??? Doctors and Support Groups ???

Discussion in 'Fibromyalgia Main Forum' started by FibroFay, Aug 27, 2009.

  1. FibroFay

    FibroFay New Member

    My doctor frowns on Fibromyalgia Support Groups. He does not particularly encourage me to come to this message board, though he knows I do it.

    My physical therapist is the same way. She said, "I don't encourage it."

    These are knowledgeable professionals who have treated my fibro for the past 14 years.

    Does anyone else find this to be true with their healthcare team? Why do you think it's so?

    Just wondering.

    Best wishes to all.

  2. street129

    street129 New Member

    well my endo, told me there is nothing else he can do for me, but, i can stop by to say hello, what an a hole
  3. FibroFay

    FibroFay New Member

    like the medical community has a strong aversion to fibro support groups.

    Like I stated, my doctor and PT recognize and treat my condition. Both are good people. But, they seem to think by being a part of a support group I'll only get worse, or certainly not get better.

    It seems like they think we just make each other miserable.

    Does anyone else get that impression?

  4. FibroFay

    FibroFay New Member

    Thanks for your input.

    I see this board as much more than a pity party. There's alot of useful information passing through here. And, I see emotional support when it's needed.

    I'm like you. I'm not here for the pity. I'm here to know I'm not alone, and to see that I can make it because others are making it. And to tell you, you can make it because I am making it. You know what I mean?

    Sometimes we all need to just cry and rage. We are dealing with a monster of an illness! But, I don't fear getting stuck in my misery. I've learned from experience that I do get through my miserable moments.

    We are very strong. None of us needs to be "done in" because another is having a bad day or days. I'm strong enough to help you, or others, through. And I know you are strong enough to help me through.

    I get frustrated that the medical community doesn't see our strengths. Just our weaknesses.

    We are more than our illness!

    That's my position on that.

    Onward and upward. Thanks for your replies.

    Hugs, Fay
  5. AuntTammie

    AuntTammie New Member

    like Drs, support grps vary a lot in how good they are and how much they help.....however, the good ones can be a huge help in providing valuable info and ( to state the obvious) good support.....there have been quite a few studies showing the value of support to one's health (not just mental health either) and overall well being, even longevity....these studies generally inc all sorts of support (grps, family , friends, etc)....the thing is that so many of the usual supports are either not available to us, bc this is an isolating illness, or they just do not understand and as such, can be very unsupportive

    unless your Dr thinks that you have been to a support grp and found it to be a bad one (ie; one that brings you down) , he/she should be supportive in your desire to get support
  6. FibroFay

    FibroFay New Member

    I believe my doctor just believes in "mainstreaming" his fibro patients.

    Like you stated, that just doesn't work for us. We cannot get out there like many others. And many people just don't come to us, for whatever reason.

    The mainstreaming approach just doesn't work for me. My doctor will just have to get over that.

    Hey, have a good day.

  7. FibroFay

    FibroFay New Member

    I think if I were you I'd ask for a second opinion. That endocrinologist is no good to you any longer.

    Don't give up hope, street129, there's more and better help out there.

    Good luck to you. Thanks for your reply.

    Hugs, Fay
  8. AuntTammie

    AuntTammie New Member

    I'm glad that you are not listening to your dr in this case. I'm also glad that you have a Dr that overall seems good, but I do find it strange that if he understands fibro, he doesn't understand that "mainstreaming" doesn't work for many fibro patients.
  9. jasminetee

    jasminetee Member

    Right on Jamin! It IS none of their business where we choose to go, what we choose to read and whom we choose to talk to.

    Any doctor who is concerned about Support Groups making you worse clearly believes that there is a psychological component if not explanation for your symptoms. Obviously, if you just think happy thoughts and stay away from anybody telling you anything that might be upsetting you'll get better.

    Either that or these doctors are afraid we'll be more knowledgeable about our illnesses than them. They don't have the time and motivation to study our DDs like we do.

    This always riles me up as I've been told the same thing. Grrrr! They need to mind their own business, stop psychologizing CFS and FMS, stop thinking we're all totally brainwashable, and stop being paranoid.

    Actually, now that I've typed all that out, I think that's too tall an order for them. Oh well, not our problem.

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