Pain really slows you down! It is exhausting and tends to make you want to put it off. Talk to the Dr about pain control and then realize you will probably have to change the way you exercise. I did aerobics for years and walked 3 miles a day in 45 min. on hills for years. Then the inflammation set in and I could hardly walk. Now I try to walk in the yard and do water exercise 3 days a week. Sometimes it is hard and I morn what I used to do. Younger friends keep telling me I will feel better if I exercise more but they dont limp for days after walking a half a mile. It is so hard but if you can get the pain under control it becomes easier. Good luck.
Mary Ann

I appreciate your asking this question, because it's early in the day and I'm thinking clearly, I've been having problems with exercise tolerance, and I needed to focus my thinking. This is not a medical opinion, or one informed by sports medicine, but here is the formula that I have developed:

* In ALL situations, even on the best days, stop exercise slightly BEFORE you feel you need to. In other words, if you can normally do a two mile hike, plan on a mile and a half to make sure you really have enough energy to return. If I feel like I can body board for an hour, I start looking for my last wave after about 45 minutes.

* If the pain only makes it harder to work out, and does not make you more tired afterwards or increase muscle or joint pain afterwards or bring fever afterwards, CONSIDER exercising anyway. There was a phase where the illness ONLY made it harder to get started. In this situation, you are likely to benefit from continued exercise.

* If the pain makes it harder to work, and DOES make you more tired afterwards, but does NOT bring increased muscle or joint pain afterwards -- OR if the increase muscle and joint pain afterwards is manageable, and does not interfere with activities of daily living, CONSIDER continuing to exercise, depending on the situation. Big day at work tomorrow that requires lots of concentration and moving around? Skip the workout or do a much lighter version. However, in Hawaii last year, I often decided to body board anyway, even though it hurt the next day a bit, because I knew we would be just driving around in the car, dozing on the beach, or reading for much of the day. Right now, I have to study a lot, so I have not been body boarding, I have been doing very gentle exercise.

* If the pain makes it harder to work out, DOES make you more tired afterwards, and DOES make your muscle and joint pain substantially worse, you have to stop or curtail your workout drastically. But even then, look to see if there are other factors that influence whether your workout has bad effects, such as diet, frequency and intervals of workout, how much sleep you had, etc. Are you avoiding hiking in the direct sun, when it's really hot or really cold? Sometimes you can manage to work in that third hike during the week if you time it just right.

Lather, rinse, repeat. I totally do water aerobics on days it does not feel safe to do anything else, and it can actually be a pretty substantial workout. It can be more exercise than swimming slowly.

When I was diagnosed my rheumy put me on plaquenil and a month of prednisone to start. He also gave me a prescription for PT which was very helpful because it got me going again. I had been working out for 2 hours 3 times a week at the gym with heavy weights, pilates, yoga, cardio and hiking or running or biking the other days for 20 years. All that stopped.

The challenge has been adjusting to my "new normal". The polymyositis in my legs and arms and the joint arthritis really presented a huge challenge to anything like what I was used to.Plus my energy level was at -10. At PT they had me doing most everything with exercise bands and 2 lb ankle weights. When I was taking the prednisone it was easy but once I stopped it was impossible. I was so weak and always in pain. Any resistance exercise caused a flare and I couldn't recover for 4 or 5 days. And the weakness in my muscles was something I'd never experienced. I just didn't think there was any solution. But after a few years and some major changes in diet, weekly acupuncture and celecoxib I'm doing it. I also am able to do some mowing and my own gardening this year. My arms and hands are much better and stronger (nothing like they used to be though) but my legs are still very wasted looking. I'm planning on working those muscles more now and hopefully they'll look like legs again instead of mixers for drinks.

I also have interstitial lung disease with my MCTD and really find deep breathing beneficial. Bottom line is it's never easy.. Some days are better and that's when I'll try a bike ride and resistance bands. Walking on the trails with my dogs is great therapy. I keep it on the flat now and take a walking stick. And if I don't feel like doing
exercise I don't. Those days walking up a flight of stairs is my exercse. Or parking the car and lifting grocery bags into it can also be all I can do and that's okay. Just not beating myself up about my limitations anymore.

What I see is improvement from a year ago, two years ago. It may be slight but there are things I can do now (ex. change the sheets on my bed, hold a cup, pull weeds) that I could not do before. And that is what I'm focusing on.