Hi All,
Yes. I have this too. I have severe Dysautonomia due to trauma. I also have CRPS, POTS, MCAS and EDS. Lucky me.
I’ve been trying to get help for this recently as it wasn’t ever painful, but now as I’ve had it 4 years untreated and live at 8000 feet (to keep my body cold :-), I’ve now developed neuropathy (feels like a TENS unit turned on high on my feet and hands).
I also have no veins whatsoever. I believe my nervous system is whacked, and I’m desperately seeking treatment. I also learned that a drug I’m taking (Clonidine) can bring this on.
What helps me is key POTS stuff- hydration, sodium loading, and compression stockings at least 12 hours a day. I also wear gloves on my hands when they get real swollen from cooking, gardening, etc.
Just stumbled upon this group, I know post is old, but maybe it will reach some of you.
