Discussion in 'Fibromyalgia Main Forum' started by Annette2, Dec 30, 2002.

  1. Annette2

    Annette2 New Member

    Last week I requested information from the American Autoimmune Related Diseases Association. They are a non-profit association that fosters and facilitates collaboration in the areas of education, public awareness, research, and patient services. I received their information today. They explain exactly what autoimmune disease is, what the different types are, what causes autoimmunitty and also discusses the "family connection". Well, Fibromyalgia and Chronic Fatigue Syndrome were listed, but they had two asterisks next to each of them. Why? They are the only two illnesses that "have not yet been officially classified as autoimmune but are strongly suspected to be related". So, I guess according to them, the jury is still out. I guess it's good that at least they ARE listed - I just wonder what it will take for them to be classified. It really frustrates me! My rheumy also told me that they're not sure if FMS is autoimmune.

    I don't know if I can post their web-site. They don't sell anything, but I don't want to do anything wrong. I'll post their web-site if the moderators tell me it's okay. I just thought you all would find this very interesting.

  2. Annette2

    Annette2 New Member

  3. Mikie

    Mikie Moderator

    You have given their name and people should be able to find them OK using a search engine. We are not allowed to post URL's here.

    I went to their website and found it interesting. Jelly's book on "Living Well With Autoimmune Disease" is a very interesting read too. The more I learn about our illnesses, the more I realize how little all of us really know about them, including the "experts."

    Love, Mikie
  4. Annette2

    Annette2 New Member

    Don't you find it odd that out of over 100 illnesses, FMS and CFS are the only ones that they're not sure are actual autoimmune diseases? And when I asked my rheumy about FMS being an autoimmune disease, she also said they're not sure yet. What does it take? I've never been tested for any autoimmune problem - no blood tests, etc. At this point I don't know if it would help or not. I'm not crazy about taking antibiotics - I just found out they pump chickens and cattle with the stuff and am tapering off of those foods. I get sick taking antibiotics. Who knows what anymore?

  5. coyote

    coyote New Member

    I asked my rheumy if FM is an autoimmune disease and he said no. This surprised me very much because there are a lot of people in my family with auto immune diseases: lupus and polymyalgia. My aunt who has polym has about the same symptoms I do. My rheumy is a straight science guy. It annoys me because I don't think he takes my personal experiences into account at all.
  6. LisaMay

    LisaMay New Member

    When I first got dx'd, my docs told me to search and read all the info I could get my hands on. When I asked if FM is autoimmune, they all said no. I told them about books I have read that just about classify it as such. They're response is a puzzled look. I personally was tested for the "classified" ones, but showed nothing.

    I will check out the group you list for myself. The more info I can get, the better. Have you read "Living Well With Autoimmune Disease"? Great book....

  7. danisue22

    danisue22 New Member

    Hi Annette, Sorry to hear about your heel,Hope it is better soon. It seem to take anything I do to myself or even a bug bite forever to heal. Wanted you to know I am a twin also ,but I have a twin brother.He's sicker than I am ,anyway I think so.Just wanted to share that with you and wish you a speedy healing God Bless and Happy New Year. Danisue
  8. iglvr

    iglvr New Member

    I personally was tested for the "classified" ones, but showed nothing.

    One reason you may not be testing positive to any of these is because the disease has to be active at the time you are tested. My experience was be the time I got a dr.'s appointment and then got in to be tested, the symptons had stopped and I tested negative. I finally managed to get tested while I was in great pain with rheumatoid arthritis and finally tested positive.

    Also, I've found that dr.'s insist that something is not true (fms being an autoimmune disease) until there is proof that is it. I wish instead that they would simply say they do not know.
  9. rbtheidmanhabs

    rbtheidmanhabs New Member

    Hi Annette2!
    I do agree with you that fibro and auto immune are related.I was diagnosed with no immune system 2 years ago in which I take infusions for every month for the rest of my life.Just last may I was diagnosed as having fibro.I really beleive that there are alot of things related to this disease.

  10. Milo83

    Milo83 New Member

    But I believe they are auto immune..I also have other auto immune diseases, & once you have one it is more common to have another..I have autoimmune hepatitis, Raynold's Syndrome for sure & they are definetly autoimmune diseases..
    Drs. are just "unsure" & they don't know what to tell us..
    Take Care........Donna
  11. Annette2

    Annette2 New Member

    When I asked my dr. if FMS is autoimmune she said no but she also said there's things about this illness that they don't know about yet. So I think she's open-minded but doesn't have enough info yet. I was never tested for autoimmune illness. I don't have any other autoimmune problems so as for me it's just the FMS. I think I also have CFS but it's not my main problem. All I know is there are days and days when I feel like crap! Yesterday I felt terrible. I couldn't tell you it was this or that - I just felt lousy. If I don't get enough sleep, or eat right, then it comes on me. Having this illness is like walking on eggshells. Feh!