SLynn Posted January 12, 2004 Report Share Posted January 12, 2004 I was wondering if anyone has a hard time with staying cold. I constantly stay cold and it takes a long time before I can warm up. If anyone has any advice, please let me know! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 12, 2004 Report Share Posted January 12, 2004 Problems with temperature regulation are common with people who have POTS. Folks typically complain of either being too hot or too cold, and having difficulty getting to a point where you feel comfortable.Once I get cold, I have trouble warming up...and if I get too hot, I have trouble cooling off. Nina Quote Link to comment Share on other sites More sharing options...
genie Posted January 12, 2004 Report Share Posted January 12, 2004 Typically, I find that I stay colder when I?m up and as soon as I lay down I get hot. Guessing this is normal when you have autonomic disorders and do also find that it takes a long time to warm up or cool off as well. Hope this helps. Quote Link to comment Share on other sites More sharing options...
ethansmom Posted January 12, 2004 Report Share Posted January 12, 2004 Me too- I'm always hot or cold, rarely comfortable, and once I'm uncomfortable I have trouble getting regulated again Just another one of those lovely effects of dysautonomia.... Quote Link to comment Share on other sites More sharing options...
SLynn Posted January 13, 2004 Author Report Share Posted January 13, 2004 Thank you for your imput. I always like to get other opinions so I know i'm not the only one who has to suffer through these weird symptoms. I have read that many people experience this but when I talk to my doctor about it he acts like i'm crazy! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 13, 2004 Report Share Posted January 13, 2004 I used to have this problem when my POTS was full blown. I don't really experience it anymore. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted January 13, 2004 Report Share Posted January 13, 2004 That's what I love about this board ... a chance to feel NORMAL!!The key for me is layers, layers, layers.I wear a sleeveless dress, with a long sleeve sweater and I keep a light pair of knit glove in my purse that I often don indoors!! I read something about this once ... it said something like we expend all of our "energy" trying to regulate our temperature that we deplete on of our amino acids.Actually it was this article that I read that led me to talk to my docs about POTS in the first place. Here's the quote:"In order to conserve scarce heat and thus maintain the core body temperature at the normal level, which I suspect would have a higher priority than maintaining orthostatic tolerance, the sympathetic nervous system constantly constricts the arterioles serving the skin, which happens to be the largest organ of the body. I suggest that the resulting high demand on tyrosine leaves the sympathetic nerves that are supposed to regulate the constriction of veins in the lower body with a shortage of the raw material needed to do their job, and this in turn leads to the observed orthostatic intolerance."http://www.immunesupport.com/library/showa...cle.cfm/ID/5168EM Quote Link to comment Share on other sites More sharing options...
Timbo Posted January 13, 2004 Report Share Posted January 13, 2004 I am cold in the winter, but summer is no problem, in fact I do way better in the heat than I did before POTS. Quote Link to comment Share on other sites More sharing options...
justin Posted January 14, 2004 Report Share Posted January 14, 2004 nothing that i do can change the fact that my extremeties are absolutely freezing almost all of the time (except in summer). they are so cold, in fact, that when i touch someone's bare skin with them they scream. even in my -15 Celsius rated sleeping bag in my bedroom at night, my feet particularly are like ice. thick socks don't help, but interestingly, sleep does. when i wake up in the morning, everything feels even temperature.i find winter way worse for all of my symptoms (with the noticable exception of tachycardia and palps, in which case summer is definitely worse). i'm afraid to go outside in winter anymore.breathing cold air is a particularly bad experience. it brings on these asthma-type symptoms that are kind of frightening. Quote Link to comment Share on other sites More sharing options...
