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  • fibromyalgia :(

    went to the hospital this morning, finally got an appointment with the rheumatologist ...... he is 99% certain i have fibromyalgia, apparently everything that i've been moaning to the doctor about for the last few years are all symptoms

    i have had blood tests galore, (hormones, infection, etc)and urine tests, and nothing has shown up,other than i'm not menopausal lol and everything is normal...... but you know something isn't right when you constantly feel like you have been run over by a train.

    so i've had another blood test today, for vitamin deficiencies, and thyroid problems, and a couple of others .......

    and he's put me on amitriptyline, he reckons, that, combined with the duloxetine i'm already on, should help me sleep and hopefully take some of the pain away. he is also sending me for physio

    i thought i'd feel better if i got some sort of diagnosis ..... but now after having read up on it, i don't know how to feel other than pee'd off and fed up and miserable.

    anyone have it or know anyone with it, and have any advice please?

    Lynda xx

  • #2
    In my experience there are two types; There are fibromyalgia sufferers and there are people who have fibromyalgia. The "sufferers" will tell anybody who will listen that they have an illness, they will take any drug they are offered and will use it as an excuse/reason to not do stuff. They are victims and will never get over it (even if they wanted to). Then there are the people with fibromyalgia, they still hurt, feel crap and have all the other associated symptoms BUT it does not define them. They get on with their lives, they don't fill themselves with pills and they don't spend days in bed.
    Both types have the same condition, they just have a different approach. The more you do, the higher you tolerences will become, yes the cold wet british weather will cause you pain but the rest of the world does not need to know. You can do anything you put your mind to albeit a little more slowly. You have a diagnosis, it is a bit of an anticlimax to begin with as no-one will say "take two of these and you will be better in the morning". However, you now know that you do not have anything serious or life threatening, it will not get worse.
    I don't mean to sound harsh, but it is very easy to become sucked into a cycle of self pity and moaning - don't do it, it doesn't help!!!!
    Wake up tomorrow and feel better, make a decision, be someone who has a life and fibromyalgia rather than a victim. You are still the same person, don't let a label ruin anything.
    Tx

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    • #3
      I wouldn't recommend this unless you have a GP's blessing but I have ditched all prescribed meds but paracetamol. I now have a strict vitamin and herbal regime. He didn't approve at first but after 3 months so far so good (and usually I am worse in the summer).

      Saying that 100 people with fibro =101 different ways of managing/not managing. I have never met 2 fibro folks who have the same symptoms or amount of pain or amount of disability.
      Last year I was in a wheelchair. This year I'm not.
      http://www.freewebs.com/notesfromtheplot/ **updated**

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      • #4
        Amitriptyline hope you like dreams i had a course of that in 1995 and the dreams that i had were the most pornagrafic that i ever had doctor did not prescribe again after i told him so good luck jacob marley
        What lies behind us,And what lies before us,Are tiny matters compared to what lies Within us ...
        Ralph Waide Emmerson

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        • #5
          Hey there

          i know now't about owt to do with this - but you seem the last person to wallow in self pity. The dreams sound good though.

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          • #6
            I haven't "known" you for very long, but you seem like one of the most upbeat posters here! Sorry to hear the news - no wonder you feel gloomy about it. I wouldn't feel in the least bit bad about wanting a moan - I think you deserve it!!!

            I do get the point about not "being a sufferer/victim" but you strike me as being at risk from that! x
            I don't roll on Shabbos

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            • #7
              sorry lynda about your diagnosis, not good eh, I suffer HMS, and am awaiting more and more hospital appointments and need to see a rhumey, but the docs are sending my to ortho!!!! darn docs!!!

              anyway, you sound like me, so i dont think you will let it affect you, well i hope not, but i hope the pills help and that you get some sleep at last xx

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              • #8
                argh argh I meant you DON'T strike me as being at risk from that!!!

                what a dur brain. x
                I don't roll on Shabbos

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                • #9
                  Originally posted by squashysu View Post
                  sorry lynda about your diagnosis, not good eh, I suffer HMS, and am awaiting more and more hospital appointments and need to see a rhumey, but the docs are sending my to ortho!!!! darn docs!!!

