How do you find a doctor who actually understands fibromyalgia?

Discussion in 'Fibromyalgia Main Forum' started by Logand, Nov 30, 2005.

  1. Logand

    Logand New Member

    Sorry this is long.

    I've been seeing my current doctor for a few years. He has done all the lab work, sent me to a rheumatologist, and changed my meds around over and over. I never had a really comfortable feeling that he really understood what I was going through with the fibro.

    Now that I think about it, there were lots of red flags. Like the time my eyesight became blurry while I was driving and I called his office to get an emergency appointment. I was really scared. They said they could see me only if it wasn't related to fibromyalgia. Huh? I guess I was so wrapped up in my illness and depression that I just let it slide.

    At my last appointment, I asked him to fill out a form for my long-term disability company. You know, one of those that ask how much weight I can lift, how far I can walk, etc.

    He referred me to have a functional assessment done. When that office called to schedule the appointment, they told me it was a 4-hour test to test my strength and stamina. I asked if it could be broken into shorter appointments, but she said no.

    I called my doctor and asked if there was any other way to test my physical abilities, and he said no. I explained to him that it would put me out of commission for weeks. I have to be very careful what I do how often or I end of suffering for days or weeks after. He wouldn't listen.

    I called the insurance company, and they said I didn't need a functional assessment, they just want the doctor's opinion of what I can and can't do. The insurance rep. even talked to my doctor and told him the same thing. My doctor still won't fill out the form unless I do this functional assessment.

    So, emotional basket case that I am, I told his nurse that I would be finding a doctor who actually knows about fibromyalgia and thanks for nothing. I know, I know. Not a very adult thing to do. But darn it. I'm so fed up.

    It isn't that I didn't want to do the assessment. In fact, I thought it was a good idea to get a baseline of my physical function. But then I found out how long and strenuous it was going to be. I can't knowingly make myself bedbound just for a test, especially having kids to take care of.

    Now I have to find another doctor, and I don't know where or how. I don't want to start with a doctor and then find out later that he or she doesn't understand fibromyalgia.

    Of course this comes at a time when I'm in the middle of my yearly re-evaluation by the insurance company to see if they will continue payments. At least I know my therapist and psychiatrist will be sending in their forms.

    P.S. Sorry it's been so long since I've been on here. I've been trying to not focus so much on fibromyalgia and just live my life the best I can. I guess there's no way to get away from it, huh?

  2. nanna4550

    nanna4550 New Member

    Really, I don't think there are many doctors that understand FM. I think the best we can expect is that they help us with our struggle and we communicate well with them. Some doctors just think we are looking for pain meds. It would be nice not to be labeled, just to be treated for things. How are we supposed to know if it's fm related or not when there is something going on that hasn't happened before. I guess we ask the guys and gals on this board.
  3. Pianowoman

    Pianowoman New Member

    You might try the Doctor Referral at the top of this page. There may be someone near you that you could contact. Or, you could post a question here with the title 'Doctor needed in....' wherever you are. You might get some responses that way.

    Good Luck

  4. lovethesun

    lovethesun New Member

    I would also look for a younger doctor that isn't so set in their ways.I find that they are open to new things.Linda
  5. suzetal

    suzetal New Member

    When I call I would ask the receptionist a few ? about FM and CFS to see if she has any knowledge of this and then ask her if the doctor treats FM & CFs.She will be able to answer all your? if they are familiar with these DD.

  6. springrose22

    springrose22 New Member

    Don't agree to doing that test. It will make you so sick, I can tell, you're exactly like me. And Functional Assessments do NOT reflect the fact that people with CFS become debilitated with flu like symptoms FOLLOWING any kind of physical, mental, or emotional exertion, often even after a day or so. This is documented medical information. The next Dr. you see should know this or be willing and interested in learning. Marie
  7. Kaeirdwyn

    Kaeirdwyn New Member

    DO you know the name of the Rheumatologist your Dr sent you to for test and who would have had to give the initial diagnosis? FMS Doctors or Drs who specialize in FM usually are or have close contacts with Rheumatologists. The only way to be diagnosed is through visiting a Rheumatologist, that would be the doctor you need to get the functionality report from.
    Also I agree that you should go to Dr referrals on this site.
    A Doctor who understood FMS would absolutely not have you take a test that would seriously compromise or undermine your precarious health.
    You also are not alone. I had a doctor after all rigorous testing and finding nothing on any tests to say what was wrong with me, gave me a referral to the doctor that diagnosed me, but made me feel worthless in the bargain by saying that I needed psychiatric help and that he could no longer help me.
    Definitely switch to a doctor that actually believes in FMS. It sounds as if your doctor was just humoring you and doesn't even really believe it is a real illness. There are many doctors who don't. Don't blame yourself that your doctor does not want to treat your chronic condition.
    Keep up your spirits. Try not to stress about it. There are so many doctors out there that will want to see you healthy and pain free or as pain free as possible, pay your old Dr no mind.
    Good luck!!
  8. silky17

