Prior to the pandemic I (without any enthusiasm, it has to be said) used to go swimming and to the gym. After Covid restrictions were lifted I didn't go back as I have always been very cautious about Covid even before I was diagnosed with PMR. I feel that I should now start exercising again but I'm unsure what to do and how to get started. A few years ago I did Pilates for a while but I don't think that I could manage that now (and I didn't enjoy it anyway). I wonder whether gym work would put too much of a strain on my body with PMR still active.
I'd be interested to hear people's thoughts. Is walking enough?
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Siena62
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Personally, if you can, I would start off with walking and see how it goes. Short distances at first and then gentle increase as it gets more comfortable. Don't forget when thinking about how far to go, that unless it's a circular route you have to come back again. If possible a route which has places you rest if/when you need it. A conveniently placed cafe is always good. I'm sure others will come with other exercises you can do at home to gently build up other muscles. If it starts to hurt then stop, you've done too much. Gently does it is the mantra.
hi just wondering have you had any girdle pain when walking ,my hips and along my lower back is awful never had it before it started when the doctor dropt me from 20 mg predict to 10. They put me back to twenty when all the pain came back but it’s never gone away I’m now down to 15 mg and in two weeks will be down to 13 mg. Just wonder if anyone else has this sort of pain it’s only there when I walk for more than 10 minutes
WOW a drop from 20mg to 10mg is way to big a drop, i went from 20 to 15 and had a massive problem with it every bit of pain returned, if you look through the posts on here there is plenty to be said on how to drop you pred doses. personally what worked for me is from 20mg drop no more that 2mg a time something like every 3 weeks. at around 14mg drop 1mg a time every 3 weeks or so. The above is what worked for me. nothing is writed in stone. every drop will cause a little blip to your system, if pain returns, you may have to go back to the dose before the drop. The 3 week worked for me it may have to 6 or more. dont rush it. once you get below 10mg your own system should start to kick in, but this is very slow if you have been of pred for quite a while. At around 5 to 6mg you are very likely to experience extreme fatigue, dont confuse this with pain. Pain you might need fore pred. Fatigue is your adrenal system not supplying you properly and the steroid from the pred not propping your system up enough. Your system will kick in but maybe not until your nearer 2 to 3mg. from around 6mg drop by half a mg at the most. This is where im at, at the minute. Good luck. Take care 😀
Although I don't "need" a walking stick I always use one when out walking. It helps stability and also prevents back pain. I have one of the telescopic ones so I can adjust it to the correct height.
Walking is good - and can I ask why you didn’t like Pilates?
I started it in 2014 when still on Pred for GCA but realising legs in particular were getting get very weak.
Found a studio and had a one on one taster lesson with teacher -then joined class. She only has room for 6 max so individual attention -it was hard work initially-but (apart from covid lockdown and 2 trips to NZ ) have been going ever since -got me through 3 joint replacements…
The issue with gym work is it can be too repetitive for PMR affected muscles.
I didn’t consider putting one foot inside a gym until I was ready. I began my GCA journey extremely fit at 54 but the mix of reduced activity and Pred effects on muscles had a huge effect. My main goal was walking fast for a good 3-5km and maintaining/achieving full range of motion of muscles and joints until my muscles became less prone to injury. This took about 18 months after I finished Pred. I had to get specialist advice because my pelvic floor failed but it was found that my hip strength and abdominal muscles were lacking. We are all different however, but I’d say don’t go to the gym to quick start your fitness without finding out where you are with walking well and basic exercises to build up.
No. I suspect it has been a mixture of being 6 years older, initial high doses of Pred, Covid x4 including long Covid for 7 months in 2020. The Covid in July 2022 pit me in hospital seemed to eat my muscles and upset my gut. My third Covid vaccine in Jan 2022 also caused three months of feeling ill with neurological pain. All in all 2020-2022 wasn’t the best for a big comeback.
