"True" Fibro patients getting bad rap, please read on

Discussion in 'Fibromyalgia Main Forum' started by farmgetty, Nov 25, 2005.

  1. farmgetty

    farmgetty New Member

    Hi, to everyone! My sister works at a nursing home and is familiar somewhat with fibro etc. On Thanksgiving day her, myself and my mother were on our way out to eat, and my mother asked my sister what is wrong with our other sister who lives far away, and my sister replied "Oh, she has fibromyalgia, every one has it." meaning thats the "brand" they are labeling anyone who complains about pain, and now I'm wondering is the ones who are hearing about fibro putting this name to their woes without documentation and hurting it for us the ones who do have it, and because of this it "could" set us back 20 yrs, because of the name fibro. is so easily used. Just for a moment, well, more than a moment I was secretly wanting my sister to feel what most of us who actually know we have it,what it feels like.
  2. chickadee

    chickadee New Member

    asked which doctor diagnosed your sister and if they knew what medicine she was taking, etc.

    I get this a lot and I want to scream but realize that people have been self diagnosing for years. My mother who has been dead for more than 20 years, complained for years about her arthritis; and, as far as I know, no doctor ever told her she had arthritis. I now believe it was fibromyalgia. So, years ago, every pain was arthritis and today every pain is fibromyalgia. (Of course they don't have a cure yet for arthritis.)

    Peace
    Chickadee

  3. Tigger57

    Tigger57 New Member

    Sadly, I believe that is true. I think a lot of people who don't have fibro claim they do because so many people seem to have it. It certainly does hurt matters for the rest of us who actually do have it.

    I find the same issue with Chronic Fatigue Syndrome, which I also have. If someone is tired, they have chronic fatigue. They also confuse "chronic fatigue" the symptom, with "chronic fatigue syndrom" with the "syndrome", true medical diagnosis.

    Hugs,
    Tigger
  4. unbalanced

    unbalanced New Member

    I agree, everyone has FM. So they claim. Some people are truly addicts looking for a way to get narcotics, I have personal experience with this. Sadly, my sister is an addict, she went from stealing my pain meds (I use a lock box now) to going to a doc & telling her all of MY symptoms so she could get narcotic meds. I found this out one day while she was living in my home & I caught her reading my pain diary. I asked her what she was doing, surprisingly she told me the truth! I am disgusted with her & people like her they ruin our chances of getting help & docs listening to us. Docs see this all the time & still cannot determine who is suffering for real & who isnt.
  5. lbok

    lbok New Member

    My son has been diagnosed with high functioning autism - which has nowadays been a label given to many kids who exhibit very little symptoms. So, sometimes you just get the rolled eyes from people. But my son has difficulties especially with language that are not pretend. Autism is a spectrum disorder though - so you can have people who are mildly affected all the way to other end of the spectrum. It causes confusion for those on the outside looking in - especially when people have an attitude that autism only looks like Rainman or something.

    However, - I often wonder if it isn't a self defense mechanism for people to want to deny that there are so many people with these conditions. Whether it is alot of kids being diagnosed with autism or adults with auto-immune disorders or fibromyalgia or CFS. I don't think it is as overblown as some people make it out to be.

  6. Musica

    Musica New Member

    in other disorders. Which doesn't make it better, or right, for any who have to suffer daily with them.

    It is so frustrating when people just say "oh that". I think sometimes the old "but you look so good" comes into play. Unless you have an obvious disability, it is too easy for people to deny that anything serious is wrong with you. It's like asking "how are you?" Most people don't really want to know or get involved further than "I have a cold/flu" "I'm sorry, I hope you feel better".

    Also, I think people are so anxious to jump in and talk themselves. I have rheumatoid arthritis and people are quick to say "oh, I have/my aunt has a little arthritis in my/her little finger/knee" etc. NO, RA isn't just a "little arthritis"! They have no idea that RA is an autoimmune disease, it ISN'T wearing down of joints from use, and we have to take nasty medicines to try to control the disease. Anything involving the joints tends to be lumped into "arthritis"; anything involving general pain, I guess, is now lumped as "fibromyalgia".

    Unfortunately, these conditions tend to be minimized because people don't recognize much of our pain or fatigue. They don't understand "chronic" or "flares", or why we agree to do things then struggle so much or even not be able to carry through when it comes to it.

    I think what is important is to keep educating others. Not to get angry or defensive, but explain what the condition really entails. Whenever I mention RA, I am quick to say that it is different from the arthritis that most people think of. I like "The Spoons Theory" a lot to explain fatigue. The best defense is a good offense - instead of letting ignorant statements be uttered, because people do speak out of not having knowledge, educate right away. It's hopefully easier for people to listen if they don't have to worry about saving face because you are trying to correct them.