I've gotten better, but I don't know how or why. In case it offers anything useful, I'll just say what I did:
After I was initially diagnosed, I used modafinil for several years to give me a predictable portion of each day in which I was awake and alert. After a couple of years of that, my symptoms gradually abated, and I began, very slowly and carefully, to add some gentle exercise back into my routine. (Before the illness, I had been sort of an exercise fanatic, and I really missed it.)
The boundary on exercise was that I had to strictly avoid getting winded or fatigued, so my exercise regimen was extremely mild at first.
Very slowly and gradually I built up stamina, until, after a year or two, I was up to a couple miles of walking each day. I tried various other kinds of exercise, but most of them tempted me to overexert, and when I overexerted, I went backward.
It's now fourteen years after my initial diagnosis. I still have the syndrome--I can push myself into being symptomatic if I'm not careful--but I've learned some boundaries, and if I stay within them, I have a pretty normal, comfortable life. Nowadays I walk three to five miles a day, mostly around a nearby lake with my dog. Pretty good outcome!
I've gotten better, but I don't know how or why. In case it offers anything useful, I'll just say what I did:
After I was initially diagnosed, I used modafinil for several years to give me a predictable portion of each day in which I was awake and alert. After a couple of years of that, my symptoms gradually abated, and I began, very slowly and carefully, to add some gentle exercise back into my routine. (Before the illness, I had been sort of an exercise fanatic, and I really missed it.)
The boundary on exercise was that I had to strictly avoid getting winded or fatigued, so my exercise regimen was extremely mild at first.
Very slowly and gradually I built up stamina, until, after a year or two, I was up to a couple miles of walking each day. I tried various other kinds of exercise, but most of them tempted me to overexert, and when I overexerted, I went backward.
It's now fourteen years after my initial diagnosis. I still have the syndrome--I can push myself into being symptomatic if I'm not careful--but I've learned some boundaries, and if I stay within them, I have a pretty normal, comfortable life. Nowadays I walk three to five miles a day, mostly around a nearby lake with my dog. Pretty good outcome!