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Day 1 my story

Discussion in 'Structured Educational Program' started by niles, Sep 21, 2020.

  1. niles

    niles New Member

    I am a 23 y/o female. I have been struggling with pain for a little over a year now. It started as pain in my left scapula and down my left arm (no specific injury), this pain spread to my entire upper back. I tried chiropractic, physical therapy, massage, meds, naturopathic doctors, etc. but nothing helped. I got an MRI which showed a small spinal cord syrinx, this led me down the neurosurgeon path, but they concluded that the syrinx is too small to operate on and they are conflicted as to whether it is even related to my pain. About 8 months ago I suddenly developed pain in my sacrum/tailbone (also no specific injury), making it extremely painful to sit down. I have to lay down in the back of the car in order to get anywhere. I was always either standing or laying during the day. They did a CT scan, but besides a bit of SI joint dysfunction they said everything looked normal. Then about 5 months ago the worst pain yet, foot pain - sesamoiditis. Now I can hardly walk. This pain is the main roadblock for me in terms of accepting the TMS diagnosis, because it is not some weird nuanced pain, but rather a consistent ever present properly diagnosed pain. It has been absolutely devastating - all I can think of are all the things I will never be able to do again because of this pain. I have tried PT, orthotics, cold laser, taping, everything for this pain, but it seems to just be getting worse if anything. The other major roadblock to me accepting the TMS diagnosis is my hyper-mobility, almost every doctor I've seen has suggested that this may be the cause of my pain - a connective tissue disorder. I am seeing a geneticist in about 6 weeks (its taken over 6 months to get an appointment), and I'm very nervous. It makes it hard to fully believe that what I have is TMS, or at least that my upper back pain and sacrum/tailbone pain are TMS (I honestly don't believe my sesamoiditis is). I read Dr. Sarno's book, "Healing Back Pain", I journal every day, and I'm in DBT therapy. I'm just feeling so incredibly hopeless. Everyday is a struggle. I have major depressive disorder, anxiety, and dermatillomania on top of it all. I struggle with hypersensitivity and had anorexia in the past. I don't know what to do, I am giving this program a go, but I am so hopeless I just constantly want to give up. I am living for my mum and my brother, I hope that one day I can want to stay alive for myself.
  2. Kayla11

    Kayla11 Newcomer

    Hello I know this is an old post but how big is your syrinx?
  3. Booble

    Booble Well known member

    I wonder how this original poster is doing.
    It seems likely that she'd benefit from TMS understanding especially as she says, "all I can think of are all the things I will never be able to do again because of this pain."
    I'd be curious what has happened for her since.
  4. niles

    niles New Member

    My Syrinx is from my mid cervical spine all the way down to the bottom of my thoracic spine.
  5. niles

    niles New Member

    Hi, so unfortunately its been confirmed by the neurologist that my pain is from my syrinx that is progressing. I had really been hoping it was TMS.

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