Good days bad days

Hi all I'm new on this site, three weeks ago it was confirmed that I had Polymyalgia

Reumatica, is it normal to wake some mornings and not beable to move and others

days fill 80% good most things being possible. I am a 72 year old male always been very active now cannot plan ahead due to the pain, is this going to be normal for the next couple of years?

13 Replies

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  • If you look and think about it, I'd bet that your bad mornings are after a good day? When you did more than usual because you felt well? The next morning is payback time!

    You have to learn to pace yourself because your muscles are still intolerant of acute exercise. They are unable to tell you you are asking too much of them and having done too much they take far longer to recover than is normal. The pred isn't treating the real illness - what we call PMR is just the symptoms of an underlying autoimmune disorder that causes your immune system to go wrong and attack your body tissues as if they were foreign bodies, invaders. This causes tissue damage and inflammation - which leads to swelling and pain. The pred combats that, the result, the real illness is still there and continuing to do damage quietly in the background. If you overdo it the pred doesn't work on that pain - it is like the pain you'd have got before if you had tried to run a 10km race without training, just now it can be just a "normal" day in the house or the garden that does it. You can get back to a higher level of functioning - but the "training" has to be built up very slowly and you have to have enough rest periods in between times. It also helps if you take your pred as early in the morning as possible - take it as a single dose if you wake early and settle down for another couple of hours. By then it will be starting to work.

    And this may give you some ideas and help:

    healthunlocked.com/pmrgcauk...

  • Thank you PMRpro That was good advice it is still very hard stopping yourself catching up on work when you feel good, yes I know that I'm going to suffer the next day and it's very hard a very steep learning curve which I know I've got to follow if I want to get better.

  • exercise can be a problem. I used to exercise daily , at the gym , or cycling etc, as the best way to control and manage diabetes type 2 successfully. My blood sugars have gone haywire since pred and Im on an oral med to control that now. I have found a swimming pool which has a warm tub and seems to help by warming the muscles, combined with a few lengths and some basic exercises of hydrotherapy. Best of all though is an electric bike , just got it yesterday, I biked 17 miles on a hilly route, I live in Cumbria so everywhere is hilly, and felt that I had worked out without stressing the muscles and today there are no after effects. Day off today but tomorrow will bike to the pool and hot tub, then sleep in the afternoon if needs be.

    Electric bikes are expensive but on an interest free deal the monthly repayments are manageable and makes this a life changing thing for me. Highly recommended.

    Dave

  • Bill, difficult to say what might be your "normal for the next couple of years" as we can all be a little different in how we present with our symptoms and how we respond to the steroids. PMRpro has already given you lots of useful advice to follow. There is also a highly recommended book that will help you along the way: 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' written by Dr Kate Gilbert, ex-Chair and trustee of PMRGCAuk. It is available on Amazon and direct from PMRGCAuk: pmrgcauk.com, with all proceeds from sales being donated to the Charity.

    There are also support groups located throughout the UK where you can meet up with others for a coffee and a chat. Details can be found on the following link: pmrgca.co.uk/groups/

  • Are you going to be referred to rheumatologist ? . There is treatment and hope . This illness manifests itself so differently in each of us and for no rhyme or reason we get good days and bad days . For me acceptance was the key , being an active strong woman . I couldn't accept that sheer determination couldn't beat it . I've given in now and take my medicine and today I was out on a bike with my daughter ... I may not move tomorrow but had that precious time with her . I'm very grateful for every little thing these days and that helps . They are very helpful in here if your genuine

  • Hi I am new here also. I have PMR and GCA. when it first got to me I was in pain all on my left side. Knee hip and shoulder. I could not figure out what was going on. After 6 months my entire body got into the act. I would lie down hoping for relief and it hurt just as bad. Then I could hardly grt back out of the bed and the pain was tremendous. This was followed by month of barely able to do my job which was easy as a Camp Host helping campers etc. my first day of taking Prednisone 20 mg was like a miracle. I never realized what a great YET nasty drug prednisone was.

    These guys here seem to know what to do and I feel like I have been hauled out of a pit with some answers in sight. For me the worst is not knowing.

