I have had the awaited rheumy appt. It took me completely by surprise. I went wanting support coming off pred, and information on possible consequences. Balanced of course with the benefits to my diabetes, bi-polar and weight.
I got the support to come off pred......because he was sure I have fibromyalgia not PMR!
I have to say that I cannot understand why these diagnoses with such serious treatments are not made by the 'experts' in the first place. I could rant for a while but the result is as I wanted, off pred and adcal. Back to control of the other conditions.
So I guess this is goodbye. You've been a great support. I hope the fibromyalgia support is as good.
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hya2cynth
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Hi yes it was a miracle in hours! Lasted about 3 weeks then slowly waned. Went 15 to 12.5 then back to 15 then down 1 every 3 wks, now at 9. Almost as bad as ever now but am prepared to endure!
I think that means it isn't "just" fibro, or not even fibro. There would have been no response to any pred with fibro. I do hope they can find something to help your pain - there isn't much for fibro so another dx would be good really.
Well I kinda agree. I'm coming off the steroids and then reassessing. There may be more and different professional opinions in the future. Just need to wait and see.
Hi - may I ask what tests you had which determined a diagnosis of fibromyalgia? I have had RA and GCA for years and after a period of severe pain and fatigue which did not respond to increased pred, my GP did the "pressure point" test, which gave me 14 out of 18 positive. She says I have fibromyalgia. However, I saw my rheumy on Monday and she did the same test with the same result, but she thinks I may have PMR! Personally I think I got all the fibro symptoms, but I'm confused by their confusion! Any comments welcome.
Well Ive not had the pressure point test. He just said I was 'very tender in many places'. The blood tests for PMR were slightly raised but 'insignificantly' so. I responded really well very quickly to the initial pred dose. The rheumy said most aches and pains would respond well to a dose of steroids.
So I am not imbued with confidence over the professional opinions. But I am confident I have some kind of condition that is causing a bunch of problems as opposed to it being my fault, age, weight, diabetic, bipolar etc. So that will suffice just now.
Oh and there is fibromyalgia in my family so maybe that influenced him too. Tho I just see differences between them and me, not similarities.
Fibro is NOT an inflammatory disorder - it is a disorder of pain PERCEPTION so it would not cause even only slightly raised inflammaotry markers and "most aches and pains would respond well to a dose of steroids" is absolute tripe.
What I do agree with is your opinion of the professional opinions!!!
Hi PMRpro - you can see my previous post ahead of yours..can I ask if you know of studies or reports describing the problem with pain perception? I'd be interested to find out more.
Very best of luck to you. I had been told previously I had fibromyalgia - then when I got PMR - the steroids completely took away all the pain - so then what was it?? If Fibro is not meant to respond to steroids? I do notice as the pred is reduced - the pains come back in the legs and feet. These severe leg pains also responded to steroid injections in my neck when I used to get them done. All very strange and frustrating. I wish you the very best.
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So, how am I supposed to feel?
Time to reduce... I think?
Club Zero - I think...
Severe intercostal muscle ( I think )pain 
And so, conventional wisdom may not be wisdom after all...
