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I'm 50, diagnosed with PMR 2 weeks. 15mg pried really helping. Wondering about exercising again.

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Kittylitter
Kittylitter

I'm usually fit and active but spent 4/5 months undiagnosed and in pain. I'm keen to get moving again but worried that I could over do it and cause further problems. Can anyone help with their experience? Thanks so much.

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  • nick67069
    nick67069 Kittylitter

    Posted

    Basically I started with walks and streatching, combined with massage to help with pain.  It is important to start slow, and to be active several times a day ( 15 min walks x 3) for example...

    I have posted weekly reports on exercise progress in the discussion I posted link for...

  • EileenH
    EileenH Kittylitter

    Posted

    You can't really do any harm as long as you stick to a few basic rules.

    Although you feel much better with the pred because it is relieving the inflammation that leads to the pain and stiffness the pred does nothing to change the underlying autoimmune cause and your muscles remain intolerant of acute exercise which means two things: they won't tell you when you have done enough and they cannot recover as they normally did. You have to learn your limits and stick to them - or the next day you may feel as if you ran a 10km race without training! And even more embarrassing - since that tends to happen at home - you may be halfway along that extra bit of walk and feel as if you have just hit a brick wall and can't put one foot in front of the other! That's fine if there is a park bench to sit on for half an hour or a bus stop across the road but if you are a bit off the beaten track and can't get a taxi to pick you up, it isn't!

    I usually suggest starting by walking and planning the walk to go from one place where you can rest to another. Do it in bites - 10 mins, 5 out, 5 back and see how you are. Do it again later in the day if you still feel pretty good. But don't overdo it at first. Once you know you can manage that - add a couple of minutes. Rinse and repeat.

    My PMR started while I was still going to the gym - and I found that I was able to do less and less. I could no longer do step classes, I couldn't spring up on to the step! I found a different gym with a pool - and did aqua aerobics. I didn't do it at the same level as everyone else, didn't always complete the full session if I felt tired, but over time was able to build up to be one of the most active in the class - and that was with untreated PMR. After the class I was often able to do a Pilates or Iyengha yoga class because I could move again. If I used the gym equipment, which was rarely because PMR doesn't like repeated or sustained actions, I did just 5 reps at low level before going to another machine and then returned to the first. But I started with just 5 x once - to see how I got on.

    People who are still fairly fit and used to exercise usually do better - but a lot is to do with how long you weren't able to exercise properly. I had 5 years without pred and was very unfit by the time I got to try pred. It took me a long time to build up to anything.

    Go out and walk and see how you get on - but don't go mad until you get the length of what you can manage without needing 3 days to recover. At first I never exercised on consecutive days - I built up to that slowly - but you can and will be able to get back to doing lots - and there are some very active people on this forum who cycle and do a lot. But everyone is different in how they experience PMR and how they react to pred - so just because I can't do something and someone else can cycle 30km before breakfast doesn't mean you will be able or not able. 

  • pam7653
    pam7653 Kittylitter

    Posted

    Early in my PMR I was able to get back to exercising. Running, cycling, swimming etc. I had been up and down a year or so before diagnosis. I could hardly get out of my car or the couch, I was so bad. My first 2 days on Prednizone I was able to do it all, I felt like a million bucks.

    I've now been on Prednizone now for 3 years. Gone up and down a few times on the medication. I just recently was put on Methotroxate to help me decrease my Pred since I'm sitting at 7.5 mg and can't seem to get it lower. I've gone as low as 3 mg but had to increase each time.

    Kitty Litter, love the name!

    My suggestion is to keep as active as you can. The Prednizone will affect your muscles over time. I've lost muscle mass through the last 3 years.

    My feet recently were affected by PMR. I had horrible pain and had to increase again.

    I will attempt one more time this summer to run. We will see. I've been told if I get back to start gradually. One step at the time. Good luck.

    • danielle_65358
      danielle_65358 pam7653

      Posted

      Pam,

      Would you please explain what you mean by your feet have been affected by PMR?

      Lately I've been feeling pain in my foot as if I injured it but, I don't believe I did. It's the outer part below my ankle.

      Thanks

  • whitefishbay
    whitefishbay Kittylitter

    Posted

    I am 59 and have got PMR but still waiting for final diagnosis & prednisone. Started in Nov so I have put up w pain & am getting a bit desperate. I work 6 hours a day at a P C which is not good. I go home & nap/lay in bed as I feel sick or knackered. Then I get up & go for a walk. Try to get @ 8000 steps a day as I wear a fit bit. My shoulders are v v painful. Talk about not brushing back of hair! I look like I have aged 10-20 years. V pale too (due to anaemia & fatigue). Also a new pain is in my hamstrings. All night I have to stretch my leg out. Also hard to sit at my desk. Have to walk a bit. Last complaint is little itchy spots all over esp my back & front. Anyone else have this?

    Sorry to ramble/rant. I appreciate everyone on this forum 'listening'. Keeps me going.

    Any comments appreciated. Ultrasound on Friday to check bones then apt w my Rheumahologist after Easter. The waiting is v tiring.

    Thanks. Advice v welcome.

