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Make sure you have the right diagnosis!!

Posted , 5 users are following.

wendy147
wendy147

A year ago I started all my symptoms. My Dr. immediately thought I had Polymyalgia and put me on a course of Steroids. I took these for a week with no improvement. My symptoms started getting worse, and in August 2013 I was referred to a Rheumatologist. He gave a thorough examination and, via reaction on the Fribro. pressure points, he had no doubt in diagnosing Fibromyalgia. However the symptom continued and I tried various medication to no avail. Things got really bad in Feb/March this year when I could hardly get out of bed and was walking around like a Zombie! My Dr, who has been great during all of this, did another blood test and the inflammatory markers were very high i.e CRP was 67 & the ESR results were 47. He referred me back to the Rheumatologist. I saw a different person this time and she suggested trying Steroids again as she thought I had Polymyalgia although she said it was possible to have both Poly & Fibro together. Four days after starting the steroids I started to feel some improvement and by the time 10 days was up I was a different woman!! I am so relived that, so far, all my symptoms have disappeared and I have bags of energy and feel the 'fog' that I have been functioning in over the past year has lifted. PLEASE make sure that your diagnosis is correct and that you do not have the raised blood inflammatory markers that was making me feel so awful. My recent blood test shows a massive reduction in these. I sincerely hope that this info. may help some of you - good luck. Wendy

3 likes, 24 replies

24 Replies

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  • Xxxxxtttttttttt
    Xxxxxtttttttttt wendy147

    Posted

    i really don't believe I have the correct diagnosis but as nobody can give one it seems easier just to diagnose fibromyalgia. A lot of nursing staff over the years, and the stroke clinic consultant have been certain I have rheumatoid arthritis, but apparently the blood test says not, althouh I have read that the blood test is not allways conclusive. I have an auto immune disease but they just dont know what it is and say they can only treat the symptoms. The pain killers, however, just don't do a great deal. Oramorph will take the edge off for a while but I have been advised not to rely on this as it will stop working. The only thing that has ever really taken my pain away is gas and air and unfortunately thats not available. That has only been given when I have been in an ambulance
    • deb_43174
      deb_43174 Xxxxxtttttttttt

      Posted

      The pain meds just take the edge off and helps me sleep but doesn't really take the pain away.

      does the weather effect anyone? I know when a front comes inbefore the weather reports smile also stress?

       

    • Xxxxxtttttttttt
      Xxxxxtttttttttt deb_43174

      Posted

      yes I definitely am worse in cold weather. I just love the sun and have lots more energy when its sunny. Stress is definitely a major contributory factor for me. Once after a huge row with my ex, I couldnt put my foot on the ground the following morning.RA was suggested on that occasion
  • terig
    terig wendy147

    Posted

    hi wendy...i was afraid of steroids as i was told you gain weight on them...have you?
    • deb_43174
      deb_43174 terig

      Posted

      I went on steroids and I felt great! But only for a couple of weeks. It is not good to be on them for long periods of time. I now take Gabpentin and tramadol. Does help with certain pain. 

       

  • Rattler7
    Rattler7 wendy147

    Posted

    Hi Wendy thanks for the info , really interesting , I have fibro amongst other problems I went to the doctors a couple of months ago due to abdominal problems and severe back pain . To cut along story short ended up having bloods repeated 3 times as each time inflammatory markers up , high ESR andCRP. Low iron n few other bits n bobs. I've been referred to a rheumatologist my appointment is in 3 months . I have amitriptiline for night times it works for me , I was already on morphine and other meds. Since Jan / Feb I've been feeling more tired and more intense pain I have a very red sore rash on my arms it flares up and never really goes away I'm curious if the rash is connected , I feel something else may be going on but it's so hard to know . I have severe reactions to cold , snow , ice even cold sand or soil my hands are agony they seize and I warm them up in water fast as poss the pains are terrible and if my feet get cold it's awful , I have to get direct heat on them ASAP it can't just wrap them up they won't warm up naturally , I try to stay positive it's the only way to get through tough days , love to all , keep smiling through 😄😄😄😄
    • terig
      terig Rattler7

      Posted

      hi there....i 'd kill for morphine....they gave it to me once when i went to the emergency department but my family dr. has never perscribed it for me....i tried amytipalene with gabapentin...and a vegie diet...i felt alot better but couldn't keep it up. i went off the meds too. where do you live...i live up north, toronto, canada, we are finally letting go of the cold up here....i know how you feel good days and bad days..hope the summer gives us all better days !
    • Rattler7
      Rattler7 terig

