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Pmr and recommended exercises

Posted , 16 users are following.

Twopies
Twopies

somewhere (on this forum?) I saw a link for exercises to do if you have pmr but now I can't find it.  A Google search turns up a zillion posts, not the one I'm looking for.  Is there a recommended course of exercises to do that are specifically recommended for pmr?  Has anyone else seen this link?  Thanks!

0 likes, 39 replies

39 Replies

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  • mary19068
    mary19068 Twopies

    Posted

    Hi Twopies

    I bought myself an exercise apparatus called 'Twist and Shape' you can go at your own pace on it. You do as it says 'twist' i'm not bothered about the 'shape' although i have lost some weight using it. You can do it very gently and it moves every joint and muscle in your body. Some exercise samples come with it and a dvd. I just gently twist from side to side and you can feel your leg muscles, arm muscles and hips and buttocks and your back all stretching together so it's just one movement if you wish. I did this gently for about 5 mins to begin with now i'm up to 15 mins going a little faster as i am now used to it and it really unstiffens me and i feel quite good after it. You can go as fast or slow as you like......you can get it online from A....n.....have a look and see what you think....

    • Twopies
      Twopies mary19068

      Posted

      Is this the one they advertise in tv?  You aren't afraid you will fall off it?  The ones on tv (if I'm thinking of the same thing) look like they might be unsteady...thanks!

    • mary19068
      mary19068 Twopies

      Posted

      Hi Twopies

      Yes! that's the one. You will only fall off if you let go of the handles. With this piece of apparatus your in charge. There is no pressing buttons in order to get it moving you are the operator just by moving the handles from side to side as slow as fast as you want to go. You can adjust the handles to your height and comfort. I went very slow and steady at first then built it up. My five year old grandson uses it when he comes over and he has never fallen off....

    • mary19068
      mary19068 Twopies

      Posted

      Hi Twopies

      Forgot to mention the platform is not very high. I measured it and it is 6 and a half inches from the floor....easy to step onto and step off. If your unsure about it read up on it online and take it from there. I have never fallen off it or had an accident it's quite safe i am confident using it, but the expression always used on the forum "we are all different".....

  • celia14153
    celia14153 Twopies

    Posted

    Hi, this was discussed elsewhere on the forum - I’ve copied it for you. May be worth taking a look.

    ” When we started our group meetings, we had and Exercise Instructor along and he did a demonstration and had us all doing it as well, which was a laugh.

    However, he wrote a article on Exercise for PMR patients. This article can be found under Health and Wellbeing on the PMR&GCA North East Support website.”

    Hooe this helps 😀

    • EileenH
      EileenH

      Posted

      PS, Lots of other good stuff there...
    • shannon76840
      shannon76840 EileenH

      Posted

      Very informative.  Newly diagnosed and only 2 days on prednisone .  Felling a wee better with pain, but still very tired.  Not sleeping with pain increasing from early eve until am.  I may try to do some of these when it becomes more manageable.  My CRP and ESR were normal but doc says the clinical picture is textbook.  I hope that I can get this pain under control and eventually off prednisone.  I have an enormous fear of side effects... GI bleed ( already had 2)  I cannot use any anti inflammatories, hypertension... already on 3 meds and weight gain.  Does anyone have experience with no weight gain.  Thanks in advance
    • EileenH
      EileenH shannon76840

      Posted

      Cut your carb intake to help the weight gain problem and also reduce the risk of developing diabetes. It does work - there are a lot of people on the forums, all 3, who will vouch for it. I lost 35lbs of PMR and pred-associated weight gain by doing it.

      You are much less likely to have a gastric bleed with pred than with NSAIDs, especially if you also take either ranitidine/Zantac or a PPI to protect your stomach.

      Everyone wants to get off pred - but don't rush. This isn't a short term problem if it is PMR, it takes between 2 and 6 years for 75% of us to get off pred when the underlying autoimmune disorder burns out. If you try to go to too low a dose or force a reduction you will jsut end up back where you are now.

