This is the third time it has happened to me when I'm pushed beyond my limit, my hands slowly curl up with my fingers pointing straight to my wrists and won't open or respond till I've laid flat with my feet higher than my head for a good long while.
Today I had a medical assessment for my blue parking badge. It went well, the assessor was kind and understanding and because I was showing visible signs of becoming more unwell, mottled hands and breathlessness, she cut the assessment short and didn't make me walk. I wasn't stressed or anxious (my life doesn't depend on getting the parking badge) the lighting in the room was horrible and I had to do a lot of thinking, but the closing hand thing seemed out of proportion to what is going on.
The last time it happened was about 4 years ago before I'd had an official diagnosis, I'd been to an event in the wheelchair and got the closing hand thing as I was being wheeled away after. My GP thought I'd had a panic attack - it wasn't.
Does this happen to anyone else? What is driving it?
Hello. I noticed you said when you over do it, well in my view there's half your answer. You're pushing your brain beyond it's limits. We know ME is a neurological condition, and thus you're neuro symptoms will be exacerbated by using your brain, especially when 'doing too much'.
I'll cut to the chase...
I wonder if you're describing what doctors would call a '
focal dystonia', affecting the hands?
I've heard of very severe ME sufferers describing then fingers going into a 'claw' shape for long periods of time. (Not a momentary muscle spasm, actual grip like stance as if holding bicycle handlebars).
Personally speaking, I've also experienced involuntary hand curling up (temporary), during usage of a what is fine motor skill (well for PWME!) such as using a knife and fork at the dinner table and writing with a pen (never use a pen now as I lose grip too rapidly). Others might get it sewing for extended periods (repetitive use of the fingers and
brain working in unison) or anything that is using fingers in a careful and precise manner, repeatedly, such as a plucking violin strings or playing the piano.(A good piano's keys require quite of lot of effort to push down when your're ill).
A potential cause in some may be a partial seizure (sensory changes as well as muscles affected) and/or brain hypoperfusion. I find maintaining gripping cutlery pretty intolerable during the meal by the end of it, my fingers would feel all odd and begin to curl up as a natural position and having them out flat felt strained and odd. This is when feeling 'wired' as if I feel a fit like feeling coming on - all from overdoing it, such as tolerating family guests coming over in their annual pilgrimage when 23232 people talk at once (OK, 3), total nightmare for PWME.
By leaving the room, laying down as much as possible, resting my brain in a quiet dark room and hours passing, my curled up fingers would 'unstick' and return to normal. Also the normal
strength would return. Consequently, I learnt to eat like a wild animal and etiquette goes out the window since then (when I was a teenager this is). The few times anyone ever visits us, they sit and the dinner table and I lay on the sofa sideways and don't care about being seen as antisocial. It makes a difference to the fingers curling and the faintness as your brain is much closer to your heart laying on the sofa, also your blood isn't pooling if you legs are tucked up also.
See if that helps maybe, by saving your brain, by getting more blood to your head? Circulation impairment is a cardinal feature of ME, and if your brain circulation is impaired, it will affect your motor function for sure as your neurons will work even worse than normal even if it's 'just' episodically when more demand for blood is made by the brain, but you can't get the blood as it's pooling in your feet as you're sitting upright. My theory anyway. I have POTS + ME though, double curse. Also to be honest I don't think this will do much, as it's the neurons that are probably burning out their neurotransmitters far too quickly and that's why 'resting' in silence with no input, helps.
What's probably comforting (wrong word) is that other people have replied here, including me, saying we get similar things to you. So in a way, it's probably the pathogenesis of the condition to mash up your brain function and your fellow sufferers maybe have similar brain pathology/phenomena, in the region of the brain doing this to you.
Sorry if that's a useless reply and no doubt I'm totally incorrect but just sharing some thoughts.
P.S My fingers are doing it now from typing, and yes I over did it, by typing too much the other day! Same as you've found. Hit the wall = nervous system payback increases with more symptoms, what psychiatrists call ''fear of activity'' and ''simulated weakness''.