I found Pilates dull and I also found it very difficult as I'm naturally quite stiff and inflexible. I didn't enjoy getting up from and sitting down on the floor. I found that some of the exercises put a strain on my neck.
I can walk fine, although I can feel a bit stiff when I start. I can easily walk for 20 minutes or so without getting tired. Currently, my energy levels are good and, strangely, possibly better than before I developed PMR. I've actually wondered whether the steroids (I'm currently on 5mg) have given me something that I was previously lacking or whether the previous low energy levels were the remnants of something else.
Okay.. luckily I am (and still was during GCA) flexible.. fortunately the studio I use has "relaxer" benches so no getting up from floor ,although first couple of years I did... and as I said because of such a small class virtually individual attention... so if anything hurts certain parts of the body, the therapist/teacer finds a different way of doing things..
That sounds like a great class! I enjoy Pilates and yoga, too and do those in the morning. There is a beautiful lake near me, only a half of a mile walk. I go there, do Pilates or yoga and then walk back. The turtles and birds supervise. I do find the exercise can "take you out of your head" for a while.
Your flexibility will improve - especially if you are warm going into the class - use the steam room first maybe. I did if I couldn't do aquafit first.
I found the joy of Pilates was my instructor did a choreographed programme over a period of weeks and you needed to be very mindful of what you were doing plus she adapted anything for problems. You do need to find the right teacher though I think.
Walking is good, you can control the distance and speed, and build up slowly as you improve.
My mum, who has mobility problems, goes to aqua aerobics with a friend who has PMR. She says they only do what they can manage and enjoy it. A recent search (I'm thinking about it!) brought up a session aimed at 'recovery and health and wellbeing participants'.
If you want to try stretching and strengthening exercises at home there are videos on the Internet. The Versus Arthritis site is worth a look too.
I was diagnosed with PMR May 2021, but the symptoms began in Jan 2021. I am a runner and until the pain started, I was running 8 km every other day and getting ready to train for another half marathon. Once the pain started, I was lucky to be able to walk my dog in the early evening - unable to walk in the morning with my husband and dog. Once I started prednisone, I was walking/running with my dog on trails, but I stopped doing that once I got lower on the prednisone, not because I had pain, but just that I realized that I couldn't be taxing and stressing my body like before. As well, I was diagnosed with osteoporosis in my spine, so I have decided to focus on walking as the weight-bearing exercise I do. I'm lucky in that I can walk between 4-5 km twice a day - having a dog makes me get out!
I did have a physical therapist come up with weight-bearing exercises specific to my osteoporosis but don't do those as often as I should. I used to do pilates and loved it - I have been meaning to do some youtube pilates sessions for people with osteoporosis.
So, I think walking is a great exercise for PMR and I think it's enough, from my experience anyway. I hope that I can return to running once my PMR goes into remission, but I'm going to be very careful about starting running again and I'm being very patient about it.
I find gentle swimmers good- the warm water relaxes my muscles and makes me feel better am slowly building up the lengths - can only do crawl as have bad knee aw op.
I did do Pilates and the teacher is v good find it v hard and it takes me a few days to get over a class- and can’t do any kneeling exercises but they always offer an alternative
Walking v good especially if you vary the terrain as well to give you a more challenging workout
Walking is a really good start. Following a knee problem in early 2021 I managed to work up to 3 miles over the next two years with one set back and now having another set back as I have just had to stop due to what is now a severe knee problem which I am waiting to have diagnosed/treated. What about aqua-aerobics? I am seeing a somatics practitioner next week - very gentle movement to relax muscles and mind and slowly increase mobility. I would like to try pilates but no class near me. I have an exercise bike and I do get on that occasionally at low resistance which is all I can currently manage. Anything we can do to keep us moving is worth it. I know I shall need to strengthen thigh muscles and will be tackling that next.
I have a friend who is now mid 70s but has always taken exercise seriously to keep herself going. She walks her dogs, goes to yoga classes, ballet classes, tap dancing classes. I admire her but I have other things to do a lot of the time as well.
