5 ms·

I've been living with this problem since 1994. Some of the symptoms match up with cubital tunnel syndrome in that my hands feel split along the middle finger ri

I've been living with this problem since 1994. Some of the symptoms match up with cubital tunnel syndrome in that my hands feel split along the middle finger ring finger line. At the same time, the palms hands feel like they are burning, and my shoulders are caused me low-level discomfort. If I overdo it, the pain migrates up into my neck. sometimes my forearms and fingers swell. When the finger swelling happens, I lose mobility in my fingers. I've also lost fine motor control and can no longer do things like write. One of the drugs they put me on gave me tremors that have not gone away so now I can no longer write or use a soldering iron. Sometimes tremors are bad enough typing is literally hit or miss. I miss juggling and cartooning. For the first 10 years I chased doctor after doctor hand surgeon orthopedic surgeon etc. looking for a cure. Nobody gave me consistent diagnosis and even some of the recommended surgical interventions for some of my symptoms were not recommended because I didn't present in a way that indicated the surgery would be successful. I've tried numerous things acupuncture, physical therapy, trigger point massage, and drugs like gabapentin and tricyclic antidepressants. The only thing that gave me any relief whatsoever was lidocaine injections in trigger points around my shoulders. The release lasted only 48 hours but it was so wonderful. I've given up that there's any medical intervention that will help and I just have to live with it the rest of my life.

stronglikedan 3y ago
I went to a few MDs as well, for what presented like de quervain's tenosynovitis. It was only in my right hand, thankfully, so I could still mouse with my left. I also could use nothing but a split keyboard, which made it tough to use a laptop. And I could no longer use my phone with my right hand either. But after a while, I started getting symptoms in my left as well. Obviously, no where near as bad as your case, but there nonetheless, for years. MD after MD told me there was nothing wrong with my hand, so nothing they could do. Finally, after no longer being able to trust my right hand at all, because it would just randomly let go of whatever I was holding, no matter what size object, I finally went to a DO who takes a wholistic approach. After a few sessions of soft tissue therapy, involving massage, scraping and cupping, combined with stretching and strength training exercises, I'm pretty much back to normal. He worked from my neck down, to get the nerves to "floss" correctly through my system, down to my hand. I've now moved past the treatment part, but as long as I maintain the daily stretches and strength training, both hands are pretty much back to normal. I do have minimal pain in the right hand if I have a particularly grueling work week, but I'm back to using normal keyboards and even laptop keyboards. And I can mouse and use my phone with my right hand again. I can even trust my right hand to not drop things anymore. Of course, YMMV, but traditional doctors couldn't get the job done for me. I'm so grateful it didn't discourage me after a years long journey, and I'm grateful for the wholistic approach that worked.
- gymbeaux 3y ago
  My experience has been that orthopedic surgeons are BAD at diagnosis. This is at least partially because they are always in such a hurry (in the US anyway). You were smart to persist and I'm glad you found a solution. Your solution is essentially one that has not only helped me tremendously, but I think would help so many others too. So many who blindly trust what the docs tell them. I don't blame people for trusting in medical professionals, but I do blame them for believing what these docs tell them when it goes against what they believe (e.g. doc says hands are fine but they hurt constantly). At that point you MUST take responsibility for your diagnosis and treatment, and it sucks, and it's not ideal, but if I hadn't done it, I'd be unemployed and on disability by now.
jrgoff 3y ago
Not saying this is related to your issues at all, but in case it ends up being helpful for someone - my uncle was a postman and lived with RSI for decades, early on they even gave him carpal tunnel surgery for it which just made things worse. After that, I think he gave up on doctors to a large extent but as he got older and was having more health difficulties, his daughter "made" him go see the doctor about them. Turns out he has multiple sclerosis and they now think the rsi may have been an early symptom of it. Editing to add: I have dealt with RSI as a software developer myself. It started during a months long flare up of new digestive problems (which I didn't connect it to until later). I had to quit programming for years after being unsuccessful at finding long term relief, fortunately if I wasn't doing things that exacerbated it too much I would mostly feel fine and every once in awhile I would test things out to see if I had recovered. Close to ten years later, I found that I could begin working on the computer again and after some accidental experiments I realized that what was keeping the rsi under control was taking probiotics that I had begun taking for other reasons (and had kept taking because of the notably positive effect they had on my mood). When I stopped taking the probiotics for a few days the nerve and joint pain would start up again and recede when I re-started them. Eventually I had an antibiotic (which was not the first time in that time period I had taken antibiotics) and afterward don't seem to need the probiotic anymore <shrug>.
- gymbeaux 3y ago
  Carpal Tunnel Release is the most-common hand surgery in the United States, and it's estimated to have a success rate of around 90%. I have always thought the remaining 10% or so were misdiagnoses. I was misdiagnosed with CTS myself. It was a misdiagnosis because the condition hasn't worsened despite my continued keyboard and mouse use, and the symptoms do not worsen when I bend my wrists (really the doc should have seen that and not diganosed me with CTS, it's a pretty reliable indicator).
gymbeaux 3y ago
I don't want do downplay what you have been through and all the effort you have put in to trying to get an accurate diagnosis, and I know how discouraging navigating the US medical system is, but there have been a lot of advancements/changes in the area of orthopedic disorders since the 90s. If lidocaine in your shoulders is the only thing that has given you relief, you most likely have some form of Thoracic Outlet Syndrome. Lidocaine injections in shoulder muscles force those muscles to relax, releasing the brachial plexus (nerves) and thus relieving the symptoms of nerve impingement. Physical therapy is the primary treatment for TOS (e.g. building and stretching the muscles in the shoulder girdle), but surgery is an option as well. Ultimately they can just cut the ligament/muscle that is impinging on the nerve and viola, your symptoms are gone. In some cases, the nerves are impinged by something like an extra first rib that some people are born with. This too can be surgically removed. I encourage you to research TOS and come to your own conclusions since you know yourself better than I do, but that's what it sounds like to me.
- rickydroll 3y ago
  Thoracic outlet was one of the proposed diagnoses but back in the 90s they had no idea how to treat it except very low success rate surgery. I went to physical therapy route and it didn't do anything for me. The PT person found a couple places on my spine and my right shoulder blade were frozen. I put up with a lot of pain when they tried to get it to loosen up.
  - gymbeaux 3y ago
    I'm sorry that PT was not fruitful. Frozen Shoulder is rough. From what I hear, the surgery route is a lot more successful, but it seems like the main roadblock is convincing a surgeon to perform the surgery. They want you to exhaust all other options (e.g. PT) and run a myriad of tests and scans to be as sure as possible that TOS is what you have. I have also heard often that finding a good PT (PT meaning physical therapist OR personal trainer, I technically have a personal trainer) makes all the difference. All the best.
curioussavage 3y ago
Have you tried float therapy? I did it twice a week for a while and it helped me a ton. Also talk Therapy and a lot of cardio seem to be key for me too. after years of inconsistent answers and shrugging from docs I was frustrated. After reading about chronic pain and psychosomatic disorders I think it’s ridiculous how many providers don’t know much about that or are afraid to even mention it. Even after little talks discussing psychological causes of chronic pain with providers I experienced pain relief for days.
- rickydroll 3y ago
  Haven't tried float therapy but most things like chiropractic, acupuncture and various forms of massage really didn't do anything except cost me thousands of dollars. Practicing Buddhism has help me let go of attachments to how my body had worked in the past which has helped as I've aged as other things fail. Talking about the chronic pain in therapy or not, reminds me of how I got injured and how I was treated by my former employer. The more I talk about these feelings and these events, it triggers significant rage some 30 years later. The only way I found to deal with it is by practicing nonattachment. The easiest way to explain is that it's not that I don't feel the anger but it's an attenuated emotion. It passes by without sticking (much) and with some breathing, fades into nothingness till the next time.

