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Just been told I have Polymyalgia Rheumatica.

Posted , 17 users are following.

judy50581
judy50581

What suggetions do you have for Polymyalgia rheumatica. Should I be exercising?

1 like, 35 replies

35 Replies

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  • tavidu
    tavidu judy50581

    Posted

    Hi judy, Stay logged into this forum and loads of us will give you very good advice and hopefully get you thru PMR but the simple answer to exercising is NO, only do what you feel you can do. Welcome to our club and good luck. Dave (tavidu)
    • pat73046
      pat73046 tavidu

      Posted

      No one told me no exercise. After one month the nurse asked me if I was taking it easy. I am taking care of house , bills, taxes, all house work,and a husband vwith a form of Parkinson disease who uses a walker. I have noticed I DO not have as much pain if I lie down after supper. No one even mentioned activity. Thank goodness for this forum. Thank you. Pat
    • erika59785
      erika59785 pat73046

      Posted

      Pat, I have noticed myself that I have less pain after taking a nap after lunch ----- and lying down after supper.  I ride my stationary bike for 10-15 minutes in the morning and do some Yoga like back stretches.

      I do get tired more easily than I used to in the past .....before PMR.

      You have lots more to do than I have to.....resting in between is  important.  It is so good to have this contact with fellow sufferers.... and I still learn from everybody.  Hugs, Erika

  • pat38625
    pat38625 judy50581

    Posted

    Hi Judy, you are just at the beginning of your journey.  Please hang on in and you will get loads of support, advice and information, more so than you would from your gp and rheumatologist.  Excercise at present, definitely a no no.  You haven't said that you are taking steroids, or the dosage.  Good luck and let us know how you are getting on.   Regards   Pat
    • judy50581
      judy50581 pat38625

      Posted

      Yes pat been taking steroids. Started out taking 10mg, now taking 5 mg. Can still feel the stiffness in the morning the most. More I move the better it gets. Then try to do thing and just don't have the energy. Hope this goes away soon.
    • pat38625
      pat38625 judy50581

      Posted

      Hi Judy, I am no expert on PMR I was diagnosed November '14 and was started on 20mg of pred (steroid) I am at present on 15mg and will be going down to 12.5mg on Monday.  You're 10mg seems very low to start with   I am sure the experts on the forum will agree.  When I was taking the 20mg it was like a magic pill, after a few hours and then finally after a few days, the pain and stiffness was nearly gone.  I just couldn't believe that these tiny wee pills could do so much.  On a level of pain 0 to 10  10 being most painful I would definitely said 15 and I could never go back to that type of pain ever again.  Couldn't get into bed, out of bed, couldn't turn in bed,  It took me two and a half hours to shower and get dressed for a 8 minute car journey to my drs.  My 33 year old son still lives at home, he doesn't drive, and I could never ever ask for help of a personal nature, I would pay for care.  Please don't run away with yourself - because I was more or less pain free and felt better, I started to do wee things about the house.  Well I paid the price, weak, dizzy, very sick, so you need to take it very easy and try and pace yourself.  It does get better but only with rest and time and right dose of steroids.  Keep hanging in there Judy.     Pat
    • judy50581
      judy50581 pat38625

      Posted

      Right now taking 5 mg of steroids. 10mg cyclobenzaprine. Still experiencing stiffness in the morning. Gets somewhat better at night.
  • david14272
    david14272 judy50581

    Posted

    Hello judy. how long have you been on steroids 10mg then 5mg sounds a bit strange to me?? or am i not reading your post correct. Dave
    • judy50581
      judy50581 david14272

      Posted

      Yes David I did go from 10mg to 5mg. Still experiencing stiffness.
  • MaggiGrace
    MaggiGrace judy50581

    Posted

    Hi Judy.  

    I too was recently diagnosed with PMR in March. Fortunately I realized something was "really wrong" and I was able to get referred to a rheumatologist within a week.  

    Some background - I am 59 1/2.  Very healthy and active, but somewhat sedentary at work.    This PMR hit me like a train after 5 years of very non-stop high stress related to both work and family matters.  

    I I had blood work taken and my ESR was only 37 and the rest of my blood work normal.  The doc wanted to start me on a high dose of prednisone and I refused due to a bad experience in my 20's where I was given pred for severe allergies and became horribly depressed.  (I'm a very happy person by nature).  

    Howvever on March 3 I became unbelievably ill with pain and begged rheumy to give me anything that would help.  She gave me a long-lasting steroid injection in both my left shoulder and right knee.  There was enough systemic delivery to my system that all my severe shoulder/hip/knee pain went 90% away within 48 hours.  

