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Three years later still having problems...

Discussion in 'Support Subforum' started by BigBlueWolf, Feb 9, 2020.

  1. BigBlueWolf

    BigBlueWolf Peer Supporter

    I've written here before. This is kind of an update. Kind of a request for help.

    I first developed TMS symptoms in my hands about three years ago. It was all the common RSI symptoms that tend to be associated with carpal tunnel syndrome minus actual wrist pain. I thought I had developed this from too much constant game controller and keyboard/mouse use. Two years ago I discovered Dr. Sarno's work. Within a a few weeks my pain completely disappeared and I felt relieved and over-joyed I had overcome such a debilitating issue.

    But it didn't last. About six weeks later the pain began to resurface again via the same activities. Slowly at first in my fingers, and getting more pervasive over time. During this time I was frightened again, but being of resolute opinion that it must be TMS I continued to do my normal activities through the pain, ignoring it and telling it to go away.

    This had some degree of success. It's never hurt so bad that I had to stop what I was doing. But the symptoms continued and slowly mutated over time. Instead of just aching and weird nerve-pain flashes, the palms of my hands became sensitized to touch, especially along the parts of my hands that maintained the most contact with objects like the game controller, mouse, or even a barbell (when exercising). I kept persisting though, telling myself TMS was behind it all.

    I kept telling myself this after the similar symptoms starting showing up in my feet and starting to work their way up my calves. Of course it must be TMS because I don't type with my toes and I've never injured my feet in any way.

    About a year ago I was trying to make bread and the experience left the palms of my hands in agony. Never had that happen before. Since then the experience can most closely be described as a type of neuropathy called allodynia -- my palms are almost always in some state of discomfort, but light pressure on them continues to build up this discomfort to the point where the nerves with suddenly flash electrical shocks only on the places where they are touching something.

    This has been a very slow progression, and of course during the time I've had my doubts and concerns about a TMS diagnosis. But here's the thing...

    I've been to my GP and had nerve conduction study of my arms and hands. Also an MRI of my cervical spine. The former showed nothing wrong, and the latter was basically unchanged from six years ago long before this problem arose. My GP didn't think an MRI of my hands would be useful, so he has offered me gabapentin or lyrica to see if they would help. So far I've turned him down.

    While at times I have my doubts, I still believe that TMS is the root of all this. Why?
    • Because sometimes when I'm doing light activity with my hands and I get into a "flow" of laser-focus, the pain disappears. Until I emerge and it slowly starts up again until it's back where it was a few minutes later.
    • Because hate my job, but can't leave it without losing my retirement and health insurance. Retirement can't happen for another three years at the earliest -- and then it would be pretty meager compared to staying another ten years beyond that. Health insurance is vital because I have to take medication I couldn't pay for without it.
    • Because I hate the tiny, cramped apartment I live in with my partner. But we can't move to a larger place without vastly inflating our housing costs. (Living in the Bay Area.)
    • Because my partner is also prone to depression and recently lost his job -- so I'm supporting both of us. And he feels put upon if I'm sharing my problems with him and constantly accuses me of only dwelling on the negative.
    • Because I have very few friends and even less contact with them since leaving Facebook. (Not going back regardless)
    • Because I journal from time-to-time but it often feels pointless.
    I feel lonely, miserable and repeating an endless cycle of dull, lifeless existence every day that only seems poised to get worse if I try to change my career or housing situation.

    Naturally I try to do things that help me avoid thinking about it all. And isn't that what TMS is for? To make a diverting pain to prevent us from thinking about the things we can't face?

    But I can't keep doing this for another 3 to 10 years. :(:mad::arghh:
    Last edited: Feb 9, 2020
  2. TG957

    TG957 Beloved Grand Eagle

    BigBlueWolf, what you have is likely to fall under the official diagnosis of CRPS (Complex Regional Pain Syndrome). It can be diagnosed with so-called Budapest Protocol.

    https://www.ncbi.nlm.nih.gov/books/NBK464482/ (Research diagnostic criteria (the ‘Budapest Criteria’) for complex regional pain syndrome - A randomised placebo-controlled Phase III multicentre trial: low-dose intravenous immunoglobulin treatment for long-standing complex regional pain syndrome (LIPS trial) - NCBI Bookshelf)

    The bad news is that it a progressive and potentially dangerous condition with poor prognosis (per official medicine). The good news is that several people on this forum, me included, recovered from it successfully using TMS approach and so can you, too.

    I also had RSI and carpal tunnel syndrome diagnosis after positive bad nerve conduction study, which was all result of my doctors' ignorance. Your symptoms are slightly different from mine, but overall picture is very similar. Below is my success story, also look for posts from @miffybunny who also had CRPS even worse than mine and recovered fully.

    https://www.tmswiki.org/forum/threads/cts-carpal-tunnel-syndrome-crps-dystonia-raynauds-full-recovery.22242/ (CTS(Carpal tunnel syndrome), CRPS, dystonia, Raynaud's - full recovery)

    I am glad you refused the meds. Your work/life situation is such that it predisposes you for chronic pain. Do not let CRPS ruin your life. You identified the cause of your problem correctly and that is a great start to the solution. The key is your emotional and mental health. After I have lived through it myself, I have no doubts in my mind that the only way out of this condition is through TMS approach.
    BigBlueWolf and miffybunny like this.
  3. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hi @BigBlueWolf - did you ever do our Structured Educational Program, or Alan Gordon's Pain Recovery program? They are both free, and either one will offer you a much deeper and more committed road to recovery than just "discovering" Dr. Sarno's work. While it's true that many people experience a fairly rapid "book cure", I think that for more people it is not enough, and that many of the book cure people eventually experience setbacks that result in the need to come back and do the emotional work.

