I have had PMR for at least 2 years and successfully did a slow taper from 15mg to 0. I took no prednizone for about 3 months. Trying to keep my weight down I was walking for an hour a day, but the following day I started to get aches in the front of my thigh muscles, especially if I climbed too many hills or steps.This would put me out of action for a day or two. I then started taking 5mg which helped. My question is, am I adopting the right approach or does more activity improve my situation if I can work through the aches in my thighs?
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Kind Regards John
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hiandri
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Hello hiandri. I am 18 months into my journey, and my thigh muscles are a real problem, any walking is painful. Pleased for you that you can manage steps and hills, for me just looking at them is a problem, I know what it would hurt like. A slope up or down can be a problem at times. For me, more activity means more pain when doing it. I hope it is easier for you. Sorry that I can't give you any advice, but best of luck with your approach to your PMR. Trevor.
I started weight training about 6 months after my diagnosis to help with the bone issues. I really don’t know it it helps the PMR but I found it didn’t make it worse. And it made me feel better about myself. I’ve lost 11/2 stone. Through that walking and diet. I have been taking pred throughout and I’m now trying to reduce from 4 to 3. I’ve just passed my 2 year stage.
Hi BethandHoney2017, thanks for your reply. I think the gym helps but over 10 years I never found it good for weight loss, unless I would have been twice the size if I had not gone of course! John
Advice from my GP was to walk through any stiffness so I do try and walk for at least 30 mins a day and I find yoga really helps.PMR hits me most in the hips and thighs so and I find yoga hip opening exercises really helpful. Currently on 8 mg a day and feeling ok 🙂. Generally feel stiffer and so tired first few days after a reduction but just sleep my way through it. Best wishes for a happy and healthy new year.
That’s interesting. I used to do yoga and Pilates, just got back to the yoga but Pilates class (reformer) was really full on and not sure I am ready for that just yet!
You need an experienced properly trained instructor who can show you how to modify what you do and how you do it. I went to a multi-level Pilates class - no-one ever tried to "keep up" with the best for show, we all adapted the level to fit us for the day! It was a life-saver for me with PMR and no pred. Iyengha yoga with a good instructor was good too - especially for hips and shoulders.
Hi I think that is the right approach, you just begin to wonder if it will ever go away regardless of what one does! After a slow 2 year taper I thought I had it licked but it was obviously hiding!! John
The right exercise for the right amount of time for you will do great things in helping to reduce your side effects and improve your ability to Taper .
The wrong exercise , pushing yourself to keep doing what you did before , exercises done for too long without rests , or after an already physically active day is just as likely to have you stuck in bed or having a Flare for days.
Like all parts of your recovery , exercise needs to be balanced and work with your other Self Care changes like Diet , Relaxation, Brain Training and Medication .
If you haven't done much before , or you were very active , PMR or GCA will have exactly the same impact on your ability to exercise no matter how Fit you were when you got it until the Condition is controlled by your Medication and your body is used to it.
All exercise needs to be done from a small start after Treatment begins , gradually built up and you are better doing only part of classes , having a chair for rests and water to drink as if you try too much too soon the exercise won't be as Positive as it could be.
Tai Chi , Quigong , Pilates , AquaFit for Arthritis , Gentle Swimming and Walking on level terrain are the best things to start gradually.
Then try Nordic Walking , Stationery Exercise Bike , lengthen your time doing other exercises.
Interesting sports can be tried though that you mightn't have thought of that improve mobility and balance and Positivity like Dancing , Juggling and easy Circus skills , this year I am going to return to Beginners level Fencing .
Yoga,actually isn't a good thing to start as a new sport and has to be done carefully even as a regular Yoga follower before PMR as it does put more pressure on the pain points , even in the beginners classes that involve less held positions.
Yoga Enthusiasts with experience are also recommended to return to only the lightest of rotations when Rheumatoid and Arthritic and Chronic Pain issues occur and very slowly rebuild their routine, as they too use higher dose steroids , which can have an effect on the elasticity of your ligaments similar to a Connective Tissue issue. And yes , this is based on advice from various websites and my Physio.
