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Can't get my head around the exercise thing

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I've had CFS for 16 years. Even after this length of time, I still am surprised and frustrated with my response to exercise. What I think is so strange is how when I do the exercise, it's actually enjoyable. I used to be a dancer, so it feels great to stretch and move around. But I will do 5 knee bends and 5 waist stretches and stop. I would never even think of doing anything aerobically. Even though I feel fine, it's thee next day that I really suffer. I am in bed, running a low grade fever and unable to even get up to feed myself.
Try to avoid, at least for the moment, any form of exercise standing up.
You could use small weights while sitting or do 1-2 crunches or even attempt one push-up but avoid any standing exercise, we usually
don't tolerate them expecially when so reactive as you sound.

A person I know, without CFS, used to exercise three times a week for 40 minutes each workout.
Now he converted to 5 minutes everyday. According to him is as strong and fit as ever so there was no change
in splitting up the exercise-load of a day in daily mini-session. So for example instead of doing 5 knee bends you could
do 1 knee bend everyday. But for the moment avoid exercising while standing up, you should suffer less next-day exhaustation.

Also I never tolerate exercising in the morning, in fact the less I do in the morning (including talking) the better
I feel slightly better in the evening so usually I do more around 6-7 pm
In the morning PWCs have many post-night symptoms that worsen their condition including: dehydration from bad fluid ritention,
low blood sugar from impaired sugar metabolism, low endorphine from impaired sugar metabolism, low concentration and high brain fogginess from the waking-up activity (it's actually as tiring as any other activity) and increaed REM phase, blood pooling from maintaning the same position for so many hours.

Also try to eat something to recover after exercise, even if it's just 1 knees bend, try to eat a piece of fruit or anything afterward to take advantage of the post exercize recovering window. Even healthy people, if they don't after exercising, recover more slowly and feel more post-workout pain.

I still don't understand why PWC's can feel fine on the day of exertion, but a day later crash.
This is the main feature of CFS.
You accumulate "exhaustation" and you feel it the next day, when you push too much you might need days or week before you are
even able to leave the bedroom, but it's always the next day. Which is bad because we have no signals that we're doing too much.
 

curry

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I've had CFS for 16 years. Even after this length of time, I still am surprised and frustrated with my response to exercise. What I think is so strange is how when I do the exercise, it's actually enjoyable. I used to be a dancer, so it feels great to stretch and move around. But I will do 5 knee bends and 5 waist stretches and stop. I would never even think of doing anything aerobically. Even though I feel fine, it's thee next day that I really suffer. I am in bed, running a low grade fever and unable to even get up to feed myself. I had foot surgery, and I can not even do foot exercises without a bad relapse. I had a foot massage and pointed my foot 20 times each several ways and then for a week I couldn't get out of bed.

Obviously, my conditioning is getting worse, so I really need to exercise. But it's like quick sand, if I struggle to exercise I sink quickly, if I just try to rest, I slowly sink into deconditioning.

I still don't understand why PWC's can feel fine on the day of exertion, but a day later crash.
I am one of those that crashes 2 days after exercise. I don't get it. But, what's to get about this illness? No one really gets the whole ball of wax. There is more to it then even docs realize.
Dr Myhill's theory for delayed fatigue is the following:

"In producing energy, ATP (three phosphates) is converted into ADP (two phosphates) and ADP is
re-cycled back through mitochondria to produce ATP. However, if the cell is pushed (ie stressed)
when there is no ATP about, then it will start to use ADP instead. The body can create energy from
ADP to AMP (one phosphate), but the trouble is that AMP cannot be re-cycled. The only way that
ADP can be regenerated is by making from fresh ingredients, but this takes days to do. This
explains the delayed fatigue seen in chronic fatigue syndrome.

So to summarise, the basic pathology in CFS is slow re-cycling of ATP to
ADP and back to ATP again. If patients push themselves and make more
energy demands, then ADP is converted to AMP, which cannot be recycled
and it is this which is responsible for the delayed fatigue.
"

I've been doing a treatment to improve mitochondrial performance, as outlined by Dr Myhill, and my energy level and exercise tolerance has greatly improved.

Hope that helps.