chronic pain conditions are something our healthcare and disability systems specifically don’t handle well and I haven’t met anyone suffering from them that doesn’t want to [redacted].
my experience with it has been nebulous and hard to diagnose but incredibly disabling. certain treatments like acupuncture or cupping that specifically target fascia, or shit like somatic therapy, aren’t really legitimized by insurance so absent of a diagnosis with a known intervention your choices are to go to a pain clinic and take something possibly addictive or pay your way into alt medicine providers who can either be exactly who you need or hokey grifters.
and I can only imagine the hell that insurance companies put you through for surgical interventions they are supposed to cover but definitely don’t want to. reading my partner’s rejection letters from her company disability provider has been fucking fascinating
Many chronic pain patients suffer from something called central sensitization.
I do, though didn’t really know about it in detail before finding a clinic that treats those patients.
I did 3 weeks at Mayo hospital’s pain rehabilitation clinic to run their program for patients that are all specifically central sensitization. You go in a bit blind not knowing what the program is, intentionally on their part.
It is run by several world class cognitive behavioral therapy doctors, and a team of nurses and physical therapists that work with you daily. It is… aggressive. You have no option to not do physical therapy or cardio, of which there is 2 hours and over 20 exercises to do every day. No matter how you hurt or feel. People who were there were all objectively seriously injured at one point and had like me real issues and real disabilities. The most empathetic thing that could do for you is to not acknowledge your symptoms and just make you do it.
They also took all and I mean ALL medications. Couldn’t have miralax. No advil. No gas medicine from the gas station. Nothing taken for symptoms. You could take things prescribed for conditions like aside reflux disease or insulin for diabetes, but nothing for how you felt.
So imagine having to do 2 hours of intense exercise, giving up all medications in about 3 days time, and doing things cold turkey for 3 weeks without any room to tap out. On top of that it is 35 hours a week of lectures on various topics related to the condition of centralized sensitization, chronic pain stress management, biofeedback, depression, anxiety, and skills to better enable you to live life.
They even held 1 hour sessions a week with family to summarize key lectures and give Q&A for them to help the patients be better supported in this weird chronic pain thing most families don’t understand.
It’s intense and not for everyone, but I went from being unable to do any physical activity, even walking the dog while I was taking pain medications and muscle relaxants etc. I went from that to biking 10 miles a day, at a 3:45 minute mile pace. I started their reconditioning program at 1 lb dumbbells doing curls for ten reps. I am now, 8 months after the program, curling 30 lb dumbbells and doing my own 2 hour workouts every week day.
I am still in incredible amounts of pain. They could not and will not fix the underlying causes physically or biologically.
However, they change patient lives with the CBT focus on how to live a more function filled life with chronic pain. They make us more active and better able to live a life worth living, within the constraints of moderate, sustainable, and adaptable.
Anyway, it changed me life and I would recommend it to anyone if they are in the long term battle with chronic pain. I saw specialists and got dozens of medications and scans for things. Surgical procedures, injections, blocks… you name it.
I am so happy to hear you found something that worked for you and it sounds like it was a hell of a fight but that kind of intense care can be so impactful if it’s the right fit for you. It sounds not unlike a good psychiatric crisis center but more focused on treating physical symptoms that are often deeply interlinked with mental health in a way few providers treat effectively.
ultimately no two cases are the same and I feel like I’ve needed the opposite treatment in some respects. I hit a wall with PT and strength conditioning and while it’s definitely still an important part of my recovery, it seems that isolated muscle strength is not the problem, and it’s actually possible I’ve been overtraining to try to feel better. best working theory is I’m hypermobile and instinctively locking my joints to retain stability. I generally have a lack of sensation and don’t feel much direct pain, until my posture / muscle arrangement is so out of whack that I can’t function anymore.
so the work has been more focused on building bodily awareness and imporoving proprioception, and when I work out it tends to be pretty freeform and meditative and I have to aim for working out less than I want to but making the most of it. I have a provider who does specialized massage therapy combined with somatic work, and acupuncture has been an amazing low-impact way to poke into my fascial tissue and get it to chill the fuck out a bit. PTSD work and psilocybin have also been really helpful. I needed a muscle relaxer in the early days but am glad my doc stopped prescribing it after a few months. definitely getting back to feeling more normal though I suspect it won’t ever fully go away. but I’m happy to have been forced into building up this much awareness of how my body works.
chronic pain conditions are something our healthcare and disability systems specifically don’t handle well and I haven’t met anyone suffering from them that doesn’t want to [redacted].
my experience with it has been nebulous and hard to diagnose but incredibly disabling. certain treatments like acupuncture or cupping that specifically target fascia, or shit like somatic therapy, aren’t really legitimized by insurance so absent of a diagnosis with a known intervention your choices are to go to a pain clinic and take something possibly addictive or pay your way into alt medicine providers who can either be exactly who you need or hokey grifters.
and I can only imagine the hell that insurance companies put you through for surgical interventions they are supposed to cover but definitely don’t want to. reading my partner’s rejection letters from her company disability provider has been fucking fascinating
Many chronic pain patients suffer from something called central sensitization.
