Hi - I’ve had PMR now for 2.5 years and thought I’d like more exercise after having to give up Zumba Gold which I used to do twice a week and thoroughly enjoyed until PMR struck.
I thought I’d try Thai Chi but after only three classes I have found the pain has come back in my arms, shoulders and neck! I think this is because you use your arms so much. Anyway has anyone else tried it and how did you get on? Also what forms of “exercise” do you think is good to do apart from walking short distances? I am on 7mgs after having relapsed twice on this journey down to hopefully zero!!
Thanks
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LindaB-66
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Hi. I go to Pilates (reformer tables and chains etc so not just mats) and find it beneficial. Started one to one and now am in a class of three so tailored to our individual needs. I also see an osteopath. Have two dogs so try and get out on one of the two daily walks. Sometimes both, depending on energy levels. Compared with you I am a Newbie. I'm sure others will have more to add in support. (Swimming has been recommended but I haven't found time to fit in around work and Ukelele! I also hula hoop.)
I was thinking I might try that (online) as my daughter has “invited” me into her site to give it a try! I’ll take it very easy to begin with though! Thanks for reply.
I did start out thinking I was my old super fit self - some days I am that person in my head but NOT in my body - on those days when I'm tired, ironing is my sole workout!
Hi i bought an aerobic step do that most days to strengthen my legs, and i go out for a bike ride a couple of days a week, l find my legs burning when I get to the top of the hill i notice it has built my muscles up lol 😀
It is probably because you have jumped straight in and done complete classes - when I started aquaerobics I did half a class to start and always at as low a level as was possible. It was months before I did actions using a woggle at all. You must start really small and build up VERY slowly. I found aquafit brilliant - done at MY level.
I haven't done tai chi but I know a lot of people with PMR have - but jumping into a whole class means a lot of relatively sustained arm and shoulder movements right from the start without much respite. That will take its toll. Swimming can be a similar problem.
The same applies with walking which is ideal: start with xmins out and x mins back and build up adding a min out and therefore back each time. You say "short" - why just short? You start with short (I did 5mins out and 5 back) but increase first the distance and then when you have a suitable distance worked out, improve on speed.
Yes - if you try to do too much all at once. But if you build up slowly as I described you will be back to walking for an hour or so very soon. But slowly means what it says - not adding 10 mins every day - you walk one day and don't the next and if you felt OK on the rest day you can add a few mins the next day. Eventually you will find a convenient duration you can manage without problems - and then you can start the same sort of process on the rest day so that eventually you will be able to walk every day if you want to. I walk at least half an hour almost every day - haven't done much recently as the weather (ice and snow) has made it next to impossible but when I start again i won't be walking 1/2 hour every day at first.
Hi PMRpro - I hear what you say and I reckon I probably did too much at once as you say but it is hard to just keep standing around doing almost nothing in class when I got sore! I did try swimming too as that was another thing I liked but doing the breast stroke did me in even taking it slowly.
I do like walking but again probs trying too long a walk even although walking fairly slowly in comparison to how I used to stride out!!! Will see how I get on with the Pilates at my own slower pace when I start (10 week free internet course) next week!
Thanks for reply - I have read all your posts over the last couple of years so thanks for being there for us all! Ta
You will manage a whole class - eventually! Just not all at once
I struggled with swimming right from the start - which was why I did aquafit, omitting the actions that posed problems at first. By the end I was doing pretty much everything.
Hi pmrpro, if you exercise through the pains in your arms and legs can you do muscle damage?. My pain levels go up and down depending what time after taking the pred but never really go completely. I'm in Spain for a month and keen to get out cycling most days as it's warm and sunny but wondered about any possible harm i could do?
There are doctors who believe that excessive exercise can actually trigger PMR - I'm not so sure about that connection though.
However - if you really do overdo acute exercise and develop severe delayed onset muscle soreness (DOMS) it can take a lot longer for it to heal if you have PMR. Training is just causing tiny tears in the muscle and them healing again. In PMR the underlying autoimmune disorder seems to slow down that healing process. Which is why we emphasise starting to do your training from a very low level and increasing by very small amounts at each step. Once you have built up that training you can do quite a bit if you are lucky - although some people never manage to get above about 50% of either intensity or duration without severe payback.
Only you can tell what you can manage - but it is fairly likely that if you try to force it through to do too much the first day, it may be a while before you can manage a second day!
Thank you PmrPro that's good advice. Having been into sport all of my life right up to developing PMR I know what the muscle tear and repair feels like and it used to be sore the next day very stiff the second day but after that you can feel the muscles are repairing or rebuilding. I'm finding now that it is taking an age to get to the day 3 feeling. However I'm determined to not give in to it and will try your slowly slowly approach. I'm not into the group exercise classes I just want to get out and hill walk or cycle decent distances. I'm now in Spain for a month so it's much easier to get out most days to get fresh air and exercise.
