I have read a lot of posts on the topic, and many people write that they exercise a lot. Today, someone wrote about doing cardio, yoga, and cycling while being on 9 mg of prednisone. I am wondering about this, as I am never in a condition to do that. I am 56 and have had PMR (Polymyalgia Rheumatica) for 5 years. I am happy if I can cycle to the grocery store 1-2 km away, do light cleaning, cooking, and look after my grandsons (3 and 5). I love that I can take walks of 3 km on a good day and stay up until 11 PM.
I am on 12.5 mg of prednisone to be able to do that, but I still experience flare-ups if I overdo it, forget to have rest days, or believe I am almost in remission. People also seem to be able to work! I can only work as a private consultant for 10 hours a week. Luckily, I have been granted a pension while this hopefully burns out.
Am I taking too low a dose? Should I take more and aim for higher functionality?
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krillemy
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I think we're all very different, krillemy. I certainly can't do all you describe. I'm still learning to pace myself and not feel guilty about lack of housework and walking much further than a couple of 100 metres. Pottering around house and garden is my favourite occupation. Non-sufferers keep telling me to exercise more - ignorant ***s. Just go at your own pace.
I'm with you Random! I used to swim and cycle but I'm too exhausted these days to do either. A ten minute toddle along the beach is my limit. I'm on 3 and a half pred and in the grip of the dreaded deathly fatigue..... BUT making myself do that gentle walk and being out in the fresh air and inhaling all the sights and sound is SO therapeutic, I always return home reinvigorated.
I wrote a post a long time ago about exercise which included this paragraph -
YOUR PERSONAL CIRCUMSTANCES
As with all things PMR/GCA please don’t be disheartened if you read other members posts who seem to be cruising through their illness with exercise programmes that seem unobtainable to you. Be inspired perhaps, but everyone is different, we all had a different start points, whether that be age, fitness, or any other circumstance.
Just remember, you shouldn't EVER measure yourself against others, just YOUR personal standards.
Plus try and find something you enjoy!
We all what we can do - and if you are happy with that, then that’s the most important thing at the end of the day.
Thanks - it was a thought of "treat to target," as they say. But I guess I will have to settle for this. I used to be very active and strong, and I never sit down for long. Anyway, higher Pred will mean side effects, so there's that.
You can do what YOU can do - and everyone is different. The same applies to pretty much everything in PMR, no two people are the same and will react differently to PMR, pred, exercise, food, drink, anything you can think of. Never feel bad you can't manage what someone else says they do,
Hello, what you do is much more than what many, many others do! The key is to listen to your body and find that balance that keeps you exercising and active without compromising your well being. More Pred unlikely to be the answer, unless your doctor is in agreement, but finding that balance is key, and giving yourself rest days and ‘rewards’ as well! You have the mind set to get it right, good luck!!
As has been said, we are all different. It's hard for anyone else to give advice on what exercise you should be doing, as you can only do what you can do, and you have to become an expert at listening to your own body with PMR. If try to overdo it, you will most likely make yourself feel worse.
I am 66 next month and on 6 mg. It keeps me sufficiently pain free and mobile to go about my daily life, so long as I don't do anything foolish. Personally, I wouldn't raise the prednisolone so that I could exercise harder as I know that it would give me a false sense of being more well than I am. I know that without pred, I am still pretty unwell, and although the pred can make me feel like superwoman, I would just end up in a really bad way and take days to recover.
The exercise you can do will often depend on the muscles worst affected. I still find walking any distance too painful and riding my bike is an impossibility as I end up unable to walk for days after. That's because my hip area is worst affected. Though until earlier in the year, I was able to swim a kilometre without any discomfort or after effects, because my shoulder involvement was less than many. Yoga has not been possible for years for me as I find it far too painful and I even tried a beginner's class again a couple of months ago. Any real cardio work is out for me as I can't work hard enough to raise my heart rate enough. What I can do is swim, stretching exercises to preserve what mobility I have and I can use the weight machines if I am careful. Actually, the resistance machines are quite good cardio, as it happens. Anyway, at the moment, I have a house to empty out and clean to get ready for downsizing. I've decided that sorting stuff out, moving it about, taking it to the dump or the charity shop etc, is giving me quite enough exercise for the moment. And it is a slow job as I need to take lots of rest in between. Though I was surprised to find that those kind of activities are doing wonders for my general mobility.
