So this particular pain, discomfort or whatever that I can’t put into words for my husband. My hand is burning but it’s cold and aches but there’s still this overwhelming feeling of what? It f**ing hurts and I’m tired, exhausted and I don’t know how to even explain it with words and I’m tired of trying. I’m tired of “how’s your hand today?” He’s tired of “don’t ask” What am I feeling? That gnawing pain that burns but it’s cold, under my skin it’s hot? But on top it’s cold? Am I crazy? I just want to sleep. Is that too much to ask?

Rambling after seeing my specialist today.

Onset was 2016 in my right leg - hip to toes. More recently it's spread up my side, down my arm, into my neck and head.

The dystonia is so violent I've subluxated a rib twice, as well as it continuing to try dislocate my wrist and clavicle.

Half my face is now starting to show the color changes, swelling, my eye gets forced closed and mouth twists on one side. Now having trouble eating and swallowing.

One of the things that happens is I keep punching myself in the shoulder/throat/face. On Sunday I punched myself in the face twice and managed to pull the third - only to think "ha ha, missed!" What on earth is this doing to my mental health?

Specialist is wonderful but obviously not a magician. Medication is being tweaked. Problem is the major thing stressing me out won't be resolved any time soon. Consciously, I'm relaxed. Subconsciously... I can't even do my breathing exercises any more as they set everything off.

Can anyone relate?

I’m pretty interested in trying this. TMS, the brain magnet, has some evidence as well.

https://pmc.ncbi.nlm.nih.gov/articles/PMC7711855/