1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

PMR & Exercising

Posted , 9 users are following.

karren61208
karren61208

I'm new to PMR and this very helpful forum. I understand now what a huge range of conditions PMR suffers have thanks to this forum.

My PMR diagnosis was just confirmed in early July after getting symptoms in Nov 2014 and going from doctor to doctor. I thought I had Lyme Disease.

Before symptoms hit, I had a regular daily routine of stretching, yoga postures, light weight lifting. I need to lift weights because I also have osteoporosis. I also walked 45-60 minutes most days and occasionally went swing dancing. I'm 68 but have those genes that make me look and feel lots younger.

My chiropracter and husband are driving me nuts saying use it or lose it but my physical therapist and new rheumotologist (3rd one and she is good) say don't overdo, just do what you can. 

I can see from the forum my situation is not so bad but I need help getting focused on how to exercise so I don't end up with what seemed like pulled mulscles in my leg like I had just before I started prednisone. It got so bad, I was thinking I needed a cane. Now I'm moving around fluidly but when I get tired, I start limping. 

0 likes, 16 replies

16 Replies

  • Bert5560
    Bert5560 karren61208

    Posted

    How did you finally get a diagnosis? I've been to Rheumatologist and Endocrinologist and have had numerous blood tests. I'm a 60 year old female who has exercised regularly for years, lifting weights etc.. I tore my rotator cuff and that's when I startd to get stiffness and pain everywhere. My sed rate and crp are within normal levels so I don't even get a trial of Prednisone! I have had an elevated Hgb A1c, thyroid levels off intermittently, and low in vitamin D. I don't know if thyroid issues are causing some of this or what.I ahven't been on this site for awhile and would like to hear more stories like mine. Thanks!
    • Nefret
      Nefret Bert5560

      Posted

      Perhaps your Rheumatologist should be informed that roughly one in five patients with PMR don't have raised inflammation markers (acute phase reactants in their language),

      I should know as I am one of them - never had raised markers since I started on this journey, and that is a long time ago.  Had all the other classic symptoms and the initial dose of Pred was like a miracle.

      I also am hypothyroid and that was diagnosed at much the same time as PMR.  No problems since the dose of thyroxine was stabilised.

      Perhaps you could download the BSR Guidelines for the management of PMR and take them to your GP/Consultant to read?

       

    • lodgerUK_NE
      lodgerUK_NE Bert5560

      Posted

      Bert

      Go to the http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316 or enter into the search engine on the page, Diagnosis and Treatment of PMR.   Download, read and head back to those medics.  Waive it under there noses and say - right you don't know what it is -  have you have done all the exclusion tests and and why have you not given me Dekristol to raise my Vit D level to where it should be as low Vit D causes aches and pains just like PMR.  If when the Vit D level is correct and the symptoms still persist,  you then  want a trial on 20mg of pred for one week, if the symtpoms subside it is PMR.

      .  Your ESR and CRP do not have to be raised, in many cases they never are.   Educate your medics.

  • lodgerUK_NE
    lodgerUK_NE karren61208

    Posted

    Go to this link, http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316 ; takes you to the pinned section of this thread on this website.   Follow the link there to the North East website and on there you will find exercises designed for PMR patients. 

    Use it or lose it does not apply with PMR.  However, Tai Chi, Nordic Walking,  Aqua Aerobics, Yoga, all providing you explain you have PMR.

    Bowen Therapy also is brilliant.

    PMR means that the blood supply to your muscles is not up to scratch and pushing it too hard means you run into more problems and it takes longer and longer to recover.

    PMRpro (who currently is in China) would explain it to you better.

    If any physio, exercise person ever says to you, use it or lose it, no pain without gain - dump them fast.  They know nothing about PMR and should find out about it.

    Leg claudication is a bl***dy nuisance, some people find that after 10 minutes walking they have to stop and rest (those shooting seats are good),   start out at 10 mins per day and then gradually build up till you can do 45mins without it.

    Learn to listen to your body and act accordingly, PMR will pay you back full on if you persist. It has a mind of its own and as each of us are different we have to leearn and knowledge is power.

    One more thing, whenever you feel that something is wrong, don't put it all down to PMR and Pred. 

    Good Luck and keep on coming back and asking the question.

