Is it Fibromyalgia ? or maybe not.

welsh_lady
welsh_lady Member Posts: 17
edited 1. Aug 2009, 17:40 in Living with Arthritis archive
Don’t know if this will be removed, but we think that it is important to pass this on.

WE think, (that is me and my husband) that they might be using this word to put people off from knowing the truth.

I was told I had spondylities, OA.
when we pushed for better treatment we was told it was Fibromyalgia and that I would have to live with the pain.

So think when they tell you this.

is it your bones that hurt or the mussels.

To try it out, ask for a steroid injection, if that takes the pain away, it cant be Fibromyalgia, because the injection would not work.

That is what our 2nd Rhumey Dr told us.

Now been told that I have UNDIFFERENTIATED SPONDYLOARTHROPATHY
Which Some doctors consider USpA a "cousin" to ankylosing spondylitis, psoriatic arthritis, spondylitis associated with inflammatory bowel/Crohn's disease, and reactive arthritis,

SO DON’T GET PUSHED ABOUT WITH FIBROMYALGIA, if in doubt get a 2nd option

Comments

  • debatat
    debatat Member Posts: 659
    edited 30. Nov -1, 00:00
    Hi, I googled spondlyarthorapathy (sp?) and it said on one website that fibromyalgia is common to be diagnosed with first as it takes time for symptoms to emerge and enough symptoms to make a clinical diagnosis of spondloarthopathy. You have to have the changes on x ray which take time, sometimes years. I am glad you finally have a diagnosis and some treatment. I hope it works for you.

    DEb
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Thanks for that tip, welshlady, always good to store information away like that.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, It can be difficult to know exactly what docs mean, they use different words for the same thing and its all very confusing! Sue
  • magenta
    magenta Member Posts: 1,604
    edited 30. Nov -1, 00:00
    Hello,
    I was told that I 'probably' had fibro at my last rhuemy appointment but I did get the impression they had just wanted to tell me something to get me out the door. I go back in September but they're wanting to discharge me after that! My bloods are always neg and my xrays are normal. I get swollen joints but they're never swollen when I'm at the hospital-typical! I'm exhausted with it all. Thanks for the info,
    Magenta
  • debatat
    debatat Member Posts: 659
    edited 30. Nov -1, 00:00
    Hi Magenta, have you tried taking photos of your joints when they are swollen and taking them to your rheumy appt? I did this and it helped to give a clearer picture of what was happening between appts.

    Deb
  • magenta
    magenta Member Posts: 1,604
    edited 30. Nov -1, 00:00
    debatat wrote:
    Hi Magenta, have you tried taking photos of your joints when they are swollen and taking them to your rheumy appt? I did this and it helped to give a clearer picture of what was happening between appts.

    Deb
    Hi Deb,
    Never thought of that. I'll give it a go although (thankfully) my joints have been ok recently.
    Thanks,
    Magenta

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