stronglikedan 3y ago

I went to a few MDs as well, for what presented like de quervain's tenosynovitis. It was only in my right hand, thankfully, so I could still mouse with my left. I also could use nothing but a split keyboard, which made it tough to use a laptop. And I could no longer use my phone with my right hand either. But after a while, I started getting symptoms in my left as well. Obviously, no where near as bad as your case, but there nonetheless, for years. MD after MD told me there was nothing wrong with my hand, so nothing they could do. Finally, after no longer being able to trust my right hand at all, because it would just randomly let go of whatever I was holding, no matter what size object, I finally went to a DO who takes a wholistic approach. After a few sessions of soft tissue therapy, involving massage, scraping and cupping, combined with stretching and strength training exercises, I'm pretty much back to normal. He worked from my neck down, to get the nerves to "floss" correctly through my system, down to my hand. I've now moved past the treatment part, but as long as I maintain the daily stretches and strength training, both hands are pretty much back to normal. I do have minimal pain in the right hand if I have a particularly grueling work week, but I'm back to using normal keyboards and even laptop keyboards. And I can mouse and use my phone with my right hand again. I can even trust my right hand to not drop things anymore. Of course, YMMV, but traditional doctors couldn't get the job done for me. I'm so grateful it didn't discourage me after a years long journey, and I'm grateful for the wholistic approach that worked.

gymbeaux 3y ago
My experience has been that orthopedic surgeons are BAD at diagnosis. This is at least partially because they are always in such a hurry (in the US anyway). You were smart to persist and I'm glad you found a solution. Your solution is essentially one that has not only helped me tremendously, but I think would help so many others too. So many who blindly trust what the docs tell them. I don't blame people for trusting in medical professionals, but I do blame them for believing what these docs tell them when it goes against what they believe (e.g. doc says hands are fine but they hurt constantly). At that point you MUST take responsibility for your diagnosis and treatment, and it sucks, and it's not ideal, but if I hadn't done it, I'd be unemployed and on disability by now.

