Exercise and PMR

[Pangolin43]

Hello everyone,

I’m interested to know what kind of exercise people manage with PMR.

Once the pools are open again, is swimming/aqua aerobics a good thing to do or cycling if I feel safe enough?

[PMRpro Ambassador]

I did aquafit for 5 years of PMR without pred - it was that that meant I could keep going at all! But I discussed it with the instructor and kept the level very low to start - no competition! Then built up what I did very slowly. I started with just 2x a week and not always the full length of the class, if I felt tired I stopped. I never went in if the pool was cooler than usual because my muscles just seized up. By the time I finished I had got to the stage of managing a class every day and almost all at the same level as everyone else. I also managed a Pilates and an Iyengah yogaclass - both heavily adapted for what I could manage - in the week. I don't like cycling - I have a back problem - and the repetitive movement of cycling isn't always easy with PMR though some people manage it. The good thing about the aquafit was it is always using different muscles so you don;t have that effect.

But whatever you do - start low and small and build up very slowly, over months if necessary.

[Pangolin43 in reply to PMRpro]

Thank you. I will try not to rush things. 😀

[Thelmarina in reply to Pangolin43]

From my own experience a slow build up is absolutely vital! I didn’t do that and boy did I suffer for it..😱😀

[TheMoaningViolet]

Hi Pangolin43, I suspect you will get as many answers as there are people who comment on this post. This very much depends on the severity and nature of your PMR and everything that comes with it such as steroids, your age and your original fitness level. The principle of starting gently as seeing what you can manage as PMRpro suggested is the only real advice one can give you. If you are curious about what people manage to do, I make sure I have a short walk (about 1 mile at least) or 15 minutes on an elliptical every day, I do simple joint rotations for all my joints, a set of targeted exercises chosen by my physio to keep my muscles strong and my joints lubricated and some simple stretching including a bit of yoga. I do these exercises every day. Before the lockdown I did a weekly Pilates session with a couple of Pilates exercises I did at home every day. I do a longer walk whenever possible and can recreationally cycle without problems. I am 54 and I was reasonably fit and recovering from a knee surgery (skiing injury) when my PMR started in August 2019.

When I am tapering steroids, I feel more tired after a walk, so on those days I may need to take a nap afterwards, but keeping all my joints and muscles moving every day means that I have no background muscle pain which could be confused with a flare.

Starting slowly and gently may be frustrating at times, but once you start doing a simple exercise every day, you would be amazed at how much progress you can make in building up strength and flexibility.

[Pangolin43 in reply to TheMoaningViolet]

Thank you for such a detailed answer. 😀

[piglette]

I am so longing for the pools to be opened again in April. I think it is a fantastic form of exercise for PMR.

[alvertta]

I have GCA. I was advised to swim by a therapist. I swim 60 minutes 3 days a week. Water is 86F. And I do some lengths plus water aerobics.

[Koalajane]

I walk. I couldn’t walk far to start with but now walk about 15,000 steps each day

[Pangolin43 in reply to Koalajane]

That’s a lot 😀 well done you.

[alvertta in reply to Koalajane]

Fabulous.

[Pangolin43]

Thank you all. Helpful suggestions. 😀

[Peneilope]

I started out walking on the treadmill at the gym, and slowly joined back doing Zumba. It was slow, but eventually I could last the entire class. Just do what you can with what you have. Stay consistent and keep trying.

[ignatz]

Oh dear.. I gave up swimming around 18 months ago as it was just too ache-causing and therefore miserable. Swam a couple of times last Summer butt pools mostly shut due to Covid. Currently walking around 1-2,000 steps some days- when not too knackered. Amazed that I managed over 10,000 steps yesterday but a special occasion (I wickedly met someone outdoors). 7mg Pred daily.

[navejasjoe]

My wife did Zumba classes prior to the pandemic shutting the classes down. She now does the classes on line. Her primary care physician would like her to do walking but she absolutely cannot sustain any effort to make it meaningful. Way too much pain in her upper legs.

