The Part of Life With Fibromyalgia I Haven’t Told You About

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8 Responses

  1. Nessa says:

    Thank you for your post.
    I can totally relate to not wanting to share the bad because people have told me to stop exaggerating, or respond with your always in pain.
    The brain fog and memory issues I get are devisating and beyond embarrassing. Especially when I can see the the irritation it causes the people closest to me.
    I am in a constant worry that I’m not doing enough or being resented by the people I live with because I can’t do as much as them or even house work.
    The most devisating part of this disease is fighting with medical professionals who dismiss it because they don’t believe it exists.
    Actually even more than that is the distance people who care about me back away and add distance because when I can’t hide how I’m being affected by my symptoms as well as I usually can. No one who cares for me can see me the same once they see me in pain.

    • Carrie says:

      I so understand every word you are saying, I have a couple of friends who have fibro & they are the only people who truly understand & believe what’s happening.
      This condition has effected every part of my life.
      I am currently going through a marriage break up because of the arguments between me & my husband about him saying he’s spoken to me about something & I can’t remember the conversations, it has become so heated & things have been said that can’t be unsaid that we can’t carry on together. He has become my full time carer & resents me because it has changed his life so much. He used to work & go to the pub everyday now he doesn’t, he’s started taking drugs as in his words its the only way he can live with me. That has caused too many nasty words to carry on.

  2. J says:

    I came down with this disorder (I refuse to call it a disease) shortly after I had mono. I was in my mid-30s, and it was 1989. I wen to doctor after doctor, referral after referral, only to be turned over to someone else. After 5 years, I was told to consult a psychiatrist because I was obviously mentally ill. Another doctor told me I had “drug-seeking behavior”, even though I had repeated over and over again that I wanted a solution and an answer, not a bunch of pills to make the symptoms disappear.

    Finally, in 1995, our HMO plan changed, and I found myself sitting on another table, talking to another doctor. This guy was young, and I was just waiting for the not-so-gentle referral to “someone else”. Instead, he listened. He wrote down every stinking complaint I presented. And he handed me the Kleenex box. Finally, he said for me to sit and wait a minute, he’d be right back. He came back the with New England Journal of Medicine, a recent issue that had an article about chronic fatigue and other systemic issues. In it, there was mention of a “new” disorder called Fibromyalgia.

    22 years later, they have developed vaccines for HIV/AIDS (usually a lifestyle-choice disease) as well as Hep-C, and a host of other diseases. And what do we get? Happy pills to make us feel better about being in pain.

    • Katherine says:

      Thirty years I have had this and it does get worse. It has hindered my career and my hobbies. It affect me socially in many ways, too. I hate it.

  3. Marijke Groothuis says:

    My worst fear about Fibromyalgia was that I would get an attack of brain fog right in the middle of a lecture I was giving. Fortunately this never happened – I am sure it was the adrenaline that kept them at bay – but it added a stress to an already stressful life, that now has seen me also to have to deal with heart disease. Not knowing what is fibro-related and what is not, only exacerbates what is truly a most energy-sapping condition. I am not even upset that there are vaccines for HIV/AIDS, Hep C etc. What I find more reprehensible is the fact that the medical world has seen fit to make men’s erections or rather lack thereof more important than the quality of life for millions of women (predominantly) around the world who are suffering from this rotten disorder. A word of warning to all the men out there though: the more women get added to the list of those already suffering, the less likely it is that Viagra is going to help them get the pleasure they so clearly “need”.

  4. Florita says:

    I use hemp oil and it has helped a lot and it’s legal in all states a friend that’s a chiropractor recommended it to me

  5. Alison says:

    I feel for all of you I have fibro so on a good day if I can call it that you see people so like every one with this they think your ok but if they were to see you the day after they would see a different person .if you get a good day so called then you no there are bad days or weeks to come . But they don’t see that I’ve had Cronin pain for weeks now I’m so sick of it I have a 13year old to cope with aswell she was only 5 when I was told I had fibromyalgia and I worked and looked after my mum done every thing for her house work gardening etc . Then in 2012 she past away . My fibro got worse and I even ad to give up work . Every thing go’s when you have this illness it’s like you life has been taken away . Then there’s the hardships that comes with it aswell it’s like a Levine nightmare day in day out . And the fibromyalgia gets worse with time they said it was because l lost my other daughter with meningitis it was the shock of that . I feel for you 25 is so young to get this . I wish you the best keep going alie

  6. Dave Anderson says:

    Thank you for sharing your experience with everyone.
    My wife has Fibromyalgia and CFS and it is a daily struggle for her and I feel helpless as I don’t seem to grasp the reality of the pain levels that you sufferers feel.
    This has given me a better understanding of how much pain you suffer everyday.
    I just wish there was a cure for this but unfortunately there is no cure.
    My wife has battled with this for over 4 years now and is still battling the odds everyday.
    She came up with the pain scale of 1-10, this worked out as 1 – 3 nothing being done as flatlined today, 4 -5 possibility of doing some light things but just light things, 6 -8 yep I can manage some little heavier tasks, 9 – 10 bring it on I’m ready for the day ahead.
    I kind of get what she means now.
    So now when I ask her how she is she will say the score and I understand how she is and this system seems to work for us.
    It is frustrating for the partners of sufferers as they seems to be helpless in trying to help understand the cruelty that all Fibromyalgia sufferers have to go through. I applaud you for sharing this with us all and standing tall and proud just like my wife

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