The key unifying attribute for ME / CFS as a disease seems to be the post exertional malaise (PEM), which seems to have these characteristics:
* Quick accumulation of either lactic acid or some other byproduct of aerobic exercise in the muscle, which does not clear sometimes for many days after exercise.
* An inability to generate strong muscular contractions after a period of aerobic exercise
Some describe this as a lack of stamina, but stamina to me is a vague word that strongly suggests a lack of cardiovascular fitness. In my own case, this is absolutely NOT the reason for the muscular fatigue. My heart and lungs are ready and willing and able to go on. Something very specific to metabolism inside the muscle just completely fails, and no amount of cardiovascular conditioning will change that. More exercise will in fact make the problem worse.
Great post
1) I am finding that weight workouts with fewer than eight reps / eight seconds of activity per set, with long rests between sets, can be tolerated. What about others? If you let yourself start getting out of breath and becoming aerobic, there will be hell to pay the next day.
I probably would find that a good way to exercise too if I felt up to adding exercise in the mix of what Im already doing. Any sustained weight hold, the object doesnt even have to be heavy! gives me not just arm burn out (fatigue in arms) but also pain in my muscles/wrists or whatever, so short weight lifting with minimum reps probably would be one way I could exercise. I havent experiemented with that to know what about of reps I could do but I know I cant do clothes scrubbing reps for more then about 40 seconds if that without having to stop and rest.
2) I just started yesterday to test the idea of doing swimming sprints, just single laps followed by 1.5 minute rests per lap. This was only partially successful unfortunately. I ended up having some real muscle soreness, but not the same kind of overwhelming fatigue I would experience if I made the workout fully aerobic. So I am calling this an experiment in progress. I may need to increase the length of rests between sets, and it might also be worth experimenting with slowing down the pace of the sprint after eight seconds. (See more below on that.) This is in order to keep the activity out of aerobic / lactate energy use.
I have experiemented with swimming in the past thinking that I may be able to do that, but that experiment just showed me that swimming is bad for me too.
Treading water gets my heart rate up too much.. even with the boucany of my body, its too much to do that for a 2-3 minutes.
Swimming a quick lap and then resting before doing it again... well after a short time it catches up on me even if Im resting minutes between laps. I experiemented too with longer rest times but it still didnt help.. there is only so many laps I can do (with rest in between).. just a few.. and then I cant do more as I feel quite ill (malaised)
I used to compete in swimming before I got sick but with the ME/CFS Im now like a whale in the water! its crazy what skills one can loose with this illness, I now have no natural swimming grace and it takes me nearly twice as long to swim a lap). A 50metre (standard pool) length swim without a break is bad for me (maybe if I tried 25metre laps with several minutes in between, maybe that would work better??). I only managed about 4 laps too (with rest in between).. its all very sad when I used to
easily swim 80 50 metres laps and do that without a break, swimming was effortless to me before I got ill. When healthy it used to be no harder for me then walking was... swimming 50metres is now a major workout.
Anyway.. After experimenting with swimming as a ME/CFS exercise (cause some ME/CFS specialists suggest swimming for us) I had to give up that idea.
3) Is taking a long slow walk recommended? I guess there is no way to keep this from becoming aerobic, even at a slow pace? Any guidelines that can be shared here are appreciated. This one is very tricky, because a 40 minute walk can give you a lot of endorphins and you feel good, but if you are too far into aerobic zone you are producing the conditions that will leave you exhausted that night and the next few days.
Slow walking is bad for me due to the OI/POTS. If Im on my feet and walking a short distance, I try to do it fast as that is better thing thou once my heart rate is up or I start to get warm at all, its bad if I try to maintain that up.
When i was able to exercise with the ME. I used to do a walk/run cycle to exercise (at night when cold). 30-40 seconds run then a slow walk for 1- 1.5 mins to allow heart rate to calm and then run again and continue in that manner. This way I guess i was stopping myself from keeping my heart rate around certain level. not keeping it high for too long. I could do that for 2 hrs .. but irronically standing still.. I couldnt do and was collapsing a heap at supermarket checkouts after about 1 min.
the slow walking after the 30-45 second run.. would also allow my muscles time to recover from this weird burn out they did after those seconds time periods of running (where I could hardly move them, weighted limbs feeling like bricks on feet and would also get pain in my legs). I think my mito wasnt producing enough energy or something once what was there was used, so I had to then go slow and allow some energy to build up again???
2-3 mths of that and I couldnt even really run for longer periods (around 5 seconds longer.. it was nearly a nil improvement after months), I didnt build up stamina to run longer at all.
Anyway I think heart rate and mitochrondia play a huge part in importance when it comes to the exercise issues we have.
As far as exercise goes, I think the only way for us to exercise is with weights using a very low amount repetitions.