                  anyway, you sound like me, so i dont think you will let it affect you, well i hope not, but i hope the pills help and that you get some sleep at last xx
                  Sorry me again... Squashysu, is HMS hypermobility syndrome?
                  I don't roll on Shabbos

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                  • #10
                    funny coincidence but i went to see rheumatologist today .got diagnosed with sacro iliitis (not sure of spelling) ,I have crohns disease and had a mri for that a few week's ago and it showed a problem in my back.I don't know about you but it's a relief being diagnosed,i know it's not in my head.I feel more frustrated having test after test and they all come back normal when i know there is something wrong.I hope the new medication work's for you and your feeling a bit better soon.
                    Live long and prosper.

                    http://s177.photobucket.com/albums/w213/jojo333_photos/

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                    • #11
                      Yes it is Rhona. I have it too
                      Lynda, panic not. At least you have a name for what's going on, and you & everybody else will know that it's not "all in your head" or even worse, made up! You have already started learning to live with it, and that'll carry on. You can look up lots of websites with info & join a forum or two where other people have also learned to live with it. The HMS website has a good forum, where there are quite a few peeps with FM The Hypermobility Syndrome Association - hypermobility syndrome, bjhs, beighton, joint, hypermobility, minor, score, benign, ehlers-danlos, diagnostic, syndrome, laxity, ehlers, brighton, criteria, rheumatology, association, eds, minor criteria, majo
                      Paste a grin on honey, hope the pills work

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                      • #12
                        Hi Lynda
                        My mum has Fibromyalgia She first started with symptoms many years ago when it wasn't heard of as she used to work a keyboard they though it was repeditive strain at first, This was when this all first was talked about, she had to give up work as using the keyboard was too painful. It took a further ten years before she was diagnosed. Mum has constant pain in back down her arms and hands, she had tinitus and has suffered from irritable bowel and restless leg syndrome in the past.
                        The main thing she has found is to get a good amount of uninterrupted sleep each night mum takes meds i'll find out what she's on have to say I have noticed a big difference since she walks faster and can managed for longer now she gets a good six hours uninteruppted sleep if she forgets her tablets or takes them late she feels worse the next day she's worse in the winter than summer but the key for her is to continue to move she swims once a week and weather permitting goes for a walk ever day when in the house she may sit for while get up and hoover then do dusting later in the day from what wehave found out fibro is diiferent for everyone mum walks unaided its also said that it doesn't get worse like arthritis you will be worse depending on weather overdoing the exercise or under doing it lack of sleep etc nut once it reaches a level you don't go beyond this. So it depends on your own symptoms it's all linked to the nervous system. I and my daughter have hypermobility syndrome and again depending on what you read there maybe a connection although so far I have no symtoms of fibro. If ou have any questin just ask and I'll get back too you Keep your chin up as Tootles says its al in the attitude

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                        • #13
                          Blimey - there's a lot of it about isn't there?! I was diagnosed with EDS a few years ago when I dislocated my shoulder. I used to do a lot of ballet dancing and it does affect lots of dancers. Tootles - you'll be glad to know I haven't been back to the drs since : ) - I must have relatively low key symptoms as mine is managed with Neurofen if it flares up and the odd physio session. The only time it bothered me to any extent was when I pregnant recently - otherwise I think I must be pretty lucky.
                          I don't roll on Shabbos

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                          • #14
                            I do ballet dancing ( and tap and jazz ) My mum has hypermoblility so chances are i have it to. My gran has fibromalgia and i think mum has already mentioned it

                            Keep your chin up lynda
                            Stacey x
                            Stacey x ♫

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                            • #15
                              [QUOTE=happybunny;249751]I do ballet dancing ( and tap and jazz ) My mum has hypermoblility so chances are i have it to. My gran has fibromalgia and i think mum has already mentioned it


                              Chances are you'll be a good ballet dancer then Stacey! My osteo guy was resident with a well known company and he gave me some solace by saying that many soloists get that bit further by having HMS/EDS! Hijacked the thread a bit!
                              I don't roll on Shabbos

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