    • karren61208
      karren61208 lodgerUK_NE

      Posted

      Wow, thanks so much for this helpful response and clue for finding the discussion on exercise on the northeast website. I'll look into Bowen and physio shortly.

      Luckily with all the yoga I have done since my 20's, I do listen to my body but it's so confusing to get these dire messages from people who truly care about me. 

      Yes, a lot to be said about using common sense as long as your mind isn't clouded up with background pain which is what might seems to be for the most part. Now I'm going to go out for a walk and I'm taking plenty of water. 

    • lodgerUK_NE
      lodgerUK_NE karren61208

      Posted

      karren, the clouding we call 'steroid brain fog' or 'treacle brain' it does get better and it does come and go.

      You get the confusing messages because until they get it (and I would not wish it on my worst enemy) and you don't look ill, they just do not understand.  Education of family and friends is a slow process.

    • karren61208
      karren61208 lodgerUK_NE

      Posted

      Already educating my loving hubby who is in the education field! 

      That foggy brain thing is a real nuisance. However, today I felt energized by finding you and the others here so I got a few things off my to-do list and now I'm feeling happy if not glazed over.

  • tina-uk_cwall
    tina-uk_cwall karren61208

    Posted

    Hi karren, simple answer, do everything you used to do, but in moderation. All that you've mentioned can only do you good but it's about not over doing it. Regards, Christina 
  • EileenH
    EileenH karren61208

    Posted

    Lifting weights does not help precent or reverse osteoporosis - it is WEIGHT-BEARING exercise that is needed. Your walking and dancing are the important things.

    However - your muscles are intolerant of acute exercise, and repetitive actions such as used in weight lifting are particulalry difficult with PMR. If you do too much you will take days to recover, do a lot too much and it may take even longer. You have to learn your limits and stick within them - increasing VERY slowly is possible but we are talking about 5 mins more per week not 5mins per day!

    • karren61208
      karren61208 EileenH

      Posted

      Thank you, Eileen, for your advice on weight lifting. I am having a hard time understanding what a good routine for me might be.

      I definitely err on the side of caution relative to weight lifting. Last two days I have walked 2-4 miles with seemingly no adverse reaction. I'm also trying to pay attention to my water intake.

    • lodgerUK_NE
      lodgerUK_NE karren61208

      Posted

      Eileen is the lady I was referring to who is currently in China.

      Eileen also collaborated in writing the booklet 'Living with PMR & GCA'.

       

    • EileenH
      EileenH karren61208

      Posted

      Then concentrate on the walking and worry less about the weight training! It seems to be a US thing - it is perfectly possible to keep active without using a gym and it saves a load of money!!!!!!!
    • karren61208
      karren61208 EileenH

      Posted

      Eileen,

      I'm glad to hear your advice about gyms and weight lifting. I don't like those places but I have some of that equipment available to me in my condo exercise center. My PT guy recommends that I use a stationary bike that also moves the arms and that has been a helpful alternative if the weather is bad and I can't go walking outside.

  • LayneTX
    LayneTX karren61208

    Posted

    Hi Karren,

    my muscle strength and atrophy is so bothersome to me, I fear it, so Rheumy sent me to physical therapist. I was scared at first, didn't know if they understood PMR.  They are working my posture, strengthening muscles to support my hips and shoulders.  We do NOT do anything that hurts in the 8 pain spots I have. 

    Im am successfully lifting 12 lbs dumbells for my biceps. I use resistance band for my triceps.  They do not bother my PMR areas.  I avoid what hurts.  I'm still in 70% pain in mornings, but feel stronger in areas I'm working and they are not the pain areas.

    They are really strengthening my gluteus, and posture, that has helped me stremedously to be able to squat, amazing how often we squat to pick things up HUH? 

    I still have most original pains if I use those PMR a muscles (I'll say muscles), NOT  the 100% pain however. 

    the PMR area in bottom of butt or top of hamstring has subsided for most of the time since I've done the workouts...only exception is driving in my car for over 1 hour, then it gets uncomfortable...but not as much.

    hope this helps. 

    Layne (54, female, Pred. 8 mg, hypothyroid too, had low Vit D)

     

    • karren61208
      karren61208 LayneTX

      Posted

      Layne

      This is very helpful. I think I'm going to print your comments out & show them to my PT guy.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.