No doctors around that take CFS seriously

Discussion in 'Fibromyalgia Main Forum' started by Criket, Jun 26, 2003.

  1. Criket

    Criket New Member

    I have read that several of you have CFS specialists or just family doctors that treat your CFS. I live in a small town with several small towns around me, and my doctors don't really know much about it. Or when I do mention it or tell them my symptoms, they act like I am crazy. I have learned a lot from several of you here on this board & I thank you for that. You are lucky to have a family doctor or CFS specialist that takes you seriously. I learned from some of you about NADH & I have started taking it & it is doing wonders. I feel like I have a life now instead just barely making it in a daze all the time. I appreciate you sharing. My allergist did a EBV test on me several years ago and told me I had CFS, but I didn't know much about it. I asked him to do the test for me because my own doctor wouldn't. But he doesn't treat me for that. He treats my allergies. He is also an immunologist but I don't think he gets into the immunology much.

    Criket
  2. pooped

    pooped New Member

    Small towns, you gotta love'em!!! As you become more and more educated yourself, share what you have learned with your doctor. Actually take print outs of information with you and if your doctor is not willing to learn, find a new doctor. Although my doctor was at first a little bit offended when I would try to teach him (after all he is a DOCTOR and I am just a patient) he has become much more willing to learn and work with me on this DD. Good luck to you.

    POOPED
  3. elaine_p

    elaine_p New Member

    Criket,

    When I first got sick I lived in a city where there were several doctors who believed in CFS. Then I moved to rural ND. The first doc I went to didn't believe in it. I lucked out in that someone I went to school with here (25 years ago) had a daughter with Fibro. They went to scads of doctors and finally got help from one. So I'm going to him now.

    What I would recommend doing, if you can, is "interview" the docs first. Either on the phone or at your first appointment. Ask them if they believe in it. Or if they're at least willing to be open-minded. I sort of have a problem with this concept, because doctors are, well, doctors! (We've been conditioned well.) But in truth we *are* hiring them to work for us.

    Because of the skepticism, I actually tell them that I'm not "married" to the diagnosis, but SOMEthing is wrong--and it's not depression, it's not lack of a spiritual life, I have been prayed over (lots of my family back in OR are Christians), it's not that I have to find a different job--and, yes, the first doc here suggested all those things.

    When I first moved here, I found that a respected clinic in the state (with lots of satellite clinics in outlying areas) actually has/had a policy that they did not recommend CFS as an illness....

    Anyway, look at the doc referral stuff at this site. And contact your local CFIDS Association support group. (Actually, that's where I got the name of the first doc here, but I've since told them to scratch her off the list. I think part of the problem is that it's not very active group. In OR I got the name of a good doc and a good lawyer from the chapter there.)

    Hope this helps, at least some!
  4. Mikie

    Mikie Moderator

    It is not always possible to find a specialist in CFIDS. It is possible, though, for us to become very well informed in our own illnesses, print out material and take it to our docs, and request treatment. You need to have a doc who is willing to learn along with you.

    My PCP knew absolutely nothing about our illnesses when I first saw him. He and I have formed a partnership and I do all the research, we disscuss the treatments, and he prescribes the drugs necessary to try the treatments. He will only try things which he is familiar enough with to know that it will not be harmful to me.

    Now that I have found a good specialist in CFIDS, he has said that what my PCP and I have been doing is perfect and just what he would have done for me himself.

    We truly cannot depend on docs for our treatment. Even when we have good docs, it is vital for us to take responsibility for our own healing. It also helps us emotionally and mentally to feel as though we are more in control. A really good doc will respect you for this.

    Love, Mikie