Just been diagnosed with Fibromyalgia besides havingPMR
Posted , 13 users are following.
My GP diagnosed me with PMR January, 2015 and started me on 20 mg of prednisone. Have had an up and down journey with prednisone , pain and stiffness. Last week I saw a rheumatologist for the first time. She diagnosed me with fibromyalgia as well as PMR, because of my ongoing pain and stiffness. I am very confused. I thought my pain and stiffness was due to repeated use of my arms. She thinks my PMR is well controlled by the prednisone and my problems are due to fibromyalgia . My pain and stiffness is in the areas associated with PMR. So confusing! Any thoughts would be welcome. Am on 14 mg prednisone and dropping by 1 mg a month to get to 10 mgs. Anyone else have both? How do you know which is which? How do you dope? Thanks...Linda😜
0 likes, 104 replies
EileenH linda82701_USA
Posted
When I started researching what I might have after 5 years of loud rumbling and finally a major flare, fibro and PMR were the two things that fitted best - PMR perfectly apart from ESR/CRP being raised and fibro pretty well but not with quite enough trigger points. The answer came with pred - 100% relief of the muscle stuff in a few days, 70% of it in 6 hours. I do have another mimic alongside the PMR: myofascial pain syndrome, and in fact that was what gave me most of the trigger points I could identify for fibro. It also always kicks off as the first sign of a flare.
There are a few people on the forums with both - and they say there is a difference between the fibro and the PMR pain. The most obvious difference is that pred relieves PMR, it doesn't touch the fibro. At higher doses the pred also helps the myofascial pain syndrome - which particularly affects my lower back and shoulders and when it affects my shoulders it also affects my upper arms. When it flares up again as the dose drops I try to manage it with Bowen therapy and massage - it forms trigger points of spasmed muscle fibres in the muscles too and they need to be ironed out. A sports massage or physiotherapist who knows what they are doing is invaluable.
I'm very impressed by your rheumy though - to accept that we can have more than one problem that have commonalities is very progressive and should lead to you getting some very good management!
linda17563 EileenH
Posted
I am waiting to see Rheumy, but know I will get a lecture on taking MTHX.....my doctor agrees with me though, that nearly all her patients with Fibro....struggle to take medication without suffering dreadful side affects....well, if we`re sensitive to light/noise/smell it makes sense....how can we cope with chemicals!....but somehow we plod on.....
My readings were 10....which she was pleased with.....(I am on 10.5mg pred) I dare not drop below for a long while as yet, I am prone to flares beyond 10mg, and cannot cope with any more pain!
As I have often said on here it`s a minefield, when we have several things going on at once!
EileenH linda17563
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It was the pain specialist who did the most - steroid injections into the trigger points area and manual mobilisation of them but the physio and massage worked on the trigger points too. Bowen helped that as well - much less physical so easier to bear. You have to have a physio that "gets" it.
Does anyone know why fibro makes people so sensitive to drugs? Isn't ME the same?
linda17563 EileenH
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You are right, I need a physio that gets it....but how do you go about finding them, unless you know someone with same problems! It won`t be for the lack of trying....
EileenH linda17563
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linda82701_USA linda17563
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Flutterbie57 linda17563
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"massage" your own muscles.
I am having trouble getting below 10mg too. I didn't realise Fibro people were exta sensitive as well. I read screeds on the subject many years ago, but they didn't know much then.
linda17563 Flutterbie57
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Flutterbie57 linda17563
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linda17563 Flutterbie57
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maid_mariane linda17563
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You mention your sensitive to light, noise and smells. I have noticed since PMR that noise even radio is very bothersome and too much company. As for light i have always been sensitive a bit more now and constantly wear sunglasses. Are you saying this is also pmr?
Mariane
linda17563 maid_mariane
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My friends don`t put any on when they visit me. People do laugh at me though, because I`m like a sniffer dog....very heightened smell!... I have to be careful if I`m lucky enough to be able to go out...many places are so noisy...it seems to be the "in" thing to have airhanger type ceilings....which are so echoey!! give me a little teashop any day! I must stop moaning....
maid_mariane linda17563
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The other night i drove wirh my sunglasses at night and it was great but as i say my eyes are light sensitive.
No moaning taken just another fact like my waves of exhaustion that hit. I actually had my eyes closed at my grandsons confirmation ladt night, i could barley stay awake but it passed then hit again. It's life our new way now.
linda17563 maid_mariane
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maid_mariane linda17563
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We all need to pace.
linda17563 maid_mariane
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Anhaga maid_mariane
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maid_mariane Anhaga
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Anhaga maid_mariane
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FlipDover_Aust Anhaga
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....and they are too hot!
maid_mariane Anhaga
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