Walking is excellent - have you any access to aquafit classes? My physio here encouraged me to join the local ones offered by the regional charity and I find they really help - and she feels they are as good as her doing hydrotherapy with me.
I used Pilates all the way through the 5 years I had PMR without any pred - aquafit first and then the Pilates class, both included in the off-peak membership of a Bannatyne's gym and it kept me mobile and upright. I missed it dreadfully when I moved here.
Pilates is an acquired taste in many ways - you have to start from a very low level or you will suffer. No competition - you must know your limits and stick to them and you need a good instructor. But Pilates parallels good physio and aquafit hydrotherapy and both are ideal for us with PMR.
I love swimming, but once you miss a session it is easier to miss another one and get out of the habit of going swimming. If you can get a pool that you can walk up and down in first that does help as the water takes the weight off your legs. Ideally a hydrotherapy pool but they are few and far between.
Weirdly I love swimming and went regularly when younger but sadly my OA never did and the physio in the pool never did anything for except pain, in the end even the physio's decided it did me more harm than good!
I used to help with our arthritis group and a local hospital used to let us use the hydrotherapy pool. That is ideal. Nice and warm. If you were going to the gym before Covid you must be a lot fitter than I am!
I thought you meant 2019 as before Covid! Looking back to the last century I used to play squash, sail, play tennis, scuba dive…… I would not even think of doing anything like that now.
I do Pilates with a teacher every week, and at home I do regular exercises prescribed by a physio. Currently, I am exercising in preparation for our skiing holiday. I like Nordic walking and do a lot of walking all the time as I live in London and can't drive.
Before PMR I was very active. I went to Pilates, walked, did gardening, painting and decorating, etc. I stopped Pilates about 2 years before I was diagnosed. Even though it was promoted as being very good for fitness and well being something was telling me that in the long term a more gentle form of exercise might be better. This has proved to be true. After 4 months of being unable to do anything much, even dress myself, once I was diagnosed I was able to start walking again and do gentle exercises to try to improve my muscle tone. I was also able to resume gardening and some painting and decorating albeit on a smaller scale. I should be thankful that I can still do all these things, including climbing a ladder to our flat roof three times a year to sweep off all the dust, but I still hanker for the strength and mobility I had before PMR. However, I should be more realistic coming up to 80 in July!
I notice that no one has mentioned yoga. I teach yoga and have had PMR sufferers in my classes. When I got PMR I was able to continue the practice, although more gently. Yoga also has the benefit of helping you to relax fully and breathe well. It’s been a saviour for me.
I did yoga for years before by GCA came along and really enjoyed it.. but the undiagnosed (lasting 18months) GCA made it impossible to continue.. so when I felt I need to resume, my excellent teacher had retired, so I had to look elsewhere -and found Pilates!
I did Iyengha yoga for years with untreated PMR - but heavily adapted for me. I also did Pilates and if I had had to chose one for its benefits, it would have been Pilates. Then I moved here - neither as an option.
I did Pilates too before Covid but haven't gone back as I found it too repetitive. I do aqua fit twice a week and love it (we have good old pop songs with it) and also do "thighs bums and tums" which is 45 minutes doing different steps (no running or jumping) and miss out the last 15 minutes of floorwork as it is difficult for me to get down on the floor due to hip replacement 7 months ago. Have you explored a local walking group, maybe through U3A ? Much better in a group i think. Best wishes.
I have to say that swimming and pool exercises have been my "go to". I think that has helped my PMR the most and if you are able to get to a pool I would highly recommend it. It is very easy on your joints and great for stretching your body without hurting anything.
I am a lot like you, I used to go to a local pool and do aqua fit exercises on my own which I enjoyed. Unfortunately, I stopped going around 6 months ago and now I don't feel I have the inclination or the energy. I MUST do something though as I am very overweight due to five and a half years on pred and, it has to be said, lack of discipline on my part! I too disliked Pilates when I tried it. I think whatever you choose you MUST enjoy it or you won't keep it up. Can you walk with a buddy?
