How Do You Explain Fibro To Others?

Discussion in 'Fibromyalgia Main Forum' started by techno, Aug 25, 2005.

  1. techno

    techno New Member

    How do you explain the disorder of Fibromyalgia to others
    who question you as to what it is?

    I find that I start to explain that its a brain disorder that
    causes intermittent pain throughout the body which also leads
    to a sleep disturbances and extreme fatigue.

    I want to also explain that it causes disturbances to the
    autonomic nervous system that controls breathing, heart
    functions, and other organs like digestive etc.

    But, I never get to fully explain everything, as my brain
    fog interferes with my ability to explain it and the people
    usually cut me off mid-sentence as it's probably too much
    information for them to digest.

    What do you say when asked this question?
  2. Kathryn

    Kathryn New Member

    Most people don't really want a detailed explanation of medical problems, so I just tell those who ask that I have a neurological problem caused by cervical damage I sustained in a traffic accident. Close friends know more, but they are those who actually CARE about me.

    Kate
  3. msthang

    msthang New Member

    just tell the basics. if u know how u got it tell them that. or just tell them its a type of arthritis. tell them to imagine they had a really bad case of the flu then they would only be able to begin your pain. i read that in a book some where.
  4. Lurlasgirl

    Lurlasgirl New Member

    unless it's someone who really cares :)

    I agree - trying to give too much information just results in a glazed look in the eyes of the person you're talking to a lot of times.

    I usually just say it's a central nervous system condition that cause a good deal of pain and fatigue. If they continue to ask questions, I'll elaborate, but usually, that's enough to satisfy them.
  5. hehmommy

    hehmommy New Member

    I usually will just tell then that it is a disorder where I have sever pain from head to toe everyday of my life and always tired. They usually get that.

    Trish :)
  6. petesdragon

    petesdragon New Member

    My sister-in-law told me to tell people I have a chroic pain problem. Period. And it works. But then I give them the pamphlet that I got from immunesupport. I even gave one to my doctor. He said "I already know all this stuff" and bet me I could call him in the morning and he could still tell me he already know this stuff. Two sentences later in the conversation he said ( I didn't know that.) I told him it was in the pamphlet. I love my doctor so we often tease each other about stuff like this.
  7. techno

    techno New Member

    Thanks for those replies....

    I kinda like the one where we just say:

    It's a chronic pain problem affecting all of the body
    that lasts forever....

    Like a permanent case of the Flu .......

    Also like the one where we say its an contagious
    autoimmune disease Ha! Ha! .........

    Have a good day!

  8. Rose_Red

    Rose_Red New Member

    I tell people I have a 'degenerate muscle disorder' (I'm so far deconditioned that I 'm beginning to degenerate.

    or

    I tell them I have arthritis in the muscles instead of the joints.

    I get "I'm so sorry to hear that - but you look so good" from the 1st one. I'm usually not in the mood for pity, especially from people I don't know or care about.

    I get a lot of understanding from the second one. Especially from older foks who also suffer from arthritis.

    Sometimes I just rattle off "FibromyagiaAndMyofascialPainSyndrome" all in one word and people aske me "Is that as bad as it sounds?" My answer is always the same. "No, actually it's worse."

    I've been very fortunate that the people in my life are very supportive and try to learn and understand the things that are wrong with me. Except my ex-husbands family. To them I 'made it all up so I wouldn't get b**ched at for popping pills all the time.' Notice I said EX-husband heehee.

    ~michele
  9. ibisgirldc

    ibisgirldc New Member

    I simply say that I have a chronic pain condition... If there's a reason to explain further, I say it's called fibromyalgia and it's similar to arthritis, but it affects muscles as well as joints. That my body is just super-sensitive to pain. If they need to know more, I'll direct them to a web article or something similar...
  10. kalley167

    kalley167 New Member

    I don't try to explain it anymore. And I definitly don't use autoimmune as Fibro isn't considered one and people asscociate autoimmune with Aids and I definitly don't want those looks.
    Since I have Chronic Fatigue syndrome I use it more than the FMS. But normally I just say a chronic pain disease.Its just not easy anyway you try to explain it to a normal who doesn't even want to understand. Now I am not saying all of them don't because a girl I work with even wanted to look at my pamphlets I have and educate herself about it .But most just comment that they have aches and pains too so I just drop it.
  11. elsa

    elsa New Member



    I keep it very simple. Tell them it is a illness that causes muscle and soft tissue pain ... and that the pain and location varies from day to day.

    I might throw in that it feels very much like a muscle or ligament tear and that dealing with the pain everyday can also take me out physcally. I don't "heal" at night like you do, so the tears go on and on.

    Elsa