Ling Posted January 15, 2004 Report Share Posted January 15, 2004 In live in South Africa and the heat is unbearable. I feel as if I could live in a swimming pool all summer this year. But I also feel the cold just as quickly. I am normally dressed like an Eskimo when no one else is and I feel the heat more than other people to. Can't say I know anything that helps and I feel worst during these periods.Good Luck Quote Link to comment Share on other sites More sharing options...
pamyla Posted January 15, 2004 Report Share Posted January 15, 2004 I'm always cold, even in the summer. My hands and feet are also like ice almost all the time. When my hands are really cold I stick them under warm water for a few minutes. It also helps to drink warm things like soup or tea. Other than that I own 3 portable heaters that I keep in various rooms Quote Link to comment Share on other sites More sharing options...
DawnA Posted January 16, 2004 Report Share Posted January 16, 2004 I love the outdoors, but no longer go out. I can not take temperature changes. The only time I spend time outside is when it is sunny and the temperature is between 60 to 75 degrees. I also wear lots of layers. My kids hate rididng in the car with me, because I blast the heater. If I could I would wear gloves while typing this, because my hands are freezing.Dawn Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted January 16, 2004 Report Share Posted January 16, 2004 Walking always helps me to warm up. Sometimes I can be sitting here at my desk FREEZING, but then I can get up and walk around for 5 or 10 minutes and feel warm again. Michelle Quote Link to comment Share on other sites More sharing options...
denabob Posted January 17, 2004 Report Share Posted January 17, 2004 It's nice to finally find a group of people who experience the same wierd sensations as I do! I never had much problem with extreme temperatures until pots and now cant seem to balance out. I'm one extreme or the other. I've noticed though that when I take proamitine that I freeze no matter what time of year it is! Quote Link to comment Share on other sites More sharing options...
briarrose Posted January 23, 2004 Report Share Posted January 23, 2004 Yep, I posted this at the NDRF website - topic was "An additional wardrobe to accomodate this illness."Up until a couple of months ago I was cold all of the time. You don't want to touch my ice cube feet or hands, my knees, nose and rear. The funny thing now is I can have icy extremities and my core can be sweating. This is so weird. Quote Link to comment Share on other sites More sharing options...
scamelo Posted January 23, 2004 Report Share Posted January 23, 2004 Don't have full blown POTS, but do have BP drop and HR increase on standing. I live in NJ and its been colder than usual this winter, not sure if its this partial POTS or the frigid Canadian like weather, but I am wearing layers. My hands and feet are frigid. I don't remember having feet this cold before, but I might not have paid attention, since last year I had high BP and was feeling fine. Its 70 in the house and I am still wearing a long sleeve shirt and a sweatshirt most of the time.I dread driving my kids to school in the morning. I run out and start the van and let it run for 20 minutes! Quote Link to comment Share on other sites More sharing options...
justme Posted January 28, 2004 Report Share Posted January 28, 2004 My wife has the same thing. Ice cold feet and hands (but not all the time). She has a really hard time with regulating her body temp. Sometimes she is hot and sometimes cold. As mentioned, this is a common symptom of POTS. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 29, 2004 Report Share Posted January 29, 2004 More snow! For me, wierd as it is, drinking cold liquids can make me shiver and enough hot liquid makes me hot so here I am sipping coffee.?briar, I couldn't find your list would you mind repeating what your additional wardrobe is.justin, I discovered "smartwool" it has truly saved me in the freezing cold! They make 100% non-itchy wool. Try the socks, I expect you will be delighted with the warmth. They also have a great selection. Thick, thin, walking, hiking, color choice..To stay warm my winter basics are. Layers. I first use undergarments, (my heart monitor transmitter goes underneath too). Then I use a knee to rib high compression garment. Then I put on my compression panty hose. I also need a compression sleeve for one arm for lymphedema. Then I catch my breath. Then I use smart wool socks, leggins and undershirt. I love how thin the wool layers are and I can always take them off if I start heating up. Then I put on my outer layer and I'm done! I may feel like I just had a work out, but I sure don't feel cold!!!tearose Quote Link to comment Share on other sites More sharing options...
