NYhope

Hello, writing my update here* I Unfortunately never found a cure or anything to helop. I went to over 19 doctors consisting of neurologists, cardiologists, vascular surgeons, hand specialist, infectious disease doctors, ect but no one has ever seen this issue before or knows how to treat it. So I just essentially live with my hands raised up which isn't ideal. It's a tough, inconvenient condition, hopefully one day we find a solution.

My HR/BP seem normal, maybe seeing a rheumatologist would be more helpful?

I initially thought it was Raynaud's but from what I've read people usually experience a cold sensation rather than an intense burning. My current doctor hasn't seen this before so he is unsure of the next steps to take. I think a dysautonomia specialist sounds like a good idea and I will start researching dependent acrocyanosis, Thanks everyone!

Hello everyone, I recently discovered I had Lyme Disease due to my extreme joint pain and blood pooling / burning in my hands. As the joint pain has slightly improved (doxycycline) the blood pooling is at a terrible state where I have to keep my hands elevated 24/7. They will start turning a red/maroon color within 3 seconds of lowering and purple after 20 seconds. This has become very debilitating and my doctor (lyme specialist) is confused. I also have extreme fatigue which could be the Lyme or possible POTs. If anyone has any insight or has gone through this I would greatly appreciate some feedback. Thank you!