But there is no denying that muscle wasting is not good for us. Lying in bed without moving can lead to blood clots in the legs. So many of use look for ways to gauge how much simple movement or light exercise we can do without getting sicker. This is not easy because what works on one day might not work on the next.
Im going to offer what I think are the best resources about exercise with CFS. Remember, please, that exercise can consist of lying in bed and doing simple leg and arm movements. I did this when I was bedridden. Or if you are struggling with housework and/or a job, any additional exercise might be a bad idea. So please keep this in mind too.
Anyway, here are some resources:
Talk by Irma Rae M.D. of the University of Miami. She has clearly done her homework and gives guidelines about how to prevent yourself from pushing too hard. Keep in mind that she is addressing this to people with different levels of function, so just ignore examples that are beyond what you can do.
Talk by Nancy Klimas M.D. of the University of Miami. This one adds information that is not included in the Dr. Irma Rae talk.
After watching both of the above links I felt like I might be armed with enough information to design an exercise program for me that goes beyond the one I was taught while bedridden.
Additionally, any exercise or movement program must be taken in context of other activities and stresses on ones life. Bruce Campbell Ph.D. has some of the best information on this. http://www.recoveryfromcfs.org/
I am adding this after the fact. I located a forum message in which I describe the exercises I was taught. I did this following cancer treatment made worse by suffering CFS crash. At the time I was bedridden.
These are the exercises I was taught, and the advice I was given. From what you have said, you are worse than I was when I learned these. So be careful.
I was told not to do these all at once. For example, do upper body one day, lower body the next.
Eliminate ones that are just too hard to do. Be careful.
Lying on back
1. Flex ankles so toes point toward foot of bed, then flex all the way the other direction.
2. Move right leg outward and back. Then same with left leg.
3. Flex buttocks and release
4. With a bolster under your knees. Straighten leg, then relax it. Do the same with the other. If it is too hard to put the bolster there, forget it
5. Lift one leg and put it down. Then the other.
BTW, with the leg lifts, if it too hard to lift, it is okay to just lift so less weight is on the bed. IOW, the leg could still be touching, but not pressing into the bed as much.
6. hold out arms palms up. Turn palms down and back up.
7. Put your palms against each other. Press and release.
8. Using your fingers to hold your hands together, pull outward without releasing grip. Then relax.
9. arms out palms up. Bend arms until forearm is pointing up. Like doing curls. Put arms down.
BTW, when you get better all these exercises (even the leg ones) can be done standing up. IOW, when you get to the point where you are walking around, you can do these standing up.