I'm fortunate not to be in any significant pain, beyond the standard aches of nearing 40. Just wanted to say that I empathize with the OP and those of you in the comments here who are dealing with real pain and disability. The fortitude shown in the post and in many of the comments is impressive. I hope things improve for you.
Huh, didn't expect downvotes for this. Did it come across as patronizing or not genuine? I was just struck by what the author and some commenters are dealing with, and the grace with which they handle it. Or did 'empathize' come across as comparing my situation to theirs? Certainly wasn't intended if so.
Thank you Hanselman for saying this and sharing this. “Not everything is code.”
What’s the pathophysiology of frozen shoulder?
Biological Aspect of Pathophysiology for Frozen Shoulder
https://www.hindawi.com/journals/bmri/2018/7274517/
Would be potentially useful to get yourself genetic sequence and/or biopsy and RNASEQ because you could identify which genes are up or down regulated to cause the condition, and theoretically you could treat this with something like RNA interference.
For example if your frozen shoulder is caused by reduced production of the Matrix Metalloproteins which break down collagen, then you could either reduce collagen production or insert additional copies of the MMP genes.
Or, if the frozen shoulder mechanism is directly immunologic, it could be autoimmune, in which case you could try to induce tolerance with some supressive immunotherapy as has been effective for some folks with Asthma.
Another possibility would be the frozen shoulder is an overt manifestation of another underlying condition, such as rheumatoid arthritis, lupus, or cancer (paraneoplastic frozen shoulder)
If the pain is truly unbearable, you could look at more distal nerve blocks, or sensory-only nerve blocks, perhaps you could try a clinical trial for NaV1.7 knockdown (to turn off a critical pain gene in a local area, such as the dorsal root ganglion for the correct dermatome)
Not a doc but did pass USMLE before switch to engineering. Hope it helps. Feel better dude!
https://www.hindawi.com/journals/bmri/2018/7274517/
Would be potentially useful to get yourself genetic sequence and/or biopsy and RNASEQ because you could identify which genes are up or down regulated to cause the condition, and theoretically you could treat this with something like RNA interference.
For example if your frozen shoulder is caused by reduced production of the Matrix Metalloproteins which break down collagen, then you could either reduce collagen production or insert additional copies of the MMP genes.
Or, if the frozen shoulder mechanism is directly immunologic, it could be autoimmune, in which case you could try to induce tolerance with some supressive immunotherapy as has been effective for some folks with Asthma.
Another possibility would be the frozen shoulder is an overt manifestation of another underlying condition, such as rheumatoid arthritis, lupus, or cancer (paraneoplastic frozen shoulder)
If the pain is truly unbearable, you could look at more distal nerve blocks, or sensory-only nerve blocks, perhaps you could try a clinical trial for NaV1.7 knockdown (to turn off a critical pain gene in a local area, such as the dorsal root ganglion for the correct dermatome)
Not a doc but did pass USMLE before switch to engineering. Hope it helps. Feel better dude!
Pain sucks. End of story.
[deleted]
Not because I don't appreciate sympathy. Not because I'm ashamed.
It's because I don't want your advice on how to make the pain go away or to deal with it. I'm tired of advice. I've got too much advice. I try things, I research issues. I talk to doctors. What your Aunt did that had a similar case to me 30 years ago to get better isn't interesting, it's an anecdote. I'm tired of hearing of woo remedies. If you have research, fine, I'll read it. One day. Maybe months from now. I am not your guinea pig. I am not going to change my treatment regimen based off your advice tomorrow.
Sorry, had to get that off my chest. It's tiring. More so than the pain sometimes.