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Not sure about this pain

Posted , 5 users are following.

Susanne_M_UK
Susanne_M_UK

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

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  • pat38625
    pat38625 Susanne_M_UK

    Posted

    Hi Susanne, sorry to hear you are feeling so poorly.  I am not qualified enough to advise you but some of the other ladies with a lot more experience than me will be along in a while.  I thought that with GCA your pred would have been a lot higher than 25mg.

    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
      Susanne_M_UK pat38625

      Posted

      Pat, I started out on 40mg Pred in December and have tapered down, rather too fast, I believe, but it's only in the last 3-4 days the pain in shoulders and temple have become more noticeable.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey Susanne_M_UK

    Posted

    Oh dear, Susanne, I'm so sorry to hear you are still suffering.  I doubt this is solely due to returning PMR whilst on as high a dose as 25mg.  Giant Cell Arteritis can affect the large arteries and blood vessels throughout the body so would be felt in the areas that you describe, and would resemble the pain of PMR.  Having said that, it is also possible that the accumulation of steroids over the years is having an effect on your muscles, weakening them.  

    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
      Susanne_M_UK MrsO-UK_Surrey

      Posted

      I have had trouble logging onto the forum. Think it must have been down.

      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
      EileenH Susanne_M_UK

      Posted

      We were posting at  the same time - it could be both what I described and the GCA and your shenanigans with the GP and sick line is more than enough stress to make either worse. 

      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
    EileenH Susanne_M_UK

    Posted

    Something that is common alongside PMR is myofascial pain syndrome. Where PMR is a general inflammation of muscles due to cytokines in the system, MPS manifests in the form of hard knots of muscle fibres due to concentrations of cytokines in particular muscle groups: in the shoulders in the trapesius muscle (towards your neck from where your bra strap sits), alongside the spine just above your waist, probably in the lower trapesius, and in the lower back on either side of the spine about where the dimples are seen. They can be there and not do a lot but some extra strain or even tripping, the bus stopping and you flying forwards or even catching your head getting in or out of the car can be enough to send the surrounding muscles into spasm.

    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
    linda17563 Susanne_M_UK

    Posted

    Have pretty much the same problems as you.  I see my Rheumy on 14th, will be intreresting to see what they come up with!  will post on here, in case it`s of any help to someone...good luck...
    • linda17563
      linda17563 Susanne_M_UK

      Posted

      They have been debating as to what is going on with me,  definitely PMR, since three years ago.  I have very blurred vision, so this January, put up again to 20mg, after getting down to 7mg.  I now feel very weak and ill, so that`s why even though on 16mg now, which they told me to go down to, the GP is puzzled, so sending me back to Rheumy.  Will post to you what happens....I just want to get there, have no life at the moment!confused  Happy Easter.....
    • Susanne_M_UK
      Susanne_M_UK linda17563

      Posted

      Linda, I know how you feel. My life is on hold at the moment and not knowing when I might be on an even keel is hard to deal with. I also worry about my job, as there has to be a limit to how long I can reasonably be off.
    • EileenH
      EileenH Susanne_M_UK

      Posted

      GCA is covered by diability legislation - don't forget that. 
    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      It has played on my mind. To carry on working or throw in the towel. On the plus side of stopping work is my health and I will have plenty of time for leisure interests, such as painting which I would like to develop.

      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
      EileenH Susanne_M_UK

      Posted

      Know exactly what you mean. The years I didn't work I never had "my own" money and I hated it - OH couldn't understand why as he never cared what I spent (I am very mean with what I give out I have to say, very cheap to keep lol). 

      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 rolleyes 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
      Susanne_M_UK EileenH

      Posted

      I'm not a big spender either. Love a bargain at Lidl! My "extravagances" are books for my Kindle and art supplies.

      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.

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