Any consensus on amount of exercise: aerobic, st... - PMRGCAuk
Any consensus on amount of exercise: aerobic, stretching and resistance types that are considered optimal for PMR? To each his own?
Hello hawkeye1
Whilst there is no hard and fast rule as to how much we can exercise when suffering from PMR, I learnt very early on that if I overdid things on a good day, I would suffer payback on the next. I then decided to stick to a simple daily walk (a good weight bearing exercise for our bones whilst they are at risk from the steroids), even if I could only manage 10 minutes on some days before pain hit, plus a Tai Chi class for its gentle movement, balance, stretching and breathing exercises. At first I could only reach my arms a very short way up but never pushed it and very gradually as both the inflammation and the steroid dose decreased, I improved.
We are all different in both our response to the disease itself and to the steroids and will, therefore, find that what suits one may not suit another, but of one thing I am certain and that is that rather than push ourselves too far we need to learn to pace ourselves if the steroids are to be given a chance to do their job of getting control of the inflammation in our muscles.
You have done very well to get from 50mg to 10mg of Pred already but it might be wise to go more slowly with the reductions now - the lower the dose, the higher the percentage reduction and at 9.2 your CRP is still showing signs of inflammation.
Hope that helps.
Thanks, Celtic. I have learned the one step forward and two steps back lesson from what I thought was scaled down exercise. At least it sure is compared to pre-diagnosis. I am on a tight rope with CRP at 9.2, as this grey zone figure could be accounted for by grumbling PMR or inflammation secondary to overuse. I and my rheum are reluctant to bump up steroid dose.
I have been under the supervision of a personal trainer who urged me on with a regimen that has resulted in bilateral knee effusions and shoulder pain, a significant pain increase and restricted range of motion/mobility in all these joints. I have sworn off weights, pool and spin bike and am limiting myself to walking and stretch/yoga/pilates exercise for now. I am trying to stay ahead of weight gain and steroid muscle wasting, having been in good exercise before this came along. It is very difficult for me to distinguish PMR flare from acute on chronic MSK pain associated with activity.
Wish I knew the answer to the exercise question! When I was in course of being diagnosed and pain free cos I was on 30mg steriods, the physio I was seeing referred me for some "exercise on prescription" (this was mainly cos an MRI scan revealed some age-related degeneration in my hips, and anything I can do to strengthen the muscles will delay the possibility of a hip replacement in future) Took me three months to find the time to actually have the initial assessment (really busy at work) and then couple of days later I fell and hurt my knee really badly so did not get back for 2 weeks. WHen I went back it coincided with a reduction from 10/12.5mg pred on alternate days so don't know if the subsequent pain was due to reduction or stiffness etc from the exercise. That was 5 days ago and I haven't been back yet - might try and go tomorrow.
I have tried since the horrid condition started to keep walking (have two mad spaniels) but it was difficult before I was put on the pred - some days just managed about 100 yards and then my husband would finish walking the dogs whilst I staggered back to the house.
Now my hip is making it difficult and I don't know if that is the PMR or the underlying degeneration - which I was told in August was totally consistent with my age
I guess its a question of doing whatever doesn't cause to much of a reaction, and what your level of fitness was before all this hit you. Weight bearing is good for our bones, aquarobics/swimming is good for generally - I just feel it is important to keep mobile - the old use it or lose it principle!
Good luck, keep smiling ... and moving!
Thank you, Helen. We all seem to share the spirit of staying active. As each day is different, and overuse on one day may set you back for several days, it is anything but a precise exercise to ascribe cause and effect. It has been stated here that stretching exercises and weight bearing exercises may be the most important things. Best of luck to you, too.
Agree with others: very much depends on the individual, level of fitness/ability you already had, age etc. In general exercise is highly recommended -- it doesn't seem like it initially when you start but exercise starts to improve the pain and it is important to slightly push yourself I think beyond what feels comfortable. Mainly because there is no 'comfortable' for most of us, and we all benefit from exercise. I was fairly fit (fitness swimmer, walker and cyclist) before PMR and found I could (sometimes carefully) do all these things but with far less distance and exertion. We all NEED weight bearing exercise like a daily walk to because of osteoporosis risk of steroids. There is somewhere a presentation where a physio recommended waling I think about a mile as vigorously as possible, daily if possible.
I found swimming hugely beneficial -- the best of all exercises. Before I went on steroids (before PMR diagnosis) swimming for a mile would actually get rid of almost all my PMR pain for hours after the swim. My theory is that exercise and swimming in particular opens up the narrowed blood vessels we get with PMR and which bring on the pain. My own totally unscientific theory/gut feeling is that daily exercise especially swimming -- and as vigorously as one is capable of, always a bit beyond the comfort zone (pain threshold is way too low for us with PMR! so we need to push ourselves a bit)-- helps very much in improving the condition.
