Ask HN: How should one work with severe chronic pain?
12 comments
I am 34 and I have almost exact same story as you. Constant pain in spine, hips, buttocks. I also have GERD and heart palpitations.
It was all really sad for the last several years, but I started to make a huge progress recently. Here's what helped me a lot:
- Cure my depression (as others already suggested). It's extremely hard to do when you have every moment of your life filled with physical pain, but you should concentrate and separate your mental state from your body. One thing that helped me tremendously were psychedelic mushrooms. Under skilled supervision, this thing do wonders.
- Realize that there is a thing called fascia in our bodies alongside muscles and bones. That is often the primary physical reason for chronic pain. Here is a good video with explanations: https://www.youtube.com/watch?v=v54l3wDTJHg&t=638s. There are lots of strategies to treat your fascial syndrome, simplest and cheapest of which is foam rolling (helped me a lot). Acupuncture and massages are also great. Consistency is a key.
- Write everything down. This was the most important thing for me to solve the puzzle. You think you know your pain and your symptoms, but in reality they constantly change. And you perform different activities, feel different emotions. You need a place where you log all your pain symptoms, record any activities and track your progress towards healing. I use Obsidian for this. We software engineers tend to be too good at organizing software and too bad at organizing our own health records.
Hope any of it helps
It was all really sad for the last several years, but I started to make a huge progress recently. Here's what helped me a lot:
- Cure my depression (as others already suggested). It's extremely hard to do when you have every moment of your life filled with physical pain, but you should concentrate and separate your mental state from your body. One thing that helped me tremendously were psychedelic mushrooms. Under skilled supervision, this thing do wonders.
- Realize that there is a thing called fascia in our bodies alongside muscles and bones. That is often the primary physical reason for chronic pain. Here is a good video with explanations: https://www.youtube.com/watch?v=v54l3wDTJHg&t=638s. There are lots of strategies to treat your fascial syndrome, simplest and cheapest of which is foam rolling (helped me a lot). Acupuncture and massages are also great. Consistency is a key.
- Write everything down. This was the most important thing for me to solve the puzzle. You think you know your pain and your symptoms, but in reality they constantly change. And you perform different activities, feel different emotions. You need a place where you log all your pain symptoms, record any activities and track your progress towards healing. I use Obsidian for this. We software engineers tend to be too good at organizing software and too bad at organizing our own health records.
Hope any of it helps
I've had a similar thing happen to me when I was in my early twenties - chronic pain, incapable of concentrating, grimacing during work, etc. Got fired, got unemployment (this was during 2008 crisis, so unemployment was two years, not 6 months), experimented hard during those two years (basically my full-time job was to find a combination of medication and lifestyle changes that reduced my pain and kept my mind clear). Luckily for me, I succeeded.
First thing to handle in this case: if you look around the studies, you will know that chronic pain is a precursor to proper, clinical depression. So, if you are not getting psychiatric/psychological treatment for depression, that's the very first thing to attack. A common response to this is "but I am in chronic pain, not somehow sick in my head!", and if that's an objection that seems to resonate with you, you should get over that objection, fast. Chronic pain causes depression. Your writings sure as shit sound like you are depressed (well, you know, it's not proper to diagnose people across a text forum, but I'll take an exception in this one case).
The combination of drugs and lifestyle changes that saved my life were Welbutrin for the chronic-pain-caused depression, and Lyrica for the actual pain, and private pilates workouts for the areas that were actually in pain in order to re-train the nerves and muscles around the area to send proper pain signals, and swimming to maintain general body health. I did nothing other than that for an entire year; sounds like you have a similar opportunity. Onboard yourself onto my cocktail across a period of four months, 1 item per month. Start with either lyrica or welbutrin.
Lyrica in low doses makes one drowsy, and in higher doses has a perking-up effect. If lyrica seems to fix your pain but makes you drowsy, the proper response is to go up in dose, not down.
Both lyrica and welbutrin are available as generics at this point, so you really just need to see a doctor that would be willing to give you these prescriptions.
First thing to handle in this case: if you look around the studies, you will know that chronic pain is a precursor to proper, clinical depression. So, if you are not getting psychiatric/psychological treatment for depression, that's the very first thing to attack. A common response to this is "but I am in chronic pain, not somehow sick in my head!", and if that's an objection that seems to resonate with you, you should get over that objection, fast. Chronic pain causes depression. Your writings sure as shit sound like you are depressed (well, you know, it's not proper to diagnose people across a text forum, but I'll take an exception in this one case).
