I have had PMR for 2.5 years and came off Steroids last August.
I see my rheumatologist - only if I ask and it takes months to get an appointment as I am no longer 'acute' .
I had been finding exercise tough as I always seem to hurt but thought I must push on . Recently I have joined a gym group and do 1 hour work outs with Weights. I am finding this really tough and the instructor doesn't understand PMR . I want to continue but at a lower level but my question is ...is it safe to push oneself with training, especially with gym equipment post PMR ..Could I do any harm ??
Cant get an appointment with a professional for over a month
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“I had been finding exercise tough as I always seem to hurt but thought I must push on . Recently I have joined a gym group and do 1 hour work outs with Weights”
I think those comments should tell you that you are pushing yourself too hard! Why must you push on? Exercise should be beneficial and enjoyable (mainly) - not punishing.
Repetitive exercise especially with weights is not recommended during PMR, and I would suggest that your muscles are still struggling post PMR.
Try a more gentle form of exercise initially Yoga, Pilates, Tai Chi until your muscles are stronger, and then go on to something more strenuous, but you still need to build up gently!
I agree with Dorset Lady, your body is warning you that this is harmful. A gradual build up is more likely to stick. Have you had tests for anything else, like arthritis? The other worry I would have is a return of PMR. Studies have shown that it lasts 5.9 years on average, so 2.5 years is really quick. I am on a relatively low dose but I am aware that I am walking badly and have some pain. Nothing like the onset but significant, this is after 3 years 4 months. Brisk walks and stairs remain a challenge. I probably push myself too little.
Having read DL's comment and your reply - yes, you need to be more patient!!!
Alll the things we say on the forum about exercise in PMR still apply to people who are now healthy but haven't been able to exercise fully for whatever reason. To find your limits, choose an activity you know you can manage a given amount of and do that. Next day rest and assess whether you have any muscle soreness. If you don't, the next day add a few minutes/a couple of reps, depending on what sort of activity it was. If it was weights, start really small and just a few reps. Keep doing that, increasing on what was OK but only by a tiny amount, until you get a rest day where you just beginning to feel it. Go back to the previous level and do a couple of weeks at that level as training. Then add the small amount and see how you are now. It sounds slow - it isn't, it soon mounts up.
You have to start that training almost from scratch - and it is best to choose something you don't have to have a trainer for. You know what you can manage and why. They don't understand. I'd say you probably need to start with not more than half an hour in total and half the reps and probably well under half the weight if you decide to do weights. It will build up quite fast - but you have to walk before you can run.
If you have access to a pool that is a brilliant place to start - everything you do in water requires 7x the effort on land. But any trainer who works on the "no pain no gain" mantra has no business being a trainer. If there is pain it is a sign of damage - and your muscles are delicate after 2 years of PMR. If you go about it gently to start with you'll be fine.
Well done on getting off steroids. I’m 2.5 years in and still at 4mgs.
I was a competitive rower and marathon runner so I get the whole “pushing through “ thing. I’ve been so frustrated at my limited abilities. But I agree with all the advice here, take it easy and build up slowly with more gentle exercises. You’ll get there and with a bit of luck, so will I. 😉
Hi, I need your help here. I've recently been diagnosed & on 15mg of Pred, but ARE a competitive runner. Can't bring myself to say WAS yet without coming out in a cold sweat and getting depressed/feeling sorry for myself. How did you cope with not running or training as I just can't and every time i feel able, I still kid myself i'm better, run a bit slower, really enjoy it and get a buzz, but still make myself ill for days after - did it last week and week before & it's driving me crazy! I just can't cope with the low self-esteem and isolation of not running, and i hate feeling sorry myself . I even considered asking my GP if i could increase my Pred to allow me to run - crazy I know. (I know I'm going to get another lecture from regulars again on here, but they aren't runners so really can't understand!)
