Not sure about this pain
Posted , 5 users are following.
I'm currently on 25mg Pred for GCA. Before I was diagnosed at the end of last year, I was on a maintenance dose of 2.5 for PMA, and as I had some pain in my shoulders then, increased my dose to 5mg.
I'm now on the higher dose and have have had a fair amount of stress due to various things. The thing I'm asking about is, can PMR rear it's head at the level of Pred, or is it GCA? Is my pain in the shoulders and severe lack of muscles in my legs, to the point I can't really walk much, caused by GCA/Pred or has the PMR come back? I know that at the level of Pred I'm on, it shouldn't have, but it feels like it has. The pain across my shoulder feels very much like PMR.
I have had a fair amount of stress lately, but would have though the Pred would have taken care of it.
2 likes, 29 replies
pat38625 Susanne_M_UK
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I know Susanne that stress (unavoidable) brought on my PMR, I am totally convinced just like 14 years ago I was dianosed with ME/CFS was definitely stress. You take care and keep us all posted. Hopefully you will feel better soon. Regards Pat
Susanne_M_UK pat38625
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MrsO-UK_Surrey Susanne_M_UK
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Have you been doing anything strenuous or any different exercise which may have aggravated things?
Stress in any shape or form, whether physical or emotional, can play havoc when on steroids for these conditions, whatever dose you are on, so undoubtedly won't be helping you, although I know that unfortunately some stresses are impossible to avoid.
Susanne, I think you need expert investigation and advice, and perhaps some blood tests, especially to rule out anything else that might be going on, such as rheumatoid arthritis. Why do these things happen on a long Bank Holiday weekend?!
Susanne_M_UK MrsO-UK_Surrey
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I have my next blood test on Tuesday. Seeing rheumy again on 16 April. But if my levels are raised, I will know before then.
I haven't been doing anything out of the ordinary, but the business with GP and sick certificate did leave me stressed.
Pain in my temples is also worse.
EileenH Susanne_M_UK
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Yes - I couldn't get on the forum most of the morning. I did send the moderator an email so maybe he told them - I felt bad as he's off for the weekend but I know he checks now and again. It was only forums, everything else was fine.
EileenH Susanne_M_UK
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In the lower back it can pinch the sciatic nerve and cause leg pain in the thigh but also right down to the ankle making walking difficult. In the mid back it can cause tingling in the shoulder blade area and even pain into the ribs and in the neck the pain refers into the arm and neck, even as far as the head and can mimic GCA pain. The shoulder and hip pains can be very like PMR.
The best way to deal with it quickly is cortsone injections locally. Manual moblisation of the trigger spots by a physiotherapist also works but takes longer, repeated sessions are needed though even the injections may have to be done a few times if the entire back muscles are hard. Another very much gentler option but very effective is Bowen therapy. A lot of PMR patients find that once this is sorted out they are able to reduce their pred dose more - the high doses mask it but it reappears at lower doses.
If it is really bad then it will break through at a dose of 25mg because the referred pain is due to pinched nerves but as you say, at 25mg any ordinary PMR pain should be dealt with.
linda17563 Susanne_M_UK
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Susanne_M_UK linda17563
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linda17563 Susanne_M_UK
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Susanne_M_UK linda17563
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EileenH Susanne_M_UK
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Susanne_M_UK EileenH
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On the minus side is the fact that I get a lot of satisfaction from my job and really enjoy working with my colleagues. Although we can afford for me to stop working, having my own income is important to me mentally.
EileenH Susanne_M_UK
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What is important above all though at the moment is your health - without it you will not be able to work again once you have recovered. I know one lady who developed GCA in her early 50s who worked for Border Control on long shifts with a day/night pattern and heavy physical work. She was afraid to tell them at first but after talks with the union and occy health she was off for some months I think before returned to lighter duties and no night shift at first. After 2 years she was back at her own job, restricted to 2 night shifts back to back but doing fine. She was equally as despondent as you have been at first. You will get much better - but not if you abuse your body.
I still work a bit - I'm a freelance translator but the company I did most of my work for has been seriously hit by the "crisis" as their clients need money (and prospects) to commission market research! The banks were desperate at first to know how to get back trust but then the work went like a tap being turned off. I had a job a couple of weeks ago - the first real one since last spring. It could be as long again to the next, can't tell. In the meantime I have got my state pension - hardly great riches but I don't feel quite so "I''m not really contributing" - and fill my time with what is effectively voluntary work. Still writing, still medically orientated and demanding in the research I do.
Cliche it may be - but when one door closes...
Out of interest - what do you actually DO in your job?
Susanne_M_UK EileenH
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I can see you understand exactly my need to be doing something worthwhile and to contribute. My husband would never tell me not to spend money, but I have a very independent streak, which sometimes gets in the way!
I work for a charity that treats veterans with psychological wounds. Although I work in the Fundraising and Communications part, it is part of the treatment centre, so we have close daily contact with the veterans. It is such a special place and we see first hand how veterans are helped.
I'm having some serious thinking time.
EileenH Susanne_M_UK
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Susanne_M_UK EileenH
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