Just seen my consultant who says my previously diagnosed PMR- 18 months ago- is no longer and I have fibromyalgia. Can someone please explain how? My crp markers were up 18 moths ago but have been normal since starting on steroids.
I started on 20mgs of pred and currently on 9mg.
Thankyou
Well OF COURSE your markers are normal since you started on pred. If they weren't then you wouldn't be on enough pred to manage the inflammation and the markers would probably rise again (not necessarily, in some people they don't rise when on pred and so symptoms are ALWAYS trumps).
However - are you saying you have a return of symptoms?
Thank you - no return as such but have decreased slowly and this is my first full week on 9mg. Am having muscle burn pains in my arms and groin - but obviously not as bad as it was 18mths ago and no painkillers are helping.
Today was a routine check - complicated I think by my ongoing arthritic knee problem which is eased by anti inflammatory pain killers.
Was advised to stay on steroids but reduce to 8 mg by June when i'll be seen again.
NOOOOOOOO!!!! Go back to 10mg and see if the pains improve. If they do, it is PMR. PMR does not usually morph into fibro. Don't care what any rheumy says - you have reduced marginally too far and the inflammation is just mounting up again. The markers lag behind, sometimes a long way behind.
Hi jude62
On what basis has s/he made this conclusion? Is 9mg pred controlling your symptoms? Do you get relief from pain killers? It must feel really confusing. I have had fibromyalgia for over 15 years largely controlled by a combination of pain killers, amitryptiline, stretches and CBT. None of that helped at all when I got the "new" pain dx as PMR. That was controlled by the pred (in the main). The pred does not help the fibro pain. Hence...on what basis is it being diagnosed?
Thank you - No idea where this diagnosis came from. I was feeling a bit down due to my ongoing arthritic knee problem which is eased by anti inflammatory pain killers.
But the muscle burning and pain I have got from decreasing my steroids isn't touched by painkillers.
Was advised to stay on steroids but reduce to 8 mg by June when i'll be seen again
Jude
“but the muscle burning and pain I have got from decreasing my steroids isn’t touched by painkillers.”
It sounds as though you have got your answer, firstly with the symptoms having got worse since you decreased the steroid dose, and secondly the fact that painkillers don’t help. A small increase back up is more than likely to confirm that PMR inflammation is still lurking. Good luck and do come back and let us know how you get on.
Oh dear, poor you, as if having PMR wasn't complicated enough. Don't you just love these medics who tell you you don't have what they have been treating you for the last 18 months, fail to explain the reason, leaving you without an explanation and having to seek one for yourself.
On what basis, has he decided this? As PMRpro has said markers will be normal, or should be, whilst on the right dose of Prednisolone.
Has he advised you to come off steroids and prescribed either analgesic painkillers or antidepressants - the latter being the treatment for Fibromyalgia? If he is right and you do have the latter and have symptoms of pain in different areas of your body that hurt to the touch, then perhaps trying a few days on painkillers might give you an answer, as simple painkillers do not work for 'just' PMR. Having said that, it is possible to have both PMR and Fibromyalgia at the same time, but I do hope that isn't the case for you. If you can let us have more information with regard to symptoms and dosage, perhaps we can help further.
Thank you - no return as such but have decreased slowly and this is my first full week on 9mg. I'm having muscle burn pains in my arms and groin - but obviously not as bad as it was 18mths ago and no painkillers are helping.
Today was a routine check - complicated I think by my ongoing arthritic knee problem which is eased by anti inflammatory pain killers.
Was advised to stay on steroids but reduce to 8 mg by June when I'll be seen again.
Hi Jude62, something very odd with the latest diagnosis. The others here have said what I am thinking, so no need to repeat it. You will have to dig deeper. Please let us know how you get on.
I have a similar situation - RA for ten years, GCA for about six, and recently what my GP and myself believe is fibromyalgia but rheumy thinks is PMR.....all I know us that my current 7mg of steroids doesn't touch the pain, and I get some relief from pregabelin. Will look forward to your posts if you get if sorted out!
But does a higher dose of pred help - you can't tell with 7mg, but a few days of a much higher dose does provide an answer to the fibro/PMR question. Fibro doesn't respond at all to pred.
I've taken 10mg during the recent flares, which last much longer than my RA flares, but it doesn't seem to have helped at all. The only thing that does is a 30mg dose of morphine, which I have left over from my hip replacements!
