Who the #@** do I go to now?! Advice, please!

Discussion in 'Fibromyalgia Main Forum' started by Roxi, Nov 10, 2002.

  1. Roxi

    Roxi New Member

    My doctor says "Live with it." I have no health insurance and want my $ to be spent wisely. Should I see a neurologist, rheumatologist, infectious disease specialist, pain control specialist or what?
    Who has done the most for you? My current doctor mentioned above says it's FM. I'm not sure it isn't ME, or CFIDS, or mycoplasma, or HHV6a or all of the above! Your advice greatly appreciated! Yours in pain....Roxi
  2. Roxi

    Roxi New Member

    My doctor says "Live with it." I have no health insurance and want my $ to be spent wisely. Should I see a neurologist, rheumatologist, infectious disease specialist, pain control specialist or what?
    Who has done the most for you? My current doctor mentioned above says it's FM. I'm not sure it isn't ME, or CFIDS, or mycoplasma, or HHV6a or all of the above! Your advice greatly appreciated! Yours in pain....Roxi
  3. AnnetteP

    AnnetteP New Member

    I found my dr. by calling great smokies lab...while this was NOT a cheap route, I figured I would save in the long run. By this I mean I could either spend a lot in a short period, or I could spend the rest of my life on meds that never got me better. With that in mind, I think its safe to say I won't get much inheritance when my parents die. BUT, for the first time in years, I am well enough to find a job soon. (You can find great smokies website by doing a web search). (Edited by Moderator).

    Hope this helps,
    Annette
    [This Message was Edited on 11/10/2002]
  4. Mikie

    Mikie Moderator

    Whom you see depends on what it is you need. Is pain your worst problem? If so, see a good pain specialist.

    Otherwise, do all your own research, find treatments which have helped others, download the info on the treatment and approach your doc to help you with that treatment. None of my docs, save my pain specialist, has helped me in the least on his own. I have found all my own treatments and my doc is happy that I take such a strong role in my own healing. He will go along with anything that is not harmful. If your doc is not cut of this cloth, find one who is.

    Sweetie, it's a hard reality to face, but our healing is up to us and unless we take full responsibility, we just stay sick and frustrated. Our library here is full of excellent articles. Our members post continually on what is helping them. Good luck.

    Love, Mikie
  5. Phoenix

    Phoenix New Member

    I was DXed with FMS way back in the mid 80s when it was known as fibrositis...needless to say, I have been treated by all the specialists.

    My best luck, so far, has been with a physiatrist.
    [This Message was Edited on 11/11/2002]
  6. teach6

    teach6 New Member

    While being informed is important with these illnesses, having a doc who is willing to help and work with you is of utmost importance. My PCP wouldn't even acknowledge what was wrong with me when I went in and told him what it was. So I knew working with him was a lost cause.

    I tried a rheumy, but my case was too complicated for him, at least I think that's why he told me he couldn't help me, even though I have friends he has helped. So I ended up at an internist who specializes in CFS and FM. He's out of my health care network, but I still get 70% coverage, so the difference, after the deductible, isn't too much from in network.

    Calling potential docs and asking questions of the person who answers the phone is probably the best way to know where to go. When I called the doc I now see I already had been told by another patient how wonderful he is. His receptionist told me they would be sending out paperwork for me to complete before I went to the office. Another good sign. It was quite detailed and if I had tried to fill it out on top of the office visit I never would have made it.

    He does call my case a complex one, but he thrives on it, and goes out of his way to try and beat the insurance company when they deny coverage for medication which could help me, but doesn't meet their narrow guidelines for coverage.

    Good luck in finding a doc to work with you.

    Barbara
  7. Roxi

    Roxi New Member

    Great advice from everyone! Really appreciate it, and having this site to come to! Roxi
  8. cupimick

    cupimick Member

    Hi Roxi,

    Just wanted you to know that I too have been in your shoes and for the record went to 10 specialists that really did nothing. It is true that you really need to be proactive as I am finding out more just by doing research ,finding this website was striking gold!! and such wonderful caring people who I consider my support group and friends here has been a blessing. This site is wonderful!! The website can direct you to Drs, who understand CFS/FM, which is where I am at right now, trying to find one to go to who specializes in it and does not discount it like so many others do. Well take care and know that you are not alone!!
    Take care,
    Deanna