I’m sorry for the late reply; I sure you’ll understand!
I did
not feel normal at all for 5 years !..I had a couple of hours a day when I was able to walk (maybe 2k steps)...
For I think the last 4(?) years, I take 4 x 50mgTramadol a day, and never, never, no matter how terrible the crash, ever, go over that dose. But if I miss a dose by accident, within a couple of hours I crash suddenly, when I say crash, I mean going from about a 6-7 (my personal ME scale!) to a 9, with little warning.
Drs have suggested for me the 24 hr slow release pill, same 200mg, but only one a day; but I found a I preferred the separate doses. I felt that I got to know the ‘real’ me - Not really Real, just the real MEme. I preferred
not to live in a constate equalised state of exhaustion (which I did with the extended release) without big crashes. I liked to get some brighter hours with a 50mg pill or at the least, relief from the worse.
I don’t particularly recommend this approach!
I sympathise
so much with you re: insomnia: it can be hell. I don’t think that Tramadol makes my sleep better or worse. Insomnia just seems to have its own motivation, whatever that can be.
I’ve had it since adolescence, but in on-off phases; first the phases were of years, now of days. A bad night does make the ME experience worse, for sure, but a long sleep does not feel really refreshing either.
Somewhere, I read that some ME doctor had said he wished he could just put all people with ME into a sleep coma for weeks. When I read that, I was overwhelmed with a sense of longing, for that unreachable paradise.



