Is this normal?

It depends what you mean by active !! If I sit too much I get very stiff I do feel PMR comes and goes in your body and sometimes you can do lots I have said I have done more in the last 3 months than I did all last year

I have had the exhaustion you can get at times and I cont do a lot All I would say is dont overtire yourself Just enjoy doing what you can and rest if you have too

Best wishes

Mrs G

I know what you mean - once I can get over the inner lazy pig and get moving I DO feel better. All the time I had PMR before it was given a name the good days were those where I had a class at the gym first thing where I dragged myself out of bed and into the car to get there - pulling on the gym gear and postponing the shower until I was done. I'd had to leave one gym as most of the machines were impossible for me once the PMR happened and the classes there were aerobics which were also too much but once I found somewhere with an aqua class every day and some other do-able classes it was great - and the best days were definitely the ones with a class at 9 or soon after.

What I couldn't do was anything that required repeated movements - hence the problem with the machines and I did have to be careful not to get too enthusiastic and overdo it. Two years ago when I came here on my own after being stopped from driving I did realise quite soon that on the days when I got up to catch the 8.15 bus up to the ski area, the short walk to the village was quite difficult but by the time I came back at lunchtime the walk was no bother, and not just because it was a bit down as opposed to a bit up!

From all the reading I have done, I think it is because the activity gets your circulation going and so the blood supply to the muscles is far better. Some of the symptoms - the thigh and bicep pain, for example, as well as the jaw pain in GCA, are due to claudication, not enough blood flow to an exercising muscle. You can either rest, doing very little, and avoid the pain that way or - and this is something that is used with patients with peripheral vascular disease, often found in diabetics - they are encouraged to walk as far as they can before the pain in their calves gets too bad and stops them and then force themselves to go just a bit further. And then walk until pain stops them again and add the bit. Over time the distance they can walk can be increased by up to 20% or more.

My husband is involved in an application in Innsbruck which will also include a department where they are looking at using modulated exercise to improve quality of life in the elderly and patients with certain diseases. People in Tirol exercise a lot and keep doing so at advanced ages - the QOL of older people in Austria is very high if they do so. If this scheme is successful, I'm hoping I can encourage them to have a look at PMR as there are a few things included that I suspect may apply to us - and so does the man behind the whole thing. It is already known that patients with diabetes and other metabolic diseases do much better when they do suitable exercise - and it can be used to reduce the amount and cost of drug therapies.

EileenH

There was someone who posted on here some time ago who reckoned he had got over PMR precisely by doing a LOT of exercise. I think, like me, he was fortunate enough not to have symptoms while taking the Pred.

I have also suspected that the more I exercise, the more I might keep it at bay - this is just a kind of feeling. However, when I feel tired after Ive done a long walk or an aerobics session, I sometimes avoid exercising the next day as I am afraid that tired feeling will increase. I think, though, that I should continue as I definitely feel better when i am doing a lot of exercise.

I am on 2.5mg at the moment and have been feeling a bit of that achey arm thing before I get up in the morning - nothing bad - just slight. I am feeling afraid that it might be coming back if I reduce further. Maybe the answer is to do loads of exercise to kick it into touch??

Beev

Eileen, you have explained it well, and I am now understanding this strange condition (I would rather call it a 'condition' more than an illness) much better.

I do like the idea of keeping as active as possible, although,can be difficult as my part time job involves me sitting at a pc for quite long periods.

But keepin on the move does seem to be working for me, up to a point, so I will continue on this track. But unfortunately, I can't sit still for too long without some pain and stiffness returning somewhere on my body, usually its my right leg.

Beev, I get the achey arm (left bicep) too, just one of them. And I sometimes get a dull ache in the back of my lower neck too, but this is just on waking, does not bother me that much, and passes in minutes.

I actually cleared the garage out on Saturday.. :P , and I was completely pain free, so that can't be bad can it?.

Yes, this PMR thing is certainly a very strange and sometimes unfathomable condition, but I will keep on learning how to deal with it

gilly.

I sometimes feel like that as well on the good days I get a lot done and don't feel the pain yet the other days i can not get aroud that much because my body is tired so I make the most of the good days