      Posted

      Hi , I'm in north of England , I'm lucky have a fabulous doctor I really think it helps if your doctor is supportive and understanding . I long for warm summer days , we haven't had much of a winter so can't really complain , it's so much better in warm weather isn't it  x 
    • Xxxxxtttttttttt
      Xxxxxtttttttttt Rattler7

      Posted

      i am near Chester and we are supposed to have some nice warm weather soon! Here's hoping! I may not need any oramorph if its warm enough-sun definitely helps me!
    • Xxxxxtttttttttt
      Xxxxxtttttttttt Rattler7

      Posted

      my feet are really suffering lately too with coldness. This is actually very new to me. I am usually too hot but even if I am hot I have to keep my feet covered now. I have had a lot of abdo pains too but I have put these down to fibroids in my uterus so I am having a hysterectomy soon, I hope thats what is causing them anyway. Also beeen anaemic for last few years so on iron tabs, also low vitamin D caused lots of mouth ulcers so on calceous Vit D tablets too. Blimey good thing I don't walk much I would be rattling! Lol
    • deb_43174
      deb_43174 Rattler7

      Posted

      I am in New England. It has been cold damp an lots of snow. Spring is finally here though...temps today 75 and sunny. I won't be as achy. 

      I have a very good doctor but she is not a specialist on fybromyalgia. After talking with all of you I think I am going down to Boston to get a second opinion. I am really tired of being achy and fatigued.

       

    • terig
      terig deb_43174

      Posted

      hello deb...we used to live in Leominster,MA...loved it, Boston and driving up the coast of Maine....we lived there for 6 and half years! the drs. at UMASS are terrific...we had good medical care but this was in the '90's'

      now living in Toronto,Canada, we have socialized medical care, but it takes a long time to see a speicalist....what i do to get in faster is put myself on the drs. cancellation list...so if any one cancels your appointment can get moved up ! good luck.

    • Rattler7
      Rattler7 Xxxxxtttttttttt

      Posted

      Hi Everyone , I can relate to you all I spend many days stuck in bed usually after iv had days where iv felt well enough to do a few things or walk a little further I push myself to keep going then have to suffer the consequences for days after . It's so tiring I'd love a day without pain it's everywhere , but if I give in to it I fear I will give up . Iv recently had mouth ulcers too along with the rashes it al seems connected to when I'm feeling particularly ill , it's a wonderful support having you all to chat to on here x
    • Xxxxxtttttttttt
      Xxxxxtttttttttt Rattler7

      Posted

      ask for a vitamin D check. i had 15 mouth ulcers all at once one time, blood test shows low vit D so I take calceous now which has stopped that. Have you had a lupus test as rashes can also be a sign of lupus. I don't get rashes . Today my feet have been like blocks of ice all day! I wake up sweating all through the night then as soon as I get outof bed I am shivering. I am the same-try to do a bit, go out and then suffer for days afterwards. But the way I look at it I will suffer anyway so make the most of it on the reasonably god days! X
    • Rattler7
      Rattler7 Xxxxxtttttttttt

      Posted

      Hi Shaz , I think that's the best way to look at it I've been in severe pain every day for most of last 20 years since mid 20s , people say if it hurts stop but it hurts anyway,  as you say . I just had lots of bloods done , I'm unsure whether I have had Vit D checked is it something a doc would normally check with Fibro etc ?? I mentioned Lupus to my Doc as my face is rashly often but he seemed to think it would be a permanent marked face , I'm unsure . The cold feet , well I can be very warm as I am now but my feet will get freezing cold very fast and it hurts a lot so I feel for you x
    • Xxxxxtttttttttt
      Xxxxxtttttttttt Rattler7

      Posted

      i amnot sure myself whether they check vit D as a matter of course. He checked mine cos of loads of mouth ulcers x
    • terig
      terig Rattler7

      Posted

      hello rattler...your days sound exactly like mine ! i tried to make a daily mantra of 'do and smile' but it just doesn't work...when almost every day is a bad day...thats how i define my life now...good days and bad days...i am glad i am not alone...nice to talk with you....i think i am going to find a support group that i can attend .
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