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?
Lots of folks on this forum are (or were) very physically active. From personal experience as a competitive oarsman and hockey player, what I can say quite confidently is that exercise is good and extreme exercise is bad. Others would simply say to listen to your body.
We do need to stay active for all of hte obvious reasons. But my days of intensive training and competition are on hold pending remission and recovery.
Wow! You are doing great. I'm 74 and after about 5 years weaned off Prednisone for PMR and GCA. Before that I was walking 4 fast miles 3 or more times a week and doing sprints in between and working part time in a very busy grocery deli department. Post Prednisone I have started playing pickleball but can only walk 2 - 3 slow miles at a time. I thought I was doing great before but you put me to shame. I really think you are doing amazingly well. Give yourself a pat on the back.
I experienced what I thought was, shortness of breath but now I think it is fatigabilty of the muscles used for breathing.. abs, diaphram, etc..
It took me a lot if "flare ups" to realize that even if I feel up to doing an activity that I have always done almost automatically, with PMR I have to think before doing something. Three weeks ago, I moved a piece of furniture by pushing it with the back of my legs. The next day I developed a pain in my hip region that at first thought was brusitis but it turned out to be piriformus syndrome which incapacitated me for three weeks. It's been another lesson in how vulnerable muscles are during PMR .
Hi, we learn when we exchange our experience we who carry this same tricky illness/illnesses . I have CGA was always active and recently I notice the stiffness on the legs getting worse - hopefully without any shortness of breath though.
I do tread mill everyday and still do my chores - here at home and going out,
I hope and pray I will always keep my vision!
Loved to know about your experience!
Great subject to discuss !!
Keep well !
Iellen
Congratulations for your physical performance!!!
Loved your post!
Take care,
iellen
First I want to tell you that it is amazing that you can still do what you do at age of 82.
I like your spirit and will try to explain how I worked my way back to fitness with PMR. Sorry for a longer post.
I was 66 and pretty active before PMR with wide range of activity like mountain biking, swimming, running, hiking occasional tennis, etc. At first, I was practically immobilized, having hard time to get up from bed and go to the bathroom. This was exactly one year ago, November 2015. Prednisone removed the symptoms and slowly I started again with activities. First month I focused on walking and stretching muscles that I felt were impacted by PMR and were limiting my activities. After several weeks of deliberate effort of walking faster and longer I was doing it 3x a day, at 5Km/day. Second month I added mountain biking and swimming. With gradual effort my fitness improved to the level equal to pre-PMR. As Daniel said, light to moderate exercise is, in my opinion beneficial to recovery from PMR, while heavy exercise is detrimental, and I had to discover it myself. Now the way I improved my fitness is that I would structure my workout to be aerobic for 90% of the time at the level that I can carry a conversation, so really easy level. The 5-10% of the time I would increase the level to sub-maximal and try to push hard. For example, most of my bike ride was with hear rate 100-120bpm, 25 min into the ride I would clime this hill and push my HR to 135-140bpm for about 5-7 minutes and then again go back and ride at slow pace for another 30-40 minutes. What that does, is train your body, muscles, heart and lungs to work at higher intensity level. Gradually your body get used to higher level and overall fitness improves. Using this method of training over the last 10 months I got back to about the same level of fitness as before PMR.
Thanks, nick, for the detailed information. I'll give that, or something like it, a try. Really would like to get my aerobic capacity back.
Thanks iellen. Sounds like you are doing well keeping moving. Your vision should be fine if you are on Prednisone I think. Wish you the best.
For you, since you mentioned walking, what I would do is this:
Find a steep hill, about 1/2 mile long. Incorporate this hill in your daily walk, so that you have about a mile walk before hill, at leisurely pace of 18-20 min/mile, or whatever pace slow enough that you can talk with someone. You should not be breathing hard during this first mile, since this is just a warm-up. Then hit the hill at faster pace, not maximum effort though. You should be breathing very hard, but still not be out of breath. Do this ONCE a week. First week do it for 1-2 minutes. Monitor how you feel the same day and the following day...If you feel OK, then increase the length from 1-2min by 1 min each week until you are doing 5-7 min of high level effort. After the hill, do slow walk at least 10 min or longer to cool down. Stretch after the walk for 10-15 min focusing on your legs, instep and hamstring, calf or whatever feels tight. You may feel some tightness in lower back from walking uphill. Make sure that you stretch those muscles too. Please report back in 3-4 months. I am curious if it will work for you.