The combination of drugs and lifestyle changes that saved my life were Welbutrin for the chronic-pain-caused depression, and Lyrica for the actual pain, and private pilates workouts for the areas that were actually in pain in order to re-train the nerves and muscles around the area to send proper pain signals, and swimming to maintain general body health. I did nothing other than that for an entire year; sounds like you have a similar opportunity. Onboard yourself onto my cocktail across a period of four months, 1 item per month. Start with either lyrica or welbutrin.
Lyrica in low doses makes one drowsy, and in higher doses has a perking-up effect. If lyrica seems to fix your pain but makes you drowsy, the proper response is to go up in dose, not down.
Both lyrica and welbutrin are available as generics at this point, so you really just need to see a doctor that would be willing to give you these prescriptions.
Just as a cautionary note, I recently had a friend who took Welbutrin to help her with anxiety as she was trying to stop smoking. It ended up causing a mental break, to the point where she was hospitalized and suffered brain damage. Her sister-in-law had been on Welbutrin for years and years with no problems.
This. Chronic Pain is usually a disorder in how the brain processes sensations of pain.
I don't know where you live, but if it's possible to get to a Mayo Clinic, go. Trying to get local health care when you have an unusual condition is nearly impossible, especially if you can't even get diagnosed. Mayo has hundreds of doctors in 3 buildings (Rochester, MN). I saw 15 doctors in 5 days, which would have been utterly impossible locally, in the Louisville, KY area. Here, it might take 4-6 weeks to be referred to and get an appointment with a specialist. At Mayo, they had me in a CT scan machine 45 minutes after my intake appointment with an internist, and the scan was not prescheduled!
First of all, thank you for sharing your experience. I hope you’re feeling ok right now. As a chronic pain patient myself, here are some of my thoughts.
Opioids have a bad reputation, rightfully so in some cases, but it can be part of a solution to treat chronic pain. I’ve been taking a a mild opioid (tramadol) to reduce my pain for several years now and it has been literally a life saver. There are downsides, but the reduction in pain out-weights them, at least in my case. I understand the resistance against opioids and they are not very popular right now, but if it really helps to deal with your pain, it may be worth considering it.
Consider counseling with a psychologist or psychiatrist. Depression comes with the pain territory, sadly enough. Most people don’t understand the severity of chronic pain. As you said it yourself: you can move, you look ok from the outside, but in reality, you’re far from ok. It’s mentally draining and can cause severe depression. Be aware of that and be prepared.
Try to find the causes of your pain. From your writing, I can’t make up if you know the sources of your musculoskeletal pain. It took me years, several specialists and hospitals to find all the pain triggers. A specialised pain center of a hospital can really help you we with that. Then again, I live in Europe and benefit from universal healthcare. The costs of treatment can be a big issue in the US, sadly enough.
Knowing what causes your pain is really important, just like knowing how to deal with it. Plan your day accordingly. If you know you can be active for three hours without much more pain, divide you day in blocks of three hours, followed by rest. This can be difficult, especially with work, social contacts and in relationships. But it’s really important to know your limits.
Talk to others about your pain and let them know how it affects your life. Others don’t feel your pain, you may even try to hide it. This can result in a lot of miscommunication and wrong assumptions. If you’re in pain, let the (significant) other know so they can understand your behaviour. You’re acting in a certain way right now because of your pain, not because you’re not interested (in them), not because you’re ignoring them, not because you’re lazy, etc.
Don’t give up. Stay curious.
Opioids have a bad reputation, rightfully so in some cases, but it can be part of a solution to treat chronic pain. I’ve been taking a a mild opioid (tramadol) to reduce my pain for several years now and it has been literally a life saver. There are downsides, but the reduction in pain out-weights them, at least in my case. I understand the resistance against opioids and they are not very popular right now, but if it really helps to deal with your pain, it may be worth considering it.
Consider counseling with a psychologist or psychiatrist. Depression comes with the pain territory, sadly enough. Most people don’t understand the severity of chronic pain. As you said it yourself: you can move, you look ok from the outside, but in reality, you’re far from ok. It’s mentally draining and can cause severe depression. Be aware of that and be prepared.
