PMR and Fibromyalgia
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I have been diagnosed with PMR and Fibromyalgia. It is hard to differentiate what pain and stiffness is which. Anyone else diagnosed with both? I am always extremely fatigued, stiff, painful and unable to do very much I used to. I try to walk, ride my fat tire bike, and do some chores. I have a tremendous problem with doing much house work. Once in a while I have a”good” day. Usually nap once or twice a day. I am on 8 mg prednisone. I have been diagnosed with PMR for 3 years and fibromyalgia for 1.5 years. Coping is hard. Any comments are so welcomed! Thanks, Linda
1 like, 12 replies
Sadiebelle linda82701_USA
Posted
lilian05079 linda82701_USA
Posted
Are you saying you still have pain and stiffness even though on 8mg pred?..the pain and stiffness is usually managed at 8mg. Perhaps you need to higher the dose of pred. If the pain is not managed at a higher dose then maybe you do not have PMR and do have FM..discuss with your doc first before raising the dose..my best wishes to you linda82701 USA...
EileenH linda82701_USA
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Flutterbie57 linda82701_USA
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I have been diagnosed with both, but I had Fibromyalgia for approx 18 years before I was diagnosed with PMR, so I was very familiar with Fibro pain before PMR pain attacked.
The pain never changed much over that 18 year period. I could manage the pain of Fibro to some extent by pacing myself physically. Mentally it drives me mad, so I always boom and bust.
?PMR pain was something different again when it struck - much more severe and only in two areas - neck and hip area. It was extremely painful to turn over in bed, and move these two areas.
?I have had PMR for over 2 years and I do have trouble working out which problem is bothering me. There are a couple of signs I do use, but of course I never know whether I am right or not. If the Fibro points in my knees and my forehead are very painful, then I blame Fibro. If I get pain in my shoulders/neck area and/or hip area, and it is more a burning pain, then I blame PMR. Lately I have felt like I have been badly sunburnt across neck and shoulders.
?When I change Pred dose nowadays, I try to rest, relax and not overdo anything physically for over a week after, so I do not upset my Fibro too much. In theory, (mine), if the Fibro is reasonably settled then any changes in pain will be because of Pred or PMR.
?With both these problems and ongoing pain, I have to keep my mind busy so I don't have time to think about myself too much. I do things I love to do (gardening) which does upset my pain, but it is worth it mentally for me.
?Like you, I have physical problems with housework !!!!
? It gets harder every year to suffer because of the vacuum cleaning or trying to cut up pumpkin.
?I know you will find ways to cope. It takes time and you have to change your mindset, and find other things you love to do. I like the sound of your fat tire bike.
Take care Linda
linda82701_USA Flutterbie57
Posted
Fondly, Linda
Rudivl linda82701_USA
Posted
I am sorry to hear what you have been going through. I was diagnosed with PMR 3 years ago (currently fighting to get below 16mg of pred and still pain in hips and shoulders daily). Because of pain levels, my rheumatologist thinks that I also have fibromyalgia but I am fighting that diagnosis! If I do, I am not atypical because I do not have multiple areas of pain, I have always slept well and I generally do not suffer from extreme fatigue. I do have tender points where they should be but I also have other tender areas, like running all the way down the insides of my inner thighs.
My rheumatologist would like to get me off the Pred re bone density issues and because I seem to be needing a high dose at the moment to balance inflammation pain, it seems easier to put everything down to fibromyalgia and question the PMR diagnosis. It is very difficult to figure out what is PMR and what might be something else. Like you say, coping is hard and keeping mentally on top of it all!
I wish you well! RD
EileenH Rudivl
Posted
Has anyone investigated hip and shoulder bursitis? Oral pred sometimes doesn't do a good job of sorting that.
Has it occurred to your rheumy that, if a dexascan shows you do have bone density issues (and it isn't a foregone conclusion, my bone density barely shifted in 7 years on pred), then there are other ways of dealing with it? Not being on pred and being immobile because of pain is a major risk factor in itself.
And basically - if it goes away with pred, it isn't fibromyalgia. It might be something else besides PMR - but it isn't fibro!
linda82701_USA Rudivl
Posted
Dear Rudivl,
Yes, it is hard to figure all this out. Having been on prednisone for 3 years, my rheumatologist wanted to put me on meds for bone density. I insisted on a bone density test and it was normal. I had all the pain points when the rheumatologist tested them, but I have more tender points than those. It seems many places on my body are sore to touch. I wonder if that goes along with PMR too. I have had stiffness and pain in my butt muscles and down my quadriceps . Sometimes I do not take higher prednisone when I think I am having a flare. Sometimes a flare seems to come out of the blue. I have had an MRI to check for MS. It was negative. Memory and cognitive issues are hard.
I thank you for your response,
Linda🍁🍂🍁
EileenH linda82701_USA
Posted
I have areas that are tender to touch - but I absolutely don't have fibro! Before diagnosis I had about 7 trigger points in the fibro list - that isn't enough to be assigned to fibro - but they overlapped with MPS.
The most painful areas to toucn otherwise were around my achilles tendon and shins and I have heard a lot of people say much the same. Shaking hands was also excruciating - no long since pred.
linda82701_USA EileenH
Posted
how are you certain you don’t have fibromyalgia? I always wonder what is going on with me regardless of what the docs have said. When I first began prednisone, I felt I had my life back, but my doc reduced me from 20 mg to 17.5 after two weeks at 20 and I had a flare. The last time I had a flare was after we moved, I could barely walk from pain and stiffness. My rheumatologist had me go from 5 mg to 10 and within hours I was so much better. My rheumatologist thinks my PMR is controlled, I wonder. She’s the one who diagnosed fibromyalgia. My GP didn’t think I had fibromyalgia prior to that. I never really feel well. Very confusing.
Best to you, Linda
EileenH linda82701_USA
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How do I know I don't have fibro? All the pain went on pred and it has remained that way. That wouldn't happen if I had fibro which doesn't respond to pred as it isn't inflammatory.
heather60195 linda82701_USA
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I was diagnosed with fybromyagia in 1995 and diagnosed with PMR earlier this year. I also have wide spread arthritis. I take 15 mg 0f prednisone per day a look so 900 mg gabapentin in the morning 600mg at lunch and another 900 mg at night. they are very hard diseases to deal with. I am lucky I have a very understanding husband. I'm not able to do much around the house he does everything except laundry which I try to keep up with. in the last year I have had 2 spine surgeries a second knee replacement within 6 years. I was diagnosed with PTSD not long ago have sever depression. but I still try to live the best life I can while in constant state if pain and severe anxiety. but we have to be strong. thank goodness for naps cause sleep at night comes and goes