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Day 4 The Most Disheartening thing the Doctors Told me - "There is no Cure"

Discussion in 'Structured Educational Program' started by Sudonym, May 25, 2016.

  1. Sudonym

    Sudonym New Member

    When I was diagnosed with fibromyalgia in 2005, I was sent to a 5-hour induction into the Pain Clinic at Oregon Health Sciences University, one of the few places in the country then that had a clinic specializing in FMS. During the day I was told that there was no cure, that my symptoms would gradually worse until I had to go on disability, that I would need to be put on a 'cocktail' of prescriptions meds - pain meds, antidepressants, sleeping pills, etc. I was shown people in wheelchairs, on 24-hour morphone patches. The day was so traumatizing that I left that evening saying 'I reject your reality and substitute my own."

    It's funny how at some level having a diagnosis like that can almost give you a feeling of relief, like it's OK to just give up and take the pills and embrace your role as a chronic invalid. There are many in my local support group who have done just that. They get very angry if you try to suggest that the pain might have an emotional component. I can see why - it puts the responsibility back on our shoulders to find a way through this struggle as well as putting the blame back on us for allowing this to happen.

    I desperately need to believe that the problem in emotional. I can't fix this problem with pills, God knows I've tried - heheh. But to say that the problem is emotional makes me feel like I might possibly be able to do something about it then. Like I still have a little control.

    Not that I've ever been able to control my emotions much. The harder I repress them the stronger they get, or so it seems. I do hope this program can help me find a way to process them that is not so destructive.
  2. Gigi

    Gigi Well known member

    Hi Sudo.
    It took courage to reject the future that was suggested to you at the conference. Go, you!!
    Have you found the Structured Education Program on this wiki? Working through that led to my recovery, and hat of many others. Go at your own pace. It's amazing.
    Blessings on your journey.
    Balsa11 likes this.
  3. yb44

    yb44 Beloved Grand Eagle

    UGH, this pushes my inner rage-o-meter towards the red zone!!! That is unethical and unconscionable. People susceptible to this sort of trash give up and play the victim at best. At worst they attempt suicide.

    Thank heaven you had enough courage to reject it all, Sudonym. You WILL overcome this. Read the many success stories, like the one Ellen wrote, to reinforce your conviction to heal. You definitely won't have to suffer the fate described in the above quote.
    Balsa11 likes this.
  4. sam908

    sam908 Peer Supporter

    Unfortunately, this kind of thing happens all too often in the medical community. After suffering a retinal vein occlusion in one eye (in retrospect, likely triggered by TMS), I was told by one retinal specialist "as in one, so in the other," meaning that the same thing would eventually happen in the other eye. Another specialist reported that there would be an "impending occlusion" in the other eye. All this took place around ten years ago and all's well. Thank G*d I chose to disbelieve these prognoses.
    Balsa11 likes this.
  5. Sudonym

    Sudonym New Member

    Thanks for the encouragement. It's been ten years since those prophecies of doom were spoken over me and I'm still working, and still a very 'high functioning' FMS sufferer. I use yoga and relaxation practices and one pain med to control my condition. But recently I have developed high blood pressure and some of my other symptoms are returning, so that is why I am on this site, and trying the SEP. So far, so good.... I am waiting for the other shoe to drop. It has to be chance that I am feeling so much more relaxed and cheerful the last few days and have some energy, that there have been a few odd things consistent with the almost magical effects people in this forum describe. It must be chance... Or the placebo effect. Right?

    Suspending my disbelief and continuing the program.....
    Balsa11 likes this.
  6. Ines

    Ines Well known member

    What a great attitude you have. I'm really impressed that you were naturally able to believe in yourself even after all of the doom you were faced with.
    I saw my husband do that. He has a very physical job and his knee was really hurting him for 8 months. He could barely walk because it would lock and swell up like a grapefruit. He had a workman's comp claim and it was just hell. He saw 2 specialists and had a MRI. They said it was a miniscus tear and he would need surgery. Something told him they were full of BS and he said no. He just went about his life and even took up cycling. That was over a year ago and he couldn't be happier. His depression even went away. It's like he naturally did this Mindbody plan w/o even knowing what it was. Reminds me of your story.
    Now that I'm learning about TMS it's funny to look back and see how some people instinctively know that their destiny is to not be in pain.
    Balsa11 likes this.
  7. Lady Phoenix

    Lady Phoenix Peer Supporter

    The most disheartening thing a doctor told me was that I had a low pressure headache and there was nothing they could do for me.
    Balsa11 likes this.
  8. she333

    she333 Peer Supporter

    I went to an interstitial cystitis support meeting 13 months ago. It was awful. People were talking about fentanyl patches. One woman was even sharing a story about how out of it she was driving her kids around on her pain meds. I freaked and envisioned this was my future. The next day I had horrendous urinary frequency.

    But even at that meeting, and as I continued my downward spiral, I could see clearly distinctions among participants. I do think interstitial cystitis is real in that some have ulcers or a history of pelvic radiation. But others were just oozing anxiety, talking about vaginismus, and other things that make no sense with an organ disorder. Anyone with any clinical sense could see multiple etilogies at play, and TMS clearly accounts for some. I know support groups are meant to help. But some are a breeding ground for misery and further loss of functionality as you mentioned.
    Balsa11 likes this.
  9. Sudonym

    Sudonym New Member

    You are so right. I tend to tread very carefully with the support group I am part of. There is nothing to be gained by us all wallowing in misery together. There has to be some sense of hope and purpose.
    Balsa11 likes this.
  10. Balsa11

    Balsa11 Well known member

    I had symptoms like this for a few weeks or months before realizing it was TMS. Drink the right about of water and relax the tension down there:)

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