No jogging and running until your exercise level has been built up by walking and gentle exercise over months. For exactly the same reasons , it can cause injuries , Flares and days on you back instead of enjoying yourself .
No weights either , not even light ones in your first months. Same reason how it stretches the ligaments and puts too much pressure on joints with unstable inflammation.
Gyms aren't great , outdoor cycling can have you on your back because of the terrain , as can raquet sports , horse riding or Archery ( this annoys me particularly) .
Basically try and do some exercise each day , unless you have a Flare or an infection but at a sensible level and not for as long or with the ' No Pain , No Gain ' ideas of the past.
Exercise with Chronic illnesses is all about adapting to your bodies needs on that day and , " No Pain , All Gain" is what you are working for . Build up slow you will get active and feel better much quicker , push to do what you did before and rather than helping g you get fit you could be stuck off and in for days doing no activity at all which isn't good.
Just don't forget there is a lot of hidden exercise in a day too , and on some days that is enough , like baby sitting , gardening , cleaning your house or car , cooking and doing jobs with physical activity. If you are doing them you may only want to do gentle stretches on a busy day to improve your stiffness and warm up . Days with less Domestic or Work activity are the days to try longer exercises and activities.
What great reply, thank you for your effort which never ceases to amazing me from people on this site. For the record I am a male 71yrs at the lower end of the sympton scale for PMR thank goodness. I'm 98kgs , 8 - 10kgs more than I want and struggle to reduce (stop eating I hear you scream!) I have taken on board all your good advice and will increase my swimming as we have a lap pool in our apartments. Hope you have an improved New Year and all the best. John
I found exercise really helpful but I think you should listen to your body and adapt physical activity accordingly. Best for me was walking (I reckon simply being outside was part of the benefit), plus static bike and cross trainer at the gym. I did a light workout when I didn't feel up to much and that definitely helped, but when I pushed myself to do more than I felt up to it was counter-productive. Everyone varies in how they react and what suits one person may not suit another, so take it easy - and good luck.
Thanks Cecily13, you are right, work to your own level and if you want to push the boundaries do it slowly. Wish I enjoyed doing the static bike more than I do. John
I managed PMR with exercise and no pred for 5 years - I had no choice, I wasn't diagnosed. But my exercise was very limited to aquafit to be able to move at all in the morning! Having done a class each morning I could manage a Pilates or Iyengha yoga class. But there was no way I could have walked a mile - if I couldn't drive pretty much to the door I couldn't go anywhere much. One of the early severe signs of PMR for me was thigh claudication due to inadequate oxygen supply to the quads (front of the thigh) when I tried to use the crosstrainer - hence changing to a gym with a warm pool.
While PMR is active the autoimmune disorder is attacking the tissues and compromising the blood flow to the muscles making them intolerant of acute exercise and too much exercise even after "training". If you try to do too much then you develop DOMS (delayed onset muscle soreness) which is more than you would expect for the amount of exercise done and takes to longer to recover from. While taking pred the inflammation is relieved and you can train the muscles by very slowly increasing how much you do.
I would say your PMR is still active - only 1 in 3 patients is able to get off pred in 2 years, half need up to 6 years - so obviously half take even longer. Exercise will NOT cure PMR - although it may improve the stiffness as the blood flow to the muscles is increased. Warmth does that too - I could move better after the sauna/steam room but it didn't have a massive effect. A glass of wine also achieved better blood flow due to vascodilation! Once I got pred I was able to do a lot more without payback next day.
You need both pred and exercise if the PMR is still active - and if you were still OK at 1mg and it took a few months to deteriorate I;d say you will be able to get to a much lower dose again.
Another great educational post, you never disappoint! Your explanation of the pain process was very helpful, the info on oxygen and heat informative. I am confident of getting back to zero in the not too distant future. Thank you once again for your support and reply. John
It is actually recommended that people on pred maintain some sort of exercise, even if it's just walking and perhaps a few stretches. It depends a bit on how fit you were before fallling ill. This is important to maintain muscle health as pred can cause muscle weakening. On the other hand strenuous training is not recommended, even for those who pre-PMR were very fit, not in the early stages anyway. As PMR/GCA begins to recede then regular training can recommence, but with an awareness that we will remain a bit more susceptible to injury for some time.
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