So I think this may be farewell......

[hya2cynth]

Hello folks.

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.

[DorsetLady PMRGCAuk volunteer]

Hi hya2cynth,

Sorry to see you go...but pleased you have got a diagnosis. Enjoy your new friends!

[Hidden]

Wow! Best of luck!

[PMRpro Ambassador]

Can't remember - did the pred help at all?

But all the best whatever it is!

[hya2cynth in reply to PMRpro]

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!

[PMRpro Ambassador in reply to hya2cynth]

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.

[hya2cynth in reply to PMRpro]

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.

[PMRpro Ambassador in reply to hya2cynth]

Good - and all the best.

[Hidden]

Hi there,

Sounds like a positive since you wanted off the pred. Wishing you all the best!

[Insight329]

Best wishes to you. May your journey from here on be easier.

[venezia1]

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.

[hya2cynth in reply to venezia1]

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.

[PMRpro Ambassador in reply to hya2cynth]

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!!!

[venezia1 in reply to PMRpro]

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.

[PMRpro Ambassador in reply to venezia1]

mayoclinic.org/diseases-con...

may help. I haven't time just now to look for more, it will mean working out the best words to find actual papers.

[hya2cynth in reply to PMRpro]

Thanks I'll check that out.

[venezia1 in reply to PMRpro]

Thanks, PMRpro. That's a clear description.

[powerwalk]

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.