I saw the vascular specialist again today and they did a test to determine for sure if I have Raynaud's. The doctor was as surprised as I was to see that after putting my feet in ice my blood flow actually increased to my feet! She says this means I don't have Raynaud's but definitely vessel wall instability. They are malfunctioning but in an unusual way - however they want to. She feels the source is the nerves supplying the blood vessels but since she can't define it has no idea how to treat it.
She did send me to the pain specialist the same day though and he has two ideas he wants me to choose between for the terrible pain I get in my legs. When I stand or my feet are down, they turn blue (unless the erythromelalgia-type reaction is happening, then they are red) and are very painful with tingling and burning. I sit with my legs up most of the day. Anyways, he would like to try either 'sympathetic blocks' or a ketamine infusion. Has anyone had either of these procedures done for this type of pain? Any thoughts or experience would be greatly appreciated.