I started doing backstroke as I had a hip problem too which made it difficult to do breast stroke, although I did do a bit of crawl. I just love swimming.
You really have to listen your body and be patient. There is no way I could jump into any exercise regime without building up to it. I find too much swimming can make my neck hurt if I use breast stroke and arms doing crawl. I started out by part swimming and part walking and built up very slowly twice a week for under 20mins (That included 10mins if physio exercises hanging into the side doing stretches). I went with my sister and family to a spa and while they went into the gym I stayed in the pool just messing and floating for an hour. I could walk when I try to get out. Gravity hit me full pelt. Talk about the ministry of funny walks.
At home I have a stretch band that I use to gently stretch legs and arms whilst laying on the bed. At first I started with the band loosely stretched and held it in tighter stretch as muscles started working better- only 5 to 10 stretches in several positions. It is definitely better for me to have a good rest day between busy days.
I have had severely limited mobility for over ten years with different conditions and have been up and down within those limits. Each time the fitness goes, and it goes much quicker than you think, I have had to start slowly again. If I get any pain or "burn" during the exercise I stop and rest, try a bit again and if it burns again I stop.
Try first few Thai chi moves and if there is no reaction try and add a couple more and build it up over the weeks. Good luck🌻
Thanks Poopadoop! Yes it was my neck muscles that hurt sooo much when I tried to swim! I think I really need to learn how to do this “build up slowly” thing and stop myself getting annoyed when I think I’m failing to move forward! Thanks for reply!
I like swimming under the water best because you don't have to put any tension into your neck. I would just push off and gently swim under the water as far as I could. I found it had dual benefit as I always took three deep slow breaths then held fourth and pushed off. The breathing technique helps me out of the water too.
I'd love to do that, but I can't. I just rise to the top. I float in the bathtub.
Once I was in a huge hot tub in Vegas with several other people, having drinks and a nice conversation. I forgot, let go of my seat, and went drifting across the hot tub while just yakking on.
One of the women got out and said I must be a witch.
Linda, I credit Tai Chi with getting my arms to raise.......eventually. During the early classes, I used to have little spells in the early days sitting on the sidelines when my legs couldn’t cope. So don’t give it up at this stage but don’t try and compete with everyone else. I felt it was nothing short of a miracle the first time I found my arms suddenly going straight up without pain, and you will, too, but only when they’re ready.
There is no rule that you can do only one thing... The best is to do what is the easiest ( like walking) and slowly add distance/time. Also it is really good to pay attention which muscle group you are using( lower body for walking) and try to pick alternate exercise to use upper body (like swimming). Try to pick 3-4 different activities and rotate them thru the week. As far as I can tell, the main issue is that you didn't do any for a long time (2.5 years), so it doesn't matter what you try, you have to start very gently. For swimming, if you relax your neck and let the water hold you head ( try to actually push your head under water for part of the breast stroke), yo will discover that your neck problem will be gone. Just come up to take a breath and then dive under.
It is amazing how much your body will adopt to new activity/exercise as long as you do it gradually. If you don't have any other health issue, there is no reason not to regain all the strength even with PMR, BUT it takes time, 6 months to a year. It can be done.
Hi Linda, I do Tai Chi and chi gong (?spelling). For me it woks very well. It does increase the pain to start with, but if I persevere I seem to get through the pain barrier, and by the end of the class feel much better. However I do have a very high pain threshold! It works for me, but I'm sure it won't work for everyone. Gentle walking might suit you better. Good Luck!
Yes, but there are different spellings in English. I've got a book by Master Lam Kam Chuen, called 'Chi Kung, The Way of Energy'.
Wouldn't recommend doing it from scratch from a book, though. Best to learn technique from a teacher first. (Used to do them all. It was back when I moved up to advanced Tai Chi that my shoulders first 'went'. Now going back to beginning - chapter 1 = Learning to Stand. Just what I need!)
Hi Linda, I’m about to ‘celebrate’ two years of PMR in March but am hovering around 10mg after a horrible flare end of 2016 put me back to the beginning. Also being a very active person in my previous life I’ve found it hard to find an appropriate exercise level. I’ve done Pilates for years and have continued with it but in a lower level class. Took a break when flare was starting as my arms were excruciating! Back at weekly class and am more sensible about how I push myself. Started yoga but find it extremely hard as poses are held. I’m trying to be better at stopping and not worrying about what everyone else is doing. I certainly feel the muscles I’ve worked following days. I also walk my dog and assume I should be able to do an hour no problem but at a slower pace, like yourself. I’m a keen golfer but that has taken a back seat until warmer weather and even then I am much more aware of what and how much I’m doing.