Try to find the causes of your pain. From your writing, I can’t make up if you know the sources of your musculoskeletal pain. It took me years, several specialists and hospitals to find all the pain triggers. A specialised pain center of a hospital can really help you we with that. Then again, I live in Europe and benefit from universal healthcare. The costs of treatment can be a big issue in the US, sadly enough.
Knowing what causes your pain is really important, just like knowing how to deal with it. Plan your day accordingly. If you know you can be active for three hours without much more pain, divide you day in blocks of three hours, followed by rest. This can be difficult, especially with work, social contacts and in relationships. But it’s really important to know your limits.
Talk to others about your pain and let them know how it affects your life. Others don’t feel your pain, you may even try to hide it. This can result in a lot of miscommunication and wrong assumptions. If you’re in pain, let the (significant) other know so they can understand your behaviour. You’re acting in a certain way right now because of your pain, not because you’re not interested (in them), not because you’re ignoring them, not because you’re lazy, etc.
Don’t give up. Stay curious.
this might seem silly but it helped me. worth trying if you are feeling desperate: https://imgur.com/a/hlJalHv
Alternative link for posterity: https://www.goodreads.com/book/show/144873.Healing_Back_Pain
Seems like an interesting book.
Seems like an interesting book.
Highly recommend this book. I read this book skeptically years ago when I noticed it mentioned a lot on hacker news. It fixed a lot of my issues, and started my journey of appreciating how little we know about the mind/body connection.
https://www.nytimes.com/2021/11/09/well/mind/john-sarno-chro... “Healing Back Pain: The Mind-Body Connection.” By John Sarno . This definitely helped me through my back pain
I had a severe pain in my neck (cervical spondylosis) for 2 years radiating to my arms and head. At a point, I started getting black outs and random head tingling, driving me crazy. I consulted an Ayurvedic doctor & applied a medicated oil with daily sun exposure for an hour. The pain became manageable after 6 months. I have a livable/bearable pain for the last 10 years - but it no longer bothers me much. The oil saved my mind. I can share more details if anyone is interested (email in profile).
Be aware I'm not a medical profession but have these suggestions for you; switch to the Mediterranean diet and give up sugar. I have done so myself and guess the fish and olive oil in the diet should progressively improve your situation.
https://www.eatingwell.com/article/7908695/mediterranean-die...
This physical pain makes concentration extremely difficult. It has become so challenging that I quit my software engineering job of 10 years a couple of months ago due to my inability to focus on the work required.
Severe chronic pain is probably similar to severe ADHD in terms of how it affects productivity, except that attention loss is caused by your body constantly sending pain signals. There are no drugs that I have found to help, at least not ones that don't cause significant harm to the body in other ways, such as opioids.
Unlike ADHD, severe chronic pain is not legally considered for disability, despite its impact on effectively performing jobs that require deep concentration or physical labor. I can still move, my range of motion is good, and my mental faculties are normal, except for the aforementioned ability to concentrate. It's just that I'm in constant physical pain. The U.S. government doesn't consider any of this as qualifying for disability.
I'm currently unemployed with state insurance, but the insurance is more for catastrophic accident coverage (car accidents, etc.) than for helping me with my chronic pain. When I had private insurance, I was never able to get proper treatment despite trying for years, and all it amounted to was enormous medical debt. I could probably find an engineering job, but I fear I would have the same problem of not being able to concentrate with the pain I'm in, despite how much I love programming. It's hard to be around people when you're in constant physical pain. I feel like I have a miasma around me, and I don't want to spread that to others, so I feel I'm better off alone. Previously, I would just hide my emotions at work and pretend everything was great, but the pain has reached a point now where I can't continue to do that (the pain causes me to physically grimace during web meetings sometimes). I'm spending my time now improving my engineering skills (React, Vue, etc.) and doing contract work; it's just an uphill battle with the pain.
I'm honestly unsure about what path to take in life. It's a terribly tragic thing when the physical human body gives up despite the mind and soul wanting to thrive, especially when young. My body has been broken for so long that I can't remember what it's like not to be in physical pain. I see other programmers and think how nice it must be to just code and not worry about pain, and reminisce when I was the same. I've long given up on my body healing on its own. The saying "All things heal with time" unfortunately isn't true for severe chronic pain.
All said, while my body has given up, and despite these depressing writings, my mind has not given up. My only goal in life has always been to live as long as possible to witness and experience life and future advancements in civilization, and that's still the case. I just wish I could have done it pain-free like most people my age, instead of having to live the rest of my decades in constant pain.