I believe I am one of the unlucky ones - prior to PMR I was training and competing in triathlons - slowly, but still doing them - even won a couple of medals in my age group - I was 51 when diagnosed. Once PMR struck I couldn't walk, lift my arms, dress myself, get out of a chair. And although pred did take away most of the pain I remained unable to move about freely and had terrible stiffness and fatigue. I couldn't have walked 100 metres - it was just too hard. I spend most of the first year sitting on the couch feeling depressed and unable to do anything about it. The second year has seen some great improvements, thanks the MTX, and now Actemra, but I've also put on an enormous amount of weight, thanks to pred, inactivity and comfort eating. Thanks PMR. Not. I'm planning on spending all of next year trying to get it off again. It's going to be a long road, and I really hope I don't suffer a flare and take backward steps.
You are by no means as unusual as you think I suspect - and far less unusual than the people who are able to exercise with PMR.
It IS possiblet to lose weight while on medication, including both oral and injected pred, as a lady on another forum has presented a couple of days ago. She has decided to try something - even though her doctors are not particularly worried about it as they keep saying they are going to "get her off pred soon". She joined Slimming World 7 weeks ago and has already lost 16lbs.
My worst weight gain was due to PMR - for 5 years I simply couldn't exercise as usual. Then there was the Medrol interval combined with an achilles tendon problem that meant I had to use crutches - and you can imagine the pleasure of that with PMR! But I have lost it all - and have never stopped taking pred.
Please - can I counsel a slower start - 1/2 mile of steep hill is one thing for a relatively young person who was already reasonably fit.
Whether we like it or not as we age it is not so easy to simply jump into a training programme - even if you were fit before. It doesn't take long to lose fitness with inactivity or illness and age also has an effect. Yes, I know you said to start slowly Nick - but your approach leaves no option for bailing out if it is too much. I've been there - it is not only scarey but risky.
And equally - anyone, please don't start an exercise programme like this without checking with your doctor first. I really am NOT saying don't, I'm saying, please be careful how you go about it.
agree 100% with you... Everyone should be careful when restarting exercise. I do stress test every few years myself.
There are two reasons I suggested the above ... First is that philoso4 was able to do 13min/mile before PMR, which is in my opinion amazing for age of 80 or so. Second reason for suggesting hill and sample exercise programme is to explain the concept of working slow 90-95% of the time ( hill or no hill). It is a very gradual progress, and long hill is only needed for when you get in shape. Simple math he did 13m/mile - I suggested to start witn 1min and go no longer then 5-7 minutes after several months. For that, you need hill ~ 1/3 - 1/2 mile.
Just going by my husband - OK, he has only one lung and it isn't 100%. But when he hasn't a chest infection he can walk far faster than me on the flat or a gentle slope. As soon as that slope is a bit steeper I can leave him behind - and I can tell he has an infection long before he realises! It all depends on what is underlying the lack of fitness.
I have been fit all my life, and particularly so the last few years. I kept walking and exercising all the way through undiagnosed PMR year. Now, after about 18 months on pred I can tell you that for the last eight months or so I have found hill climbing to be far more difficult than it used to be. I can leave my husband or son behind when on the level, but going up an incline I have to go so slowly they think I won't make it. My legs hurt too much and I do not have the muscular strength to go quickly. I do continue, but I absolutely have to go slowly.
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.
definitely unlucky, but I suppose someone has to be .....
I found I could go for days and weeks thinking "tomorrow I'll ... " and then put it off another day. Procrastination stole more than time.
I lost count of the number of last packet of Tim-Tams we'll buy that got bought. Just one more packet and then I'll stop ....... which reminds me, must ask daughter not to stock up for Christmas.
I think of myself as "lucky". But with pmr more than anything else I've had a sense of having to make my own luck.
This may come out all wrong, be totally inappropriate, and is just a thought - rather than "I'm planning on spending all of next year trying to get it off again." try "starting today I'm going to get it off again" and rather than "It's going to be a long road, and I really hope I don't suffer a flare and take backward steps." try "a journey of a thousand miles starts with a single step" or think of eating a chocolate elephant one bight at a time.
Very hard to be positive at times but with a bit of practice (hopefully deleted) it becomes normal.
I'll enjoy my Christmas without Tim-Tams.
There has just been a "lack of motivation" discussion on a lupus forum I participate in.
I think it is somehting common to autoimmune disorders - and possibly part of the disease process??????
At present I am trying to get the xmas letter done. I'm halfway there - but the finishing session is not attractive...
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.