    silky17 New Member

    I was thinking,..... what if you agreed to do it, and then they actually saw how difficult it was for you to complete? I'm not sure, but I would think if they had any compassion, the diagnosis would be that "the test was very hard for "logand" (don't know your name)to complete. Her functionality is at a low etc etc.

    I myself believe that once you start questioning the test that they put before you, then they question the validity of it (the illness).

    I am not saying that you are one to be questioned , but I think doctors get on their high horse and want to be in control. You know what I mean?

    I have a family member who can't help herself but to dig and dig over things she has been told by the doctor. I see it that he will tend to question his own eduacation on it and then thinks that she or he (docs)do not want to get started with a patient that will put them through the ringer. The light bulb goes on and its telling them , uh oh.......she's going to be difficult.

    I hope I haven't stepped on any toes here but maybe just a thought. Good luck,
    [This Message was Edited on 12/01/2005]
    [This Message was Edited on 12/01/2005]
  9. JudieV

    JudieV New Member

    I found my doc by asking on this message board. I had been rejected by 3 docs and was desparate. So I posted my town and state (Delray Beach, Florida) and the next day I had a reply. It was for a Rheumatologist. She found me a internist. It's now 4 years later & I think they are a gift. I hated the thought of flying back to NY to see my first specialist. I'll be indebted to the woman who posted the docs name for the rest of my life.

    Good luck



  10. smiffy79

    smiffy79 New Member

    was by accident, i had spent years different drs all testing for different things. i rang to make an app with what was my usual dr and he was away so saw current dr.

    it turned out he was fasinated by fm and goes to seminars and stuff to learn more and asked if i would be guinea pig.

    one happy smiffy. good luck, they are rare but out there.
  11. EllenComstock

    EllenComstock New Member

    I live in Michigan, and after years of searching, finally found a wonderful FMS doctor an hour from me. I got his name from a couple of people in my FMS support group. Are there any support groups in your area? The people there might have a good doctor to recommend.

    Another person here recommended posting a separate message asking for a doctor in your area. That's a good idea. I can certainly understand the frustration of finding a good doctor. It's hard enough being sick without having to struggle to get good medical care.

    Good luck.

  12. Logand

    Logand New Member

    I forgot how wonderful and supportive you all are.

    I gave a lot of thought to taking that test, but I just can't.

    I'm in Maine, and there aren't any doctors on the referral list here. But we do have a teaching hospital in town that I may try. They are mostly residents who are fresh out of school.

    Silky17, you didn't step on any toes. I understand where you're coming from. I'm just beyond the point of trying to please doctors. I don't have the strength to argue with a doctor who is supposed to be supporting me. I even offered to take a shorter test or any other kind of test that wouldn't be as strenuous, but he refused.

    I have to take care of myself, and if a doctor can't understand that then they won't be my doctor anymore. I don't want to be considered a difficult patient, but I want a doctor that knows what they are talking about and understands fibro.

  13. Charleen

    Charleen New Member

    Logand, believe it or not there are doctors out there who get it. I know I found one, and he is a regular MD. It's funny I went yesterday and we were talking (yes he actually sits and talks to me)about what to do with my headaches(plus the fibro/cfs/and all the others that I have been diagnosed).

    I looked at him and I said I bet your sorry you inherited me (I saw the other doc that moved away so he got me). He laughed and said no I keep his life interesting. He said he keeps up on new articles thanks to me and yes he has other with fibro too. The ones that I had before "Doc Troy" said it was all in my head. I cryed when he told me it wasn't in my head it was in my body.

    I will tell you something that my doc told me if a doc tells you something that you don't like or you think is going to be depremental to your health walk out and don't pay. I was brought up to think doc's were like "God" they knew everything well some don't. Keep trying hopefully you will find one that will understand
  14. Empower

    Empower New Member

    You keep asking people that you meet, "who do you know?" and you read on the internet, and do tons of research, and post on here.

    Hospital websites are a good place to do research on doctors.

    Make sure you look at your state's medical board to make sure the doctors don't have any infractions against them (you can find this on the internet)

    Someone said there really isn't too many doctors that understand FMS

    Best bet is a Rheumatologist

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