Then it probably ISN'T PMR as that doesn't usually respond even to opiods. I was under the impression that opiods don't do much for fibro either.
I wouldn't say it drove everything away but it enabled me to get through three hours of entertaining a couple of friends to tea, which I certainly couldn't have done without it. I saw a different rheumatologist yesterday who seemed fairly certain it was fibro. I still don't understand why I have such a painful back of the neck. The rheumy now wants to put me on a different biologic, not Actemra, called Sarilumab, which he says has taken over actemra in good results. We shall see.
Confusing? There is no test for Fibromyalgia other than to eliminate all other auto-immune diseases.
Fibromyalgia is one of the greatest mimicked of all auto-immune diseases.
Fibro is diagnosed via pressure points over your body. Very specific points and you must have a minimum of eleven to by declared to have Fibromyalgia.
I would have bloods done again but would also have Rheumy check for pressure points.
Hope this helps you on your road to discover what you have? Lori-el
“Was advised to stay on steroids but reduce to 8 mg by June when i'll be seen again.”
....which is a bit contradictory if he’s CERTAIN it’s fibro? Maybe he’s hedging his bets? (I doubt it is fibro)
When I’ve seen a similar scenario on the forums before, the docs have detailed ridiculously fast steroid reductions to zero. So at least you have til June to get to 8mg (assuming you can get your flare under control) which should be achievable in 2-3 months....with luck.....and a fair wind 
Take courage, at least you still have your ally pred to hand 
Thankyou
Hello jude.. not sure but it could be both.. I have both PMR AND FIBRO. The PMR causes massive major joint pain(shoulders, hips, knees, ankles) only the steroids help with that pain.
I take low dose prednisone 7.5 to 10mg a day for the last 6 months and will probably be taking low dose for a long time..
I also have spine damage which causes severe pain constantly so I take 200 mg of morphine a day for that.. so it helps with the fibro pain.. The fibro meds I have had side effects with that I can't deal with. So I don't take any fibro meds.. just my morphine and steroids as well as muscle relaxers.. so be patient and get a rheumatology consolt.
The fibro causes muscle weakness and muscle pain and fatigue .. so you could have both.. The fibro can cause pain all over the body. PMR causes pain in just the major joints including the neck.
Pain meds help with the fibro and the steroids help with the joints..
Hope that helps some..
"PMR causes pain in just the major joints including the neck."
Most of us have very little joint pain - muscular pain and stiffness is common though. And when it goes with pred - it wasn't fibro pain.
Hi Tribalmask,
Sorry to hear you're in so much pain. You been hit with a triple whammy as I have.
I broke my back two years ago now and had to spend two weeks in one hospital and then four weeks in a rehab hospital.
I was already on a cocktail of opioids for Fibromyalgia as I had a very severe case of it. My GP and a pain clinic and myself made a guarded and informed decision to take these meds as my husband left me with four children to raise alone. Couldn't have timed it worse. So I started on these meds so I could be awake and on my feet for my children.
Anyway the doctor assigned to my rehab for my broken back came in to see me one day and said how would I like to come off of all the opioids and some other meds I was on and cause my kids were all older by then I said, Yes please!
I asked what will happen with the fibro after? He said he had had some success with a new med for fibro, if I wanted to give it a go, and not addictive hah!
I said you bet. So he started me while I was under withdrawal treatment to get it into my.system before all pain meds were out of my system.
I really didn't know what to expect. Well it worked. I have no fibro pain and no chronic fatigue from it either. It's called Lurica and is taken morning and evening, 75mg each time. If the dose is any lower it isn't effective.
Ask your GP to look into it. I also have been told that I have Lupus now too. Apparently it's not uncommon for a fibro patient to get Lupus down the road. I'm in Australia so I hope you can access this med where you are?
I'm lucky, not too many symptoms with Lupus yet. Fingers crossed for now. Loriel.
The muscle pain and fatigue isn't affected by the steroids. . Only the joint pain. I guess I didn't speak clearly enough.. sorry
My muscle pain was gone in 6 hours on 15mg pred and so was the muscle pain of many people I know with PMR.
The FATIGUE isn't necessarily improved by pred, no - as that is mostly a component of the underlying autoimmune disorder attacking the tissues of your body. It must be managed with pacing and lifestyle adaptations. Although the fatigue may improve at higher doses of pred if you happen to be one of the people it causes a more manic response!!
PMR. Fibromyalgia 
pmr- fibromyalgia 
PMR or Arthritis 
