PMR and keeping physically active

[calibriel]

Does anyone else find their level of physical activity is linked to their level of PMR? Do they find activity makes it better or worse? I used to suffer from osteoarthritis - successfully treated with a hip replacement - and found it was better if I could keep the joint moving. My experience of PMR on the other hand is conflicting. The first onset and this current flare happened at times when I wasn’t swimming because of the pandemic, but, if I am in pain, activity seems to aggravate it.

[DorsetLady PMRGCAuk volunteer]

Muscles are much less resilient when you have PMR, so it takes very little sometimes to aggravate the illness.

Couple of posts might be useful -

general info on your illness -

healthunlocked.com/pmrgcauk...

Exercising - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

You CAN exercise - but you should avoid anything you know aggravates your pain, such as shoulder action in swimming for example. Everyone is different.

But you must also "train" - you need to start at a very low level that you know doesn't cause pay-back next day. For example, if you are fine with a 10 minute walk on the level, start there: 5 mins out, 5 mins back. Rest next day to assess how it was. If there is no pain/exhaustion, add a minute to the outwards walk, that's an increase of 2 mins. Assess on the rest day. Keep doing that until you feel it on the rest day then drop back to the previous time and "train" at that for a time. Then add again if you haven't reached the duration of walk you were aiming for. The rest days and assessment are really important. You don't have to do nothing on the rest day - just use different muscle groups. When you start to add in inclines, don't push it too hard and don't change inclines up AND add time at the same time. Only change one thing at a time.

Whatever you do though, don't ever try to push through tiredness or pain and if you have residual pain on the rest day wait until it has resolved before doing much. Training involves micro tears in the muscle which heal and leave the muscle stronger - but in autoimmune disorders affecting muscles, like PMR, they don't heal as quickly and if you exercise while in pain, you won't get out of pain. Your muscles need a lot of TLC at present.

[calibriel in reply to PMRpro]

Ah - that just goes to prove that trying to sell our current house and move to somewhere with level access is a good strategy. At the moment we live on a steep hill with a number of stone steps up to our front door … thanks for the advice

[PMRpro Ambassador in reply to calibriel]

Before I was diagnosed I could barely get up stairs at all - if I couldn't drive somewhere and park at the door, I couldn't go. Then I was (wrongly) told not to drive for 6 months for something else and I was totally stuck, kitchen downstairs, only bathroom at the time upstairs with very steep stairs, I could eat or work/go to the loo! I was able to get here to our flat - 2nd floor but with a lift and of course all on one level. As soon as stairs were taken out of the equation I was able to walk to the village, small slope to the square, and catch the ski bus to the lift. I had my skis and boots in the store there so could walk in prdinary shoes. I could get to the top of the mountain and after two very short blue runs I could move almost normally! You wouldn't credit the difference it made.

It will get better - if you go about it the right way. But don't try to push it too far - PMR always bites back.

[FRnina in reply to PMRpro]

Yes! go slow and carefully is the mantra for this illness. A big test of patience though. I've just had a scan which confirmed a big relapse after a medication-free run of a whole three months. (did all the right things with dead slow taper etc.). Why? who knows. Like a game of snakes and ladders a big long snake swallowed me and landed me back at square one. Bah! However, onwards and upwards: this time already armed with loads of experience and information gleaned from this wonderful forum and all the contributors on it. Ever grateful!

[PMRpro Ambassador in reply to FRnina]

Why? A return of symptoms after 3 months is absolutely typical of the underlying disease activity being at a really low level but not burnt out entirely so that even 1/2mg is enough to keep it at bay but zero allows the inflammation to build up until it is enough to cause symptoms again. That's why Dasgupta says he keeps people on 2-3mg long term to prevent relapses. It doesn't matter how slowly you go - if the autoimmune part of PMR underlying the inflammation is still there you won't get below the dose you need - even if it is 1/2mg every other day!

If you are lucky you will shoot down the doses - and I would have tried a much lower starting dose had it been me to see if it worked.

[FRnina in reply to PMRpro]

Thanks for encouraging reply. I was actually off prednisone for 10 months but continued with Tocilizumab which was gradually tapered and stopped three months ago. My French rheumatologist did say 50% can have a relapse after stopping Tocilizumab. She set the new schedule after the scan results starting at a high 40mg with a fortnightly reduction to follow parallel with taking weekly Tocilizumab. She knows of Dr. Dasgupta and we discussed his methods. I don't know how differently things are tackled in different countries but anyway she is very open to working something out even if it means a compromise in her method (I think). I'm very open for a retaining low dose of prednisone (after I get tapered down ) and I'm going to propose that as a possibility at my next consultation. Everyone is different as you so rightly say.

[Greengarth]

I’ve had three cycles of PMR over the last four years and during that time I have exercised 3/4 times a week at the gym and swam. I obviously never did anything painful, but never noticed any impact on PMR when I stopped exercising, for example when on holiday.

Currently on 11mgs Prednisone and working out four days a week for 40 minutes/day. Symptoms are heavy legs, slight lightheadedness and lack of confidence in my balance. Once again, no apparent difference between an exercising routine and a non-exercising routine. The qualification to this is; if I do something strenuous where I am fully involved in the job - digging the garden for example, and lose track of time and effort- I will have the above symptoms with avengeance. The balance problem has however limited my willingness to use my push-bike.

[Sharitone]

I don't want to be a wet blanket, but I find that any effort at all leaves me knocked for six. Maybe the PMR, maybe the meds. But certainly I think that doing anything that causes pain is asking for trouble. After all, if your tendons are inflamed, they're not going to like being stressed, are they?🥴

[Sharitone]

Oh sorry! I thought I was replying to Calibriel!

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

Think it was me actually, you were…..will delete mine…

[Sharitone in reply to DorsetLady]

Though it still applies.. we are all different, and I did think twice before sharing my experience. I wondered if it could discourage or confuse more than help

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

No, I think people like to hear others experiences….

[Raven1955]

Yes, in my experience the amount of physical activity you can achieve is totally related to your PMR and your prednisone level. It's a constant balancing act to find what your body is allowing you to physically accomplish at the current prednisone level without throwing off the balance and awaking the PMR gremlins.

I am at 5.5 years with PMR and have worked full time for the most part. Do to much and I pay the price. Do too much with the arms or legs and the micro tears in the muscles take much longer to heal and I have to dial back my level of work or pay a worse price even longer. A very gradual reduction in prednisone still requires attention to the level of physical activity. I may keep my work level stable but sometimes the 1/2 mg reduction is enough to cause the pain to flare a bit and set back my reduction schedule. I'm at 3.5 mg of pred and won't even go into the added complication of sleepy adrenal glands that leave me exhausted for longer periods if I push the limits too hard.

Suffice it to say that I spend my weekends "healing" and resting so I can deal with the next 5 days of work, abeit at a much lower level than one would like. Superman left on the train a long time ago and I pay very close attention to any snarling and snipping from my body and adjust accordingly. Every pain means something and we aren't blessed with the ability to push our way through pain anymore without paying a heavy price. Find that happy balance of physical activity and keep adjusting - nothing stays the same for too long!

Good luck to you.

[calibriel in reply to Raven1955]

Thanks for the advice. I think my current flare was exacerbated by trying to walk to my evening class - which I would normally be able to do, no problem - and ignoring the niggles that were the first signs … because I didn’t know any better. With osteoarthritis, which I suffered from for years before surgery, you walk through the pain - within reason, using painkillers if you have to - and it usually eases. Keeping the joint moving actually helps. This is obviously different.