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.
It may seem like that is the case for a bit, and often does to many patients. Myself included.
Keep in mind the target population is patients who are centralized sensitization patients. There are alpha channels of nerves that through real physical injury have created a feedback loop in the nervous system with the brain.
In these patients, who do have very real injuries, the pain levels are outside expectations for the things we can test, scan, see on imaging etc.
The mechanism is complex but essentially you can think of it as the nerve bundles of specific types are far more sensitive to stimuli and the brain becomes far more sensitive to signals received.
Breaking this feedback loop, which is often fed by avoidance of things, is important.
As for data, they have published papers in many journals with more than 20,000 patients who have been through the clinic showing progress improvement. Reductions in standard assessments for depression, improved mobility and exercise function, as well as removed reliance on medications / the polypharmacy causing underlying greater symptoms is proven in their large data set.
A lot of the mental model that has real impacts to physical symptoms revolves around breaking previously unrealized classic and operant conditioning that patients with this chronic pain sensitization often have present.
To correct and see the clear picture without clouding it, medications must be removed from the picture as polypharmacy issues can create a mess of problems that seem like they are bodily in origin but are in fact from the medication interactions.
It is a program vetted by the chronic pain treatment community for over 20 years, and the data is well reviewed, with every hour of the time a patient spends there carefully considered and measured for efficacy.
The program gets referral from many physicians in various other disciplines within and outside their hospital system for patients that meet their criteria.
To be clear, this is not a fly by night theory. It’s one of the best hospitals in the world with a program of pharmacists, doctors, PTs, nurses and supporting specialists who all meet daily per patient and make individual care plans. You seem them daily for hours a day. They monitor blood work and vitals as well as metabolic data as they taper medications. It’s deeply unpleasant but designed very intentionally to help. It does help.
Anecdotally, a patient story:
They came into the program malnourished, on a feeding tube, intense abdominal pain, GI bleeding, and on significant opiates to tackle pain levels from the GI issues.
On discharge, the patient had no expressed pain, was back to eating normally without the feeding tube, and was regaining weight . GI bleeding stopped.
6 months later they went back on pain medication from a pain physician and were right back in the ER with the same symptoms. Following the program’s instructions the same reversal took place again!
The power of the operant conditioning from taking medications when feeling symptoms is a powerful one that impacts the baseline arousal states of the parasympathetic and sympathetic nervous system. These impact all sorts of bodily processes which seem counter intuitive to apply to physical real problems, but the results speak volumes.
Everyone arrives a skeptic. I left seeing benefit in my life as a patient who these things apply to. I am not uneducated, I have created software to run clinical cancer trials for years. Yet even with that formal intellectual background I was missing things that had impact to my health condition. The average patient has less exposure to these things, and I spent 10 years seeking help for the pain before this from many physicians. Many things were tried. So all of that experience and exposure to alternative therapies and modalities to this one was brought in with skeptical critical analysis of their methods.
There is an element of trust required, and it is HARD, but the easy path of medicate or cut it out is often not the solution with patients like us. Since pain is very much a central nervous system process, treating as such makes sense.
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.
It may seem like that is the case for a bit, and often does to many patients. Myself included.
Keep in mind the target population is patients who are centralized sensitization patients. There are alpha channels of nerves that through real physical injury have created a feedback loop in the nervous system with the brain.
In these patients, who do have very real injuries, the pain levels are outside expectations for the things we can test, scan, see on imaging etc.
The mechanism is complex but essentially you can think of it as the nerve bundles of specific types are far more sensitive to stimuli and the brain becomes far more sensitive to signals received.
Breaking this feedback loop, which is often fed by avoidance of things, is important.
As for data, they have published papers in many journals with more than 20,000 patients who have been through the clinic showing progress improvement. Reductions in standard assessments for depression, improved mobility and exercise function, as well as removed reliance on medications / the polypharmacy causing underlying greater symptoms is proven in their large data set.
A lot of the mental model that has real impacts to physical symptoms revolves around breaking previously unrealized classic and operant conditioning that patients with this chronic pain sensitization often have present.
To correct and see the clear picture without clouding it, medications must be removed from the picture as polypharmacy issues can create a mess of problems that seem like they are bodily in origin but are in fact from the medication interactions.
It is a program vetted by the chronic pain treatment community for over 20 years, and the data is well reviewed, with every hour of the time a patient spends there carefully considered and measured for efficacy.
The program gets referral from many physicians in various other disciplines within and outside their hospital system for patients that meet their criteria.
To be clear, this is not a fly by night theory. It’s one of the best hospitals in the world with a program of pharmacists, doctors, PTs, nurses and supporting specialists who all meet daily per patient and make individual care plans. You seem them daily for hours a day. They monitor blood work and vitals as well as metabolic data as they taper medications. It’s deeply unpleasant but designed very intentionally to help. It does help.
Anecdotally, a patient story:
They came into the program malnourished, on a feeding tube, intense abdominal pain, GI bleeding, and on significant opiates to tackle pain levels from the GI issues.
On discharge, the patient had no expressed pain, was back to eating normally without the feeding tube, and was regaining weight . GI bleeding stopped.
6 months later they went back on pain medication from a pain physician and were right back in the ER with the same symptoms. Following the program’s instructions the same reversal took place again!
The power of the operant conditioning from taking medications when feeling symptoms is a powerful one that impacts the baseline arousal states of the parasympathetic and sympathetic nervous system. These impact all sorts of bodily processes which seem counter intuitive to apply to physical real problems, but the results speak volumes.
Everyone arrives a skeptic. I left seeing benefit in my life as a patient who these things apply to. I am not uneducated, I have created software to run clinical cancer trials for years. Yet even with that formal intellectual background I was missing things that had impact to my health condition. The average patient has less exposure to these things, and I spent 10 years seeking help for the pain before this from many physicians. Many things were tried. So all of that experience and exposure to alternative therapies and modalities to this one was brought in with skeptical critical analysis of their methods.
There is an element of trust required, and it is HARD, but the easy path of medicate or cut it out is often not the solution with patients like us. Since pain is very much a central nervous system process, treating as such makes sense.
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.