Is this how it is?

Commended 15mgs prednisolone 10 days ago.......what a miracle for the first few days, now I seem to have reached a plateau. I am great compared to how I was ( the NA had to dress and undress me when I saw the rheumatologist). I have minor neck stiffness but still feel like I'm sitting on my bones. I can however drive my car....not attempting anything too ambitious! I take my prednisolone as soon as I wake in the morning but am having a lot of sleep disturbance and when I wake I am literally wide awake....like this morning didn't go to sleep till 1ish and was awake by 5. Got out of bed changed the sheets put the hoover round and now am completely bushed.

I am in my fifties, a full time nurse and have not worked since prior to my diagnosis. I want to go back as soon as possible but don't see that happening before the end of the month ( and that is when the steroids start to reduce...dreading it already).

So I'd be grateful for any advice and how others have dealt with this dreadful fatigue.

9 Replies

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  • There is only one answer: pacing!

    healthunlocked.com/pmrgcauk...

    The pred does not CURE anything - the symptoms of stiffness and pain that we call PMR is not the illness itself. They are due to an underlying autoimmune disorder which causes the immune system to be unable to recognise your body as self and so it attacks various tissues, causing inflammation and that is the source of the symptoms. All pred does is relieve the inflammation, it doesn't change the actual disease process which continues chugging away in the background, still attacking your body. Every morning your body sheds a new batch of the inflammatory substances, cytokines, and the daily cycle of pain and stiffness starts again. The sooner you take the pred, the sooner the inflammation subsides. But your muscles remain intolerant of acute exercise - just because you feel well doesn't mean you are, so doing the housework is not a good idea - the PMR will turn round and bite back with muscle soreness that will make you feel as if you ran 5 miles without training - and it will take longer to go away than you are used to.

    The fatigue is a symptom of the autoimmune disorder - as a nurse I'm sure you are familiar with the wide range of autoimmune illnesses, from RA to MS, lupus and beyond, all of which are characterised by fatigue, brain fog and other common problems. This side of the illness is up to you to manage - by lifestyle changes mostly. I've given you the pacing links in the post I gave the link for above but another allegory that is world famous is the Spoons Theory:

    butyoudontlooksick.com/arti...

    I know how much you want, and probably need, to get back to work. But this isn't an illness that is cured by taking a few weeks tablets. In 75% of patients PMR lasts for anything from 2 to 6 years before it burns out and goes into remission and for that entire time you need some pred, much less for most but still some - the other 25% need even longer. There are 3 of us on this forum who have had PMR for 12, 13 and 16 years respectively. The other two are older than me and retired, I could still work if I had to, but not at a physical job like nursing. Even in my 50s I struggled at my job as a freelance translator - and I only had to fall out of bed to in front of the computer and could arrange my hours as I wanted.

    I know none of this is what you wanted to hear - but it is the more probably reality than you being fit to work in a month's time. And beware the reduction - your doctor will almost certainly try to get you to reduce to a plan he wants, PMR may have other ideas. Doing it SLOWLY is the way to go and achieve success. Not 2.5mg at a time, or even 5mg. That way lies a relapse and being back where you were before pred.

  • PMRPro has given excellent advice, so not much to add - except to say you really need to get into the habit of pacing yourself - and that doesn't mean changing the bedding and hoovering in one day.

    I think it's the most difficult to achieve - we are all so used to doing half a dozen things at once - it does need a chance of mindset. But once you've mastered it, and learnt to say NO at times you'll be fine!

  • Should have said - I can't do both on one day NOW! And I count myself as particularly well managed! By the time I have changed the bedding - even with himself holding one end of the duvet - I am ready to crawl into bed! Not go off looking for the vacuum cleaner!!!!!

  • I just spent 45 minutes scraping ice off our vehicles. Not a planned activity. I had intended to shovel the clutter out of spare room in preparation for a small furniture redistribution (which I won't be physically involved in) but now we'll have to wait and see. Groceries and laundry must be done, decluttering can wait. Which may be why parts of my dwelling always seem to look like a veritable tip. Doors are good.

  • Me too. Thought duvets were supposed to make bedmaking easier! Rubbish!

    Not overly in love with the hoover either. But heigh ho.

  • This may sound unappetizing or downright off putting for some but I have solved my bed making dilemma....I live alone so no help available I might add....the bed is made up lovely with top and bottom sheets....which I then ignore.....I I put a large beach towel over top and sleep on it....when I feel it's had enough I throw it in the wash and replace with a fresh one...the top is a duvet which just gets thrown into place....what could be easier?!

    Cheers

  • Hi

    When I was first diagnosed I had 4 moths off sick Hadley did a thing apart from short walk each day.

    I have been back at work full time for a year and only just feel that I am getting back to my old self however don't do half as much as I did .

    I find I can only reduce very slowly and have some really bad days when I come home from work and sleep for hours.

    It does take time and you need to be kind to yourself

    Best Wishes

    Rose

  • My rheumie gave me the impression that I should take some steroids and I would be back to normal in a week. WRONG. PMR is a life changer, you really have to slow down your activities. I carried on working, but rested in the evenings and had to say NO to a lot of social activities which was annoying. On the other hand it has forced me to be much more relaxed. I hated waiting a couple of minutes for something, now I am happy to sit around for half an hour just contemplating life!

  • Well as per usual I just gave my ticket away for the Christmas symphony concert tonight....instead will sit here crying into my eggnog...last year I used two out of five of my season's tickets....think I'd learn, wouldn't you...hope springs eternal...so does pain and suffering unfortunately....so I'll just be here knitting.....

    Cheers

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