New to Polymyalgia

I'm afraid the statement you made is not correct: 'Your muscles are still being attacked by the effects of the underlying autoimmune disorder and are intolerant of acute exercise - it doesn't mean you have to stop altogether but it does mean you have to adapt and build up the amount you do slowly and carefully'. research has shown that the muscles are NOT attacked, just that the joints become inflamed - once the inflammation has been reduced and you do not feel stiff as a result, there is no reason you cannot exercise as before - infact it is beneficial both mentally and physically. Personally i found this and in-fact performed just as well after going on Pred.

Everyone is different, but i would say if you feel Ok during and after your normal exercise, then don't slow down just because someone else says you should.

I find your post very interesting. I have had PMR twice with a five year "clear" spell in between. First time my experience was as you say. Pain gone, and I really mean gone, within four hours so I just went back to my very active life; animals, very large garden, no paid help. My reductions were pretty straightforward, just had to up the dose two or three times before continuing reductions and down to nil in three years. My GP started me on 30 mgs.

Second bout the same GP said he would treat the PMR " less aggressively" this time. I did not ask why but I certainly would now. Not such a dramatic relief this time and far more glitches and many more side effects. High BP, chronic weariness, disturbed sleep which was alleviated by taking my Pred. at night at doctor's suggestion which was regarded as unorthodox at the time, desperate muscle weakness. It was five years before I reached zero Pred. That was six years ago.

It seems to me that correct and incorrect seldom apply in PMR.

I'm sure you will find this interesting then:

http://www.jrheum.org/content/46/12/1552

And when you have had as much experience of PMR and exercise intolerance as a result as some of the people on this forum you may change your tune. YOU may be able to do things - the vast majority of others can't or require a long build up of training to get back to where they were previously.

As you so rightly say, everyone is different, and every episode of PMR is different even in the same person as Betty pointed out, It pays for the majority of patients to take it very gently at first. A few weeks of reduced activity while you assess where you are may prevent many months of difficulty later. Men often have a very different experience of PMR from women and there are probably at least 4 or 5 different versions of PMR on top.

The comments I made are not only based on the medical background of PMR which are being clarified all the time but also more than 10 years of hearing stories from hundreds of PMR patients on forums. It may be too late when you have overdone it.

I think context is important. I was able to return to daily activity right after pred took away my pain. I did not at that time experience fatigue. I started walking more and was able to do things like mow the lawn (push mower) vacuum, without problems. I was also able to do my yoga and physio exercises again, which had become so difficult in the previous months. I was, as you can tell, coming not from a place of great strength or fitness. just normal everyday fitness of a moderately active woman. However I found as the next couple of years went by, despite doing all this activity, indeed more as I took up Nordic walking, Tai chi, wearing a weighted walking vest, I lost a lot of my strength and for a few months at about the 4 mg level I felt as though I was trying to walk through water my legs were so heavy and almost non-responsive. I still carried on, but I had to stop doing a few things, like push-ups, because I injured my shoulder. So, you see, it wasn't straightforward for me although I would guess at the outset I would have been on the fitter side of sixty-five year old+ females who develop PMR.

Yes I agree we should do what we can, and it's good to encourage people to be active because exercise is helpful. But what we can do may no longer be what we could do even a few months ago. Btw now that my pred dose is approaching a fraction I've started doing the push-ups again, my shoulder is healing. But I still don't have much stamina and maybe increased age is the reason for that. All the while we are ill we are also ageing, and unfortunately at a faster rate than if we'd stayed perfectly healthy. I find that a depressing thought but I do what I can, have always tried to do what I could to stay healthy and fit. Even these days when I feel relatively decrepit people still tell me they're impressed with how active I am, how fast I walk, etc.! So, it's all relative. But we do need to be careful not to make people feel any worse about themselves if they can't achieve their former level.

i live in warwickshire, england, i have two children, im a single mum and im having another blood test next week to see if my inflamation markers have changed and my dr diagnosed me. she did several tests as well as a blood test. ive had the pain and stiffness for over a year now. but i was working fulltime then so put it all down to that. im awaiting a letter to go and see a rheumatologist. i have a parent with fibromyalgia and im also diabetic and suffer from anxiety due to domestic abuse marriage i was in. my doctor has said if im in pain still i can stay on my current dose for longer. i was diagnosed yesterday.

your so right. i havent told many people about my diagnosis as im 36 and dont need people being negative or telling me i cant have this as im too young. Also im a little embarrased because i cant walk as fast or do as much as i used too and i dont want people giving me pity because of it. i juat want to live my.life and do as much as i possibly can. we have three small breed dogs and today i tried walking them together as usual, except i tripped over the leads like a wally. So that was great lol. Anyways im glad your still able to walk even tho you feel a little slower. we have to keep going at our pace. x

ive been taking mine in the morning with breakfast and yes the being awake at night is horrendous. where are you from? im in warwickshire england.

It depends on the person - but often if you take the pred before bed it isn't into your system until after you get to sleep.

Maybe there is support groups fairly near to you? It always helps to talk to others in the same boat - although there won't be many your age, there are some people in their 40s around:

http://www.pmrgca.co.uk/groups/

theres one in a city nr me and i got in touch but heared nothing back tbh but thanks tho

West Sussex. We could have a party each night if we lived closer .

i am fed up with being awake at 2.30 am!

Where in West Sussex - someone on another forum is near Chichester I think and she spends half the night on the forum! You could start a PMR insomniacs united group 😉

i feel the same way. although i dont currently work i have to get my seven and nine year old kids up for school during the week and i cant sleep between school hours because im so worried ill over sleep and miss the school run. my kids dad isnt allowed near us due to domestic abuse, so its just the three of us 24/7

Which group did you try to contact?