Have you thought of seeking counselling? It is a bereavement as much as losing a partner or other family member - you have lost your way of life and, to some extent, something that you see as your identity. The point at which you are able to live well with PMR is when you are able to accept where you are at the moment.
Losing what was your lifestyle is very hard. I used to lead walks for my walking group and I really enjoyed it so much, especially sharing my love of wild flowers etc. So when I couldn't manage it anymore because of PMR it changed my way of looking at myself and I got really depressed. Having counselling helped me to come to terms with the situation, but I had to work my way through a similar grieving state and loss of identity as I had when my husband died. Once I learned, with my counsellor's, help to accept what I felt and to change my lifestyle to live with PMR, I found other ways of living well. Hopefully I'm coming to the end of my PMR journey (I'm on 2 mg Pred. after almost 3 years) and I've been able to walk in our nature reserves once more. But I've learned to pace myself and that's really important. If I don't, I'm very quickly reminded that I'm not quite out of the woods yet. Its a journey that takes courage and patience but don't give up hope.
Thank you both & I really appreciate not being lectured. I've had a lot of problems and challenges in my life, and running really was a lifesaver for me. Whenever I had a crisis, I go for a run & think to myself, whatever my problems are, at least I'm fit & I CAN run & life was good again.................. for me, running was life. Now I have nothing & I'm good for nothing.
I have found your contributions to the forum interesting and stimulating - made me think about things from a different point of view, which is refreshing.
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Until you can do it to the level that makes you feel good replace it with another skill. Perhaps look at walking football or bowls. something that's not so punishing on the body but allows you to get better at a physical skill. You might even try a bit of pool training. Years ago 8 got much fitter just walking and swimming in a swimming pool. You will run again but not yet. Perhaps a sports psychologist may help too. They deal with injured athletes throughout their careers.
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Thanks for trying to help, its really appreciated by us both. My logical self has just organised some counselling for my emotional one who is still grieving inside his personal nightmare & wishes he would wake up soon.
Oh gosh, please don’t think you’re good for nothing! That simply isn’t true. I understand how you feel. There’s not a lot of activities that give you that special feeling you get from a good run. But while you’re going through this, you need to find another outlet. When PMR first started to really erode my strength, I gave up completely but friends in my running club who were nursing injuries or taking a break encouraged me to come out and just walk. Even that was too much at times but I went and it kept me in touch with everyone. That looks like a good group in your profile pic. Could you lean on them for support or maybe start a “walking wounded” group yourself? Could you volunteer at your local Parkrun or help out with coaching?
Could you try swimming? Anything to just get moving gently for a while until you recover. And you will recover. PMR will make you feel depressed and not just by stealing your strength, it messes with your head. A friend of mine recently tore a cruciate ligament and needs surgery. Even if it’s successful, he won’t be back running for quite some time. He’s very upset too. These are things that happen to us, they don’t define us. The road back to health might seem long and hard, but you’ve tackled roads like this before. One foot in front of the other, one day at a time. And keep in touch, we need you here.
Thankyou so much - it's really great to have such a great bunch of really lovely people on here. You do make me feel useful and give me back some of my self-esteem. Guess i'm not emotionally ready yet to accept that my competitive running is now over for several years nor have i accepted that i do have a chronic condition - hurts me and angers me even to type this! I have also decided to resign from my post as club secretary as i find it too upsetting and exhausting going to meetings and wrting minutes etc. I can no longer do the role justice.
You have to do what feels right for you. Try not to loose touch with your club though, I got good support from mine once I got my head around participating differently.
Thanks - no i won't as my wife is still heavily involved and competes in all the races. She can't drive, so i have to take her to them all. I had a gut wrenching moment yesterday when the beginners group i've recently joined asked if i could join them in their 1st 10K next week - sensibly i declined. All they ever discuss now is this race so i again feel like an outsider. Last year i won 2nd place in my age group in this race, now i can't even do it at a jog!
Many good comments have already been shared. To receive direction from someone who is not familiar with PMR can result in disastrous, painful, outcomes.
