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I have noticed that when I feel the worst my hands are really hot. According to my family, my whole body puts out alot of heat when I feel bad. Does this happen to anyone else?
I have flashes of hot then cold. I had trouble with temperature regulation in general, and I don’t well with temperature extremes hot or cold. In fact my friends and family make fun of me and my temparature regulation problems. My hands or feet are either ice cold or burning up and I think they are the most affected body parts besides the tip of my nose. A friend, here on the forum, told me about Frogg cooling towels. I ordered them, through Dr. Diana’s Amazon window, and they are great! Use the window on the home page so Dr. Diana gets research money. I think I am going to order one for my dad. He has dementia and is bedridden most days. His bed room is on the west side of the house, and it gets hot here in Texas during the summer. :coolcheese:
I have problems regulating my body temperature too. It seems I have a very narrow range of temperatures I am comfortable in. Too much either way and I am miserable. I think the heat is the worst though because the heat makes my heart rate go wild. At least in the cold I can put warmer clothes on…until I get too hot, lol.
It is funny you mention the tip of your nose, my husband teases me about it all the time too. Mostly the tip of my nose gets cold and he keeps telling me he is going to make me a “nose jacket”.
My hands get so hot that when I touch someone, it is uncomfortable for them. Most times I don’t know my hands are hot unless I put them together. I have noticed along the way that when I am feeling really bad, my hands are like this.
I have problems regulating my body temperature too. It seems I have a very narrow range of temperatures I am comfortable in. Too much either way and I am miserable. I think the heat is the worst though because the heat makes my heart rate go wild. At least in the cold I can put warmer clothes on…until I get too hot, lol.
It is funny you mention the tip of your nose, my husband teases me about it all the time too. Mostly the tip of my nose gets cold and he keeps telling me he is going to make me a “nose jacket”.
My hands get so hot that when I touch someone, it is uncomfortable for them. Most times I don’t know my hands are hot unless I put them together. I have noticed along the way that when I am feeling really bad, my hands are like this.
I think people mostly mention how cold my hand are more than hot. I don’t know if this is an EDS thing or just something my kids and I do, but when our feet get hot they sweat so much it leaves foot prints on the floor. When I was working I had shoes that I could only use during the winter because my feet got so cold or only during the summer because they got so hot. When I was a kid we lived in Michigan and remember if I was outside my toes would get so cold, very quickly, and it hurt bad. It was hard to get them to warm back up. Same with my fingers. As I age it only gets worse. I have trouble now holding hot or cold drinks without pain. Like you I dress in layers to pull them of and on as needed. Most of the time my body is burning up, but my feet are ice cold. So I sit with a blanket just on them. To remove and recover as need.
Maybe your husband could invent a designer nose jacket. It might be a hit among us “zebras”. Then y’all can retire early. Nose can get s cold it hurts too.
Shonda
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