Muscle strength PMR

Posted , 13 users are following.

I am reducing from 4 - 3.5 using the DSNS method. I had the most fantastic pain free day a little while ago and thought "does this mean I'm on the mend". managed to do a few things that morning then got realy tired in the afternoon and next day had muscle and joint pain again so I am a bit perplexed.  I didn't do anything that much, however I seem to have little to no muscle strength so everything is a big deal.  Has anyone out there had PMR and now has not and if so how long did it take for the muscles to regain their normal strength ie. pre PMR and how did you do it?  

 

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  • Posted

    Hi their Denise ,I have had PMR 3 years and very very slowly reduced to 4 mg and I am ok ish......... Like other each day is different. Some days nearly pain free others back pain,arms hurt and hips hurt ...but like you I think I have no strength were muscles are concerned ,cannot even oper jars or get up off the floor with out help .i was wondering if our muscles regain their strength or do we have to very gently build them back up again x
  • Posted

    Hello Denise, I have had PMR for a year now and down to 8mg from 15.

    I am the same feel good some days but if I say just walk around our small local town in the afternoon have aches in my hips and legs for a few days and need to stay in again. I have also had the thought that our muscles apart from the inflammation need building up again but perhaps that's only something we can do once free of PMD and off the pred.

     

  • Posted

    Have been diagnosed for a year now, but think I hd it for 2 years before that,I am upset with this forum as I have written on it twice recently as I suddenly had such pain in my right hip and leg that I could not walk, my husband bought me a little mobility scooter as I was complrtely house bound, long story but after 8 weeks and many xrays etc found it was a pinched nerve in my spine, had the most painful lumber block injection and am 70 per cent better, I was so frightened thought I was never going to walk again wondered if anyone with PMR had ever had it, no one replied to me.

     

    • Posted

      Hi Vanessa, I'm so sorry if you haven't received replies to a couple of your posts - sometimes posts can get lost in the middle of discussions under many of the headiings surrounding PMR and GCA.  If that is the case, then you will be more likely to receive a reply if you post a new question under it's own heading.  For instance, this particular thread started off under the heading "Muscle strength PMR".  I'm so glad to hear that the cause of your sudden hip/leg pain has been found and successfully treated.  Onwards and upwards for you now, hopefully.
    • Posted

      thank you for that, it is just that Eileen has always been so good at giving advice and I wanted to know that this had nothing to do with PMR, as al these pains seem to go together. Once again thank you for replying.
    • Posted

      I've replied to a few of your posts about back pain Vanessa but I cant remember which. I'm also fairly sure I have suggested pinched sciatic nerves - sometimes due to spasmed muscles, sometimes other things, if not to you than certainly to others. I've explained on several occasions that there are other causes of pain besides PMR - but no-one on the forum can really identify which is which.

      I'm sorry you feel annoyed I didn't respond to you but even I have holidays! If I don't see a post for more than a few days then I tend to assume it may not be worth it, especially if it was an urgent plea - and after a week away I have something like 300 emails or more to clear just for the forums! On that note - from the end of this week I'm away and very likely will be unable to get at my emails for a few weeks since China has banned google!

    • Posted

      have a wonderful time, I know how busy you are, just when you cant walk and nobody seems to know why you get frightened and guess you are always everyones guardian angel, thank you for replying.
  • Posted

    Denise, I know what you mean about suddenly feeling pain-free (or almost) only to be hit with returning muscle pain.  I can remember a similar experience when I was on an even lower dose than you and was feeling very on top of PMR/GCA.  Following a meal in a lovely riverside restaurant one day, we decided to enjoy a riverside walk.  That enjoyment was very short-lived with the sudden return of pain in my lower back and legs which saw me hobbling back to the car, imagining a major flare and feeling very sorry for myself.  However, a couple of days later after resting up I felt much better again.  No matter how low we get on the steroid dose, we will be reminded when we try and push those steroid-weakened muscles, even if the inflammation is well under control.  Although the manual techniques of physiotherapy are contra-indicated in PMR, when you reach these very low levels of treatment certain techniques can be helpful.  At around the 3mg level, I experienced sudden intense pain in my right shoulder blade and upper arm area preventing me from sitting back against a chair.  I found an excellent physio at our local community centre who found several knots which he treated with gentle massage, heat and ultrasound, and after several treatment I was pain-free.  The steroids do weaken our muscles so they will complain when we try to use them more.  The muscle strength in my legs in particular took much longer to return to normal - in fact, it took many months post-steroids for the stiffness in my knees and ankles to completely resolve, in spite of daily walking.  But then it is well known that it can take our bodies up to a year after coming off steroids to totally recover from the onslaught of this illness and its treatment.
  • Posted

