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Just been diagnosed with Fibromyalgia besides havingPMR

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linda82701_USA
linda82701_USA

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😜

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  • EileenH
    EileenH linda82701_USA

    Posted

    First of all, a reminder that, as Paul says, PMR is not the disease itself. PMR is the name given to the symptoms of an underlying condition and there are a whole range of things that can mimic it. It is important at the outset that the doctor does all the appropriate tests to rule out the others as some of them are potentially very serious - not that you'd get that impression from some GPs who fob you off with no testing with "your age", "depression" or whatever. 

    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
      linda17563 EileenH

      Posted

      Have just come from an appointment with my doctor...she has reiterated what you have said....having fibro and PMR....steroids will only treat the PMR...not the fibro....when I recently posted "too much pain"  when it certainly got to that point....she gave me a steroid jab 2 weeks ago...which did n`t really help...my lower back is now easing....it feels more "mechanical" if that makes any sense...(.I have scoliosis)....but what you post about spasmed muscles is just what happened and feels like it....I can now just about tolerate I would think a physio....but am scared it will make the other problems worse....

      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!rolleyes

    • EileenH
      EileenH linda17563

      Posted

      When you said about the scoliosis it occurred to me that that is very possibly what is causing the low back pain - that was how mine started, I had a very slight scoliosis but the orthopod I saw in Germany was sure that was the cause. I'd got to a point of balance and then I had a whiplash which threw it all out of kilter. Same happened again 4 years ago - but it was a year after a whiplash then, it took that long to get that bad. 

      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
      linda17563 EileenH

      Posted

      Was diagnosed with ME/fibro think there`s a crossover somewhere.....my Rheumy said, as I think you have pointed out in the past....PMR comes from the spine, Fibro from the brain? (hope I got that right way round) apparantly,the pain"gates" go awry with Fibro....or something like that!

      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
      EileenH linda17563

      Posted

      Interview them? Or look for one that does stuff with alternative/complementary approaches - they do exist I think.
    • Flutterbie57
      Flutterbie57 linda17563

      Posted

      Linda if you think it may be "mechanical", try a miracle ball or a cheap rubber ball first. You can use it to

      ​"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
      linda17563 Flutterbie57

      Posted

      I have just looked up the miracle ball....how do you know which ones....and what exactly to do with them??....Thank you
    • Flutterbie57
      Flutterbie57 linda17563

      Posted

      If you get a miracle ball it will come with a booklet and instructions. If you get a rubber ball it needs to be reasonably soft. I lay on the floor or a hard bed and place the ball under tail bone. If muscles around are tight it can be painful. Within minutes pain usually eases off and I move the ball along my entire spine. It eases the tension in tight muscles.  It gives me so much relief when I need it. Good luck
    • linda17563
      linda17563 Flutterbie57

      Posted

      Thank you for that, in quite a bit of pain again, and have heard nothing from hospital as yet for appointment, so it seems we have to sort ourselves out!.....
    • maid_mariane
      maid_mariane linda17563

      Posted

      Hi linda

      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
      linda17563 maid_mariane

      Posted

      No, It`s the Fibrobromyalgia...have had it for 20 years with those problems....had PMR 4 years...Have to wear sunglasses also....husband is decorating at the moment....very difficult...smells etc....some days are worse than others.....perfume is the worst ....

      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....rolleyes

    • maid_mariane
      maid_mariane linda17563

      Posted

      I hate those new restaurants with high ceilings to no ceiling they just paint it out black. As you say the echo. We went with friends to the place in Toronto and when the restaurant filled we couldn't hear ourselves. 😬

      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
      linda17563 maid_mariane

      Posted

      I know what you mean.  I went to the city yesterday...first time since November!  went with my sister who has RA...we really struggled...but tried to pace ourselves....today of course..both .paying the price....but have to keep going and stay positive....can`t do that every day though!  The sun is out for a change....makes us all feel a bit better.....Keep well..
    • maid_mariane
      maid_mariane linda17563

      Posted

      Was up at 2am finished laundry, had coffee and watched 3 programs. I'm now ready for bed and just may do that.

      We all need to pace.

    • Anhaga
      Anhaga maid_mariane

      Posted

      I haven't met anyone who likes those noisy restaurants, including the young folk in my family.  Why do they build them like that?
    • maid_mariane
      maid_mariane Anhaga

      Posted

      The one in Toronto is top of building with a view to die for but as we say you can't hear. It is rated one of the top rated restaurants and food was great but you will never get me there again.
    • Anhaga
      Anhaga maid_mariane

      Posted

      There is a new Italian restaurant beside Halifax harbour with it's own great view.  Good food.  I won't go back again until the weather is reliably warm enough to allow us to use their patio.
    • FlipDover_Aust
      FlipDover_Aust Anhaga

      Posted

      And hard floors like concrete or floorboards make it noiser too!

      ....and they are too hot!

    • maid_mariane
      maid_mariane Anhaga

      Posted

      What to get to get east to visit sps. Cousin. I love the food and people. Sounds lovely. You will need to keep in touch and remind me when lobster and scallops are in season.😊
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