I experience this all the time too, my doctor said it could be a form of neuropathy. Does it happen at any specific times or with any movements? I know for me my legs are usually numb and tingly most of the time but then when I bend my knees my feet get really tingly and when I raise my arms about my head the same thing happens with my hands. I’m getting an musculoskeletal ultrasound this Monday to check my veins for swelling to see if that is a potential cause too

This sounds like my small fiber neuropathy. I have POTS so its triggered more from blood circulation. I have it in my limbs, severely in my hands as I have more EDS like skin there. If its not correlating with blood circulation it could with weakened blood vessels that EDS can cause on its own. A skin biopsy can tell if thats what it is if you feel the need to be tested. Other than that I have no clue.

I second Small Fiber Neuropathy, especially with my POTS. I don’t remember the exact statistic that my doc gave me but I think it was 2 of 3 POTS patients have it (Apparently I’m one of them), the POTS clinic I go to has the skin biopsy for it as part of their full work up because it’s so common. Mine is mild so it’s not treated (I also have no idea what the treatment would be) but you should definitely ask about it.

Thank you for your thoughts/input, guys! I’ll definitely check into this further.

Do you have pain with the numbness? It could be neurogenic thoracic outlet syndrome

Yes! I have been dealing with that since before my EDS diagnosis. For me at least it is neuropathy(not sure if small fiber or whatnot though). My is bad enough that I am treated for it. I was originally diagnosed and treated by a neurologist for this.

@Murbear, yes! My neurologist seems to think that there’s no real cause for it since the EMG was normal and has said it’s probably related to my OCD/anxiety issues. I don’t think it is