PMR, predniso e

Hi Kathy, pre diagnosis and therefore pre preds treatment the more I moved around, walking, etc, the less pain I was in. But as you say there are areas of the body that are not affected by exercise. Regards, christina 

Not sure if resting helps the pain - I find I have to rest more because of the fatigue.  My muscle pain reduced very dramatically within hour of starting preds.  I've only every had 'twinges' now and then if I push myself!

It's a double edged sword - or should that be a twisted edge sword?

One of the aspects of PMR is something called myogelosis - when you sit for more than a short period the muscles "gel", stiffen up and need to be persuaded to move again, which can be painful. It's a bit like when you are making jelly/jello - as it gets to the setting stage if you keep stirring it it won't set firmly. 

On the other hand, your muscles are intolerant of acute exercise. They won't tell you that you are asking them to do is too much. Nor do they recover after exercise like they should, the stiffness you'd expect from maybe running a mile or so without training appears after a walk of a similar distance and instead of being gone by the next day it can last for days. Really overdo things and it can last much much longer.

Worst here is doing repetitive or sustained actions without frequent rests - the muscles become starved of oxygen because of poor blood flow and tire easily. Often the same happens if you need to raise your arms above shoulder level to wash or comb your hair, get something out of a cupboard.

So rest in the sense of not doing the things you know from experience will cause trouble and in the sense of not over-tiring your muscles - but keep moving gently to stop them gelling too much. Know your limits - what you can lift, how far you can walk, what you can manage - and rest frequently while doing them. Then you will actually manage to do more in total. 

And you need to rest because of the fatigue - that is nothing to do with the pred, it is a component of the autoimmune disorder that causes the symptoms we call PMR. Every one of us can tell a story of having felt as if we have hit a brick wall, one minute we were fine, the next we weren't. One lady said that on a shopping expedition she would feel as if she wanted to crawl under the dress racks and go to sleep. Another lady was found by a neighbour sitting on his garden wall, just round the corner from home, she couldn't walk any further. It isn't just the physical exhaustion, the fatigue becomes brain fog, you can't think, make a decision. For some people the pred makes that worse. If you plan in a rest during the day it often means you will last through to a normal bedtime - and not be bad tempered and crotchety for half the day. You may avoid falling asleep during dinner (has happened to me) or in front of the TV. 

Google the spoons theory by Christina Miseriando - a modern-day parable for people with a chronic illness like PMR.

Hi Kathy,

Like John, the prednisone takes care of most of the pain for me.  My PMR affects my butt, thighs and calves so no neck issues.  

I do find that, if I am out walking or cycling and my muscles start to rebel, a little break eases them and I can continue. I believe that happens because it allows the blood vessels to calm down a bit so the blood flow increases.  I should mention that when I get the muscle message I head for home because it does mean they've had enough. Just added that so I don't get reprimanded for overdoing it by our fearless leader😋.

Have a great day, hopefully it's sunny where you are!

Hugs, Diana🌸

I am always amazed at how active some of you are, cylcling, running and even going to the Gym! I have had PMR for 3 years and to start with had to put splints on my arms (they had been given to me when they misdignosed my arm pain as severe Carpel Tunnel) to give me enough strength to get down the stairs on my bum! I'ts good to remind myself how bad I was. But I can still only manage a daily dog walk of up to 1/2 hour. I have recently given up my stick, but I don't walk 'properly, can't quite explain why; though Eileen did on one of the forums, I remember!  I manage daily life pretty well, am now down to 8.5 and coping, though the legs feel like lead. Difficult to explain the 'pains' I have Arthritis as do most 69 year olds and bits of me hurt. My back is my biggest problem, as the muscles supporting the spine are probably permanently weakened and they hurt most of the time. I find a back brace helps with the pain, though I am aware I shouln'd use it too much. I am a 'potterer' and don't rest enough. I do try to temember to count my 'spoons'.

I only stumbled across this forum a few months ago. I wish I had found it earlier and if and when I next see a Doctor with tell him/her about it; they could learn a lot and save themselves quite a bit of money on unnecessary referrals to  Neurologist (for the tremor) for example. Niether my Doctor or I had any idea how wide ranging the side effects of Pred can be. I was started on 40mg. I still don't know wether I have CGA or not.

Well done all of you, you have been a life saver and I'm sure I'm not the only one!

I do think that resting should be seen in the light of helping to manage pain - not directly connected with pain of itself.  For PMR purposes I hurt the same if I'm walking (now more of a slow shamble, really) or if I'm sitting at the computer, but trying to remember to slow down and have more resting 'gaps' in the procedures does help me to keep at it longer and with less pain than if I rushed through it.

I never was a 'slowing down' person and it is incredibly difficult to learn how to - but I'm trying and I do find it pays dividends.