Q: How are you able to still work out? Don't you get exhausted?
A: I feel fortunate to have a solid background as an athlete/runner well before my diagnosis. With regular exercise, there is often "discomfort". That's part of the game. With running, there is often downright pain. The elites do all kinds of counseling to help them push past physical pain while competing. My point is that I am accustomed to a certain amount of discomfort, and almost welcome it as part of the improvement process. My disclaimer is that I have spent years developing the fine line between the kind of discomfort required to get better, and the kind that means injury.
So, yes, exercise makes me tired. But it's supposed to. I wouldn't say that the Polymyositis exhausts me any more than strenuous exercise normally would. When I was recovering, or when I am dealing with a flare, my activity level is obviously way lower than normal. I am not always able (nor is it smart for me) to push it, and I am conscious of the times when intentionally elevating my CPK through too much activity would be foolhardy. I have always been instructed by my doctor to "do as I feel". Fortunately, when meds are working as they should and God is willing, I can do all of the things that I could pre-diagnosis.
Now, there may be weeks or months at a time when I am battling an elevated CPK, when I am weak and tired/sore all the time. During these times, I do what I can, which usually means taking walks, going on slower, shorter runs, doing cardiovascular machines, stretching, and lighter weights. During these times, I do feel more tired, and have to battle that as part of my daily life. These times can really get me down. However, I am fortunate to not have had an extended flare that has lasted more than a few months.
Q: What are some exercises that helped me?
A: Strength training is/was one of my priorities when I was first diagnosed. As soon as I could, I began trying to lift my own arms as high as I can. I would do sets of arm circles, at first with just my body weight, then with soup cans. I would lean face-forward against a wall and push myself back with my arms (push-up style). I would squat down as low as I could, and then push my self back to a standing position with my leg/glute muscles.
Cardiovascular training was important too. I felt like I had lost alot of my cardio, and it was hard to get it back. I rode stationary bikes and spun on elliptical trainers, at first set on no resistance, and then gradually increasing as I got stronger. I walked alot, and tried to incorporate as much arm movement as I could into it. When I got stronger, I would insert periods of shuffling. If I shuffled for 20 minutes one day, I would try for 22 the next.
I kept detailed logs about how many reps or pounds I could lift, and how many minutes I walked/pedaled or at what level of resistance. Watching the numbers go up was reinforcing. People kept telling me to swim and do yoga, and I know that those are probably the most joint-friendly and gentle exercises, but I couldn't do either for one primary reason: I couldn't do anything on the floor. I couldn't push/pull myself from the floor, or up a ladder in the pool. I would literally get stuck there. So, I stayed where I was strongest: on my feet. For some reason, my legs stayed the strongest while my core/arms were exceptionally weak. So, I just stuck with it and did what I could in that position.
You need to make sure that your CPK isn't actively climbing before you push yourself. As I understand it, you can exacerbate a flare by overdoing it when your CPK's aren't relatively stable.
