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Can exercise cause PMR flareups?

Posted , 8 users are following.

bob73443
bob73443

I have been struggling with PMR since this March, and have only been on prednisone for about 3 months.  Awful pain and agony before then.  Now it's not too bad.  Started at 60 MG, weaned down to 8 MG over the 3 months, but now I'm back up to 15 MG.

Prior to going on prednizone, the docs told me I should exercise as much as the pain allowed, but it hurt too much to allow hardly anything.  I used to walk, strenuosly, about 3 miles a day before exeperiencing the pain in March.

Now, with the prednisone helping with the pain, I started walking strenuously again.  I was actually down to 8 MG when I started walking and the PMR flared almost immediately.  

Here's the question:

I don't know if the flare was because of the decrease (from 60 MG to 8 MG) too fast -- over a period of 3 months -- or because I started walking again.

Last week, feeling iffy but not too bad, I did a 3 mile strenuous walk at 10 MG and the very next day felt awful.  Felt awful the day after as well. Finally went back up to 15 MG and now I'm okay again.

Can exercise hurt me -- actually causing a flareup?

1 like, 12 replies

12 Replies

  • tired_lady
    tired_lady bob73443

    Posted

    I find if I push myself at anything I have days of feeling quite poorly.  Thought I had learnt  lmy lesson, but recently on holiday, walked further than normal and this last week I have been good for nothing!  One day I will learn.
  • EileenH
    EileenH bob73443

    Posted

    Yes - PMR causes your muscles to be intolerant of exercise. When you exercise/train you are actually causing damage to your muscles - tiny tears that then heal and make the muscle stronger or trained. In PMR they don't heal anything like as quickly and hurt for much longer because they are inflamed. In PMR walking hard one day is more like an untrained person running a marathon. You need time to recover - more than you used to. 

    60mg is a very high dose for PMR - it is the normal starting dose for GCA to avoid blindness. Normal for PMR is 15 to 20 mg/day. If you follow this link to another post on this forum you will find links to useful places to get info and other forums.

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

    The final link in the first post is to a paper by experts from the Bristol UK rheumatology group with their tried and tested reduction scheme. You will see they start at 15 for 6 weeks, 12.5 for 6 weeks and then a year at 10mg - they find this reduces the rate of flares to 1 in 5 instead of 3 in 5 with other schemes. 

    I would suggest that either you could stay at 8mg for longer - but keep the exercise GENTLE rather than strenuous, and building up gradually not diving in to advanced stuff straight away or return to 10mg which will probably allow you to do a bit more. And water-based exercise is a good way to build your muscles up more gently.

    • Jersey_Royal
      Jersey_Royal EileenH

      Posted

      Thank you Rileen, But I do have GCA//PMR and what you tell me about excercise does make a lot of sense to me, I have been doing too much.Although this week I decided to have a week off no Pilates or (Legs, bums& gums) gym.  I havn't slept as well though.  But still have the back problems,   went to chiropractor today and suggested to her your thoughts that it May be myofascial pain, or pisiform is mudcle

      she didn 't comment smiled and gave me some stretching excercises

      (which are given to rugby players)!!! I'll think I'll pass on them, & just do gentle stretching ones.

      the main problem is the decreasing or increasing of Steroids, all my blood tests have come back OK  but that's  not a true test I don't think?

      so onwards & upwards, & listen to my body.

      thankyou Eileen you have been really helpful.

       

  • mary68968
    mary68968 bob73443

    Posted

    Hi Bob,

    I have been on pred since March too, but not on such a high dose.  Started at 15 & am down to 10, but have had great difficulty decreasing right now even by 1/2 mg. so I am staying put at 10 for now.  I cycle almost daily (68 yrs old) sometimes 10 miles & sometimes  just 20 or 25 minutes.  Depends on how I feel, but I have found cycling a life saver as it is not as hard on your body as other activities & I just don't do well without exercise.  Just a thought.  Good luck.

     

    • EileenH
      EileenH mary68968

      Posted

      I'm sure you have read my response to Bob about the state of our muscles in PMR and the advice from the Bristol rheumatology group about remaining at 10mg for a year. 10mg seems to pose a problem for many people - it may be because you are down to the realms of the amount your body produces naturally (equivalent to 7.5-10mg).

      Nevertheless, the pred is only helping you MANAGE the PMR and the rest is up to you. If you really want to reduce from 10mg - and I'm sure your rheumy will want you to, then you need also to moderate your exercise. I'm not saying stop altogether and I am totally in awe and jealous of anyone with PMR who can do that much but nothing takes away the fact that at the moment you need to allow your body to recover between exercise sessions. All the pred is doing at present is taping over the wounds the exercise inflicts on your muscles but which aren't getting a chance to heal. In the long run you are defeating the object we are all aiming for: the underlying autoimmune disorder that causes the PMR going into remission. It is damaging your muscles anyway, the amount of exercise you are doing is contributing more to that damage.

