Started with PMR now fibromyalgia

[cardboardcutout]

I was diagnosed with PMR about three and a half years ago and had been off steroids for over 1 year but still in a lot of pain ( despite having full range of movement). My rheumatology appointments with the NHS kept getting cancelled due to demand so I decided to see another Rheumatologist privately as the pain was affecting my quality of life ( or lack of it). I have now been diagnosed as having fibromyalgia. Has anyone else had this happen to them?

[SheffieldJane]

Yes, by my first Rheumatologist. I felt unconvinced as if he just used the diagnosis to sweep up all the symptoms that didn’t quite fit PMR. I went to a second Rheumatologist who is prominent in the field of PMR and GCA. Fibromyalgia has never been mentioned again. Unfortunately the conditions can co- exist but I understand that there are particular pain points for Fibromyalgia, allowing for a more accurate diagnosis, these days.

I have had PMR for a little longer than you and am on 4 mgs - without it, I would be in a lot of pain and stiffness.

I think Poopadoop has both. She maybe able to help if she’s around.

[Yellowbluebell in reply to SheffieldJane]

Poops is having a few days chilling out away from the madhouse of the forum but i will pm her to have a look at this and ask her to reply if possiblex

[cardboardcutout in reply to Yellowbluebell]

Thank you there is no rush much appreciate all of the feedback

[PMRpro Ambassador]

Did you have raised blood markers originally? And now?

[cardboardcutout in reply to PMRpro]

Originally yes although never really high. Now not.

[PMRpro Ambassador in reply to cardboardcutout]

Did he try a short course of pred to rule out a return of PMR? Before I worked out what I had and pred confirmed it with a miraculous result in under 6 hours, it was very difficult to decide whether it fitted PMR or fibro. I had the trigger points of fibro, amongst other things, but they were due to myofascial pain syndrome. The blood markers can lag a long way behind in some people.

[cardboardcutout in reply to PMRpro]

No he didnt want to as he felt sure that was the diagnosis. I have a nhs appointment with my first rheumatologist in February so i will ask more then. In the meantime i have been advised to make lifestyle changes : exercise in moderation, eat well and get a good nights sleep..

....i was trying to do this anyway,so now i am researching Fibro

[PMRpro Ambassador in reply to cardboardcutout]

He may think he is sure - but if it were me I would ask if I could try a week of pred at 15-20mg - if it doesn't help at all it very likely could be fibro or something else besides PMR. The trouble is, once you get a fibro label they can't see past it and try to blame everything on it. And a week of pred won't do any damage at all.

[cardboardcutout in reply to PMRpro]

We did discuss this but his feeling was the steroids would work on anything 'his words were - if I took steroids I would feel better' so his assumption is that it will work for fibro too - is this definitely not the case. I do have some steroids and could try it myself as I not due to see him again ... I don't think I have fibro as I don't generally have trouble sleeping or any knee problems. It is all neck , head and shoulders plus lower back, elbows can be tender sometimes but not always.

This is a confusing business ...

[PMRpro Ambassador in reply to cardboardcutout]

Definitely NOT the case - fibro is not inflammatory, PMR is. If it worked for fibro they would use it, for flares if nothing else, because it is next to impossible to improve fibro.

I wish I knew why they think that pred makes everything feel better - it doesn't work for everything! I think a lot of patients given pred get the impression they feel better because their appetite improves and they have less pain if there is any inflammation going on. But it doesn't make EVERYTHING better!

[Hidden in reply to cardboardcutout]

Hi cardbco, I have both pmr and fibro. I take tramadol and was on prescription strength cocodamol and it never touched pmr pain I was having. The new pmr pain was reduced on first day of pred. I was lucky that I think my gp must have another patient or had read up on pmr so prescribed pred.

I presume you have tried strong painkillers like nurofen plus or cocodamol over the counter? You can do that to be proactive but have to do a week to test that too. You do have to build it up enough to convince the the brain to control the pain signals.

Pmr as you know does not respond to pain killers at all. If you have time to try this or have been doing with prescribed painkillers fine. In the end you may need a referral to pain clinic to help that diagnosis. Good luck.

[PMRpro Ambassador in reply to Hidden]

pred? PMR surely?

[Hidden in reply to PMRpro]

🤣🤣🤣 My phone has its own ideas.

[PMRpro Ambassador in reply to Hidden]

Dr iphone ...

[Hidden in reply to PMRpro]

Dr huawei which may explain the faults from update.

[PMRpro Ambassador in reply to Hidden]

Ah so ...

[cardboardcutout in reply to Hidden]

Thank you both for your help I will give this all some thoughts and decide what to do

[Hidden in reply to cardboardcutout]

My pain areas similar for fibro. You don't need to have all the tender points for dx.

[PMRpro Ambassador in reply to Hidden]

You are supposed to have a minimum number though - and that was where my trigger points differed from fibro. I had quite a few but not quite enough.

[Hidden in reply to PMRpro]

Is it still 12?

[PMRpro Ambassador in reply to Hidden]

I thought it was 11 out of 15 ... Must check.

Wrong - 11 was right, out of a total of 18, but that is old guidelines

mayoclinic.org/diseases-con...

Reading that, darned if I can see how they can refuse to try pred in any suspected fibro case - to eliminate confusion with PMR ...

[Hidden in reply to PMRpro]

It would make sense.