I found over the last year I have been able to go from slow, easy exercises in a warm pool, to deep water aqua size (50 minute classes twice a week, then three times per week. With my last knee injection I’ve reintroduced 20 minute walks, and now golfing with a cart once per week. I even managed 20 minutes on the tennis courts once a week (no running).
Slow and steady is key. Listen to your body and proceed accordingly. Good luck.
My answer is No , not in the way you have been doing it less than one year after coming of Pred and feeling PMR free.
From the reaction of your body to gym work , especially with weights , I think it agrees with me.
You learnt with PMR that you needed to pace yourself and your activities or a flare of inflammation could occur.
That lesson of listening to your body and it's need for pacing and rest is a lesson for life .
My old Sports Therapist , what seems like centuries ago , told me that an injury or illness takes 21/2-3 times the amount of time to recover from to 100% body fitness as the time you have the condition itself.
That obviously doesn't mean you can't do anything , it just means it is good to remain conscious of the weakness that still exists in the body , and build up the activity in a way that protects you from a recurring complaint.
You don't push yourself , "feeling the burn" , or, " no pain , no gain" are not good mantras for healthy athletes , let alone people recovering body capacity after years of illness , and those ideas are considered outdated and counter productive by today's sports scientists.
Gym equipment and especially weights are not thought to be the best way to help rebuild muscle mass and strength for people who have , or have had, joint inflammation conditions , because the muscle and joint weakness caused by the condition can make you more prone to injury or Fatigue with these activities.
Classes are still meant to be built up slowly through various skill levels and you should still consider taking breaks in classes or leaving out certain exercises that can put unnecessary pressure on joints that could have reoccurring issues.
Exercises in water can actually build more muscle mass because of the water resistance with less pressure on the joints .
More rest time between classes , longer warm ups and cooling down exercises and a warm shower are still definitely required no matter what sport you are doing.
If the gym is feeling tough , it's not right for you , except for in short sessions, and other more joint friendly exercises would be better suited , you will probably get more benefit from them too as you will be able to more exercise with less intensive activities.
Exercise after all should be a pleasure not a chore xx
You’ve had some very good advice here which I agree with having had PMR for about the same time as you if not a bit longer and hovering on 1.5 mg Pred. I’ve been an avid exerciser all my life. I now alternate between Pilates and aqua aerobics with a daily walk ( about 1/2 miles) and find that if i pace myself, this really works. I’ve been considering starting on light weights to start to rebuild my muscles but I realise this will be very light, very slowly and very short sessions. I appreciate how difficult it is to go slowly when you’re so used to being active. On the other hand, I feel very lucky that I’m able to do as much as I can, am not in pain and have wonderful friends. This forum has been a godsend.
Thank you all for your valued comments I think this site is so good - you can wait for months to speak to a medic and get a vague answer to your question - here it is instant...
Unless you are addicted to being a gym rat, my feeling is that gradually resuming the activities of daily life is the best preparation for living a post-PMR normal life.
Even that, though, can come with bumps.
The first gardening cleanup work I did this spring (3rd month post-pred) really laid me low for a day or two, but by last week (6 months post-pred) I was able to reach and pull and dig and clip much of the day, two days in a row, with only minor “niggles” the next day.
And though I’m not much of a swimmer, and have never (voluntarily) done laps, I find that with a pool noodle around my chest, I have enough buoyancy to use my arms and legs to propel myself down the pool without worrying about sinking or getting water in my ears or chlorine in my hair. (The water has to be pretty warm before I’ll go in, so probably not gonna happen at an athletic center where they cater to long-distance lap-swimmers who like it cold.)
I used to be a long distance girl but never liked it cold , even in the sea!
The noodles are great for others things in the water too without doing laps , have you tried standing in the warmer pool and doing the noodle exercises ?
I use the floats on the (disconnected) deep end float line to do resistance work for my arms. And sitting on one requires me to fight for balance, which has got to be good for the core.
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