I do, though didn’t really know about it in detail before finding a clinic that treats those patients.
I did 3 weeks at Mayo hospital’s pain rehabilitation clinic to run their program for patients that are all specifically central sensitization. You go in a bit blind not knowing what the program is, intentionally on their part.
It is run by several world class cognitive behavioral therapy doctors, and a team of nurses and physical therapists that work with you daily. It is… aggressive. You have no option to not do physical therapy or cardio, of which there is 2 hours and over 20 exercises to do every day. No matter how you hurt or feel. People who were there were all objectively seriously injured at one point and had like me real issues and real disabilities. The most empathetic thing that could do for you is to not acknowledge your symptoms and just make you do it.
They also took all and I mean ALL medications. Couldn’t have miralax. No advil. No gas medicine from the gas station. Nothing taken for symptoms. You could take things prescribed for conditions like aside reflux disease or insulin for diabetes, but nothing for how you felt.
So imagine having to do 2 hours of intense exercise, giving up all medications in about 3 days time, and doing things cold turkey for 3 weeks without any room to tap out. On top of that it is 35 hours a week of lectures on various topics related to the condition of centralized sensitization, chronic pain stress management, biofeedback, depression, anxiety, and skills to better enable you to live life.
They even held 1 hour sessions a week with family to summarize key lectures and give Q&A for them to help the patients be better supported in this weird chronic pain thing most families don’t understand.
It’s intense and not for everyone, but I went from being unable to do any physical activity, even walking the dog while I was taking pain medications and muscle relaxants etc. I went from that to biking 10 miles a day, at a 3:45 minute mile pace. I started their reconditioning program at 1 lb dumbbells doing curls for ten reps. I am now, 8 months after the program, curling 30 lb dumbbells and doing my own 2 hour workouts every week day.
I am still in incredible amounts of pain. They could not and will not fix the underlying causes physically or biologically.
However, they change patient lives with the CBT focus on how to live a more function filled life with chronic pain. They make us more active and better able to live a life worth living, within the constraints of moderate, sustainable, and adaptable.
Anyway, it changed me life and I would recommend it to anyone if they are in the long term battle with chronic pain. I saw specialists and got dozens of medications and scans for things. Surgical procedures, injections, blocks… you name it.
Only this worked to give me part of my life back.
Good luck to you
So basically, they torture you until you accept the pain and just take it, rather than seeking out an actual solution?
Wow, that defintively would inspire me to kill a health CEO. Or, in this case, a health theorist.
I am so happy to hear you found something that worked for you and it sounds like it was a hell of a fight but that kind of intense care can be so impactful if it’s the right fit for you. It sounds not unlike a good psychiatric crisis center but more focused on treating physical symptoms that are often deeply interlinked with mental health in a way few providers treat effectively.
ultimately no two cases are the same and I feel like I’ve needed the opposite treatment in some respects. I hit a wall with PT and strength conditioning and while it’s definitely still an important part of my recovery, it seems that isolated muscle strength is not the problem, and it’s actually possible I’ve been overtraining to try to feel better. best working theory is I’m hypermobile and instinctively locking my joints to retain stability. I generally have a lack of sensation and don’t feel much direct pain, until my posture / muscle arrangement is so out of whack that I can’t function anymore.
so the work has been more focused on building bodily awareness and imporoving proprioception, and when I work out it tends to be pretty freeform and meditative and I have to aim for working out less than I want to but making the most of it. I have a provider who does specialized massage therapy combined with somatic work, and acupuncture has been an amazing low-impact way to poke into my fascial tissue and get it to chill the fuck out a bit. PTSD work and psilocybin have also been really helpful. I needed a muscle relaxer in the early days but am glad my doc stopped prescribing it after a few months. definitely getting back to feeling more normal though I suspect it won’t ever fully go away. but I’m happy to have been forced into building up this much awareness of how my body works.