Sample Log from my exercise records. I was trying to post this in different thread, but it is not possible to upload image unless you are original poster ( at least I could not).
Log explanation:
It would show how often and how long I exercise -3-4x per week, alternating biking in the mountains and swimming. My biking session is usually 80-90 minutes and swimming is 2.5Km in 60-65min ( 100 laps in 25m pool). I wish I can also post sample of an exercise, because I record it with polar HR monitor which tracks speed, altitude, distance and HR every 5 sec so that I can analyze progress on my PC.
It is the answer to question about exercise and fitness for people with PMR.
It is possible. Best to start as soon as possible the same activity that you have done before at very low intensity level and short duration at the beginning. Be patient. Also keep in mind that we are all different and you have to find YOUR way to get back to fitness. Here is what I have done:
1.Stretching should be done every day, preferably combine with walking to warm up/cool down.
2. Walking/swimming/biking or anything that floats your boat is fine as long as you do it at low intensity. After few weeks you will get better understanding what you can or cannot do and then you can adjust your exercise plans accordingly. This will in a long run help your recovery and take care of being out of breath. Increase time/distance and maybe in a year you will be able to do the same distance as before PMR albeit at the lower intensity level.
3.Avoid strength training because muscle recovery is very hard while on prednisone. Prednisone changes metabolic processes on how proteins are processed, and they are essential in muscle recovery.
I kept real time record and posted progress over several years at sister -site. Here is the link if you care to read...
patient.info/forums/discuss...
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pmr_nikola
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I've had a few issues posting a photo too...I click on the mountainy icon, select my picture/photo, but instead of it attaching to the person in the 'conversation' I'm responding to, it automatically attaches to the original poster's first comment! This has happened 3 times in last 4dys! Thought it was just me! 🤭
It would make sense but I was getting an error. It is exactly the same steps I was taking to post image on this thread. I have no clue why it did not work.
You were so lucky to be able to do so much. I was on a very high dose prednisolone regime twice for GCA and PMR. The second time, was in order to save my sight, I received methyl pred infusions, 1 gram on one occasion. Then onto a taper all over again. At my worst, muscle just disappeared in a week or so and I couldn't even climb in or out of bed. I went back in the water as soon as I could but getting fitter has been a long slog. Overdo it and I went back 3 steps again. All my muscles were affected including my bladder and my diaphragm. My back collapsed and even my voice changed. Other side effects were not so nice either.
I was lucky in a sense that I had only PMR. I have no idea how I would recover, or could I have recovered if I went thru the same troubles as you did. I can only tell you that if you don't try it will not get better. At the time PMR hit me I needed help to get out of bed; I had whistle next to my bed to call OH for help. It hurt even if I try to turn and/or try to move blanket. This is the time before I was put on pred. Pred help me to at least start moving and then I gradually improved. It is hard, but alternatives are not good either.
I agree fully. I use my pilates exercise (50 minutes/day), my cycling, and walking the dog (average 12000 steps/day) to monitor my capability to move and I document it thanks to smartwatch and Phone. My cardiologist and rheumatologist both like this and and they add this info to the medical file. Start with wisdom, without overdoing, but do it in a regular, structured way, make it a habit, document it so you can see progress, even if slow and add medication and dosage information in your diary, so you can maybe see a correlation. Just hold on.
Colour photo of graph showing that I do more steps/day than most women of my age (76)
Agree 100%. If you don't measure or track you have no idea what works and if things are improving. For example, id I click on one of the green rectangles then I get detailed picture of the exercise I did ( need to click on the pic to see full size):
Exact. And the satisfaction you get out of it is increasing your endorphins, which in turn are decreasing pain and unhappiness. I wish that many more PMR patients discover the benefits of it.
Just a reassuring word to the many PMR sufferers who have no possibility to follow such exercise regimes. There are very individual responses to PMR and to the steroids...for some us exercise (except the gentlest movement) makes everything worse. For those of us with steroid induced muscle myopathy, it is less than useless to follow exercise regimes...no muscle regenerates. I have spent four years trying daily to increase the distance I can walk but my muscles are totally exhausted by 200 meters. I try to lift a tin of beans regularly and have only had a decline in muscle strength.
I am impressed by what you have achieved and it will help and encourage many PMR sufferers but not all.
I'm very sorry to hear that, how frustrating. Just wondering if you have thought about exercise types like isometrics and somatics both of which would keep blood flow going and fascia moving, and somatics would also help with joints.
Thanks you so much for replying. I don't about know about either of these exercise types. Can you recommend an online youtube that you think would be worth watching? One thing I didn't make clear is that the problem is severe muscle weakness but I am extremely fortunate that my joints don't hurt or have limited movement. There are many PMR sufferers who also have arthritic joint problems. would the exercises you are suggesting be helpful for them?
The only thing I can do is qigong - recommended by someone on here.
I'm afraid I don't know much about your condition but I used to do isometric/isotonic exercises when I taught yoga to people who had very little mobility and strength from a range of conditions such as MS and severe RA. And I've been using them myself when I wasn't able to do anything more. Basically these exercises use inner resistance. So if you were going to do a bicep curl you would close your fist, engage the muscles so they tensed to the degree that is comfortable for you, do the curl and then relax the arm completely. Or a static exercise would be to raise the arm, again under tension, and hold out for, say, a couple of seconds, then relax. You can do similar things for the core, shoulders, glutes and legs.
The beauty is that rather than doing several minutes of exercise, you do them little and often so less likely to get tired. Like when watching TV for instance, or in bed or in the kitchen. I couldn't find any videos because they are aimed at tough exercises like the plank, but here is a vid of a woman explaining it well.
As for somatics (Hanna Somatics usually), that is a different kettle of fish. It is a specific approach to exercise that has to be taught one on one or in a small group before you can apply it for yourself. It trains the brain and nervous system as well as the muscles. I have done alot of it pre and post GCA/PMR and it is excellent - usually leave a class feeling several inches taller for instance, also extremely gentle because it has a focus on letting muscles relax. Perhaps it might be of help to you. There are teachers across the country, though not that many. Here is a website of a teacher which gives more info.
wonderful information, video very clear. I think I already do some isometric exercises. I have devised exercises that I can do. As I am in bed a lot ( resting and working on my laptop ) I frequently raise a straight leg and hold it raised for as long as I can. I also hold a straight arm horizontally (are these isometric exercises?) I will hunt for others. I really don't have the energy to go to anywhere and so an exercise class is out. But perhaps we can bring all this info together somewhere on this site. I will ask.
I would agree on the difficulty of recovery from using weights. I have only been able to manage once a week recently, and I don't push heavy weights. But it helps my mobility more than any other kind of exercise, even physio. And getting in the pool afterwards feels like heaven.
Although, the last few weeks, I barely have enough energy to make it as far as my garden gate.
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