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.

Fay

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

it is absolutely no one else's business where I go and what I do for my health issues or any other issue I deal with in my life.

The more we know about these health conditions, the more we can help to do our healing. We are all hear to share what has HELPED us. The doc's have no ideas, they don't walk in our shoes.

Unless they deal with FM or CFS, etc.

There is just so much docs can do or will do for us and the healing spectrum is so HUGE. So many areas need to be addressed and these professionals!!! don't have the time or really care to work with us thru all this. If I had to depend on my docs, I may be in so much worse condition than I am now.

I've had "harm" done to me in the past listening to ONLY docs and I've learned....take care...jam

BTW: When I was given the FM dx in 1999, you couldn't keep me away from the FM/CFS support group here in our city. Also, remember we are only numbers to doctors, we come and go, friends and others in our lives are there for us. I don't want to sound cynic, but this is so often the case. Our friends don't make money off us...they truly want to help.

Perhaps many years ago and maybe still true in some areas of the country, docs/patients have a closer relationship, but not in my city.



[This Message was Edited on 08/27/2009]

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?

Hugs,
Fay

2 docs stay away from all other areas...perhaps they feel that is best for you.

I do see that many here "feed" off other's misery, but I don't as I continue to work on my healing and don't want to stay in pity. Even when my friends ask how I am or when I offer, I let them know I don't want their sympathy but I'm just saying how I feel.

Some days we feel better than others and that's just the way it is.

PS: the support group I attended for a long time was some help but I found so many were not working on real healing. the leader at the time kept bring sugary crap to the meetings and that's the last thing we need in our bodies: sugar. I've stopped going to the meetings as I just don't care to hear from all those that are still so stuck. I've offered so much help over the years as to what is helping me. There is so much healing that can be achieved.

[This Message was Edited on 08/27/2009]

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

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

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.

Fay

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

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.

I try and keep an open mind. I have a gp doctor who has a special interest in maternity. It was out of the goodness of his heart that he took me. He was a clinic doctor who I went to when the new psychiatrist that I had been seeing suggested I had cfs and my doctor refused to give me a referral to a specialist - it was at that moment that he said he would be my doctor. He claims to know nothing of this illness and he doesn't like me going on the internet about it. My belief is that he thinks I will fall into some misinformation that may do me more harm. He has supported me in any of my theories, but cautions me and says it wasn't in his training.
I think many doctors have our best interests at heart but not easily express it. And there are of course those that do not care, have no patience, and only want the easy cases. Please make your comments known at www.ratemds.com it really helps when we can read up on opinions of a particular doctor before we decide to see him.

love glen


www.ratemds.com

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.