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My experience with PMR.

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patricia31001
patricia31001

I was diagnosed about two years ago with PMR.  My Internist started me on 10 mg of Pred. decreasing one mg every month.  I instantly increased my exercise.  I went from walking four miles a day to eight miles.  I walk four in the morning and four in the evening.  My pain subsides about halfway throuh the first walk.  My pain went away for a few months then it came back at an increased level.  I then requested to see a rheumatologist as I didn't want to go back on Pred.  At that time, I could't lift myself out of a chair without pain.  The rheumatologist started my on 20 mg of Pred. decreasing very slowly.  I instantly felt wonderful.  I had a sense of wellness.  I knew the Pred. was working.  We continued decreasing the Pred. and when I got to 3 mg. the pain returned.  Since the weather is warmer I added a half hour in the pool to my two four mile walks.   I went back to 10 mg. and am now at 5 mg. but I am in pain every morning.  I recently caught a could and the pain increased drammatically but I have maintained the 5 mg.  I fishoil and added turmeric and magnezium.   I welcome any advice.  Thanks.

 

0 likes, 5 replies

5 Replies

  • Nefret
    Nefret patricia31001

    Posted

    Patricia, I'm unable to walk 400 metres unassisted, let alone 4 miles.  PMR decided to attack my legs and the pain prevents me from walking for any length of time.  Over the last 10 years I have learned to live with it. I walk every day for about an hour, but I have to do it at my own pace.  And as for swimming, most of our pools here have chlorine added and I am allergic to it.  The water is usually too cold for me as well, which is a pity as I'd love to be able to.

    I think you are making matters worse by over-exercising anyway.  PMR puts muscles under stress and too much exercise will only put further demands on them.

    I believe that you are also not taking enough steroids.  If you are on 5mg steroids but still in excessive pain, then what is the point of taking them?  You gain no benefit from them and it turns into a lose-lose situation - you get what side effects are prevalent on that dose for you, but absolutely no benefit,  You need to go back up to the dose which you were comfortable on and stabilise on that dose before beginning any reductions.

    PMR has a mind of it's own and wil behave as it wants to despite any attempt at control.  In fact, you can't control it at all, but it can be managed to give you a reasonable quality of life.  In spite of my problems that is something I do have.

     

  • debbie27473
    debbie27473 patricia31001

    Posted

    Hi Patricia. I was wondering if, instead of decreasing your overall excercise time (which is obviously important to you), you could change the ratio and have more time in the pool getting muscle supported excercise and a little less walking which is obviously stressing your inflamed muscles. I know with my pred, I have to decrease by 1mg every other day for a month and the lower dose for another month to get it down. This is really frustrating as, like all of us, I want to get off of them asap but I have come to realize that if I try to reduce too quickly, I have to up the dose by several mgs and start again which obviously takes even longer! 

    I think it's great that you have been able to keep up an excercise regime. I used to be very active at one time. Unfortunately my legs refuse to obey me at present and if I try to force them into submission, they just give way under me! Consequently I am not getting nearly enough excercise which makes me feel pretty useless and certainly does not help with the weight gain, bloating etc. caused by the pred. Wishing you good luck with everything. Take care.

    • patricia31001
      patricia31001 debbie27473

      Posted

      Thank you for sharing your experience and appreciate your support.  I plan to continue my exercise regime as long as I am able.  I do plan to increase my pool time and I agree muscle strengthening is equally important as aerobics.  The weird thing is if I force myself up and out the door for a walk I feel much better.  And believe me I start out slow.  After my walk the day is mine and the pain is manageable.  If I crash and spend a passive day on the couch the pain increases and stays with me all day.  However, after a very busy stressful day I have no choice but to rest (usually on the couch).  So far I've been able to maintain my normal weight  and I'm terrified to stop for fear I'll gain so much weight I'll never get out of bed.  I only had a few days where I couldn't walk due to severe pain in my legs.  I pray one day I'll wake up pain free.  I wish the same to you.  

      Thank you again.  

  • linda451
    linda451 patricia31001

    Posted

    Hi Patricia

    I was told to step up my exercise when i was diagnosed with pmr by my doctor. So when i come home from work i have a bath then rest a while before i either go to tennis or line dancing, i think the key thing for me is to rest as much as possible. I do a very physical job as well as look after my grandaughter one day a week. I can say though sometimes i just have to give in to it, even when i don,t wont too

     

    • patricia31001
      patricia31001 linda451

      Posted

      It sounds like you have found a way to manage the pain and still live a very active life.  Regarding the exercise I think you are spot on as staying in motion is most important.  I know what you mean about giving in to a full day of rest.  I believe that is necessary for you to recharge for the next day.  Balance is important...I feel like I keep all the balls in the air most of the time but I drop a few every once in a while.  

      Thanks for sharing.   May we wake up one morning painfree and all this is behind us.

      Take care.

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