went to a support group for fibro ppl....

Discussion in 'Fibromyalgia Main Forum' started by FMsolider, Sep 5, 2006.

  1. FMsolider

    FMsolider New Member

    ....and boy what a disappointment!I was exicted to meet people like me, who would understand and that in turn I would understand. Not the case...all these people wanted was a quick fix. No one really seemed like they wanted to get better or wanted to be more indepentent. I brought up the idea of exerisce and you would have thought I said I was a Nazi or something. They were trading Oxycotin and other pain killers right there in the open. I hate to say this b/c I hate the sterotypes associated with FM but, these people were lazy, drug seekers/addicts, and wanted attention and an excuse to drop out of life. I can honestly see how some in the medical proffesion or in society in general can get the wrong idea about those of us with this illness. They actually tried to convince me that I was misdiagnosed b/c I am not wheelchair bound and b/c I force myself to workout. Ughhhhh...what a bad experience.
  2. myalgiamania

    myalgiamania New Member

    my dr told me that those support groups were not very good. i'm sorry you had a bad experience. i think this is a good place to find people who really care and want solutions.

    Hope your feeling better. God Bless.
  3. FMsolider

    FMsolider New Member

    I think it was some kind of weird conquencse which the chances of happening again are pretty slim. I can't believe it - I think some of them were faking. Just a gut feeling of course, so strange. I agree- this is a much better place to met others.
  4. MamaDove

    MamaDove New Member

    I thought I would share my experiences with support groups too...

    12 years ago when my health started to go downhill and fms was an idea, I went to a chronic pain support group, most talked about having fms and I remember thinking, they don't look like they feel as bad as I do, but for my doc at the time I gave it a try...

    After each meeting, one would run to burger king and shove food in her face, one went to the bingo hall and one was going to the mall shopping...I could barely make it back to my car...They all smoked and ate crap and all compared notes on what kind of 'hard drugs' they were taking...Boy was I disappointed! It took me 10 years to even consider going to another...

    Last year I found a group for FMS and CFIDS and wow what a difference...These people were actual sufferers, not pill poppers, in fact many don't do pharma, like myself, and we all shared a common goal, finding answers...I did notice that a few each time would come, talk ONLY about drugs and their terrible spouses and you would never see them again...And none understood their so-called diagnosis...They did zero research and whatever their docs said, that was the law! I quickly knew who was truthful and who had an agenda...Who wanted to help find the answers and who were there to find out how to bilk the system...

    Unfortunately, with these dd's, the ones where no one test confirms what we have, they are easily 'faked'...Again, if you can walk the malls for hours, sit in a smoked out bingo hall for 3 hours having a good time, I don't believe much of what you say you suffer from...They are moaning and groaning at meetings and therapies but smiling and laughing as they run through Wally World...Faker!

    More recently, another group started up nearby and this is where I met people right up my alley...Educated, trying to work still and keep some semblance of normalcy and when the discussion turns to pharma or supplements, we keep it minimal, basically only discussing new things and never allowing anyone to disclose what hard stuff they take, for their safety...Imagine, some people go to these group meetings to scan who has what so they can rob them later...

    So, I have been where you are way back when, but now found two great groups with our kind of people...The Real Deal!

    It may be time for a change in that, if possible, you could begin a group yourself...I feel so for the leaders of my groups, the work they put into it and many don't appreciate it, but I believe they are rewarded by the few of us who let them know how much their appreciated...I don't let a day go by without an email to each, just to say HI...

    It is one of the few good things that have come out of my illnesses...It really makes a difference having others that truly understand meeting face to face...Imagine if we could meet some of our faves on this board at a meeting each month? I get to do that 3x a month and it helps enormously.

    Don't give up tho...Look elsewhere...Once you find the right group, there's nothing like it...If we have to suffer with these dd's, we don't have to go it alone...

    Peaceful days ahead~Alicia
  5. carebelle

    carebelle New Member

    But I dare say I think what this board offers here is very unique and we are all very lucky and Blessed to be able to come here .

    I'm just not sure how anyone gets to a support group ,I do not know from hour to hour what I will be able to do.
    But I wont judge how other people cope with this DD

    We are a fast food ,comfort junk food nation .I think a lot of people eat what ever they can and we all pray what we eat will not end up hurting us.I know there are Days I can not cook or stand at a stove .

    I also think there are a large amount of people MIS Diagnosed with CFS/FM .I think people self Diagnose and I think there are even people that go to meetings maybe to find out about Doctors who prescribe meds easy.They can find that out at group places just by talking.

    I do not like how hard those of us truly Ill have to fight for respect and understanding about our different symptoms. I think somewhere along their journey those that do not have this DD will face something in life as devastating ,maybe then they will understand what harm they have caused us.