      Quite a few of us who have "carried on regardless" found that when we rested more and avoided anything that aggravated the condition we were able not only to reduce the dose - but the whole thing calmed down and some have already got to zero pred. Our "Queen" of "precious princesses" woke up one morning after a few months and realised she felt different - pain-free and energised for the first time for years. She's now nearly down to 2mg - after 4 years of fighting to reduce. Neither she nor I think it is coincidence. It's happening for me too.

    • mary68968
      mary68968 EileenH

      Posted

      Thanks Eileen, I will take that into account.  I really hadn't tought about it that way.  Figured if you could do it.. "go for it".  A rather competitive  sort I am.  Also thought with the blood tests normal last time I could push a little more, but did wind up with aching shoulders one night recently, which was a most unpleasant reminder.  See doc at the end of the month with blood work etc.  I am hoping for results just like you the "Queen".  Perhaps I'll stick to the 25 minute rides.  My husband, who I ride with, seems to think we are in training for the Tour de France. :-)
    • bob73443
      bob73443 mary68968

      Posted

      Mary and Eileen,

      I'm very discouraged about the exercise factor.  Yesterday,I walked 2 miles at a relatively slow pace -- 3.5 mph (sorry but I'm from the states).   I live in the mountains so it's 1 mile uphill, and then returning downhill.  It felt good.

      But today I am exhausted, and hurting a bit.

      I don't know how I'm going to keep my heart in shape.  Maybe a stationary bike.  Swimming pools are too far from me. I'll keep reading what others have to say about this as well.

      Thanks!

    • mary68968
      mary68968 bob73443

      Posted

      Hi Bob,

      A stationary bike is an excellent idea.  I have one & use it in the winter months. You can get used one for a good price.  I have had times like what you are experiencing & I just don't do much during those times.  Just prior to & right after being diagnosed I became a couch potato, which was a little scary.  Just do what you can & know that they way you feel won't last that long.  There were times at first I thought...is this the new normal, but it wasn't fortunately. 

    • EileenH
      EileenH bob73443

      Posted

      Hehe - most of our generation in the UK only do miles so don't worry and absolutely no need to apologise! I'm a scientist and now live in the north of Italy so manage fine with both.

      Don't worry in the short term about your heart. I live in the mountains too but we can walk along the river in the valley bottom (a high valley obviously) so the up bits are fairly gentle. If I go sideways it's much steeper and that is kept for very short bits - like the local restaurant that has a short hard uphill bit right at the end. We walk there, about 40 mins, have a good long lunch break and then walk back. 

      I don't do pools here - they are just plain too cold for me. If it is under about 27C/80F my muscles just seize up. I had a few sessions in the physio pool at the hospital which were brilliant but that was limited so it was back to walking. 

      It is really a case of identifying how much you can do without hurting next day. That 2 miles is too much - halve it and see how you get on and then build up the distance very gradually if that is OK. And have a day off in between. As Mary says - this isn't for ever, it will get better. Two years ago I couldn't get to the village without struggling - a whole 300 yards. And only on crutches - I felt as if I was about to collapse if I hadn't got them! I still took them with me when I was building up the distance - always raised a laugh as I carried them under my arm! By last summer I could walk over 2 miles in each direction on the flat around Lake Garda with a rest halfway in each direction and lunch. Now I can do that with hills too as long as they aren't too bad. The walk we do every day took 45mins at first, now it is well under half an hour.

      But learn to listen to your body - and anticipate its needs.

    • bob73443
      bob73443 EileenH

      Posted

      Eileen,

      I've always wanted to visit Italy!

      Thanks so much for the encouragement and advice.  I guess the 3 miles at 4 MPH up a mountain was too much, eh?  HaHa.  It felt like I was going to DIE the next day.

      I'll try a mile, with a days rest in between.  The stationary bike is okay (I have one), but it's too beautiful to be inside this time of year.

      Again, thanks.

    • EileenH
      EileenH bob73443

      Posted

      If I had one I'd stick it on the balcony ;-) I had a session on the stationary bike the other day at the hospital for a stress ECG. My legs let me know believe me - but I didn't feel too bad the next day so something must be going well! However - it reminded me why I don't really like cycling...
  • MrsO-UK_Surrey
    MrsO-UK_Surrey bob73443

    Posted

    Bob

    "I don't know if the flare was because of the decrease (from 60 MG to 8 MG) too fast -- over a period of 3 months -- or because I started walking again."

    Probably both!  The steroids aren't curing anything, they are just damping down the inflammation that causes the pain until PMR decided to go into remission.  The more you exercise, the longer it will take to reach remission and the more flares you will experience.  A daily walk is excellent, slowly building up the distance, but certainly not a "strenuous" one if by that you mean very fast.  Also starting you off on the very high dose of 60mg for 'just' PMR was totally unnecessary, especially considering the unnecessary risk of side effects at this high dose.  A leading professor in research into PMR and its treatment recently said that 12.5-25mg of steroid is the recommended initial dose and that there was absolutely no use in even 30mg.  If you can recall the dose at which you last felt really comfortable then once you reach that position again, it would be better to remain there for a good month before trying a further (smaller!) reduction........and easing up on all thngs "strenuous"!  

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