Crazycatlady Posted November 30, 2018 Report Share Posted November 30, 2018 Hey guys Juat got DXd with POTs last month. Around this time since it’s been getting cold, my fingers have been turning white/stinging/other classic Raynaud symptoms. Is this related to dysautonomia? I tested negative for autoimmune issues (although my moms side has a lot of them).. just curious to hear your stories Quote Link to comment Share on other sites More sharing options...
KristaKupcake Posted November 30, 2018 Report Share Posted November 30, 2018 2 hours ago, Crazycatlady said: Hey guys Juat got DXd with POTs last month. Around this time since it’s been getting cold, my fingers have been turning white/stinging/other classic Raynaud symptoms. Is this related to dysautonomia? I tested negative for autoimmune issues (although my moms side has a lot of them).. just curious to hear your stories It is possible that it could be POTS related (some people can vasoconstrict as opposed to vasodilating in their extremities). I don’t have Raynaud’s ‘officially’ but I have similar symptoms. I did chemotherapy years ago that can damage the vascular system. Over the years I’ve noticed my hands and feet get very cold very quickly and will hurt/loose feeling. I have some numbness in my middle fingers too which is a newer symptoms. If I grab something out of the freezer I essentially loose feeling in my fingers right away as they get so cold! My fingers will feel almost as cold as what I grabbed from the freezer. Sometimes I have to run my hands under warm water (not hot!) to get the feeling / blood flow back. It helps to always wear gloves when the temperatures start to get cold outside. I try to wiggle my fingers and toes anyway to keep blood flowing so it doesn’t pool, but also so I keep warm and don’t go as numb. Quote Link to comment Share on other sites More sharing options...
p8d Posted November 30, 2018 Report Share Posted November 30, 2018 I have it and I think many do. There has been discussions about it on this forum about it before. It might be worth doing a search. Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 30, 2018 Report Share Posted November 30, 2018 Hi - I have had Raynauds all of my life, when I was a teenager I had actual "frostbite" on my toes from it. I also have hyperadrenergic POTS, which runs in my family. I think it is all related to sympathetic overcompensation. Quote Link to comment Share on other sites More sharing options...
p8d Posted November 30, 2018 Report Share Posted November 30, 2018 I get it on my ears as well as fingers and toes. Part of my ear will go bright red or blue. It gets the Drs all excited when they see it. I also am hyperadregenic. Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted December 4, 2018 Report Share Posted December 4, 2018 Of my Fathers 5 children only 2 have Raynaud's, of which I do and I am the oldest and no. 5 o 5 my youngest sister. Both Dad and his mother had it too and they also had H-EDS. My youngest sister has H-EDS, Dad, grandma, and myself and so does mt son#2. Only Grandma and my son#2 had or have POTS. I once had a car with heated steering wheel, was that awesome. Also the air conditioner vents blowing hot air is the best thing. BUT I STILL LOVE WINTER. Quote Link to comment Share on other sites More sharing options...
nik1980 Posted December 4, 2018 Report Share Posted December 4, 2018 Oh yeah...my daughter calls it "alien hands" because some of my fingers turn bright white. It is also painful. I have been doubling up on gloves and use Hot Hands to help as well. Quote Link to comment Share on other sites More sharing options...
nik1980 Posted December 4, 2018 Report Share Posted December 4, 2018 Alien Hands Quote Link to comment Share on other sites More sharing options...
nik1980 Posted December 4, 2018 Report Share Posted December 4, 2018 Quote Link to comment Share on other sites More sharing options...
CuriousThinker Posted December 4, 2018 Report Share Posted December 4, 2018 I don't think I have reynauds, but sometimes my hands and feet turn purple if it is cold or. My dysautonomia cardiologist observed this in their office which had air conditioning. Quote Link to comment Share on other sites More sharing options...
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