Nobody will understand fibromyalgia unless they have it

Discussion in 'Fibromyalgia Main Forum' started by wheezie3, Nov 29, 2009.

  1. wheezie3

    wheezie3 New Member

    If your family members don't have fibromyalgia, put them on the computer and let them read about it. I was diagnosed 19 years ago and my mom cried her eyes out. She heard about a specialist in NYC and we went there for almost three years. And for all of your family members that even stub a toe or any little ouchie......tell them to suck it.......Fibromyalgia is real and it hurts more than I can say. It hurts to type. When you can't get out of bed and you were a gold medal gymnast, varsity softball pitcher and volleyball know what pain is. maybe they don't
  2. wendysj

    wendysj New Member

    Hi Wheezie3,

    I can understand your frustration with people. I was ashamed for years to tell people what caused me so much pain.

    Luckily the people that made me crazy were not family members... My family knows how active and full of life I was before all this started. My brother said one time, "My sister went from a bright, vibrant, funny young woman to a woman that can't take a shower." My brother went with me to many of my doctor's appts because Drs. treated me so poorly.

    I agree with you, this dd is God awful. You were diagnosed 19 years ago? Have you had any remissions or seen any progression or is it still about the same as 19 years ago?

    Please feel free to not answer any questions that are too painful. I'm just curious what the next 19 years will be like for me.

  3. Svette_Palme

    Svette_Palme New Member

    Like a moth to the flame, I am drawn to any discussion of "they don't get it" with Fibro.

    I have family who don't get it, and it makes things really tough at times. One of them was having their own serious problems this year and begged me to come to stay with them, but they live 400 miles away and I cannot drive that far {maybe in the summer but this time of year [autumn] is the worst for me, and this year it is colder than usual too and I am really a wreck right now}.

    So, their denial of my pains ends up looking like I simply don't care enough to drive to see them.

    That causes me no end of stress and grief. I tried to keep this stress from impacting on my Fibro symptoms, but it does anyhow. I got worse. I stayed home.

    Also, just the fact that I am not working, but by appearances I look well enough to work. I walk upright without a limp [because if I favour one leg, it causes muscle spasms on the other side, all up the body, resulting in my neck muscles going spasmic, so I just don't limp even if one leg is really painfull].

    If I go for a bike ride, which is remarkably "not painfull" because there is no weight on my legs, people think "gee, that Fibro person is healthier than I am, he isn't sick". Arrrrrrgggggg.

    Thanks for letting me rant, even if nobody reads it!!

  4. lvjesus

    lvjesus Member

    I have to say I really understand what is being said here. I had never thought of it before this and was actually thinking about it today and when you DO think about it it does kind of make sense that you can't know how someone else really feels unless you have the same challenges.

    For example, one of my coworkers has a wife with MS. How can I really know what having MS is like or what she struggles with if I don't have it. But you have to admit that it is disheartening when you are crashed out and your husband comes in and says, "what's wrong with you?" GRR
  5. cpdwife1519

    cpdwife1519 New Member

    so what do we tell these people , what or how do we explain our illness?!
  6. sharon5650

    sharon5650 New Member

    I certainly agree, it's awfully frustrating when you feel like you have to explain all the darn
    time, otherwise they actually think your faking it.
    I have had those who say, all you need is more exercise, more fresh air, and get off those dam addictive pain killers, gezzz only if they knew what we go through.

  7. fight4acure

    fight4acure Member

    I think I'll attempt at writing more poems on this illness. Maybe then I can get back the positive spirit I had before I moved in with someone who calls and considers me lazy and unmotivated every day.

    Maybe now that doctors know that there is a connection with X-whatever virus, maybe we can be infect... oops, have to stop my thoughts before I sound more insane than I am.

    Fight4acure! :)
  8. kellygirl

    kellygirl Member

    This is my concern when I go for my hearing in January.
  9. fight4acure

    fight4acure Member

    Yep! You nailed it on the head. I struggle way too much with these thoughts, "If only they knew how I felt, then they wouldn't be calling me lazy, unmotivated, and a bum." "If only the doctors and some others had this pain for a day, or maybe they'd have to have it for a month or a year to understand that there is no end in sight." I just wish they'd stop being like they know what pain is and about my pain, when they do not. They assume I'm making a big deal out of something small. How I'd like them to experience this for a month. Yes, I know this hurt and anger all too well. :(


    P.S. If only the doctors had this, then they wouldn't be asking me if the depression I have is causing me pain. They should know better than that because at times, when I'm lucky, and my pain decreases a bit, I am happier, less depressed. And, I want to do things but I cannot. A person who is completely depressed does not have desire to do things. I have a three or four page list of all the things I want to do when I get better, if I get better.

    Hugs[This Message was Edited on 12/24/2009]