I am in the exact same boat here! Unfortunately our community pool starts renovations next month so I’ll have to wait to re-start my deep water exercises. When I do finally start again I’ll take it very slow beginning with 15 minutes and work my way up.
The two exercise modalities I've not seen mentioned are Chi Gong and Feldenkrais - both of which are much gentler than Pilates (I've tried them all - including Tai Chi) - at the moment I'm doing Feldenkrais, which is very easy (I'm on a zoom class and the instructor frequently says, when she introduces a new movement, "And if you can't do it, just imagine doing it," because what you're really doing is changing the way your brain perceives the movement you're attempting. It's very interesting and very forgiving, and at the end of a session, when you're re-scanning your body and how you feel, I often find that my arms or legs or whatever we've been working on, feel longer and more flexible. Chi Gong is also much gentler than Pilates.
Do check out Feldenkrais on YouTube - I particularly like Taro Iwamoto (just put his name in the search bar) - he has short and long lessons that are easy to follow and focus on particular problems. It's great, gentle stretching that also stretches your brain (and breathing). Very unusual and a lot easier on the body than Pilates - and even yoga.
For 10 years until a year before PMR I was playing about 90 minutes of tennis almost every day. After a few months on my back in pain, before diagnosis, I was able to start frequent 3 to 5 km walks.
Now on 5.5mg of pred, my preferred exercise is about 10 to 12 minutes on an Elliptical ‘Interval’ Program, alternating each minute between 7 incline with 5 resistance and 10 incline with 15 resistance. This lets me crank my heart rate up to 150-ish and recover to 130-ish about 4 or 5 times, and cool back down to 80-ish in just 10 to 12 minutes.
This regime has really helped me maintain a resting heart rate in the 50s and an overall reasonable sense of well-being. And I’m able to do this at home, without risk of contracting Covid in a gym.
The other thing I’m doing is dunking in the cold ocean after a hot tub most days. Just for a minute or two. The same effect is doable in an ice bath. I find this therapy exceptionally invigorating. And aside from reading about it, check out the Netflix documentary ‘My Octopus Teacher’. A wonderful story about a challenged free-diver in cold water that develops a relationship with an 8-legged friend.
Notwithstanding this condition we all share, there are inspirations all around us.
On Sunday I do one stretching with lots of strength building exercises in the green behind our houses. It is run by my neighbour who is a physio so she is mindful of all the problem areas of the other 3 other 50+ women that do it. I always hope she will cancel but really feel great after (although I get doms on Tuesdays). I am so lazy. Otherwise I just walk and keep moving. Hopefully you can find some nice easy, friendly class.
I do ballroom and Latin dancing and have continued after the onset of PMR 2 years ago. Sometimes my stiffness made it more difficult but I'm sure it helps with the aching. However I am not on steriods so I don't know if this makes a difference. I walk all the time too.
Walking is great but needs to be supplemented. Why not back to the pool? Starting under your own steam to get started and build confidence, then an aqua class? Definitely stay clear of gym equipment based on weights. Pilates is excellent but not the large class variety - try a studio or a v small class where they can give you tailored exercises. Even though people may find it boring, it is so good for us. With yoga, again a small class and a British Wheel teacher who does a gentle form of yoga. Or try any exercise you think you may enjoy, if you like dancing then zumba gold for instance.
Hi Siena62,have to say swimming helps me alot I go 3times a week for half hour,the days I don't swim I walk and feel reasonably well.PMR still active but doesn't stop me doing things. Take Care Harry x
Walking is good. You may find a pair of Nordic walking sticks might be of use. Whilst I could still walk for exercise I got a pair and found them really good. You can go at your own pace but you tend to go a bit faster with the sticks and you find that you get your respiration rate up a bit quicker. Even slow Nordic walking is good as a whole body exercise.
