rest and exercise w PMR

[Linlin64]

A few people have mentioned how it's important when we have PMR to rest the body. Prior to PMR i was pretty active, and PMR limited activity so very much. Now that I'm on prenisolone that masks PMR symptoms, how do I know what's a good amount of exercise and what's too much?

An example: A 2-or 3-hr Sat morning gentle walk with friends used to leave me in pain and wiped out for the whole weekend. Now with pred I can do the long walks and may be tired afterwards but not in pain or so wiped out.

What are the cues you use to know what / how much exercise is too much?

[DorsetLady PMRGCAuk volunteer]

Hi Linlin64,

I think you must be one of the lucky ones who maybe don’t get wiped out by the PMR/Pred and are going to have a reasonably easy journey - I do hope so. Feeling tired is quite normal, but for some people they feel absolutely shattered the next day if they’ve done too much.

If you feel okay after exercise then you haven’t overdone it, if you feel shattered you have,

You seem to have got from 15mg to 9mg fairly easily, but there probably will come a time when you get to your optimum level of Pred, and then you may find things a bit more difficult.

It really depends on how long the PMR itself lasts, and how your tapering corresponds to that. The minimum for PMR is about 2 years, so if that’s your scenario, you may find your tapers don’t take you below your required level of Pred and therefore your PMR is well controlled. On the other hand if someone else starts at 15mg like you, and their PMR lasts for say 4 years, then it’s highly likely during that time they will drop below their required level, so the PMR is not so well controlled and they may get a variety of problems. Does that make sense?

[Linlin64 in reply to DorsetLady]

Thx, DorsetLady and everyone else, too. For the PMR lasting 2 yrs or more, is that from the time of starting the steroids?

I’m very hopeful that the massive changes in my diet will improve the experience of coming off pred. Aiming for 1 year but prepared for it to be longer, listening carefully to the body all along the way.

[DorsetLady PMRGCAuk volunteer in reply to Linlin64]

Good question. It a timeframe doctors often bandy about, but as that’s usually after diagnosis one could assume from then.

Unfortunately it’s not an exact science, and you may be aiming for a year, but it’s not up to you. It’s comes, it stays, it goes!

You can do the best for it while it’s here, like eating the good stuff, keeping fit, resting when necessary, but you can’t put a farewell date on it! Sorry. The sooner you accept that, the easier it will be.

[PMRpro Ambassador in reply to Linlin64]

The 2 years is a work of fiction IMHO but no, it is from the start of the PMR symptoms really. The pred does nothing to affect the disease process - it is merely mopping up the inflammation it causes. but neither does it speed up the process in any way.

You can aim for a year - but don't be disappointed when it doesn't happen. The two year time-frame they quote is bad enough - many patients have arrived at the forums because their doctors said "You'll be off pred in 2 years" and when it didn't happen felt they had failed and done something wrong. Many were very depressed as a result.

[Zofitmogelijk]

Dear Linlin lady Dorset has written down wise words already. Everyone is different that is for sure. If it has Some value For you, here is my experience with

Exercise. Before pmr I set a goal for example How far to walk. Pmr has teached me to listen very intense to my energylevels and try to stop in time. Getting too tired makes me sad and not wanting to do anything most of the time this occurs the next day. But perhaps it works differently for you. Hope you will soon be better, aletta

[PMRpro Ambassador]

"Now with pred I can do the long walks and may be tired afterwards but not in pain or so wiped out"

Then that is OK - you can do what you like as long as the next day you don't feel it. You have to test your limits very carefully and then stick to them. But otherwise - no limits if you don't suffer.

[SheffieldJane]

I think you have answered your own question really. Listen to your body, don't do the long walk two days in a row. Walking is good other types of activity can be more stressful on the body. I'm all for a gradual build up of exercise and a gradual reduction of Pred. We've all overdone it at times and it's not funny, not funny at all. A bit like biting your gum when it's numb from dental anaesthetic. You pay later.

[Coachev in reply to SheffieldJane]

Great comparison. Love your answer, too.

[nymima01]

I was wiped out before being diagnosed. I could barely even take a shower and dress myself. Once I started on the prednisone I was like a different person. It gave me my life back. Since I feel good and have energy most of the time, I take on special projects like painting a laundry room. I enjoy painting actually. I feel fine afterwards and can go about finishing my projects in a timely manner. I pay attention to what I eat too. This helps. Not too many carbs and very low sugar.

[HeronNS]

I was able to do lots of stuff after starting pred. Long walks, yardwork, etc. Proverbial energizer/duracell bunny behaviour. It was taper of pred (from about 7 and down from there) which led me to a time of fatigue and, I must confess, laziness. But I still walk every day and no longer do lawns!