Just been diagnosed with Fibromyalgia besides havingPMR

1st- I have had PMR for one year and three months. Am just now down to14 mgs after starting at 20 mgs 15 months ago. Many ups and downs of prednisone doses. Once up to 40 mgs.

2nd- She felt if i only had PMR, my pain and stiffness should have been better controlled. She thought I must have other things going on in my body too. My GP also has felt I have something in addition to PMR but didn't know what. The rheumatologist tested all the tender points in my body for fibromyalgia and I had them all. I also have severe osteoarthritis in my spine. It is just so hard to figure what pain is attributed to what disease. Thanks for toe response.

Sorry my mistake on time line. As i said in other forums it's going to take me 2.4yrs if all goes well to get to 10 mg from 17mg. So we all reduce at different doses but it should be slow.

As for everything else i know other people on this site who have both will be along to help.

Hang in there.

Thanks so much! I know all of us have ongoing PMR pain and stiffness, too. Just hard to figure it all out.

Hi Linda, Sorry you are having so many problems. I have had PMR for about 18 months. I also have Fibromyalgia and osteoarthritis in knees (both replaced) and hips (one replaced, so far). 

The way I can tell which is Fibro and which is PMR is, the pain from PMR is always bilateral (on both sides of my body).  I have had Fibro for more than 20 years, so that helps also. When I first started with PMR, I thought it was old Fibro, but the pains were more intense and on both sides of my body. 

I have had trouble with the Rheumies telling me my PMR was over, and what I was feeling was Fibromyalgia. I have found that some of the Rhuemies want you to reduce like a textbook case. 1mg a month after you get to 10mg, like clockwork. I wish they could feel PMR, that might change their attitude.

Best of Luck. You are not alone in this.

Hello,Judy,

Thank you for your response to my post. It helps to know how others handle both and how to differentiate the various pains. Yes, the rheumatologist I saw once so far, already said she thinks my PMR is well manage by prednisone. But you are correct, the docs don't live in our bodies.

have a wonderful day and thanks again! Linda

Many of the docs. sure don't live in our bodies. .I'm a psychotherapist & I compare PMR & Fibromylgia as the physical Bi-polar disorder to emotional Bi-polar disorders. I have up days & many more down days, but it's still so back & forth, especially with the constant playing around of the prednisone dosage.

Thank you so much! That is a great analogy and applies to me too! Thank you!🌞

Thanks for the information.  This is all very confounding!

Do you mean polymyositis? That is relatively easy to rule in or out for the majority of patients. It results in raised muscle enzyme levesl in the blood, particularly creatine kinase (which can also happen when you take statins)though there are others and the electromyograph is changed. The final cherry is the antibodies. It is relatively rare but I do know one lady in the north of England who developed it - but while she had common symptoms with PMR it was really quite different.

However - it doesn't really make much difference. Guess what the management is ...

Thanks Paul, I wonder too what's really going on with my PMR, lower dosage prednisone just don't seem to be working. I have terrible weakness, lack of energy, fatigue, along with the pain & stiffness. Are many of us diagnosed with the PMR label, put on prednisone, but have other things going on ?

In general there is a signal in your response to a MODERATE dose of pred. It isn't perfect but ONLY PMR has the typical dramatic response that I - and a lot of others will describe - that makes something like 70% global difference in a day or two, sometimes only hours. If the response is much slower or only slight then it really does have to be considered whether something else is going on

Rats - didn't mean to stop there!

The fatigue and lack of energy probably WON'T improve with the pred - and certainly not quickly, other than the relief of pain making a difference. But then when you do too much because of that you know about it afterwards, even if you didn't at the time.

But using a higher than required dose at the start can mask the response -it gives you extra energy and will deal with some things that aren't PMR. So if there is a really good response to 15mg it is possibly fair enough to think this is PMR. There may be a moderately good response quickly but not global - then you MIGHT need a bit more, especially if you are big (height or weight). Having achieved that response - maybe you might do better with a few weeks of a higher dose to really hit the inflammation on the head but then you should be able to reduce at least some. But when people struggle with reductions right from the start then I think it is fair to have a really good look around - but do they do it? Do they what!!!!!