Weird symptoms in arms legs and eyes? What is it?

Hey there!

EDIT: I‘m female, 24yrs old

I‘ve been having a problem for years now which just seems to get worse and I wanted to share this to see if someone has the same symptoms or if someone knows what this could be.

It started with my eyes. I get a sensation around my eye and the eyelid, which is really unbearable. Not painful, but it feels absolutely horrible, stiff, tingly or something like that.

When I blink really really hard (voluntarily) the feeling goes away for a few seconds. Then it starts all over, that area can get quite painful on a „bad“ day where I have to blink literally all the time. I have this every day, but on some days it doesn’t go away at all and on other days I only get 2-3 „episodes“ of 5-60 minutes.

After some time the same feeling spread to my arms and legs, which is even worse for me. I feel like it’s worst in my elbows, wrists, fingers, back of the knees, knees, calf’s and feet. I have to contract the muscles around, stretch or twist to get rid of the feeling. When doing the movement it’s almost satisfying but it comes back almost immediately. It’s the worst when I‘m driving or just laying/siting around.

Here’s the thing: I went to multiple doctors and they found nothing. I had electroneurography, electromyography, blood draw (searched for diabetes, vasculitis, rheumatic arthritis and so on) and they all have no idea why I have this. They believe me that I have those symptoms, they just don’t know what to do.

I‘m at my wits end. I‘m laying in bed with muscle aches because I had a „bad“ symptom day. I went to the cinema yesterday and had to blink constantly. It really messes up everything.

Does anyone experience the same symptoms and found a cause, maybe cure for it?

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