    Whitefishbay

    • Anhaga
      Anhaga whitefishbay

      Posted

      Whitefishbay, curious why you have to wait so long for the medication.  Generally it seems that confirmation of pmr is made by a short term of prednisone to see if it rapidly alleviates the symptoms.  I was undiagnosed for over a year and continued to do all the exercises I was used to, even tryng more as I thought I needed to because of the stiffness (silly me).  I do agree that it is important to remain as active as possible, but whether treated or not treated you need to follow the advice Eileen gave to Kittylitter which is to pace yourself and make sure that for every activity you allow yourself a period of rest.  (This might become even more important after you start pred.)
    • andypolly
      andypolly whitefishbay

      Posted

      I don't understand why you're not already on Prednisolone. I was diagnosed on day one, bloods the next and Pred the day after. Started on 25 on Christmas Eve, down to 13mg now. Did very little exercise till this month. Now cycling 25k 3 times per week. Pain under control, but know I will need to be cautious when I reduce to 10 and below. Going down in 1 mg steps every 3 weeks. I think you really need to listen to your body, listen to Eileen and treat your doctor with suspicion!
    • whitefishbay
      whitefishbay andypolly

      Posted

      Well it took six weeks to get an apt with the rheumatologist.  Then she was not sure as she said that she did not want me on prednisone if I did not need to be.  I did receive one steroid injection which was a huge help.  I went from feeling like 2 out of ten and now as it wears off I feel 4.  It is wearing but I realise it could be worse.  

      All your replies help keep my morale up. Everyone seems so positive and energetic (how do you do it)?

      Thanks very much.

    • whitefishbay
      whitefishbay andypolly

      Posted

      Yes I have now been in pain/discomfort/agony since early November.  Maybe it is just the NHS and the waiting lists.  I am tired and also only go to work, take walks and never go out.  Reclusive.  Roll on spring and warm weather.
    • andypolly
      andypolly whitefishbay

      Posted

      I saw a locum at my GP practice. I went in thinking I was the worried well and he diagnosed PMR immediately. Hassle your GP! There's no need for consultants for PMR diagnosis and a positive reaction to Prednisolone is part of the diagnostic process.
    • Anhaga
      Anhaga whitefishbay

      Posted

      I, like a number of others on the forums, remained undiagnosed for an extended period of time, so I certainly know how you are feeling - that was me a year ago, except I'd never heard of PMR, or if I had, dismissed it as I couldn't believe I'd have anything serious enough to require steroids.  It may be a good thing that the rheumatologist is being careful about introducing the steroids and making sure of the diagnosis, but the wait seems unconscionable.  While they are at it, are they going to do a DXA scan to check your bone density, especially if you are likely to be prescribed pred?
    • andypolly
      andypolly whitefishbay

      Posted

      I'm I'm Oxfordshire and I had to wait 4 weeks. I'm happy to take the Alendronic acid as they found osteopenia in one hip. Also taking calcium and vitamin D.
    • Anhaga
      Anhaga whitefishbay

      Posted

      I had to wait a month, but I'm in Canada.  Also I did have to ask for it and I'm glad I did as I was diagnosed with osteopenia so it was a real incentive to up my game regarding nutrition and exercise as, unlike Andypolly, I am not one bit interested in taking a chance with any of the osteoporosis drugs.neutral
    • EileenH
      EileenH whitefishbay

      Posted

      How long is a piece of string? It all depends where you live and what medical system you have. You are in the UK I assume?

      Presumably you have no choice with your rheumy? If you benefited greatly with a steroid injection then that is a sign that this could be PMR - one group in the UK at least feels it is a good add-on to the clinical decision if the patient responds dramatically with about 70% improvement in symptoms within a short time to a moderate dose (15mg) of oral pred which then return in a similar time frame on stopping that dose after a week. The description of this in in the "links post" under the heading of Bristol paper. 

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      It is aimed at GPs to enable them to diagnose fairly obvious cases.

      I became like you during the 5 years I had PMR where a GP was unable to come up with any ideas as to what I might have - bloods were all "normal" so that was it as far as he was concerned. In retrospect - I'm very glad it wasn't any of the nasty things that a GP should have been ruling out. I suppose he thought he was. But my life was very changed to accommodate what I could do - and I didn't go out anywhere I couldn't drive to and park close by. I went to the gym - that was my sole outing really, and the aqua aerobics kept me semi-mobile. But it did nothing for the pain.

      I also saw a rheumy who wasn't convinced - but he DID offer me 6 weeks of pred to get me through a trip to the USA. I was fine all the time I was on it - 30 hours after taking the last 5mg tablet I was in bed, unable to move and in tears with the pain. Fairly conclusive evidence this could well be PMR in fact but he didn't want to know, he wanted it to be anything else. Luckily a different GP in my practice - who I hadn't seen as she only worked part time and had been repeatedy on maternity leave - was convinced enough it was PMR and provided pred. I never saw the rheumy again. The doctors here in Italy where I now live accept what I have is most likely to be PMR - and are totally realistic about the need for pred. I had a conversation with one this morning to the effect that, "yes, it would be nice if it went away in 2 years as many doctors think but it doesn't work that way does it?"

      Sorry this is all in one as a response to various posts - I couldn't get on the forum yesterday.

       

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