Gosh Barbara it sounds like you have suffered beyond belief over the years! I am glad most of your symptoms are not as bad now. It is a testament to your character that you have survived, and survived to give advice to others.
My jerks started shortly after my first 2 A&E trips, so very early in the holiday, early jan. At the time, because I hadn’t realised it could probably be autonomic dysfunction, I had thought maybe MS, or probably because I was undernourished, but not to the degree I am now. It was different then though, more tingling in my left hand and feet, heavy left leg, but with abnormal sensations in a lot of places. Even my right eye did this electrical thing. Not had that since, though have a sensation, again more in right eye, when I close my eyes. A pulling sensation. All very odd.the jerks have been more noticeable recently, twitches in the lower limbs most common. I do think my abdomen is twitching in much the same way, especially at night. I can hold my hand or foot up and they all move!! I did thankfully sleep better last night, close to 8 hours (BIG REFIEF)! Golly the night before, I felt wired! And the more I couldn’t sleep, the more uptight I became, surging more adrenaline. It was intolerable have to say. The psychology of it all plays havoc with your recovery.
I’m still wondering what is happening in my belly. I can’t seem to eat anything without feeling nauseous immediately or shortly after. On the whole it is worse in the evening. I am wondering if it to do with being so inactive and being horizontal so much,, that my stomach is getting used to no or little food to work with, plus inactivity has slowed the muscles. Or, have I developed a true gastroparesis. I am unsure. Is the abdo pain to do with this, or is eating having the opposite effect, making it a bit hyper mobile. I have had diarrhoea, though not last few days. Not sure whether to try metoclopramide see if it helps, I have a prescription for it. I will literally waste away if I don’t do something, I could literally never eat again! Of course eating exacerbates the light headedness. What a horrible problem this is, and for doctors to only really recognise it as overactivity of the ANS, anxiety driven etc, is well…um.
I have lost confidence though no question. I considered myself a healthy ish happy 40 year old. I’m now confined to a small studio apartment, only going out to appointments, being driven there. Get motion problems within minutes, hot, clammy, tachy. I resist vomiting, I have learnt to do that! Anyway I just wondered with all that you have been through and your list of problems, what psychological support or input have you had? Have you ever been asked to attend a pain or chronic illness management programme? They can be good for meeting others but am aware that the crux of it is to get you to change the way you think about your illness, and that will have a knock on effect on how you behave. Easier said than done when you want to pass out when you stand and feel so sick on eating, or feel like your body is exploding with electricity etc etc….. Don’t think my jerks were like yours though, yours sounded truly awful! I can cope with mine as long as they don’t make me an insomniac!!