I think whatever you decide you should start slowly. Tai Chi is very gentle if you are able to do standing exercise. There are classes of chair yoga offered at some places if that appeals.
I would speak to your GP as there are sometimes exercise referrals they can prescribe. There was one not so long ago via Nuffield Health Clubs where you could attend for so many weeks for free. Not sure if that's still available or even if it was limited to certain commissioning groups.
Whatever you do make sure and start slow and work up. Make sure its something you really enjoy as otherwise you just won't stick to it.
Thanks for the Qi Gong vid. Could you talk a bit more about your pred induced myopathy? I would have thought it would be difficult to distinguish between that and the stiffness one gets with PMR? I have stiffness deep within the shoulders that seems to move towards the spine at the clavicles, moslty on the left side. I am doing Yoga once a week, walking in an arboretum twice a week and daily local walks. My last belly dancing class (lots of arm waving!😃) rather took it out of me. So difficult to tell if it is steroids or PMR.
as PMRpro says, you actually see your muscles disappear! It happened very fast after a few weeks at a high dose ( while tapering from 60mg to 40mg). The rebuild of the muscle seems to be happening ...3 years later and at 2.5 mg. I continued some form of leg exercise several times every day since they began to disappear...just raising legs in bed and when in a chair, walking as many meters as I can. VERY slow improvement .
I used to go to the gym but as my PMR symptoms got worse I had to give that up. Months later, when I was stabilized by meds, I resumed it. My level on the vaious pieces of equipment was significantly lower than before, having lost muscle tone over a long period of inactivity. I do only what I am able, at the level that I feel comfortable. I also walk on the treadmill, timing it according to how I feel the day I am in. Overall, I have seen a slow improvement in my performance. I make sure to go every other day, 3 times a week, even when I am exhausted. Doing little is better than nothing and it makes me feel good.
Good luck with whatever you choose to do! I think that listen to your body is a key to success.
Hi Knit11, I do exactly the same as you. I have just resumed at the gym, doing a circuit of exercises 3 times a week recommended by one of the instructors after filling in a lengthy questionnaire through my GP surgery. I am 76 and my local council runs a healthy living 2 year programme for older people through the local council gym run by Better Leisure. The exercises are low level and will be reviewed in a month's time to see how things are progressing. After 2 weeks I have already noticed my balance has improved and my shoulders feel less stiff. I have been advised that if in pain STOP the particular exercise that causes it and wait for the review. I am currently still on 5 mgs of Prednisolone for PMR. I do agree about the feel good factor and it makes me feel more positive. Previously, before lockdown, I was going to the gym 3 times a week for 10 years.
Every day in every way, I feel a little better. Good luck everyone. 👍👍👍
As part of my recovery package for hip replacements (x2), I go to the hospital's hydrotherapy pool and have been able to self-fund a 'Splash' session in the pool once a week doing all the exercises the physio gave me. The pool is lovely, about 35 degrees C, so the muscles relax but still work quite hard. I've managed to keep fitness between ops with this and walking. More or less free of PMR symptoms now and dying to get my hips going again so I can garden and do those coastal path walks that PMR and hips have prevented me from for years. Christmas and grand-children gave me a really horrible dose of Covid, upset tum and endless nose blowing, so feeling weak again -back to the pool this afternoon!I've also kept doing simple hip and back yoga exercises all through GCA and PMR, everyday for 15minutes and this has really kept up my flexibility.
In our village we have a chair based Pilates. No getting down on the floor. Some standing work and a great teacher. All older people and we have a good laugh as well.
I am currently doing pulmonary rehab twice a week at my local hospital. This was prescribed as I have restrictive lung disease from scoliosis, muscle weakness from prednisone, and asthma. Plus I am on oxygen 24 seven which makes it difficult to walk outside. I have a treadmill at home which I use and watch a show to keep it from being boring, I also have a stationary bike but the seat is terrible and the electronics no longer tell me the information. So I am considering getting used a recumbent, elliptical similar to what’s in the rehab. I found this very doable and adjustable to my strength.