That really does sound like me, although I can ride my bike at the moment, and it is much better than walking. I only walk in the same sneakers; if I change shoes, all hell breaks loose as I apparently then use slightly different muscles in my feet and knees, so they tire out and get painfull. Cardio is out of the question, so we will just die young of a heart attack! I swim in the sea—not for long, but it’s something. If I do more, I get pain in the used muscles and can’t do other everyday things.
Really, it is a good thought that more Pred makes you do more than you actually should be doing...
That's interesting about the swimming, as when I am in the pool, it is the one time when I feel normal, no pain or fatigue, especially if the water is a bit on the cold side. Though, I am finding it hard to get back into the swing of it after that flare I had earlier in the year.
I think looking after your young grandchildren is more than enough exercise if you do that frequently. I look after one 3 year old just for five hours once a week and it wears me out!!
Everyone is different. Prior to PMR I was teaching 10 exercise classes a week, cycling and walking. I almost lost my mobility altogether when PMR joined the other problems I have. Now I can cycle on a good day about 2km max. I can swim slowly for about 20 mins and can walk around my home. Given a trolley I can get around a small supermarket but the big ones require a mobility scooter or a rollator.
I've managed to keep my posture and mobility by using appropriate aids when necessary. I didn't want to end up housebound.
I had spinal decompression last year which has helped a great deal with pain and my leg no longer goes completely numb. I worked really hard after the surgery to improve my mobility and think I am at my best level now.
I don't set my expectations very high and still use appropriate aids depending on what I feel like. I have walking poles and sticks, mobility scooter, Rollator and electric bike so I choose whatever I need for any particular day.
In 2013, I was diagnosed with GCA, thenPMR. Getting through the very high doses of pred, a year later, was diagnosed with Cushings' disease due to pred medication. I joined this blog and they were very helpful w the slow careful lowering of pred. This worked better than what mayonnaise rheumatologists in New York City or recommending and prescribing. Was able to lower the pred, keep my eyesight and my adrenals began to function again . All difficult. This of method of lowering is one of the best I believe.
After my second (right) hip replacement, I began to have serious back problems, extreme pain, which began to cause mobility problems.
I am seeing a physiatrist.
I get what has been described as the bear hug of multiple sclerosis -- in trying to get up in the a.m. I have scoliosis in my left back (t 9 I believe).
Psyiatrist is not sure what this is. After walking in the city, the pain, at times can be severe-- spasms, almost to the point of rigidity.
I have found a net group and blog, would seem to exactly describe and define what I am experiencing. They call it SMA -- spinal muscle atrophy. After researching and reading + reading, on this, it seems that the spinal muscle is not properly utilizing protein in the muscle, if at all.
I am currently using almond oil w jojoba oil to massage my back. It helps.
Has anyone heard of this -? --- any correlation to those years of pred and GCA? Have to find a specialist to diagnose, but my mobility can be severely limited by this.
In the MRI of my back and neck -- I have read in one or two segments, there is some stenosis.
Any knowledge or advice -- would be much appreciated. Ty
You probably need to start a new post with your questions. Much better than asking a question in an existing thread.
The majority of members will get a notification of a new post, whereas only those who have saved this one, the author, and the person you replied to are likely to see this response.
You have hit on one of the many unresolved scientific mysteries about PMR: is the continuing fatigue that many suffer, despite treatment having brought about a high level of remission, due to: a) a side effect of the corticosteroids? b) a component of the disease process that has not responded as well? c) an unknown third variable? I have yet to come across any well-designed epidemiological studies into this question. They should start by looking at those who have recovered, to see what hangovers there are, if any.
The human immune system is incredibly complicated. It took 3800 million years to evolve. I'm amazed at how much scientists do know about it. There's always plenty more to find out.
"despite treatment having brought about a high level of remission,"
Except there are various sorts of remission and while you require pred or another drug you are only in drug-induced remission. The actual disease process is still active and attacking the body, the only difference is that the medication is relieving the inflammatory effects - and that includes tocilizumab in GCA. And there is a paper about how the autoimmune disorder is continuing and , in some cases, still causing damage despite apparently being under control, which came as a surprise to doctors. Unfortunately I don't have a reference.
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I swim in the sea—not for long, but it’s something. If I do more, I get pain in the used muscles and can’t do other everyday things.
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