It’s so hard to identity what pains are aggravated by exercise which we think is good for us or if it’s a PMR flare. How much pain should we tolerate? I find myself permanently trying to work it out!
Hi Lochy - I guess i’m just confused, frustrated and fed up with the whole exercise thing! I have had PMR actually for 3 years next month - 5 months of trailing back and forth to Docs telling me she doesn’t know what’s wrong with me, by which time I was a mess, until I asked for a blood test!!! I will be 67 next month but until this hit me I was very active so that’s why finding it difficult to adjust! I guess too it is all about quality of life as regards pain levels (I do have quite a high pain threshold having had two kids without drugs!!) but do we push ourselves as you say and think oh it’s just normal pain from exercise and if so can we damage ourselves and make the PMR worse. I certainly don’t want another relapse having had two already! I think it has sunk in now that I’ll have to go very slowly with whatever I do exercise wise!!
I did Pilates all the way through (been at zero pred and fine for nearly a year) and walked miles. I was lucky that my energy levels never dipped (and I have a lot of energy) but I found Pilates invaluable particularly for keeping up muscle strength. I'm sure it's important to do something, whatever it is that suits you.
I thankfully listened to PMRpro and increased all exercise gradually. At first, I was embarrassed to stand at the back of the exercise class with 1-3 pound weights and leave after less than half the class. I worked out at a hard core body building gym with trainers for many years. Ego be damned, I went to physical therapy, got weekly massage, hired an older personal trainer, incorporated Tai Chi/Quigong, ...hated the first teacher, found a great one. Now I can complete some hour long Zumba classes, lift 5 pound weights and can walk between 2-6 miles. At least one day a week, I do nothing. All this took 8 months. Moving my arms and shoulders if they are a little sore really helps them feel better. I believe, pushing through can have positive results. Let us know how you do.
That is encouraging! I am so glad you are able to do so much. I do senior Zumba down here in Florida (for now) and that is pretty tame and works well. Walk, swim, bike ride, other things but you are right, take it slow and easy. I'm just NOW starting to body build again. Yeah!
Yeah is right! We overcome the challenges of our illness little by little! I did a very hard cardio/weight class and lasted 45 mins. It’s 7:00 pm and bedtime is soon! Please stay in touch.
My diagnosis is GCA (15 months now). But before diagnosis I had what I assumed was gradually worsening arthritis for several years, topped off by 'frozen shoulder', first one and then the other. Do wonder about connections.
Before all that I used to do Zumba too (always loved dancing), was in a walking group, and did both Pilates and Tai Chi for years. Had to give up Pilates first, and then Tai Chi - the arm movements became unmanageable. Still walked and did Zumba for a while but, when GCA struck, became too knackered to do anything, for months. The winter weather is not helping, but have realised the need to avoid total wipeout.
So have begun to do little bits of gentle 'zumba' on my own at home. Bit of stepping, some hip rotations etc, carrying light weights. This way = no pressure and no embarrasment. Then I'm also going back to Tai Chi, which I loved, but on an individual basis at first, using a book called 'Chi Kung, The Way of Energy' which, again, I can follow at my own pace, with gentler arm movements. For social aspects I went back to my old choir. Singing seems quite therapeutic, and just getting there and getting back does involve some exercise. OH keeps trying to convince me that cleaning and housework are good exercise - hmmm . . . .
As time passes and the weather improves, I hope to begin walking a bit more, and gradually to build on it all - with an emphasis on enjoyment. For me, enjoyment will be the key. That and sleep!
It is the fatigue that really gets to me too so like you I have decided to do my own thing at home now - I’ve got plenty of dance exercise DVD’s so can take my own time and rest when I want!
Hi Linda, you could start with the excellent you tube film from dr Paul lam ‘ tai chi for arteritis ‘ and when I actually started a class had a chair to rest if necessarily and do part of the form sitting down. And Yes take care and take your time, Aletta
I started Tai Chi last year, one year into PMR. I have a very patient teacher who is used to working with people with impaired mobility. She encourages me to do what I can but to stop if it gets too painful. I find my legs ache and become jelly like if I do too much that involves balance. My teacher tells us that if we have the intention to do the movements, that works too. So when I find the movements too strenuous I sit down or stop them and do them in my head. Repetitive arm movements make my arms and shoulders ache after a while so I just stop until the ache stops and then start again. No-one in the class minds and my teacher encourages me to pace myself. So its worth persevering with Tai Chi.
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