Pain in shoulder joints and on top

[tiasbear]

I've had PMR 2 1/2 years now and just tapered to 0mg Medrol, mostly out of fear of what steroids will do, as it's already caused osteoporosis. I still have pain but it's not as bad as when this all began. I do have pain in my shoulder joints and on top of shoulders pretty bad, as well as pain all over my body. But anyway, I wonder if anyone else has these pains in shoulder joints? I don't know it it's still PMR still hanging on, steroid pains, or have my muscles and bones deteriorated from lack of use? I do hear crunching when I roll my shoulders. Any thoughts would be greatly appreciated....

Thank you....

[tootired424]

hi i am in the process of being diagnosed with pmr if you read my recent post too tired424 you will see i have not been on steriods but i get the shoulder pain and feel like i have lost the hydraulics or power in my upper arms and knees.I find having a really hot shower in the morning across your shoulders and nape of neck enables me a window to get dresses not too bad for the rest of day but i dont look forward to getting undressed at night usually ends in tears removing clothes from arms and shoulders .awaiting further appt.

[PMRpro Ambassador]

If the cause of the PMR is still active then with no steroids you will have pain. And all the things you say could apply.

However - it might be worth considering it being a more mechanical problem due to tight back muscles. Something called myofascial pain syndrome can mimic PMR symptoms but can be dealt with in other ways. A good physio might be able to help and a lot of us have found Bowen therapy useful.

[tiasbear in reply to PMRpro]

Thank you PMR pro. Since the pain is widespread (all over) too, I started wondering if it could be fibromyalgia. Can a person start with PMR and then it morph into fibromyalgia? Would steroids take away fibromyalgia like it did with PMR? I'm sorry for all the questions, but I'm left to try and self-diagnose. My Rheumy was thrilled that I'm off the steroids but he doesn't seem to hear me when I say "I'm still in pain!" He just says that I should try and think of myself as not being sick.

[PMRpro Ambassador in reply to tiasbear]

Pred does nothing for fibromyalgia pain. No, PMR isn't going to "morph into fibro", they are totally different things, but it is possible to have both - there are people on the forums who have both and can identify the differences.

You probably need a different rheumy - you can't just take pred and reduce it to zero and say "I'm cured". If the underlying cause of the PMR is still active you will have pain - and you need a small dose of pred to manage that until the autoimmune part of PMR goes into remission. It usually does sooner or later but not always and it can last for years.

But you say you wished to stop the pred because of the side effects - so I don't quite understand. If you still have PMR and the pain returned as you reduced the dose you should have stopped reducing - that is the way it all works. Either you take pred, enough to manage the symptoms, or you don't.