      However - you say the pain gets worse in the evening/night. When and does activity reduce the pain at all?

    • Anhaga
      Anhaga shannon76840

      Posted

      There are more of us who didn't gain weight than you might expect, but in most cases it's because we didn't give into cravings at the very beginning.  I happened to have lost a lot of weight before diagnosis and was very worried about ballooning up.  Perhaps too much so as I now weigh even less than I did at diagnosis, but there you go!  If you can eat plain live culture yoghurt that can do wonders for your stomach and gut health.  

    • shannon76840
      shannon76840 EileenH

      Posted

      Thank you Eileen for your comprehensive answers.

       I have not done much exercise as I am in so much pain and fatigue.

       This is real early in taking pred.  My doc called and said my ESR, CRP, RA, and one other inflammation markers are within normal range and told me I can stop taking this in a couple days.  I have seen some improvement and don't want to go back to the beginning.  He is open to trying anything though.

       I am improved somewhat in only 3 days of red. so I may just continue and see how it goes.  He did say that a percentage of people do not have high inflammatory blood values.

       I will try to do some exercises, stretching and walk to see if this can help.  Slow and steady.

       We are looking at a tempurpedic mattress because I cannot sleep much which helps nothing.  My main pain is neck, shoulders and upper arms with some groin /hip pain.

      This forum is very positive, honest and helpful, glad I found it.

       

    • shannon76840
      shannon76840 Anhaga

      Posted

      Thank you for this advise, I will be mindful of cravings!  I do the plain yogurt with live culture as well. 
    • EileenH
      EileenH shannon76840

      Posted

      Sorry - am I being dense but are you saying your doctor is saying you can stop taking pred because your blood values are normal? He obviously doesn't know anything about PMR if so. 

      Show him this paper which is a basic introduction to how to manage PMR:

      http://www.rcpe.ac.uk/sites/default/files/quick.pdf

      This

      https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

      is an outline of recent research showing not only that longer term pred isn't as bad as painted but it also emphasises the time PMR lasts.

      Exercise isn't that important although gentle stretching in the shower and going for short walks will help you loosen up a bit. If you stay on a moderate dose of pred (15-20mg) for a month you should see a major difference and then you will be able to do more. Then you start to reduce SLOWLY to find the lowest dose that gives the same result as the starting dose - and that is where you stick for longer. Every few months you try a small reduction - if it works for a month or so you can try another until each time you find a dose where the symptoms reappear and then you go back to the last dose that was good, wait a few months and try again. There is no hurry, this isn't a race - except the sort where the tortoise won!

    • shannon76840
      shannon76840 EileenH

      Posted

      Yes Eileen he did suggest that but I believe that he is open to letting me lead as well. I am also a primary care nurse practitioner. I love this article.  Thank you, thank you thank you!  I am travelling from Ontario, Canada to Ireland in 3 weeks and must be improved. 

      Thanks 

    • margot34956
      margot34956 shannon76840

      Posted

      Hi Shannon, so not nice to have that diagnosis. I do wish you the best Doctors and help you need.

      I was diagnosed in Nov 2017. I do have experience with no weight gain. I did go on the anti inflammatory diet. Because of the I have lost 9 kilos. I have noticed recently I am very hungry.

    • EileenH
      EileenH shannon76840

      Posted

      If you are a PCNP you're well away! The Quick paper is good - but many of us feel it is still a bit fast at the start. Some people will be fine, others will struggle with drops of 2.5mg at a time. But if you try 2.5mg and it doesn't work don't hang around hoping things will get better - they may not. Go back and do a smaller drop. After all, 1mg every 2 weeks (which is possible) is not much less than 2.5mg every month. When you reduce in small steps, steadily and being sure you are still OK, waiting a bit of you are not, you usually manage to get to a low dose without flares. If you let in a flare because the dose is too low you often find it harder to get things under control again and end up with going back to a higher dose and losing all the perceived benefits of reducing faster. 

      And be careful about reducing while travelling - it really isn't a good idea until you know your body and your PMR really really well. 

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