Discussion in 'Fibromyalgia Main Forum' started by mrstyedawg, Jun 26, 2006.

  1. mrstyedawg

    mrstyedawg Member

    I read in you bio that you have been ill for 17 years. I have been ill with CFS for 22 years. I have gotten progressively worse over the years. I have let it be known that if I die I want my body to be studied to find the cause of this disease. I was just 19 when I became sick. How has your disease progressed? Are you taking anything for it? How did yours begin? If you don't care would you please answer these questions for me?

  2. sues1

    sues1 New Member

    Never recovered from the aches of it, and the pain would jump around to a new place all the time, etc. Finally was told it was Fibro.

    Few months later the flu that I never got rid of. Was told CFIDS.

    Meanwhile went to many many doctors and specialists. Had many tests ran. Even went to a psychiatrist (on my own, not sent by a Dr.) and said, "Here I am, lets cure me"...
    She never found a cause or such, said I was well balanced and so forth. Even tried many meds.

    I got to the point that I could not work at all and had to stop.

    I had many adverse reactions to meds.I went to support group meetings and they would ask me just how I was surviving without meds. I said that I had no choice.

    New Rheumy in past yr. gives me trigger point injections that helps. He put me on 60 mg. Cymbalta, that helps. For sleep I take now Doxepin HCL small doesage but can take up to 100 mg. a night. I regulate that. I think it is not helping enough. Does not make me go to sleep but I do sleep better with it and that helps.

    Just started on Fibro Complete Multi with Malic acid and magnesium...only for three days now, but I think it is going to make a difference, I feel a tad better already, but too soon to tell.

    I have bought books, tke vit. and it.
    Nothing is enough. I am worn down so much more. I am worse.
    Was doing water excersies but went through a really bad flare and could nt of even walked from locker room to pool. Hope to get back soon.

    I am able to do less all the time. I try to be normal. But I am so tired and so sick and hurt so much..........

    I am still striving on learning and trying new things though. Blessings........Susan
  3. sues1

    sues1 New Member

    I am 67 yoa now....

    I had asked my DH about contributing my body to science. That was a few yrs. ago. He said he had to think about it and never has said more.

    I know it is my choice, but unless DH and my children were okay with it I would not. Because it might bother them too much. I am going to be creamated. I have always been down to be a body part donor. But that is almost out of question with my illness and age.

    Someone said they still go for skin, for skin grafts, regardless of ag. I do not know.