[Louisa1840]

The two exercises you mention are the only two I can do. I find my body seizes up if I don't keep doing my aqua aerobics. I went to a class initially and learnt the moves and now I can go to any pool at any time and do the workout. I had to stop for five months owing to an open leg wound and found that my body literally seized up. I went back yesterday and am taking it very slowly though I did have a swim at a local beach last Friday which was magic (I live in Tasmania where our beautiful autumn weather is very lovely!) I had a fall from a hammock a few weeks ago and have had a really bad back since then. CT scans and X Rays are showing up nothing. Because of this I haven't been back on my bike as that sometimes affects my lower back but I'm hoping to resume cycling once things improve. You need to take it VERY slowly with PMR so do take care and don't be over enthusiastic, as I tend to be, or you will be very sore afterwards! Good luck Pangolin.

[Thelmarina in reply to Louisa1840]

So agree about everyday exercise to avoid seizing up . For me that involves yoga stretches. Makes a difference to my sense of control and positivity too 🌺

[Pangolin43 in reply to Thelmarina]

I used to do a lot of yoga before PMR. Now I can’t put weight on my wrists or kneel and sit on my heels.

[Thelmarina in reply to Pangolin43]

I know. I have exercises flat on my back just stretching with gentle twists! 😀

[marigolds in reply to Louisa1840]

You are so lucky I wish I could go to a beach, I live in the Midlands so the nearest beach is over a hundred miles away. I think the salt water is so good for you.

[Pangolin43 in reply to marigolds]

And the sun too 😀

[Mondelo]

I am sixty, was reasonably fit prior to PMR diagnosed 18 months ago: Used to love the gym and general fitness classes within, but learnt the hard way and put myself back: Now walking regularly managed 20 K on Friday having built up over a period of 5 months; I am also looking forward to the pools opening, but again do what your body is telling you and don't go backwards by over doing it :

[daworm in reply to Mondelo]

That response fits me also...worked out with free weights, was very fit, then PMR...initially going back to anything like that was pretty much impossible but I slowly started working out again with much lower weight and really upped my walking and hiking...do what you can, walking is wonderful for a person, you’ll certainly know it if you feel good and overdo it....stay active as possible..

[Daffodilia]

I have continued Pilates in pandemic on Zoom and by myself - some Nordic walking and just walking and usually swim too

[Kendrew]

Hi Pangolin43.I was very fit and healthy before my PMR diagnosis in May 2019.....I'd go to the gym 5days a week and incorporate lots of other exercise into my daily life whenever I could, so suddenly being unable to do any of this came as a massive shock.

However, with the help of this forum, I've re-educated myself and now once again incorporate exercise into my daily routine. It's a very different picture to pre-PMR though as you can imagine! VERY gradually I'm slowly building up my stamina in three main ways. Firstly, I've continued to eat a very healthy diet, secondly I walk every day and thirdly I've taken up gentle yoga.

What you put in your body will determine what you manage to get out of your body. The better quality the fuel......the better the performance!

Walking is free.... its good all round exercise and easily adjusted to suit your capability on any given day. From only being able to walk for 30mins around the meadow opposite my house last year, I can now walk for up to 1½hrs through the local countryside on some days (with a 5min sit on a bench half way round) This is a huge improvement but I've had to be patient and pace myself.

Yoga (for me) is relaxing but also reduces aches and pains. I specifically select sessions off YouTube that are gentle and for people with osteoporosis (I also have this) so I'm building muscles, bone, and developing my balance. Again, I can cherry pick what sessions I do, or even what exercises....eliminating any that I feel are too much if I'm not having a good day. You can find yoga for virtually any condition (lower back pain, piriformis, bursitis, RA, sciatica) Just type 'Yoga for.....' into SEARCH.

You can do any form of exercise you want to but it must be within your capabilities and mustn't be more than your body can tolerate. Rest is an important part of managing PMR/GCA but a totally sedentary lifestyle definitely won't help either.

Hope that's been helpful.

[Pangolin43 in reply to Kendrew]

Thank you Kendrew. It’s good to hear such positivity. Sometimes I have painful and swollen feet. Does anyone-else experience this?

[Telian]

I did Aquarobics and didn’t have the appropriate tuition for me and injured myself. The teacher was not that interested. I’d asked my GP if it would be okay for me to try and he agreed. Follow PMRpro’s guidance it’s essential.