    It is very frustrating.  The rule is slowly and gently - the old adage 'there is no gain without pain'  is incorrect as any good physio will tell you.

    Start walking every day, start with just 10 mins, there and back and put the time up slowly day by day.

    Don't sit down for more than 1 hour at a time, just get up and move even if it is just across the room. And that applies when sitting in front of the computer.  Use an alarm clock if necessary.

    One thing that has helped many people is Bowen Therapy.  It is well worth giving it a try.  Yes, it means paying for it, but the best of it is that you book three sessions in consecutive weeks and if it is not working for you within that time, the therapist will tell you.  So it is not a money making machine.  I finally gave in to some nagging and tried it as I was heading back to a wheelchair - white witchcraft - as I call it worked for me.

    If you can find a Nordic Walking class, that can help enormously as long as you tell the instructor you have PMR. 

    Tai Chi, but you need the right sort of Tai Chi.

    And finally, yes PMR does go into remission but remember you are that much older so your whole body has aged.

    I do know men who have been younger ie in their 50's who have gone back to marathon running - something I could not do ever.

    A member of one of the support groups, started a ' gentle walking group' who meet once a week and end up in a cafe. People without PMR but who are friends also join in, the emphasis is on GENTLE.

    • Posted

      Not sure I could find a nordic walking class here in Central Queensland  Australia-.  Bowen massage yes and Tai Chi or Qi Gong yes. Will try them all to see which one suits  Thanks
    • Posted

      You can always buy a DVD on Nordic Walking and poles.

      Could do with some of your sunshine here.

    • Posted

      Thanks will loook around for that.  Lack of sunshine is never our problem - cloudy days and rain are a blessing.  Here we are at the end of June almost mid winter and the temps are still 15 -19 overnight and 21-24 during the day much warmer than what I call normal.  Lovely for winter but our summers are ever soooo.. hot!
  • Posted

    I would suggest this could be due to the dose you are now at and your body not having quite caught up! Combined with doing a bit more than you think on that really good day.

    The feeling of a lack of power in your muscles is something I've struggled with ever since the PMR started - but it is improving now I'm on a low pred dose. Whether I'll get back to being as strong as I was before PMR I don't know - I've had it for 10 years! However - one of the things I feel very strongly about is that we should be assigned to a physiotherapist right at the start to be given light exercises to keep the muscle tone up during the course of the illness and while taking pred. 

    There are simple exercises we can do but using very light weights and few reps to start with, building up VERY slowly - as MrsO and Lodger have emphasised.

    • Posted

      I was sent off to an exercise phiso at about 6months into PMR.  The exercises she suggested hurt quite a lot at the time as I was only 6months into PMR so I stopped. I should try again as aonther 7 months has passed and then I'll slowly up the anti on her overall strength building exercise and maybe eventually take up water aerobics.  Thanks for your help on this as you obviously know how frustrating this lack of power is in everyday life and I guess use it or lose it even baby steps.
    • Posted

      As I say, start with very light exercises and just a few reps - less than 5 at first - and build up very slowly, preferably with a day rest in between. Physios MUST be told and made very aware if they don't know that the normal approach doesn't work with PMR because recovery of the muscles is so slow. Anyone who tries to force you to do too much doesn't know about PMR so just be aware.

      Even going to the pool and walking in the water is a good start and using the water as the resistance to hand/arm movement is good - that is where I restarted with the hospital physio here using the hydotherapy pool and maybe your physio could use that approach? Though it is something you can do alone if you have a warmish pool handy.

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