Louby Posted January 29, 2004 Report Share Posted January 29, 2004 Hello,I suffer with the cold all the time, at the moment I am suffering more than usual as we have snow! (this never happens in London)At the moment our office is around the 24 mark, and I am the only one with two jumpers and a scarf still firmly situated around my neck - I am currently winning the battle to keep the windows closed.I'm suffering with very bad night sweats at the moment, however most of the time my nose, feet and hands will be like ice blocks. Quote Link to comment Share on other sites More sharing options...
Fatiguedguy252 Posted March 9, 2005 Report Share Posted March 9, 2005 I'm new here and I've been freezing for the past six months! I can't warm up, my hands and feet are freezing cold, but thermometer says 98.2. I avoid shaking peoples hands because they look at me and freak out because my hands are freezing. I'm also very tired and light-headed... help!!!! Dennis Quote Link to comment Share on other sites More sharing options...
katbaby Posted March 9, 2005 Report Share Posted March 9, 2005 I have POTS, though not as bad as I did a few years ago, but I still always dress in layers. It's weird, I used to always be cold, and now I'm always warm, except my hands, which range from freakishly cold to freezing, no matter how warm the rest of me is. I never used to wear socks around my apartment or to bed but now I have to or my feet are freezing. I remember when I first had POTS but was undiagnosed, people used to remark on how I'd go from sweating to shivering in a mere minutes. Now I just know, always wear a tee shirt with something over it, because you'll be feeling different climates all day long. I also keep my apartment very cold, yet still have night sweats. God I hate those. Quote Link to comment Share on other sites More sharing options...
guvna2004 Posted March 9, 2005 Report Share Posted March 9, 2005 When im outside for about 5 mins and its cold my hands turn blue, i get very cold. I have actually walked for 10 mins and my whole arm went numb, took about 40 mins to go back to normal. My girlfriend always complains my hands are always cold. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 9, 2005 Report Share Posted March 9, 2005 i keep the temp in my house set at 78. My poor family but if I get cold I feel like I have the flu. I mean really sick. We have had a very mild winter here in Washington, it has been such a blessing. But also the extreme heat in August isn't great either. Dave says I'm never happy, but I seem to be like a lizard, need the sun for my blood to circulate and then hide under a rock to keep it from boiling! I don't sweat it off either, I just turn red like a lobster. It's so attractive....morgan Quote Link to comment Share on other sites More sharing options...
India Posted March 9, 2005 Report Share Posted March 9, 2005 I live in Hawai'i (I know I am not going to get much sympathy for that!) and when the trade winds drop and the temperature soars, I am pretty much unable to function. I try to keep as fit as possible but am totally unable to exercise during the day when it is hot outside. I took tennis lessons at 8am in the morning last summer and even that was too much for me most of the time. My body simply cannot seem to cope with the demands of exercise and regulating my body temperature. I used to be an extremely active person. But now, the most I can manage is walking in the evenings after it has gotten dark and hence cooler with my husband. My exercise tolerance is much better in cooler climates but, as my trip to England recently demonstrated, I have to wear layer upon layer of sweaters and thick fuzzy socks to keep warm! I'm sitting in my office at the moment and have managed to adjust the a/c to a comfortable level for me. But I find that if the powers that be determine the a/c needs to go up I have to put a sweater on!Consequently, I always carry around various clothing items with me and even a pocket fan. My girl scout training is kicking in here--Be Prepared!India Quote Link to comment Share on other sites More sharing options...
blackwolf Posted March 10, 2005 Report Share Posted March 10, 2005 i agree with everyone else. layers are so important. my other stuff includes a good heating blanket, hot pads, warm water bottle, heated slippers, gloves, scarves, socks (often over pressure stockings).hot, just reverse, lite, airy, prefferably cotton clothes, spray bottle with water or, when desprate, water with either witch hazel or vinegar(chef's salad anyone) to aid in evaporation, also drinks and even, for me positional changes may help.good luck, blackwolf Quote Link to comment Share on other sites More sharing options...
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