jrgoff 3y ago

Not saying this is related to your issues at all, but in case it ends up being helpful for someone - my uncle was a postman and lived with RSI for decades, early on they even gave him carpal tunnel surgery for it which just made things worse. After that, I think he gave up on doctors to a large extent but as he got older and was having more health difficulties, his daughter "made" him go see the doctor about them. Turns out he has multiple sclerosis and they now think the rsi may have been an early symptom of it. Editing to add: I have dealt with RSI as a software developer myself. It started during a months long flare up of new digestive problems (which I didn't connect it to until later). I had to quit programming for years after being unsuccessful at finding long term relief, fortunately if I wasn't doing things that exacerbated it too much I would mostly feel fine and every once in awhile I would test things out to see if I had recovered. Close to ten years later, I found that I could begin working on the computer again and after some accidental experiments I realized that what was keeping the rsi under control was taking probiotics that I had begun taking for other reasons (and had kept taking because of the notably positive effect they had on my mood). When I stopped taking the probiotics for a few days the nerve and joint pain would start up again and recede when I re-started them. Eventually I had an antibiotic (which was not the first time in that time period I had taken antibiotics) and afterward don't seem to need the probiotic anymore <shrug>.

gymbeaux 3y ago
Carpal Tunnel Release is the most-common hand surgery in the United States, and it's estimated to have a success rate of around 90%. I have always thought the remaining 10% or so were misdiagnoses. I was misdiagnosed with CTS myself. It was a misdiagnosis because the condition hasn't worsened despite my continued keyboard and mouse use, and the symptoms do not worsen when I bend my wrists (really the doc should have seen that and not diganosed me with CTS, it's a pretty reliable indicator).

gymbeaux 3y ago

I don't want do downplay what you have been through and all the effort you have put in to trying to get an accurate diagnosis, and I know how discouraging navigating the US medical system is, but there have been a lot of advancements/changes in the area of orthopedic disorders since the 90s. If lidocaine in your shoulders is the only thing that has given you relief, you most likely have some form of Thoracic Outlet Syndrome. Lidocaine injections in shoulder muscles force those muscles to relax, releasing the brachial plexus (nerves) and thus relieving the symptoms of nerve impingement. Physical therapy is the primary treatment for TOS (e.g. building and stretching the muscles in the shoulder girdle), but surgery is an option as well. Ultimately they can just cut the ligament/muscle that is impinging on the nerve and viola, your symptoms are gone. In some cases, the nerves are impinged by something like an extra first rib that some people are born with. This too can be surgically removed. I encourage you to research TOS and come to your own conclusions since you know yourself better than I do, but that's what it sounds like to me.

rickydroll 3y ago
Thoracic outlet was one of the proposed diagnoses but back in the 90s they had no idea how to treat it except very low success rate surgery. I went to physical therapy route and it didn't do anything for me. The PT person found a couple places on my spine and my right shoulder blade were frozen. I put up with a lot of pain when they tried to get it to loosen up.
- gymbeaux 3y ago
  I'm sorry that PT was not fruitful. Frozen Shoulder is rough. From what I hear, the surgery route is a lot more successful, but it seems like the main roadblock is convincing a surgeon to perform the surgery. They want you to exhaust all other options (e.g. PT) and run a myriad of tests and scans to be as sure as possible that TOS is what you have. I have also heard often that finding a good PT (PT meaning physical therapist OR personal trainer, I technically have a personal trainer) makes all the difference. All the best.

curioussavage 3y ago

Have you tried float therapy? I did it twice a week for a while and it helped me a ton. Also talk Therapy and a lot of cardio seem to be key for me too. after years of inconsistent answers and shrugging from docs I was frustrated. After reading about chronic pain and psychosomatic disorders I think it’s ridiculous how many providers don’t know much about that or are afraid to even mention it. Even after little talks discussing psychological causes of chronic pain with providers I experienced pain relief for days.

rickydroll 3y ago
Haven't tried float therapy but most things like chiropractic, acupuncture and various forms of massage really didn't do anything except cost me thousands of dollars. Practicing Buddhism has help me let go of attachments to how my body had worked in the past which has helped as I've aged as other things fail. Talking about the chronic pain in therapy or not, reminds me of how I got injured and how I was treated by my former employer. The more I talk about these feelings and these events, it triggers significant rage some 30 years later. The only way I found to deal with it is by practicing nonattachment. The easiest way to explain is that it's not that I don't feel the anger but it's an attenuated emotion. It passes by without sticking (much) and with some breathing, fades into nothingness till the next time.