Tuesday, June 1, 2010


Getting sore again. Calm and fairly normal-looking on the outside. Distress call on the inside. It's been 3 weeks since my prednisone bump. The first 2.5 felt great, but the water is starting to leak through the dam again. Sore, sore, and sore. In odd places, too. I can feel it even when I'm still. Which is probably the worst time, because I can ruminate over it more. Shoot. Next appointment in 2 weeks.


  1. i feel you girl, i hurt all the time :( hang in there!

  2. i am so curious about how you cope. i have polymyositis and if i do extra activities besides my normal routine i suffer with pain badly. Did you/do you have pain? How did you buildup to running? was it a slow process or how did you do it? I am not having physio yet and am not sure what to do - i walk and do housework everyday but squatting, stairs and hills create gony the next day

  3. Lee,
    I have seen alot of others say that their bodies limit what they can/can't do physically, and pay dearly for over-exertion. In the past year and a half, I haven't had what I would classify as "pain", although I have started to feel some muscle pains creeping in as my drug dosages have gotten lower. I consider myself fortunate to still be able to run, swim, and bike. As I communicate with others, I realize what a luxury this is. I hope to be able to maintain it long into the future, but I am also very scared about the disease progressing.
    To answer your specific questions:
    I work in a recreation center, so I am very fortunate to have a background in exercise as well as good facilities available at my fingertips. I started out with non-impact activities such as riding a stationary bike and using an elliptical trainer, just for a few minutes at a time, at very low resistance. I added very light weights... at first, I was using soup cans at home. I gradually tried to add more and more weights as I could. It took a while to build up to a run. My muscles were very slow and I couldn't really "leave" the ground at all. It started as a shuffle that got a little bit better over time. Strength training has been shown to help people with PM regain strength... I credit it with helping me to remain as functional as possible.

  4. I'm getting sore again too. Just today at lunch, I dropped my lunch box and spilled all my food on the floor. So much for saving up by brown bagging it... My muscles are slow nowadays.

  5. It's so wierd. A month and a half later, I seem to have pulled out of it. One of the downsides of being so active is that I never know when I'm sore from the activity, or whether my disease is prowling. I did start taking Vitamin D3. I wonder if that does anthing for me.