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Are we ever pain free

Posted , 18 users are following.

margaret89358
margaret89358

i am interested to know are we ever pain free with PMR. When I was diagnosed, March ‘16 I was put on 20mg of predesolone and within  a few days I was free from pain. As I have been reducing, now on 11mg I never feel as if the pain in hips and shoulders have gone even though I rest as much as I can during the day. I have noticed if I get on my knees to wash the  floor etc  I can just about

get up off my knees by having to hold onto something they are so painful, I was  wondering if anyone has the same problem, or do I have something else going on. It is even painful getting up from the sofa. 😒

Thank you in advance for your help.

 

2 likes, 29 replies

29 Replies

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  • margot34956
    margot34956 margaret89358

    Posted

    Hi Margaret, I have pain all day too, mostly in the hips, worse in the mornings. I was also on 20mg and am now on 10. I am keen to cut down, and am wondering if I should do o without the Dr's permission. I don't know if the all day pain indicates we shouldn't cut down.

    I know another who has PMR and she also is on 10 and has no pain at all.

     

    • EileenH
      EileenH margot34956

      Posted

      Did you have pain at 20mg? That is your guideline. You are looking for the lowest dose that gives the same result. If pains that weren't there at 20mg return - don't reduce further. Either return to the last dose that was good , wait a month and then try again or ask your doctor about the possibility this is something else such as bursitis or myofascial pain syndrome. Both are as much part of PMR as anything else but do respond better to targetted treatment.

    • margot34956
      margot34956 EileenH

      Posted

      Hi Eileen, thanks for your reply, I have never heard of those two, I will look them up. no the pain was still there at 20mg, though not as bad.
    • macas02
      macas02 margot34956

      Posted

      Hi Margot, I have been having  myofascial treatment and I am so happy with the results.it really has worked so well for me. If you can find a Myofascial therapist it really is worth a try.

      mary

    • margot34956
      margot34956 macas02

      Posted

      Hi, thank you for that advise, I am glad to hear it's working for you and am encouraged to try it. I need to find someone who does it. Thanks

    • macas02
      macas02 margot34956

      Posted

      I hope you find a therapist and that it works for you.

      mary

  • reggie92967
    reggie92967 margaret89358

    Posted

    Margaret & others in this discussion, I gave the exact same problems as you. Diagnosed 3.5 -yrs. ago &,was put on trial of 10mg prednisone within days I felt like Superman, my life was back. It was short lived, thus the increase, then decrease, then the increase back & forth of the prednisone. I've never really felt as I did those 1rst few weeks, months of starting the prednisone. I also have bad bouts of fatigue, which we know sleep has nothing to do with, U'm frustrated, depressed daily due to having to give up so much. I'm type-A, obsessive compulsive person & just does me in not being able to go, go, go, do, do, do, as I used to. I'm not a good couch potato, T.V. daytime watcher, or reader. I feel guilty not accomplishing things every day. I was so hoping, praying the PMR would leave me after 2-years as they, our Dr's, tell us PMR often does ? Thanks, Frustrated in MI.

    • EileenH
      EileenH reggie92967

      Posted

      New work has confirmed what I've said for the last 8 years - PMR lasts up to about 6 years for a lot of patients. And for a few of us it lasts longer.

      I also think that starting patients on a higher rather than lower dose works better in the long run. 10mg might work in the early stages of PMR but if the underlying autoimmune disorder increases in activity it is useless. 

    • Twopies
      Twopies reggie92967

      Posted

      I’m sooo much like you! Flattened by pmr. I know one other woman who has had it for 13 years. This past year she has got down to 1/2 mg...and told me her life is back. Her face is normal, her muscle tone is better; the overwhelming fatigue is gone for the first time.  Every day now I see her ride her bike, walk with her husband, plus she does gentle yoga, chair exercises and water aerobics. She gives me hope...hang in there! I’m so much like you...I started on 20 mg pred in sep 2016, am down to 6 mg using dsns method. Don’t know what the remaining pred journey will be, but if my pmr friend can hang in there and get better, so can we!
    • margaret89358
      margaret89358 reggie92967

      Posted

      Thank you Reggie, when you are first  put on the wonder drug, you are absolutely right you feel like superman/woman then after reducing Pred slowly you get some of the symptoms back and it feels like you are yo yo ing up and down with a dosage that relieves most  of the symptoms.  I have mentioned before that the after effects I get with predesolone, sweating hair loss, facial hair, sensitive teeth, weight gain, moon face,  banned from the gym due to heart rate

      rising to 178 have been difficult to deal with.  I know I am not the only one who is dealing with some or all the systems but it is difficult for most to friends  to understand how you feel when you say you have stiff hips knees etc, my husband understands and has read the book on PMR. It is very cold here in England, I am out and about with a jumper and leggings whilst looking around most are wearing coats scarfs and gloves, no new coat for me this year.

       I wish for more on this forum to be lucky with beating this dreadful disease. 

    • reggie92967
      reggie92967 margaret89358

      Posted

      Dear Margeret, Could you please give me details on the PMR book you mentioned your husband read. Thank You
  • Kassiebeetle
    Kassiebeetle margaret89358

    Posted

    Hello Margaret, Hope things are improving for you. Yep it is a journey none of us would have chosen for sure. I am somewhat bemused by the comments about getting down on hands and knees to do the floors. Is this something that has been done in England as a routine? Here in Australia for as long as my 66 years can remember a mop and bucket has been used. This must be very difficult doing floors on your hands and knees. Very interesting.

    Cheers

    Kath

    • EileenH
      EileenH Kassiebeetle

      Posted

      My cleaner here in Italy with every mod-con you can think of used to get on her hands and knees to do floors with a hand-held scrubbing brush!!!! If I use a scubbing brush it is one on a long handle - but you do get a far better result with a hand held one - you can exert far more pressure!
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