    Now as to activity.. If I want to ride my bike one day always 1 mile or less I simply plan the next day is all rest. Books on tape have been great n I get them from the library. Then I listen n putz around. I have made one big mistake n that was to go to fast on weening as it has now set me back a bit.. I feel blessed I found all of you as it makes me feel exonerated as so many think it is all in my head. I now respond yeah your right and in all my joints n shoulders then I laugh.

    hugs

    Lin

  • Hi Billwizz

    I endorse all that others have said here. I read somewhere that, with PMR, you should plan for 50% of previous activity / energy levels and this is very much my experience at a relatively 'young' (for PMR) aged 59, previously 'action man' fitness wise.

    Nowadays, approx. 18 months into PMR and feeling a lot better, I still have to pace myself very carefully and it's true that even slightly overdoing it can result in a flare of pain / stiffness and / or disproportionate fatigue. That said, the random nature of PMR can still take you by surprise sometimes, despite getting plenty of rest and the best of prednisolone tapering methods.

    It really is a case of pacing yourself mentally as well as physically, and patience is key in planning physical activity and emotional 'load' carefully to stabilise the symptoms as best you can. The good news is that, with time and patience, the symptoms often improve and you can get onto more of an even keel.

    Hope this helps

    MB :-)

  • Thank you for all the replies it does make you realise that your not alone, I have another question I have been reading lots of other peoples comments about the number of steroids they take am I reading this correctly you can change the dose without a Dr's advice?

  • Well, yes and no. In my case I went to my doctor and showed her the dead slow method, and she agreed that I could try it. It's been working brilliantly for me, and my doctor is happy. In fact she was happy with me at 4 mg. So my latest prescription instructions were to take 4 tablets as directed. Owing to success of DSNS method, I'm now at 3. :) So, yes, I've changed my dose, but with my doctor's knowledge. By the same token, once or twice I had to increase my dose by a small amount for a day or two. I wasn't about to bother a doctor to ask permission.

    I would never make a major change without discussing it with the doctor. If, heaven forbid, I had a major flare, I would definitely check in and discuss what might be considered best increase to control the flare and if I were at risk for GCA even more so.

  • Thanks HeronNS for the reply I don't understand what you mean by dead slow method could you explain.

  • healthunlocked.com/pmrgcauk...

    Follow the link and it is self-explanatory.

    Some people struggle to reduce the way their doctor says - the doctor has a timetable but PMR hasn't been copied in. Over years, a few of us have worked out ways of fooling the body into not noticing the lower dose being introduced so much. This is my version and is in use in a clinical study in the north of England.

    As I said in my other post - many doctors just say "Reduce from 10 to 7.5mg..." That is something you can do easily the way pred is used for most things - exacerbations of asthma, chest infections and so on - but for patients on long term pred there are other problems. And you want to identify the right dose fairly accurately - because you aren't heading for zero you are looking for the lowest dose that gives the same result as your starting dose. It might be 9, it might be 8 - but if you jump from 10 straight to 7.5 not only are you likely going to have to go through withdrawal problems but 10mg you were fine, 7.5 you were not, a flare appears. You go back to 10mg and all is rosy. Except had you edged down, you would have found 8mg was good, 7.5mg was not and you'd have stuck at 8mg - 2mg/day less, a 20% lower dose.

  • Not really - many people are told to get on with reducing their dose with no further advice. Or they report the problems they are having with the way their doctor has told them to do it and people here make suggestions to improve what they are doing. A lot of us have been on pred so long we know ourselves better than any doctor can possibly do and have discussed our approach with our GP and had it approved so yes, some of us do change our dose without waiting a couple of weeks to discuss it with a GP. Two weeks at too low a dose is likely to result in a good old flare - waiting that long isn't a good idea.

    If your doctor has said - reduce from 10mg to 7.5mg by the next time I see you that is a basic instruction - and leaves it very much to the patient to find a way that works for them. Someone saying they are reducing, 9mg was fine, 8mg isn't, would very likely result in a suggestion to go back to 9mg and see if that makes a difference and then tell the doctor what has happened.

    But when it comes to going back up more than a mg or two that is definitely something that you should talk to you your doctor about - and real flares must be reported - not least because you will need more pred than you may have on hand, but also because there may be something else going on that you aren't aware of. You can't blame everything on PMR and pred!

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