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Thread: Fibromyalgia

  1. #1
    By the methane lakes Bloody Grace's Avatar
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    Jun 2010
    Montepulciano, Italy


    I'm starting this thread because I feel like I need to talk about it with someone who understands it, in the case someone on the forum has it. I know it's a very common disorder, but it's really poorly recognized.
    I was diagnosed with fibromyalgia, vulvodynia and D vitamin deficiency a couple weeks ago, but I've been jumping from one doctor to the other for 10 years and I think I have been having symptoms since I was pretty young, because I remember that around the age of 10 I often felt like I couldn't breathe well when I laid in bed, as if my chest couldn't expand well.

    I've also had atopic dermatitis since I was 6 or something, but it was only diagnosed last year because idk, I'm not sure if my parents just thought that it was nothing serious and never brought me to see some specialist or it's just that many doctors can't diagnose this kind of diseases. To have these diagnoses I had to specifically look for specialized doctors because the ones I was seeing kept telling me that I was "stressed".

    I think I present many symptoms of fibromyalgia, except sleep issues (which I had in the past, but not now. I once experienced sleep paralysis and that was enough, thanks. Weird phenomenon.), migraines and TMJ.

    I had (and have) migrating muscular pains that magically disappeared when I had to take xanax for insomnia, I have occasional problems swallowing and digesting food, IBS, tinnitus, fatigue, occasional amnesias, serious concentration issues, cystitis and so on. The two things that affect my daily life the most are sight issues and hand pains. I work with hands a lot, I'm an illustrator, graphic designer, writer and I play the piano, but because of the pain I work slow and I have to stop doing what I'm doing every half an hour or so because I just feel exhausted and my hands are all dizzy. A few years ago I was getting really worried because I couldn't hold a pencil for more than 10 minutes, and drawing is something I cannot give up.

    Then there's vision. Is anyone else experiencing unexplained double/fucked up vision? I've seen 5 opticians and all told me I'm fine and my glasses are ok, but I see really bad from any distance. I have difficulties driving because my eyes are slow and I often lose focus when I blink, therefore sometimes I mistake shapes and spaces. I started noticing it around 2014 and since then it has gotten worse. I told my rheumatologist about it but he did not have an answer besides "let's see what the therapy does".

    The cognitive difficulties are something I've started noticing later, because earlier this year I had moments when I wondered if I was experiencing some kind of early dementia. I couldn't remember things my husband told me I did, stuff people told me, and often when people would talk to me I just couldn't pay attention. I've always had poor concentration but now I notice that it's something more than boredom or tiredness. Now I've started writing down things because I can't remember stuff at all, there's always this fog and I have difficulties structuring articles and written pieces, I have to reread stuff a billion times to get it and I have difficulties to keep track of the whole picture. Therefore I'm dreadfully slow at writing, reading and counting. My piano teacher was always complaining that I was slow at reading music sheet, but I just can't help it. I have to stare at a note for a few seconds just to understand on which line it is. After 6 years it still takes me a few minutes to read one bar. I usually memorized the whole thing and tried my best.

    Right now I've been given Nicetile and some vitamins to see how I do in a couple months, but I'm not experiencing any improvement after 2 weeks.
    I should do yoga or water exercise to relax my muscles, but they're expensive and I really hate sport facilities. I tried to convince myself to jog but I live in a place where in summer there's 39°C all the time and I suffer the heat very much. I actually feel like summer makes fibromyalgia much worse. I know I should really do sports, but with the kind of job I do and the kind of place I live in (mostly agricultural countryside with little woods and one, long, straight public path) it's quite hard to keep myself doing it regularly. I feel it's so time consuming and I don't like the idea of spending so much time doing something so boring as sport. But I know I should.

    I have the luck of having a very caring and understanding husband, he even (partly) overcame his fear of needles to make me injections I don't want to be a burden to him, so I try my best to keep the syndrome under control without complaining uselessly.

    Is there someone else who would like to share her/his story?
    Last edited by Bloody Grace; 07-14-2017 at 08:46 AM.
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