Kitty
Senior Member (Voting Rights)
I wanted to ask about this, as it’s always seemed fundamental to what went wrong when I got ill in 1976. I think it’s an ME phenomenon, but I don’t know if everyone has it.
I’ve been in a phase of reduced capacity since early July, but this morning the switch happened. Over about 30 seconds, the tension in all my muscles released.
It’s almost as tangible as sinking into a hot bath after a hard day, but it’s not the same. Whatever's changing is at a more microscopic level, and it can’t be controlled voluntarily.
It can’t be induced by massage either. That’s a short-lived effect, but in the absence of significant PEM, this switch can persist for a long while. When I had overnight remissions in the first two decades of illness, it lasted years.
Instead of being jerky, weak, and needing conscious pushing, my muscles switch to a smoother, less effortful mode. The fatigability’s still there, but there’s more reliability and control; I don’t feel whenever I’m upright that I might fall at any moment. It’s like a combination of recovering from dehydration, getting non-ME sleep, and losing 15 kilos in weight.
I know bodily sensations aren’t especially helpful when investigating ME, but if I took part in a treatment trial, I’d definitely want this on my list of potential outcomes. It might be peculiar to me or only occur in a small subset, but if it’s more widespread, it probably ought to be recognised as a reliable sign of some improvement, and its persistence (or not) recorded.
I’ve been in a phase of reduced capacity since early July, but this morning the switch happened. Over about 30 seconds, the tension in all my muscles released.
It’s almost as tangible as sinking into a hot bath after a hard day, but it’s not the same. Whatever's changing is at a more microscopic level, and it can’t be controlled voluntarily.
It can’t be induced by massage either. That’s a short-lived effect, but in the absence of significant PEM, this switch can persist for a long while. When I had overnight remissions in the first two decades of illness, it lasted years.
Instead of being jerky, weak, and needing conscious pushing, my muscles switch to a smoother, less effortful mode. The fatigability’s still there, but there’s more reliability and control; I don’t feel whenever I’m upright that I might fall at any moment. It’s like a combination of recovering from dehydration, getting non-ME sleep, and losing 15 kilos in weight.
I know bodily sensations aren’t especially helpful when investigating ME, but if I took part in a treatment trial, I’d definitely want this on my list of potential outcomes. It might be peculiar to me or only occur in a small subset, but if it’s more widespread, it probably ought to be recognised as a reliable sign of some improvement, and its persistence (or not) recorded.
