Am I unwise trying to overcome muscle weakness by swimming and regularly visiting the gym.

[Mischevious]

Todays messages have made me wonder about my approach to GCA. I am aware, from reading other people's messages that my symptoms are not as bad as those of many other people. Following a visit to my rheumy at the end of last year, where I was told that it is difficult to determine if weak muscles is a symptom of GCA or an effect of pred, I decided to join a gym to attempt to overcome the weakness. Today, having read that pred only manages the symptoms, couples with the fact that recently I have had a painful and still back, I wonder if I am wise in adopting my way of dealing with the weakness.

[PMRpro Ambassador]

It all depends on the person - and on the exercise. I would counsel against excessive use of exercises with reps - the primary problem with the PMR part of this vasculitis is that the blood supply to the muscles is compromised and that is what sometimes leads to the claudication pain some people experience: where you get pain after walking (or chewing if it is your jaw) which goes away when you stop only to start again when you resume the activity.

When you do exercise that involves reps or holding a sustained position the muscle tires as its oxygen supply is used up and not replaced, the "lactate problem" kicks in and the substances aren't removed from the exercising muscle - so there is muscle pain later. It takes much longer to recover and for the pain to go away - and if you go back and do more exercise then the whole thing starts to pile up. It also means that you really shouldn't exercise on consecutive days - always allow 1 or 2 days between to recover until you have built up the muscle strength. It does improve, it is one of the recommended ways of putting off surgery for peripheral arterial disease which is the usual cause of claudication - you exercise to your limit and with time that limit extends. And eventually you will be able to do something on 2 days running!

Using resistance weights is good - but instead of trying to do 2 or 3 reps of 10x it is better to try just 1 set of up to 5. If that works you could increase by 1 until you find the limit you can manage - maybe 6 is fine, 7 is not. The same concept applies to using the bike or cross trainer. Don't ever exercise to exhaustion - do a few minutes and increase by 1 min each time until you find where your limit is - be strict though and don't be tempted to think "I feel good, I'll do more...". With the bike - use a reclining one perhaps - it puts far less strain on the back muscles.

I skied until last year when I was unable to for various reasons - but at the beginning of the season I struggled to do 2 short runs. I skied 2 or 3 times a week and by after Christmas could ski for an hour or more - but only short runs so I had a rest on the lift between runs. By the end of the season I could manage the longer runs, maybe with a short pause to look at the view half way! But if I tried a long run too soon I had muscle pain for days and could barely stand because my legs felt weak.

You mention back pain - I'm not quite sure what you meant though. There are a couple of things that are common alongside PMR that cause back pain and if you have these problems doing more exercise will make it worse not better.

Exercise isn't bad - used properly it can be very good. But it must be used properly and carefully. What it CAN'T and WON'T do is cure the PMR - despite what a few people have tried to claim in forums before now. It is an important part of avoiding the muscle problems that can occur with pred. If, however, anyone has muscle wasting that is noticeable and a problem they need to discuss it with their doctor. Strangely, I have taken 3 different forms of pred, at similar doses, and with one I had very bad muscle wasting - I was switched to another and I can now walk fairly long distances and my legs have calves again!

[Mischevious in reply to PMRpro]

Thanks for the advice, I now understand why I feel as I do after exercising and how to manage it better in future.

[PMRpro Ambassador in reply to Mischevious]

Great - just ask if there's anything that isn't clear or you are not sure about. I managed my PMR at the gym for the first 5 years but I didn't have the complication of pred to wonder about - what I did have to do was change what I did dramatically after the symptoms started - aqua classes done within my limits were brilliant, Pilates and yoga adjusted by my fantastic instructors were also good - and I and another lady found using the PowerPlate was very good! There are proper studies that back that up as a suitable muscle builder for patients with limited mobility - teenagers doing powerplate in addition to their normal training performed better in competition than students doing just the normal training. Another study demonstrated it was an ideal tool for use in residential homes to improve steadiness and mobility and used carefully was suitable for even frail elderly patients.

[ConventCassie in reply to PMRpro]

There are 3 different kinds of Pred? I don’t suppose you’d reveal the one that didn’t work for you.

[PMRpro Ambassador in reply to ConventCassie]

There are prednisone, prednisolone and methyl prednisolone - all medium acting corticosteroids that are variously used depending on the country. The one I had problems with was methyl predisolone/Medrol. But many people take without problems. Everyone is different.

[ConventCassie in reply to PMRpro]

Thank you.

[mickt]

Ive gca and have started swimming again .this time last year was swimming 50 lengths.Done about 20 not all in one go mind today.My rheumatologist has encouraged me to start swimming again which im glad about.The weightlessness is great.Mind when I get out I stiffen up and anyone getting changed next to me has to put up with expletive or 3 while trying to get dressed.Its good for your mental well being too I think and its good to be back in pool.Walking is great exercise and it costs nowt.Good luck with whatever exercise regime you do.

[Mischevious in reply to mickt]

Thanks Mickt. Your reply shows me that I am fortunate in as much as my symptoms do not appear to be anywhere near as bad as many other contributors. When I started swimming I could only manage 30 lengths and no more than 6 in one go. I have slowly increased to the extent that last Sunday I did 80 lengths - 40 before resting, then 30 followed by 10.

[mickt in reply to Mischevious]

That's brilliant 80 lengths .I think going at your own pace important .It sounds like your flying doing that many lengths.

[PMRpro Ambassador]

I can only say that I couldn't swim with PMR but I did enjoy aqua classes in a warm pool with steps down into it. A cool pool just made my muscles seize up and for a long time I couldn't have got into one, even with steps. Using the ladder has been impossible, I'd probably still struggle now, and for some time I was simply afraid to even try - I was afraid they'd have to get the disabled hoist out.

Swimming even 10 lengths would have been an achievement. 18 months ago I struggled to walk 200 yds with crutches. Now I can walk for up to an hour - and back after a rest with lunch. So for anyone looking in who is deterred by people with PMR managing 80 lengths - that is quite exceptional!!!!! But what is certain is that it will get better - honestly! You may not get back to where you were and it may be different exercise you can manage, you may even develop something else - having PMR doesn't stop you having other problems as a few on here will attest to - and that may put the mockers on what you can do. But life with PMR and pred will not stay the same forever.

[MJJ7960]

Stretches in a warm pool work for me but not the steady activity of laps. Same with walking. A break every hour to go around the block but not a steady mile. Being immobile brings more pain but too much movement at a stretch does as well. I sit on a balance ball at work, which feels like it keeps everything moving just the right amount. We are all different and just have to be gentle friends with our bodies, whatever they can do, eh?

[Mischevious]

I hope that I have not deterred anyone by saying how far I am able to swim, my intention was to encourage by illustrating that with a slow, gentle approach things can get better.

[honeyadams]

My rheumy said aerobic exercise only, not weight or strength training. He said I would have some de-conditioning and that has certainly been the case. I don't do much due to the extreme fatigue most of the time.

[PMRpro Ambassador in reply to honeyadams]

Surprised your rheumy said no weight/strength training as there are studies that show they can be beneficial - in moderation and with care.

[MJJ7960]

Not to worry, Mischevious, I appreciate hearing about all ranges of experience. We should not fear sharing: the good, the bad, the ugly. No judgment. No envy. Well, maybe a little. Just inspiration, support, encouragement. Keep up what has worked so well for you! Things do get better in the long run.