    And let's not overlook the fact that life is much more complicated and stressful in just the last few years. I think that we are in greater need of serious coping techniques than we ever were, in order to fight back against the naturally fearful mechanisms in our brains.
    BigBlueWolf, Velvet_Hidden and TG957 like this.
  4. BigBlueWolf

    BigBlueWolf Peer Supporter

    Thanks so much for your reply!

    I looked through the information about CPRS, and while I only meet one of the criteria it's clear to me that what I'm going through is heavily related or perhaps a milder form of the condition. Good information to have in my back pocket, glad to know things are not quite so dire at this point.

    Also, I purchased your book. Reading it is partly why I haven't responded sooner. It truly is the next thing I needed to read in coming to terms with my own TMS picture because we share a lot of similar circumstances. I have a parallel in your aunt -- a good friend whose progressive degeneration has been heartbreaking to watch, and yet my own TMS issues have been curiously similar to his. I've often feared I might be heading down the same path as him, even after learning what TMS was.

    A week before writing my original post I also turned to mindful meditation as something I felt I needed to combat my anxiety. It's good to read that it helped you so much. My symptoms have started varying in intensity since starting, with new lows of almost no problems and more intense highs where it feels like the abnormal nerve sensations are trying to push into new areas. I count that as progress. I'll take a good extinction burst as a sign I'm on the right path.

    Pretty much the most valuable thing I've picked up so far was the recognition that you had forgotten how to be happy. I lost this some years ago, but reading you state it struck deep. I've talked about it with my husband. One of the rare occasions when my true happy self was sighted it blew my husband away. I need to find my way back to that. But for the reasons mentioned in my original post, it's complicated. I've tried journaling. I usually can't keep up with it for more than a few days then I forget about it. On top of all the wonderful suggestions you detail in the book, I think I need a good therapist to just talk things out. I did work with one of the therapists from the Pain Recovery Center through this site over a year ago. She was very helpful, but I stopped when I hit a plateau. And my life hasn't been getting easier in the interim.

    I guess a part of me is also scared of having to potentially tackle this for years on end. We all want our cures to come fast and with steady improvement. I gotta keep reminding myself that if I don't put in the work it's unlikely things will improve just on their own.

    It's always amazing to me that this forum is filled with success stories who recovered from TMS far worse than mine. Your story is yet another good example that I can take hope from that I will eventually write my success story too. I'm not a special case with an impossible set of circumstances. I just need to do the work of rescuing my happy self from wherever it is buried, hard as it may be.
    Last edited: Feb 15, 2020
    JanAtheCPA likes this.
  5. BigBlueWolf

    BigBlueWolf Peer Supporter

    I will have a look at it again. And yes, I agree about the book cure. Mine was almost classic in a holy-crap-I-can't-believe-it's-working sense. I think it was that initial joy that carried my book cure for six weeks until the real emotional issues started creeping back again.

    Thanks for answering, Jan. You are one of the most steadfast posters on the forums and I always enjoy reading your advice to others.
    JanAtheCPA likes this.
  6. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    I'm also a fan of @TG957 's book, which is an awesome account of struggle and recovery dancea
    TG957 likes this.
  7. TG957

    TG957 Beloved Grand Eagle

    @BigBlueWolf , I wish you the best of luck in your recovery. You have a gift of introspection and determination to heal, which is already a big step forward. Emotional work is very hard, but the rewards go beyond getting rid of pain, it really sets one on a different path of living life and re-discovering happiness. Remember that plateaus are a precursor to the next improvement, not a dead end!

    Do not hesitate to ask questions if you need help. And thank you, thank you for your kind words, this is what makes my two years of work on the book worthwhile.

    LaughingKat likes this.
  8. TG957

    TG957 Beloved Grand Eagle

    Thank you, Jan!!!!!
    JanAtheCPA likes this.
  9. Workinghard

    Workinghard New Member

    My name is Kevin (username Workinghard), and I am a newcomer to the site and to TMS. I've been reading your history and we have some similarities in our story. I was wondering if you have an email address to which I could email you some questions, please?
    Thanks, Kevin
  10. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    I'm sorry, Kevin - that's something I just can't do. I'm a licensed CPA, not a licensed therapist. I'm qualified to privately advise U.S. taxpayers about their income taxes, but I'm not at all comfortable advising TMSers without the support and input of other peers here on the public forum!

    I checked out your "Desperate plea for help" post and I will respond there, okay?

    plum likes this.
  11. Workinghard

    Workinghard New Member

    Yes, I’m sorry. Jan. I hope I ddI not slick as if I was asking for therapy; just advice from someone who is beat this. Thank you.

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