ramakentesh Posted April 20, 2012 Report Share Posted April 20, 2012 just curious - hypothermia almost... weird. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 20, 2012 Report Share Posted April 20, 2012 Violent, teeth-chattering shivers? Yeah. When I walk down the frozen food section of the market or if the air conditioning is too cold, my hands turn blue/white and I can't feel my thumbs at all. I never run a fever and rarely can get a normal temperature reading from a thermometer. Quote Link to comment Share on other sites More sharing options...
issie Posted April 20, 2012 Report Share Posted April 20, 2012 Yeah, we've been talking on another thread about some of this. Our bodies don't seem to regulate our temps correctly. I've been having some sort of cold to the bone feelings - but, the room isn't cold - but, I will be having chills and I don't have a fever nor am I sick. It seems to happen more when I'm over tired. My thyroid levels are good. Someone suggested low cortisol. I have had that in the past. So don't know. Bodies are malfunctioning in many directions. Issie Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted April 20, 2012 Report Share Posted April 20, 2012 Yes, definitely! I am constantly layering up to keep warm so the deep cold doesn't sink in. I have avoided going outside in the cold because I know my body can't handle it no matter how many layers I have on and I will end up with nasty whole body shakes. Quote Link to comment Share on other sites More sharing options...
issie Posted April 20, 2012 Report Share Posted April 20, 2012 Come to Phoenix, AZ we're already into the 90F and it won't be long it will be over 100F. Then you're talking too hot. But, my body temp. normal is around 96.1 so very low and I feel cold most of the time. I'm sitting here with a sweater on this minute and it's hot outside.Issie Quote Link to comment Share on other sites More sharing options...
lillybits Posted April 20, 2012 Report Share Posted April 20, 2012 the cold hates me ha ha ! I live in wisconsin so there are only a few times I can go out with out layering. I get out as much as possible but i cant even sit in my own house with out a hoodie on! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 20, 2012 Author Report Share Posted April 20, 2012 Violent, teeth-chattering shivers? Yeah. When I walk down the frozen food section of the market or if the air conditioning is too cold, my hands turn blue/white and I can't feel my thumbs at all. I never run a fever and rarely can get a normal temperature reading from a thermometer.Wow Im exactly the same - often when i feel feverish i am actually lower temp rather than higher temp.i seem to to ok in heat - i remember i organised a BBQ with heat at 105 F and I was fine while everyone else was miserable. Quote Link to comment Share on other sites More sharing options...
issie Posted April 20, 2012 Report Share Posted April 20, 2012 Violent, teeth-chattering shivers? Yeah. When I walk down the frozen food section of the market or if the air conditioning is too cold, my hands turn blue/white and I can't feel my thumbs at all. I never run a fever and rarely can get a normal temperature reading from a thermometer.Wow Im exactly the same - often when i feel feverish i am actually lower temp rather than higher temp.Ditto - and if I have any temp above 97.0 I'm really running a fever - get doctors to believe that one. But, sometimes I'll think I have a temp and be very low. Wonder if that's some autoimmune thing - I heard most people with autoimmune issues run low.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 20, 2012 Author Report Share Posted April 20, 2012 NO is involved in temperature regulation but so is the ANS in general. Quote Link to comment Share on other sites More sharing options...
issie Posted April 20, 2012 Report Share Posted April 20, 2012 NO is involved in temperature regulation but so is the ANS in general.Lack of or too much (NO)? Well, we all know there's the ANS issue in all of us. Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted April 20, 2012 Report Share Posted April 20, 2012 Yes I have it too and it drives me nuts! If I start feeling cold and the tips of my fingers turn white and my nail beds turn blue (so do my toes but they're usually covered). My lips also turn purple. I've also noticed that when I take my temp it usually reads around 97 or so. I almost never see it at 98.6. No matter how much I layer, I can't seem to stay warm. Just the other weekend, it was sunny and 75 outside and I had two long sleeved sweaters on and was drinking hot tea with my family and was still cold. I made my husband leave the flannel sheets on our bed all last summer (which he did not appreciate!) I joke that my thermostat is broken. Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted April 20, 2012 Report Share Posted April 20, 2012 We had a record warm winter and I felt colder than ever.... My feet and hands go to extreme's as well. Quote Link to comment Share on other sites More sharing options...
corina Posted April 20, 2012 Report Share Posted April 20, 2012 mestinon really helped me with that. i could stay warm (as in well regulated) on it for about 4 hours and when i forgot to take the next dose i could tell as i got cold again. since i'm on octreotide and paxil i get cold spells but not on a daily base so i'll take it how it comes Quote Link to comment Share on other sites More sharing options...
