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Devastated. Diagnosis but little else.

Posted , 4 users are following.

SamN22
SamN22

I saw the rheumatologist today and he diagnosed fibro and says I also have symptoms of other syndromes. He then said it is something I will have to learn to live with and there is not a lot that can be done. I feel like I've had the rug pulled from under my feet... 

1 like, 14 replies

14 Replies

  • barb95783
    barb95783 SamN22

    Posted

    Hi Sam, it's not an easy diagnosis to come to terms with, but you can learn to manage it. So don't feel helpless. What other symptoms of other syndromes did he say you also have?

    Barb

    • SamN22
      SamN22 barb95783

      Posted

      Not sure yet. Said I was on spectrum for CFS too and something else to do with my feet. Checking for lupus at mo but I think that will be clear. Just a bit teary as I'd hoped for an end to it all and to not have to crawl out of bed every morning to work. Just told to get used to it...
    • hope4cure
      hope4cure barb95783

      Posted

      Barb.. Hi .u r so right about the helpless feeling and the loneliness.

      take care

      ((hugs))confused

  • kimhawkstone39
    kimhawkstone39 SamN22

    Posted

    Hi I was told the same and when you have to give your job up it is hard as I have always worked we are all here to support each other if you need us x
    • SamN22
      SamN22 kimhawkstone39

      Posted

      I won't be giving up my job but its full time and I commute 40 miles each way to work. Think I was just hoping for miracles. One to give me energy, one to stop the pain, and another to stop all the other horrid symptoms. Feel really low. Cried all day on and off. Sorry for being low...
    • barb95783
      barb95783 SamN22

      Posted

      Sam, has your doctor tested you for celiac? Considering the fibro, chronic fatigue and possible lupus, all auto immune disorders, that would be the first thing I would ask for. And if you test negative, you may want to try giving up gluten on your own for a few weeks and see how you feel. You might be in for a pleasant surprise. And beware - check those labels. 

      Barb

    • hope4cure
      hope4cure kimhawkstone39

      Posted

      Kim.. Yes for me giving up my favorite things down sizing my life was & still is the hardest adjustment to accept.

      hope u r well.

       

        

    • hope4cure
      hope4cure SamN22

      Posted

      Too much at once is so overwhelming. 

      Tomorrow will be a better day full of happiness & joy..

       

    • kimhawkstone39
      kimhawkstone39 SamN22

      Posted

      Do not ever apologise for feeling low we all have very bad days trust me, I had no choice with my job I was a teacher assistant and the head made it awkward for me plus I have so much pain I find it hard to do alot
  • hope4cure
    hope4cure SamN22

    Posted

    Hi,

    Sorry to hear you are so bad right now...most of us with this disease..have to get help from the dr. And lots of self help also..

    For my worst areas i use soothanol x2 in the morning and it helps cut the pain, as i can only tolerate a little med...its a topical which once applied cuts the pain dramatically in those areas...

    I cannot use it at night though cause it has msm which can keep me awake..so at night i use a topical called pain erase...these are not in place of meds, just to get more help...

    Corvalen m helps with energy...moist heat helps.

    When i get super tight and painful i get therapy at times..it does help...

    A lot of us have the sleep issue.. I personally use a sleep aid, but it took a while to find one that i could tolerate.

    Wishing you the best 

  • JulieBadger
    JulieBadger SamN22

    Posted

    Life will go on. A specialist said to me "congratulate yourself for what you have a achieved that day, not what you didn't".  I try not to group my pain times together. I get through the physical pain at that time and then move on to the next.  Sounds strange but helps me or I would look back and constantly be reminded that I can't get away from the pain.  Try to smile at something everyday. The pain appears diluted while you're smiling.  Big hug from a fellow Fibro and ME sufferer x
  • SamN22
    SamN22

    Posted

    Thank you to everyone for providing such kind support.  The sun did rise again this morning and I went to work as usual. The rheumatologist will be sending a letter to my GP. Any ideas what I can expect next? Do I have to get in touch with my GP or will I be contacted? Thanks again everyone. It's hard to convey how you feel when it's an invisible condition. I got told the other day it's called the shirkers disease and that upset me and made me question whether I was a hypochondriac. Then I thought about it and felt angry at such judgemental views. I work 50 hours plus in a very stressful job, commute long distances daily, and run a house... Such stereotypes make me angry. X
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