With swimming -- I always found that for the first 10 minutes or so, turning (I don't do flip turns but normally would turn fast) was slow and slightly painful and I would be very stiff. But then the stiffness would begin to go and I'd be so much more flexible after 20 minutes or so and feel so much better getting out of the pool.
I am not sure that resistance is actually all that beneficial for PMR -- stretching definitely, and aerobic exercise that gets the heart rate up (and hence gets blood moving which can only help our poor vessels) -- yes. Weight-bearing each day -- essential (they recommend at least 30-45 minutes walking daily). I think resistence would only have caused pain, for me.
Thanks, Pipestrelle. We sound similar in terms of pre diagnosis fitness/exercise status and current approach. I would like to use the pool more, but previous back injuries are aggravated by swimming the freestyle stroke, my strongest stroke. Perhaps this is the time to work on backstroke and breast stroke and downplay freestyle or vary my strokes more.
It seems that there is a general dislike for resistance training among PMR patients. If anyone out there has come up with tolerable regimens, I would like to hear. I reckon the guiding light is to progress at a snail's pace, which is not a popular style. No pain, no gain, but within reason! I have certainly learned that lately. Cheers!
If you can find a physio familiar with PMR, that would be an excellent person to consult (and I'd be interested to know their thoughts). I think any swimming including gentle aquacise really helps -- a lot of people here of all fitness levels have found gentle aquacise very beneficial. With swimming, I think any movement works -- you could do back or breast; you could do kicking lengths with a board; you could do various types of aquacise which get the heart rate going. Over the past two years that I have had PMR (and thankfully, believe I am about to finish the whole steroid routine -- pain gone and am down to .5mg preds after 20 months on it, so it can get better!) and participation on various forums the most consistent thumbs up from all ages goes to swimming, when it comes to effective exercise. The one caveat is that it and cycling are not weight-bearing, so walking daily is needed too. Someone once described walking as the PMR waddle and I sure had that due to stiffness but still could do a couple of miles with the dogs except when PMR was at its worst (I got a complication with irritated knees for a few months).
After posting I thought I should have said that many people do find that if they do too much, they do suffer the next day or two. I found this initially too. So there's no clear approach and much has to be cautiously tried and tested (and things do go up and down with this frustrating condition). But I do feel we all do need to push beyond what we feel is comfortable and doesn't hurt at all or we'd really do so very little. One thing that really kept me sane was realising that once I cautiously -- using the kerb for extra height -- got on to my bicycle, I could cycle slowly and carefully, and that meant I was not stuck, dependent on driving or public transport; gave me my independence. I regularly cycled this way once a month the 10 mile round trip to a meeting across town -- took me a third longer than it used to, but even at PMR's worst, I found I could do this type of exercise.
Others may find they can do much more -- especially men -- as PMR often seems to be less severe and shorter-term for men.
Just do not think all is still the same and uselessly battle the disease with frustration and anger. It took me a couple of months to accept that I had it, that things had changed, and that it was time to look forward towards what I could do and where I'd like to get; not focus on what I used to do and felt I had lost. Have a sense of humour too (putting on underwear and bras had to be the most ridiculously comical --if painful! -- event each day! Who would ever have thought). It will be tough at times but then hopefully it will slow but sure, improve. and I do mean *slow* -- increments of improvement are really small but one day you realise you just did something you weren't able to do a month or two earlier. 
I am finding in the past few days that doing the Bikram yoga routine at room temperature, in addition to different stretching routines, eases shoulder girdle and pelvic pain. I tried aquasizes, tolerable. Spin bike intolerable. It and walking both cause leg pain, knee stiffness and knee swelling, but I will persist in order to load my skeleton and discourage the development of osteopenia/porosis. Thanks again for your insights, Pipistrelle.
Oh yikes -- I wouldn't do the spin cycling -- think that is way too aggressive and likely to cause knock-on affects to the joints -- I was doing gentle cycling around town. And I think I had far fewer problems than many do but could never have been doing really active gym-type exercise, outside of swimming laps. I could barely do even basic yoga for months and months. Walking is important though. But if your knees are swelling then there could be other things going on that should be checked and I sure wouldn't continue to do that exercise if it is causing serious problems.
I went though bad issues with knees -- took a couple of months to resolve, with advice from an orthopedist. I did however do daily easy walks. You could get the swelling if you are dropping the prednisone too quickly and doing too much -- remember the other exercise could be creating the problems that are then exacerbated by walking (or it is more apparent when walking). It's good to get some professional advice on what is productive and what is potentially damaging in terms of exercise. If there's a lot of joint inflammation it also may be wise to talk to your rheumatologist as they may wish to reconsider the diagnosis or have someone in orthopedics see if there are some underlying additional problems with the knee joints. My orthopedist explained that having the PMR on top of an existing issue would easily cause fluid retention and create joint problems.
I could still (fitness) swim with the knee problems though. But maximum was about a mile.
