Possible POTS? Burning blood pooling hands

[NYhope]

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!

[angelloz]

I have had episodes of pretty severe blood pooling....deep red hands , but this is usually at its worst for a day or two then less severe. I feel pretty terrible all over when this happens. Has your doctor viewed this when it is bad? How do you feel otherwise?

[corina]

Hi NYhope. welcome to DINET! Have you tried seeing a a POTS doctor? I think trying to get a referral to a dysautonomia specialist may help answer your question. Here's a link to our physician's list in case you need it:

http://www.dinet.org/index.php/physician-list

[yogini]

Have you looked into Raynaud's?

[Clb75]

Dr. Raj wrote an article on this for Pots, he calls it dependent acrocyanosis. If you google it, you can see pictures that are very similar to yours, though it appears to be more common in the legs.

[Katybug]

I do experience this. My palms look like your's but my fingers do not become that red. Mine stay about the same as the coloring of my palms. This develops daily any time I am standing up. I will also experience some numbness if I keep my arms bent tightly for too long. I have to sleep with them fairly straight or the numbness and discoloration will occur. 

I have been checked Raynaud's and do not have that but I do have mild venous insufficiency in my arms and legs. That was diagnosed through Doppler studies conducted at my cardiologist's office. It has been attributed to my vascular tissue being inappropriately flacid due to my Ehlers Danlos Syndrome  (EDS). 

Just as an aside, while I may have had very mild symptoms of POTS, EDS, and MCAS throughout my life, I was not diagnosed or disabled by any of it until I had tick borne illness back in 2007 when I was 32 years old. It was like the Lyme/Babesia allowed these other low lying issues to bloom. 

I hope you continue to make improvements and find more answers. 

Edited August 18, 2016 by Katybug

[NYhope]

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!

 

[yogini]

I think a dysautonomia doctor would mostly be focused on treating HR/BP issues -- do you have those or just the painful hands? 

[NYhope]

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

[yogini]

I would personally start with a GP. It doesn't make sense to start with a specialist if it could be one of many things.  You could mention the various conditions you have researched, maybe the dr would find that helpful. If you don't have positional HR/BP changes dysautonomia seems unlikely.

[My hands are killing me]

I know this is a very long shot as this topic is old and the poster hasn't been here in a year but I have to try. I have the exact same issue. Hands look like above, instantly turn into that photo when they go below chest level for a few seconds. No blood pooling anywhere else I am quite fair skinned. Nothing else wrong with me other than this sudden symptom. I have 4 doctors puzzled and had to keep my hands up almost all day for going on 3 weeks now. Any sort of help would go a long way.

[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. 

[Lymie POTS]

NYhope

Have you looked up erythromelalgia? It can be caused by lyme and coinfections. In my case it is. I hope you can find answers. It can occur alongside POTS and raynauds as well. It can be caused by the coinfections babesia and bartonella.

[11charlie]

Looks like you could have venous tos. It is bad with your arm down because blood is flowing through the artery down the arm and when it starts to return through the vein it can’t return blood flow to your heart due to venous compression. Generally a tight pec minor, tight subclavius, elevated first rib, depressed clavicle or rarely a blood clot can cause this occlusion. It’s better with your arm up because the blood isn’t flowing down the arm therefore venous return is negligible. The fatigue could be caused from blood flow not getting back to the heart from the arm. A vascular surgeon can diagnose venous tos. 

[Edsqueen]

Look into erythromelalgia!!!!