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Raynauds and pots


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My doctor tells me that most people with POTS feel worse in hot weather and often feel hot a lot. He laughs at the fact that my pots seems to make me sensitive to the cold - i used to love it, but i get raynauds from even a cold breeze, and i feel cold all over. My symptoms are always much worse in the winter and improve in teh summer.

I ahve to come home and have a warm bath to get my body going when i get home from work.

Then in the heat of summer - everyone else is sweating and im out there in the 40C washing my car feeling great!

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Ramakentesh,

I'm a cold one too! Last week we had 14C and I felt like I was freezing (while I was wearing warm clothes and my wintercoat (in june!!!). In a few weeks we'll travel to the south and I really think I will do much better! Taking mestinon also keeps me much warmer. When I don't take them in time, I start to feel cold again. My cardio thought of Raynauds (didn't do tests for this as he thought that it's very likely that I have this, I also have purple to black hands, or part of my hands, sometimes).

Best wishes,

Corina

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I'm similar to you, I feel just awful in the winter and can actually tolerate heat pretty well. I am always cold, and feel comfortable around 80 degrees :P My doctor told me that some with pots can actually constrict too much. So, I guess a little heat makes us relax a bit? I'm not a fainter, so I guess that constricting does help me compensate....

ps - my hands are freezing as I type this :) Too much a/c!

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cold it is 80+ degrees where i live i cant go in the sun it makes me dizzy and i am walking around in sweatpants and sweat shirts my mom who is always cold is wearing shorts and t-shirts i hate the heat and the coldi aint right in either i want to go jump in a pool but i aint got one and the sun would get me if i did i get bathes but then i spend hours trying to get warm

What to do????

whitewolf

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I too have major problems with extreme cold, and had them long before I had a problem with the heat. Now I can't tolerate either extreme, but I used to lifeguard in super-hot weather & was fine as long as I was hydrated but was a mess if it got chilly...even to the point of blacking out. Now I have about a 5 degree range of comfort & 10-15 deg of safety. So...you're not the only one. Dr. Grubb used to tell me it wasn't quite as typical as the heat-sensitivity but definitely wasn't unheard of.

:-)melissa

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  • 2 weeks later...

Sensitivity to cold could result from a mitochondrial disease. The mitochondria are responsible for generating energy, including body heat. If you have difficulty in maintaining body heat, the peripheral vasoconstriction might actually be beneficial insofar as it would prevent central hypothermia.

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  • 2 weeks later...
My doctor tells me that most people with POTS feel worse in hot weather and often feel hot a lot. He laughs at the fact that my pots seems to make me sensitive to the cold - i used to love it, but i get raynauds from even a cold breeze, and i feel cold all over. My symptoms are always much worse in the winter and improve in teh summer.

I ahve to come home and have a warm bath to get my body going when i get home from work.

Then in the heat of summer - everyone else is sweating and im out there in the 40C washing my car feeling great!

YOU ARE NOT ALONE. My hands and feet and nose and body feel cold-sometimes EXTREMELY-- unless it is 79F or higher. Activity may warm me up for a lil bit in cooler temps, but my hands stay ice cold. This is a very distressing symptom for me. I am still attempting to find a treatment that works. I am embarrased to shake hands, touch people. I notice when I do hug someone, how WARM they feel compared to me, like my internal heater is broken! I want my hands back! I want to be warm again at 72 F! Everyone who comes into my apartment says its a sauna, even my 54 year old mom! I honestly don't understand all this and it upsets me. The only thing i take is paxil daily and xanax as needed. I am going to try to start exercisng again, hopefully that will help. One doctor may put me on thyroid hormone to see if that helps me. The wintertime is awful. Even with my winter coat on, the cold is EXTREMELY PAINFUL. It has been 90F here for the past few days, and it is like heaven. And my hands still get cold at times! :)

Dennis

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Wow, it's nice to hear about others like me. Most of the POTS info talks about heat intolerance, but like all of you, I have more problems with the cold. Now granted when the weather gets to 90 degrees and above, I do struggle, but I really feel better in the summer than in the winter and it's not just the extra sunlight - although I think that helps. I often need to warm my body up with a warm bath or soak in my hot tub during the winter and actually feel energized by it. This seems pretty opposite of what is usually said about dysautonomia, but I think the above comments give some good insight into how this can be the case for some of us. It's nice to know I am not alone.

~Roselover

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I have POTS and Raynauds. I have told my rheumatologist that it's like my body doesn't know what the temp is outside, it just does what ever it wants. In fact, I live in Minneapolis and we are having a really hot summer and I'm seeing the rheumatologist this week because my Raynauds has been so bad the last month or so.

Bren

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