[Lovebikes]

I was very fit and 54 before I started my PMR journey; strenuous mountain biking 2 or 3 times a week, hillwalking, dog walking, a brutal Pilates class on a Thursday evening that left me stiff every Saturday morning. With PMR I still did all those things but at a much lower level. In the early days of my PMR I would need to sit down for much of the afternoon if I exercised in the morning. 20 months from diagnosis (and at the end of winter and a second 'lockdown') I feel so unfit. However, it is all relative and I am beginning to find I have more energy and resilience to exercise. I hope to gradually build up again. So probably what I am saying is that PMR hasnt stopped me doing any particular type of exercise but I have done them all at a lower intensity. I know that I will need to pay back the exercise by taking a rest afterwards but it was important to prioritise the exercise that was so important to me and maintain a degree of fitness.

[Pollyanna16]

In my early years of PMR I stuck with aqua aerobics & it definitely helped to keep me fit, twice a week & I still miss it but it’s too far to drive now we’ve moved. So I am concentrating on Pilates on Zoom with either a qualified physiotherapist/Pilates teacher or someone who is deeply interested in it. I cease up if I don’t do it regularly. Then walking or cycling (E bike wonderful). Will be back to golf soon but I wouldn’t recommend taking it up at this stage! Good luck x

[LMali]

Hi! If you want to do something low-impact at home, whilst waiting for pools to re-open look on youtube and type in "low impact" and you will get a load of workouts by the Body Project. They are very easy to copy and he encourages you to pause or go at your own pace but I find them quite easy to keep up with. They do not involve equipment and they are *all standing* which I really appreciate. I don't really like getting down on a mat to do exercises.

[Pangolin43 in reply to LMali]

Thanks. I’ll have a look.

[ChinaWuntoo]

'Your own pace' seems best advice. I have to go shopping for small items so walking is necessary and I am finding that distances are slowly increasing. I've found it is 'trial and error' with too much 'error' because I get impatient. My partner is now wheelchair bound outside the house and I have found pushing the wheelchair a bit tricky, although I'm not sure whether it's the different muscle use or steroid tapering that causes aches.

Slowly, slowly catchy monkey!

[Chevypickup]

Hi Pangolin , I have PMR for 14 months, started on 40 mg. last month was down to 1 mg, not good, am now on 4 mg and going to go down very slowly like maby 1/2 mg per month? but I started doing Essentrices for 30 min a day. Miranda Esmonde White has some CD out, I started with her Agin backwar CD, very good. Now I have six of her CDs. You can also go on line, I think for $20.00 bucks a month go to essentrics online workout (Essentrics TV app)Hope this helps

[greengages]

I am a senior Iyengar yoga teacher and had go to recuperative poses for quite a while . I was amazed at how tired I easily became and when teaching would get other teachers to show the poses as I couldn’t do them. That was the most depressing thing and something I’ve never shared until now. Students couldn’t understand how I could have PMR when I did yoga and was vegetarian etc etc and to be truthful neither could I.Slowly but surely is definitely the way forward, I now do an hour every morning on zoom with other teachers and walk too but have had to learn to rest. I think you just have to try things that appeal to you and that you will enjoy and build on them slowly. I’m on 8 mg pred slowly tapering as advised on this site to 7. I’m 64 I have also taken to sea swimming as it is supposed to be good for the immune system and love it. Can’t swim mind I just bob up and down 😃😃😃My joints unlike others feel great you just have to try different things. Good luck

[Harrywogan]

Hi Pangolin43, I swim 4 times a week,well when there open, and walk for miles,one day 2 short walks then next do one longer walk mayb 5 miles but I always take it easy ,it works for me .take care

[Bcol]

I think the Moaningviolet says it, it all depends you and the severity of the disease. When first diagnosed (June 2020) I could hardly move let alone walk or exercise, and I was used to doing 5-8 miles everyday before breakfast with the beasties. I have also been lucky in that the main or majority of my pain has, since then, been in my shoulders and neck areas and wrist and hands more recently. I have since built up very, slowly to managing, without to much difficulty, to around the 5 ish miles a morning again sometimes more if feeling really good. Having the dogs is an incentive as they need to go out whatever, but if feeling not so good they just get a short trip around the houses. I love swimming but my OA, for some reason, doesn't. I found the pool part of Physio really painful so stopped it in the end. My walking is also on the hills/moors where I rarely meet anyone and if I do they are a long way away, a bonus at the moment!! As everyone has said take it slowly, rest days when needed and only do more wen you are satisfied that the previous exercise has not come back to bite you.