I am on 8 1/2 mg right now and I certainly don’t want to taper and do the extra exertion at the same time , so I decided to park at 8 1/2 and reduce after I’m done with pulmonary rehab in about five weeks.
I have a Pilates performer which I have used the whole time with P MR. I find it doable and I feel much better afterwards. There’s a funny dilemma with this PMR; sometimes I feel absolutely terrible. Don’t want to move, but if I just push myself a little and do some little exercise I feel vastly better.
Oh, sigh, I used to LOVE my Zumba class and bodybuilding heavily and running. Nope, no go now. I'm just healing 8 weeks post total knee replacement and have felt oddly stronger and much better. So I do 1 1/2 hours of physical therapy 3 times a week and go to gym daily to ride their bike or walk on their treadmill. (Free through our health insurance Blue Cross Blue Shield!). I started lifting free weights again so I can change up the routines constantly with light weights gradually getting a bit heavier. So far so good. Knee is at 140 degree flex which is great! I DO enjoy the gym but I ALWAYS wear an N95 and move away from others. (Wear one everywhere actually). I also go at off times when there are few folks there. I used to get to Florida each winter where I could swim daily. Miss that! I do swim in our lake across the street in summer here in Michigan. Walks on ice and snow covered roads are hard for me due to TKR but I'll slowly work up to it (treadmill). I get my other knee done in 3 weeks (crazy me). So yes, go to the gym (masked) or swim anything if gentle, yet enough to slowly build up to a good work out.
I recommend a return to swimming - a great workout in a clean environment due to all the chlorine. I combine a half hour of aerobic exercises, then a half hour swim. Start slow and gradually increase the intensity and duration, and love how you feel when you're done! Kudos to working out even when your enthusiasm was flagging...
I was very active pre-PMR. Running, cycling, spin class, swimming, Pilates and gym every week. I also walked my dog twice a day. Looking back I wonder how I fitted all of that in plus working and bringing up a family! Since diagnosis almost 3 years ago (coinciding with the first lockdown) things have slightly changed. I got back into running and gym work fairly quick post-diagnosis and don’t work as hard, run as far or go as frequently. I don’t cycle anymore as I’m petrified of coming off my bike due to developing poor balance and thinning skin. I have stopped swimming as it now aggravates trapped nerves in my neck/shoulders - a huge miss. Didn’t get back to Pilates or spinning classes after lockdown disruption, which again, I really miss. I’m not concerned about covid exposure in classes as I have teenagers who are potentially exposing me to it on a daily basis… And I teach at Uni so gave in to the inevitability of it all! I continue to walk the dog twice a day and get up the Fells once a week. It isn’t quite enough and I am aware of significant muscle wastage but I don’t want to push myself too hard and risk injury or flares. I believe the steroids (and PMR) make you more susceptible to injury so whatever exercise I do is always followed up by stretching. I’m 53yrs old and incredibly envious of my running buddies who are currently taking on marathons or 10k challenges or cold water swimming in nearby Lakes. I need to stay functioning and flare/injury free and so monitor myself carefully. My hubby is utterly frustrated by my caution as he’s keen for us to do some hardcore stuff together, but I’m not prepared to risk it. So a weekly run (well, a short jog), an easy session at the gym and daily dog walking is my limit. For now. Although I do fancy getting back to low level, beginners Pilates again. You’ve got me thinking…..
I think the Pilates, starting from basics, would be fine, you will find out what you can tolerate as long as you start small.
NO hardcore - far too risky. But you will get back in time - Skinnyjonny did and climbed Annapurna IV. But he credits his recovery on the very gentle start with hydrotherapy
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Going back to work
going back to starting dose
Exercise 
Should I go back up to 10mg preds from 9?
