When or how to start increasing physical activity

Hi Nancy welcome to the forum.  Being pain free does not necessarily mean that you are back to normal.  Foolishly and everyone has done this, as soon as I was pain free I thought I would catch up on things that hadn't been done around the house.  Nothing major, just light housework. OMG after a day or two I felt so ill, weak and generally not well and very fatigued.  The good people on this forum kept me right by reassuring me that this was just temporary and to rest.  So you need to pace yourself and adjust your life accordingly.  I was 59 and just 8 weeks after my 60th birthday it was confirmed that I had PMR and was put on 20mg of steroid.  The steroid reduces the inflamation which causes the pain but the underlying illness is strill there.  PMR is an auto immune disorder.  This is a great forum where you will get plenty of support, advice and information.  Good luck on your PMR journey.  Regards Pat

Hi Nancy ,so you have joined the PMR club haha ,their of lots of lovely people that can really help and answer all of your qeustions on here ,as with my story I am 52 female and was very active ,Zumba ,keep fit classes .i have had PMR for 2 yrs and still are unable to do any thing physical because of the pain ,but I have just started to go on long walks with my dogs and very slowly the 14 lbs I put on .....have started to come off YAAAHHHH......lots of luck with this horrible PMR xx

Nancy I am so sorry you have been diagnosed with PMR. When I first was diagnosed the pred acted like a magic bullet and I felt almost human again, virtually pain free. I was quite weak as I had hardly been able to move, but I just started doing things slowly. I went swimming fairly soon as I love swimming. I think the thing is not to let yourself get tired, as soon as that happens, stop, don't carry on and rest. It is very easy to try and do things as you did before PMR, but you slowly learn this is not always possible. It is a good idea to take exercise though, not just vegetate! 

There has been some discussion of this on another thread in the last few days so do have a look around. This link will take you to the "front page" with a list of all the discussion threads on the PMR forum.

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

I did very adapted Iyengha yoga once a week for some time during the original 5 years I had PMR without being on pred - it and adapted Pilates kept me able to move at all - although I wouldn't have managed any of it without having first been to an aqua aerobics class. The aqua I did at my level and never tried to compete with others. I had to give them up when I had a major flare when the symptoms made virtually anything difficult and, at the same time, I had to stop driving for a few months for other reasons so I couldn't get to the gym. Then I moved - no gyms of any sort of any use to me here! Three years ago I was so ill and on crutches that anything was beyond me - now I walk for about 40 min almost every day and am walking about double the distance I managed at first in the time.

The things to avoid are sustained or repetitive actions - so if you continue with weights do very light weights and only very few reps. Golf may be a bit much for your shoulders for the moment - but only trying will give you your answer. The same applies to swimming - I did find swimming very difficult which was why I did aqua. 

In PMR your muscles have become intolerant of acute exercise - they don't warn you that you have done too much until far too late when you feel as if you have hit a brick wall and then require much longer than you used to to recover. The blood flow to the muscles is compromised - as a result they get an inadequate supply of oxygen all the time and even worse when you try to exercise and the lactate waste product of the exercise isn't removed properly leading to sore muscles. What was normal exercise for you before is now like extreme exercise.

The most popular form of exercise for most people is walking - for some only a few hundred yards is possible. Others may be able to do some of what they did before, especially if they were fit but often it simply isn't possible to continue at the same level - see "Good news" by Judy.

At the beginning you have to learn what you CAN do - even with PMR and no pred I continued to ski for the first few years. At the beginning of the season I would normally have been able to go out 3 times a week for most of the morning without a problem. With PMR it was a day at a time, just doing 3 very short runs the first few times - the rest on the lift was essential. If I tried a longer run I would get stuck part of the way down! I never went out on successive days, always a couple of days rest and recovery. By mid-January I could ski short runs for a couple of hours - always with the rest on the lift. By February I could do an occasional longer run - and by the end of the season could ski all morning, longer runs, 2 days or even more together. You can train - but it is far slower than you are used to. You must know you current limit - and be sure not too exceed it or you will be thrown back days or even weeks if you do too much.

You will be starting to reduce the dose before long - when reducing be careful about exercise, too much and you may feel sore and not know if it is the lower dose or the exercise. The sudden attacks of fatigue are probably the most difficult thing to plan for - it is very embarrassing hitting the brick wall somewhere where you are going to have to get home alone! One lady was out for a walk and was found by a neighbour sitting on his wall - she only lived in the next street but simply couldn't walk the last bit! I often suggest planning your walks around park benches or other places you know you can sit for a while - or to a cafe or a friend's home. Or along a bus route - so you can bale out onto a bus to go home. You can also do far more in multiple 10 minute bites than if you try to do half an hour in one go and you won't suffer as much next day. We often walk to a local restaurant - a good 45 mins with a steep hill at the end going. After a 2 hour lunchbreak I can manage all the way back down!

You will find that some moderate exercise helps the stiffness - but what is moderate now is probably less than pre-PMR. Don't fall into the trap of thinking "I'm a bit sore from last time, that'll go once I start exercising" - it will just get worse and you might find it takes far more than a couple of days to recover so it isn't worth it.

As with everything in the PMR, everyone is different and while some people can still manage a fair bit other will find it difficult to manage even a short walk. It's a case of suck it and see - but google the spoons theory by Christina Miseriando and then apply it to your exercise!

Use this link to another part of this site.

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

Welcome to the 'club'  You will find all the informationa nd advice here - just ask!  Don't rush it and take it slow or it will come back and bite you!!

Thanks everyone. Your experience and knowledge is very re-assuring as I try and adpt and adjust my life to PMR.

Hi Nancy,

I wanted to comment on golfing. When I was first diagnosed about 2 1/2 years ago I had to give up golfing as I was too fatigued and it made my muscles ache. I kept testing the waters by going to the driving range and after about a year I discovered I could return to golf if I only used my hybrids and irons. For some reason the woods use a different area of my muscles and result in increased aching. I'm just getting reading to begin using my 7 and maybe 5 wood too see how it goes this summer. I golf 18 holes and walk the course.  In fact, I played 18 this morning. Wish I could blame my missed putts on PMR 😀

I have had to give up using weights....makes my muscles ache. I did continue with Yoga though sometimes I skip a postition if it's too much strain on my shoulders.  It's just not worth it to trigger achy shoulders for a day!

As as often mentioned on this forum, walking is an excellent way to get exercise with PMR. I found that even if I was having a bad day, just walking around the block seemed to help my muscles and relieve the aches a bit.  My aches tend to not be in my hip girdle so I've usually had less issues with walking. 

What is important is to very gently try your various activities because if you overdo you will be sore and tired for maybe several days.....and we give up enough of our life with this condition without doing it on purpose by over exerting!

Nancy, I never stopped exercising daily even before I got a proper diagnosis and was moving like a 90-year-old (I'm 55).

I immediately stepped up my activity intensity as my Prednisone began to work, and still cycling daily 18mos later and @5mg.

I try not to irritate the inflamed tissues, which might make symptoms worse the next day, but cycling does not seem to cause any irritation and the exercise makes me feel better in a general way, if perhaps requiring me to take a recovery nap after lengthy, hard exercise.

Initial reductions of prednisone dosage seem to go well, but tend to require a smaller increment and slower rate of tapering off as you get to low dosages.