[Crusherone]

Hi I got PMR at aged 75 doctor started me off on 30 mags a day I used the taper system for 18 months I have been off them completely now for about 18 months now nearly 80 and can still do 10 to 15 miles hill walks and all the time I was on them still kept walking albeit a bit stiff use the taper system and think positive just get on with it life’s too short. Best of luck

[PMRpro Ambassador in reply to Crusherone]

To be fair, if thinking positive worked, we'd all be climbing mountains. Some people just can't do as much as others.

[AtopicGuy]

Late-50s and I struggle to keep on top of mowing lawns, washing cars, sweeping the yard, light DIY, etc. It hurts and afterwards I'm shattered. Can't do as much as I could even 6 months ago. I worry about things going to pot.

[herdysheep in reply to AtopicGuy]

I used to worry about things going to pot but mainly it's me going to pot! You can only do so much and certainly not what you did before, so it's 'grade and pace'. Sort out the priority (only 1 a day) then do whatever is required in small bursts with rest in between. It was a hard lesson to learn, and I slip sometimes, but otherwise you feel so clapped out nothing gets done at all

[S4ndy]

I would recommend starting very slowly with short sessions of anything you choose. Work up to longer sessions.

I can't walk far but do have fairly good balance. I have always cycled but couldn't manage my normal bike. So last year sold my bike and got an electric instead.

I have found that I feel happier having the power assist to call on for hills or if I am overtaken by the deathly fatigue. I've had to start off doing short rides and now on a good day I can manage cycling to the post office in the village, a round trip of just over 7 miles. Luckily the post office sells coffee and there's some benches in the churchyard to rest and enjoy the coffee before attempting the return journey.

With all exercise you need to find something you enjoy and that you can cope with. It's no good forcing yourself to do something you hate or that causes you pain

[Ladyoak]

I went for a tiny walk every morning to start with as when I first got out of bed the pain was bad. I use walking poles and like you, I can't wait to get into water again. . My poles are great though as when I was really bad I didn't have them. Now I am able to walk for 40 minutes up hill, they have helped me but you have to take it steady. xx

[Maryis80]

Just finished a seated zumba class, I was exhausted. Looked at all the other elderly ladies doing it and felt a failure. Must try again next week

[PMRCanada]

I do a 50 minute aqua jogging (deep water exercise) class 3 times per week, and try to get in 2 fifty minute walks. I did work my way up to this level slowly having learned my lesson after jumping right into exercises after I first started pred, and later suffering from DOMS (delayed onset muscle soreness).

With having PMR the last three years I learned that physical activity of any kind requires a slow, staggered approach. Everything from stripping wallpaper when renovating to weeding the garden can result in becoming sore. For example pulling weeds causes me pain later on, but shovelling snow (in moderation with breaks), no problem. I’m also able to golf and play pickle ball in the summer....go figure??

Experiment and see what’s best for you.

[Choco-Holic]

I do about 4-5 miles most days. In the early days of PMR that would not have been possible! I just did little and often and built up my fitness. I’m 2 years in but also have GCA but feeling really well. Everyone’s PMR seems to be different to others.

[Bubble56]

I bought an electric bike and can cycle 20 plus miles but can only walk 1mile!!!! The bike has preserved any sanity I have.😃

[Emmerdale1234]

Hello the best exercise for me is swimming when the pools open again. At this time I do my regular streching exercises twice a day and I go for a walk every day. Swimming keeps my arms and shoulders strong and relaxes my legs I always feel great after swimming. I dont cycle outdoors any more but have an exercise bicycle in the house. Looking forward to swimming again and being with other people. Take care Keep well.

[Pangolin43]

Thank you so much everyone. This site is an inspiration. 😀

[weatherman69]

I have GCA, and was told not to get into the ocean until I was down on Predisone. Does anyone know what amount that is?? I used to get in the ocean almost everyday, but since diagnosis 4 1/2 years ago, I just look at it. I am longing to get in. I am currently on 19mg split dose

[PMRpro Ambassador in reply to weatherman69]

I think I would have asked why! I suppose it depends what you are doing in the ocean - as opposed perhaps to "at the seaside" - and a consideration of impairment of judgement when on higher doses.

[BLP12]

Hot yoga is the only thing that makes feel better. I amObsessed. It’s awesome