curious how did you find out/react to finding out fms/cfs etc

Discussion in 'Fibromyalgia Main Forum' started by bobbycat, Apr 24, 2009.

  1. bobbycat

    bobbycat New Member

    Mine started in the late 70's to early 80's. I went to alot of different drs and no one could figure it out so I gave up until the 90's when it got so bad I could not tolerate it. I even paid for my own accuputure. Finally my dr at the time said "Oh my god you have FMS" I had no knowledge of it so I asked what it was her reply was go look it up on the internet (glad I had the internet) I asked again she said the same thing and told me to take iprohen (sp) I did as she sugested and I looked it up. I was shocked and as shocked that she told me to go take iprohen (sp) Then I was mad! I never went back I called around and asked if the dr treated fibromyagia and if they knew what it was. That is how I found the dr I have been going to for 10 years. Tell me your story
  2. Shananegans

    Shananegans New Member

    I was never satisfied with my diagnosis. I was dx'd with FM in 2000 when I was 20 years old after the did elimination tests for lupus, MS and lyme. My doctor looked at me and said "Well you don't have any of these and you have all 18 tender points for Fibromyalgia so you must have that." When I did some research of FM and found out they still pretty much know nothing about it and the symptoms are so varied, I kept looking for something else, going to other doctors, doing research on my own... I was so annoyed. No one wanted to look any further, they just wanted to treat the symptoms.

    After 10 years of disappointment and pretty much losing my life, I found out I don't even have FM, I have Celiac disease. With the simple act of cutting gluten out of my diet I am no longer in pain, no longer have digestive issues and am working on getting back to a normal life.

    So needless to say, I'm pretty upset. If doctor's actually listened to all the symptoms maybe I could have been diagnosed correctly sooner, but they don't. I'm glad I was never willing to give up otherwise I would still be suffering needlessly.

    shananegans
  3. bobbycat

    bobbycat New Member

    I think stress is a big factor too. I had my own business and was a workaholic. I think that is why we all progress at a different rate.
  4. feefee920

    feefee920 New Member

    I was diagnosed by my family doctor in 1993. No one had even heard of Fibromyalgia then...especially me! My doctor told me it was caused by stress. He gave me a pamphlet on it and after reading it, I was like....OH MY GOSH...this is ME! There wasn't much they could do for it then so I went many years untreated until about 3-4 years ago when I got severe debilitating head pain....not a head "ache"...head PAIN. Demerol didn't touch it. Nubain through an IV (in ER) helped until it wore off...the ONLY thing that made the head pain go away was Skelaxin...a muscle relaxer. My muscles were in so much spasm that they pulled on the muscles of my skull causing the head pain. Since that time, my life has been a steady downhill decline. I filed for SSDI in Sept. 06 and just had my hearing in June 09. I am waiting now for the decision. I have lost my house...2 cars...everything. Funny thing is...all those years I just dealt with the pain and fatigue...until my body said "ENOUGH IS ENOUGH" and put me out of commission.