    As the injections have begun wearing off I agreed to try 5MG oral pred daily.   It was not "quite enough" to manage my pain/stiffness so I am now at 6MG daily, along with Tylenol as needed.  I usually take 1000MG twice daily.  This seems to be holding me in a good place for now.  

    I realize that I am extremely blessed to be managing on such a low dose, and I have no idea when the long-last injections completely wear off if I will be able to stay at this level.  I do know that gentle exercise has been very important to my well being.  Most days I am driving 10 minutes to the local gym at 05:30 am, I walk one hour or 3 miles on the treadmill.  Then come home, shower, and go to work at a very stressful job.  By about 3:00 PM I begin to "fade" but I do that with or without exercise.  I do allow myself to skip a day here and there, but for the most part, I feel better on the days when I have had that gentle exercise than on the days that I have not.  

    I know everyone is different so you will need to find what works best for you.  When this first hit me, I could barely walk or lift my arms, so exercise was out of the question.  

    I I hope you find relief soon.  This is a horrible disease, and the remedy (pred) for some of us is nearly as horrid.  I shudder to think of myself back on a high dose of the stuff.

    Prayers and peace to you all that wellness comes soon.

    • ingo
      ingo MaggiGrace

      Posted

      Hi MaggiGrace,  I, too, was diagnosed recently with PMR.  Also very active.  Initially, in mid-Dec.  starting having serious pain in both shoulders.  Had MRIs done which confirmed tears in both rotator cuffs plus other tendonoses and tendonites.  Had shots in both shoulders, but only lasted about 2+ weeks.  Eventually pain and sstiffness started in neck and hip gurdle.  Thanks to my primary care doc, he did blood work which confirmed PMR.  Been on 20mg of pred for past week which seems to help a lot.  I have found that taking pred at 2am, which someone suggested seems to take morning pain and stiffness away.  I have always been an avid runner and biker and have been using treadmill and my mounted bike inside 2-3 times/week.  (Slower than usual, but I've heard that exeercise is good.)  Feel good mentally and physically after I do it.  Have first visit with rheumatologist on Apr. 29th.  Will see where I go from there.  This forum has armed me with much useful info to share with him. Sounds like you are doing well.  Good luck!
    • erika59785
      erika59785 ingo

      Posted

      Ingo, this might be long journey for you.  My symptoms started like yours, roatator cuff and tendonites.  I got shots....did physical therapy for a frozen shoulder --- which did not help.  Actually prednisone helped for pain and movement.  Later on I started to have extreme back pain (girdle area), and I could not get out of bed because of severe muscle and nerve infammation.  My GP put me on 40 mg of prednisone for 3 days and then a slow taper for a week until I reach 20.  From then on ----to avoid another extremly painful flare ---I will reduce ONE mg of prednisone for a month.  I am back to be able to go on bike for 10 minutes daily.....maybe tomorrow for 15.  There is hope!  I wish you good luck and no pain!
    • ingo
      ingo erika59785

      Posted

      Erika, thanks for the encouragement.  I'll know more when I meet with a rheumatologist at end of April.  In the meantime I am managing with not too much pain.  Only when I do certain movements.  Get stiff at night and am.  Not too bad by about 10am.  
    • judy50581
      judy50581 MaggiGrace

      Posted

      Thanks for the info. Hope all goes well with you. I have been taking the 5mg of steroids. I also take the extra strength Tylenol. I know I don't like the steroids, but what do you do. Can't live with the pain. Keep moving!!
    • erika59785
      erika59785 ingo

      Posted

      Rheumys usually like to encourage fast reducing......which did not work for me until I found this wonderul and informative forum of fellow sufferers.

      I made my mistakes, but now I have more knowledge about PMR which can be so painful.  Prednisone does help, but we need to deal with the side effects which appear with longer intake of the steroids.  It takes time to find the right dose to make you comfortable. All the best to you!

    • joey2
      joey2 MaggiGrace

      Posted

      Hi MaggiGrace. Be very careful taking that much Tylenol.  It can cause liver damage over time. I was told by doctor that steroid injections will weaken the surrounding muscle/ligament tissues with each inection. It has been my experience that if you up the prednisone dosage, you do not have to do injections. I guess, it depends on if the injury is part of PMR or another problem. Keep up the good work by walking.  It does help to keep our muscles (even the heart is a muscle) strong.
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