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Help with coping with PMR

Posted , 10 users are following.

maureen49480
maureen49480

i was diagnosed with PMR about 8 weeks ago.fortunately my physiotherapist recognised the condition.

i was able to get Predisolone very quickly and i have a GP who understands the condition.

I am wondering if this is linked to the shingles virus, as i did get shingles from having the shingles vaccination.

i also had a very traumatic fall when i smashed to the ground because of an uneven paving slab in a High Street, but i also had a bone removed from my hand in June this year and collagen put into the wrist.

Reading on sites that other people have had shingles, others had trauma, and other operations ,could any of these things be the triggers?

Although i started with 15mg Predisolone that was not enough so the dose was increased to 20mg Myhead was in quite a state and I felt awful, so I have managed to get the dose down to 16 mlg by dropping 1 mlg a week.

i seem to get a good day and then i am in a lot of pain the following day, the mornings are the worse time i have to do anything in the afternoons and evenings. getting dressed is difficult.The pain is worse in my neck and shoulders, but also affects my hands. There are days when i cannot lift a cup or lift my arms. My thighs also get very painful.

There is no joy with this condition.

0 likes, 22 replies

22 Replies

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  • judith90525
    judith90525 maureen49480

    Posted

    Hi Maureen,

    I started with 20 mgs and took some weeks to reduce to 15. A lot of people need 20 mgs to control initial inflammation.

    Listen to what others have said regarding a slow taper. If you get impatient you only end up back on 20 mgs again.

    Try to remain moderately active with exercises regimes like Tai Chi & gentle swimming.

    Rest when you are tired. Many of us rest after lunch for a time.

    Realise that for most this is a LONG journey & it could take anything up to six years to be rid of it and for some they NEVER are! However, on the very low doses of pred i.e under 5 mgs the side effects are negligible.

    Learn to live with a new normal.

    Good Luck & Blessings.

    • maureen49480
      maureen49480 judith90525

      Posted

      Thanks my resting is the mornings, i seem able to do more in the afternoons . Still struggling to get dressed some days!

  • Kdemers
    Kdemers maureen49480

    Posted

    Link to Shingles virus is still being researched, but my doctor prescribed an anti-viral for me a few years ago and I have not had a flair of my GCA. I have not read research about the shingles vaccination. I think you should keep looking at the research. Do not taper fast; go back to where you had no pain if you have a flair. Good luck.

  • maureen49480
    maureen49480

    Posted

    Thank you, not many starts to the day without pain. I am learning how to cope and handle this condition. I also have osteoarthritis and had two knee replacements so i am used to pain but this is totally different it just takes over the body on bad days.

  • celia14153
    celia14153 maureen49480

    Posted

    You are new to PMR which is different from the other ailments you describe. It is really important to control the inflammation, despite side effects, and taper slowly. Failing that you will be back to square one. We can only advise from our own experience and knowledge of this illness, it's up to you. But you have been warned! 😃

  • maureen49480
    maureen49480

    Posted

    Thank you for your help. I had never heard of PMR but since my diagnosis many people know somebody with or has had the condition.

    I would like to know how many had the shingles vaccine. I am sure that has been the root cause of the problem.

  • EileenH
    EileenH maureen49480

    Posted

    It is unlikely that any one of the things was the direct trigger but any one of them might have been the straw that broke the immune system's back and set it off on its haywire journey of PMR. The Zostavax vaccine has been implicated in developing both PMR and shingles!

    You say you are a widow - so you will be responsible for doing everything for yourself? That may be your problem although it is normal to have a return of symptoms in the morning as that is when the new batch of inflammatory substances is shed in the body at about 4am. The sooner after that you take your pred the less inflammation is created and the sooner the pred gets it under control. However - the pred has cured nothing. The actual underlying disease process is still going on in the background, leaving your muscles intolerant of acute exercise. You must learn to pace yourself and rest between tasks and that is almost as important in the early stages of learning to live with PMR as the pred.

    This is a link to the list of support groups in the UK for the charity PMRGCAuk

    http://www.pmrgca.co.uk/groups/

    who also have a very active forum for people who don't live close a group - not that being a member of either is exclusive of the other!

    And this is to a post on that forum relating to living with PMR:

    https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...

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