Effect of PMR on physical activity
Posted , 9 users are following.
I’m interested in forum members’ experience with physical activity.
I’m 82 yrs old. Diagnosed PMR a bit over a year ago. Suspect I had PMR for a year or so prior to diagnosis. There was no upper body involvement, no headaches. I assume no possibility of GCA.
Before PMR I was very active. In excellent aerobic condition for my age. One of the first things I noticed (besides extreme stiffness and pain in my lower back and inner thighs) was weakness of upper leg muscles and shortness of breath on exertion.
After I was put on regular dosage of medrol, all of those symptoms were gone. Then there was a roller-coaster period of adjusting the dosage after which the symptoms gradually came back while reducing medrol.
I am now at 8mg medrol (= 10mg prednisone). I am very active - mostly pickleball ~5 times a week, with some walking. I’m also able to carry fairly heavy loads, 45-50 lbs, which does stress my back (soreness follows). I’m still fairly stiff but not incapacitated in the mornings, and cannot play pickleball without breathing heavily, and cannot walk at my old speed of 13 minutes per mile.
From reading about the extreme problems of many of the forum members I fully realize that I am very lucky to be able to do what I can do. I certainly do not mean to complain. What I am interested in learning is the experience of others who were very active immediately before PMR. How has your activity level changed? During aerobic exercise has your breathing become problematic? What about lifting and carrying?
0 likes, 47 replies
julian. philoso4
Posted
in my early days of pmr, which was painful in my arms and stiffness in my legs, I struggled to remain active. A km on the flat was limited by an overall fatigue rather than particular muscle tiredness. Enough to seriously wonder whether I had the energy to return home.
As the journey progressed I could walk further, but 5-6km was a long way.
There came a time when I sensed a change. Whether real or not, elation when I could walk up steep hills and feel the stiffness of exercise not the stiffness of pmr.
Some of my journey has been modified by the need for a coronary stent - one of those silent conditions that only showed up in a stress test. The rehab exercise, which didn't result in a flare, was invaluable.
More recent change has been hands a bit stiff which became sore wrists, the frustration of not being able to peel an orange and eventually increased pred.
I suspect its one of those "we're all the same but different" things. We need to listen to our own bodies as much as how others are effected. My approach has tended to be to keep as active as I can.
Pacing myself has been important. Do too much and it takes time to recover. Too little and there's a downhill spiral waiting. In the first year I lost most of my previous fitness. Now, after about two and a half years I have some of it back. I'm working on the rest.
I find a big difference between walking (hiking/bush walking/ tramping is my preferred activity - I dislike exercise for the sake of it) where I can keep going for long periods and lifting where carrying groceries from car is a major effort with noticeable effects on muscles the next day.
Our garden is quite steep, about 15 degrees. Even after the stent I (just over a year ago) I had to stop for a rest walking up. Something has changed slowly, I can now easily walk up the hill. But it still took a week to chop down a tree that would have taken a day 6 years ago - probably some pmr, some simply older.
philoso4 julian.
Posted
Thanks, Julian, for the description of your journey.
As so many forum members have pointed out, we all act and react differently to this disease. Whether it is the same with other diseases I (thankfully) do not know. This is the only disease, condition, whatever, that I've had that has been truly painful and debilitating.
It would be very helpful if there were some way to know whether our PMR is fading or what? I tend to gauge my medrol dose related more to shortness of breath than anything else. It seems more measurable. It is extremely hard to quantize stiffness or pain.
julian. philoso4
Posted
I sort of gave up trying to measure pain/stiffness absolutely a long time ago.
Tied in with posts further up I tend to work with relatively "better or worse". Trying to convince myself it will be "better" tomorrow (or at least not as bad) can be a challenge some days.
For a long period, at least a year, I was fairly stable, progress could be measured in pred reduction. Just hit a minor hiccough but round the corner is a return to stability.
EileenH julian.
Posted
Yes - all you have written parallels to a great extent what I've been through for the last 12+ years. I just haven't reached the "different" feeling. Or I did about 18 months ago - and 8 months later I had a flare!!!!!
philoso4 julian.
Posted
julian, and any others who are interested in quantifying in order to have a more reliable way of determining the progress or regress of PMR:
Part of my walk this morning was done to add to my store of measurable information. I walked at a very comfortable pace at first and then pushed hard for a little over a mile and then went back to comfortable.
The hard push resulted in a 13:22/mile rate.
During that push, my breathing was hard but not at all distressful. As soon as I quit pushing, my breathing returned to a very normal and comfortable rate. Conditions were ideal - early AM, sunny, breezy, 71F, almost level route. I learned that my limiting factor at the moment is the inability of my walking muscles to sustain a faster pace.
An oddity in my bout with PMR is that when playing pickleball I find myself breathing much harder than during a fast walk and also that it takes longer to recover a normal breathing rate.
I'm on 8mg medrol and am considering lowering the dosage. Still have morning stiffness, but tolerable.
anapp philoso4
Posted
I was surprised that you found it odd that your breathing was harder while playing pickleball. Pickleball is a very active game which takes a fair amount of energy comparable to an aerobic workout. To my surprise, I find it easier to play pickleball than to walk at anything other than a slow to moderate pace. I would have thought the walking would be much easier. Strange how people's bodies react to different things.
philoso4 anapp
Posted
anapp philoso4
Posted
Well maybe I could attribute that to the fact that I probably chase (not hit) a lot more balls than you do during pickleball
... and don't walk quite that fast anymore either. Oh well...am grateful I can do either.
julian. philoso4
Posted
Good work. I don't think my legs will work that fast!
I'm not too bad on the uphill bits though.