the4richards Posted April 20, 2012 Report Share Posted April 20, 2012 I noticed about a year before my first flare that any exposed areas to the cold and I get hives. Even in 50+ temps if there is a wind. I've even gotten them when I prepare cut up chicken for dinner, my fingers will be little itchy sausages for a while. I can't even have ice in my drinks. Lovely when you live in Michigan! Quote Link to comment Share on other sites More sharing options...
micheller Posted April 20, 2012 Report Share Posted April 20, 2012 the cold hates me ha ha ! I live in wisconsin so there are only a few times I can go out with out layering. I get out as much as possible but i cant even sit in my own house with out a hoodie on!Checked out your profile since I'm in WI too, we are neighbors. Ha! I'm in Menasha. I can't handle the cold either. I have the heat at 75 and I still have fleece pants, sweatshirt, and blanket. I dread going outside when it's cold. But my weird thing is I feel worse if my feet are warm. It's 35 out and I have flip flops on. Quote Link to comment Share on other sites More sharing options...
Elfie Posted April 20, 2012 Report Share Posted April 20, 2012 I live somewhere cold and am painfully cold (similar to the first stages of frostbite and hypothermia) all the time during the winter. My body often doesn't create enough heat for me to trap it and use it to warm up (especially extremities) however, I find putting heat from other sources painful (heating pad, electric blanket, even warm shower). I'm always sticking my "ice hands of death" on close friends and family members who run hot (I give a lot of massages too because I get to borrow body heat and the rubbing does eventually warm my hands up). AC can also leave me shivering, especially after eating and I will end up with cold extremities from that. That said, I don't like heat either. When we go from warm to "hot" I get pretty miserable and feel dizzy and short of breath. Can't keep me happy I guess! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted April 20, 2012 Report Share Posted April 20, 2012 I always say my thermostat is broken too! I can get so cold, sometimes after eating, that I have to put socks on, a heating pad and crawl under the blankets. Cold hands and feet a lot, but then I can't tolerate the heat either and my hands look like puffy sausages and feel wrong, well all of me feels ill pretty fast in the heat. I always know when my husband turns the gauge up or down on the ac to save money, because I start to feel bad, go check and sure enough he changed it. Quote Link to comment Share on other sites More sharing options...
issie Posted April 20, 2012 Report Share Posted April 20, 2012 We're all just FAIR WEATHER people and need to move to an island somewhere and we'd all be happy. At least we'd all be in the boat together and can relate. LOL Issie Quote Link to comment Share on other sites More sharing options...
brethor9 Posted April 20, 2012 Report Share Posted April 20, 2012 my mast cell meds have really seemed to take the edge off of the temp issues....especially the massive internal cold spellsBren Quote Link to comment Share on other sites More sharing options...
Elegiamore Posted April 20, 2012 Report Share Posted April 20, 2012 Cold is the worst for me. I get Raynaud's just if a fan is blowing on me in an 80 degree room. SO embarrassing.My BP immediately goes up. And starting two years ago, the next step is coronary spasms and adrenal rushes. Just from the cold.We had three cold "spells" my SEastern area this year - one after Thanksgiving - had to be hospitalized. One a week or so later - THREE days in the hospital. And then in February - once I got cold when my ride didn't show up to take me to my saline IV and I drove/walked in the cold myself, my bp was 225/130 and I lost my vision.For every degree the temp lowers, there are hundreds and hundreds of extra heart attacks (read in it Reuters) because of vasoconstriction in the cold. And most of us don't exactly have correctly working arterial vasoconstriction in our bods.Yes Vandy stated in a newsletter on this website that there is no reason cold weather should bother any POTS patients. He should have asked me! Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted April 21, 2012 Report Share Posted April 21, 2012 When I first got sick, and my POTS was really bad, I used to put my feet directly into our fireplace, by the flame, to warm them, and it still didn't help. I know, stay out of the fire, but I'm okay, no burns.I also noticed, that first fall of my POTS, I couldn't sit at football games anymore. I would get so cold, I would go into major anxiety. The only way I could warm up and stop the anxiety was to get a hot bath. I'm still that way.My feet and hands turn blue a lot, with cold and after I eat. My vasculitis doctor said I have acrocyonosis, but he doesn't know why. My docs now think it has everything to do with autonomic dysfunction.I freeze in the freezer section of the grocery, too, and the last time I got a blast of cold air from an air conditioning unit a couple of weeks ago, I couldn't stop the shaking it caused and ended up having to take extra hydrocortisone because it sent me into an adrenal problem (I have Addison's).In other words, me and the cold aren't friends.Linda Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 21, 2012 Author Report Share Posted April 21, 2012 Acrocyanonsis is reported in POTS - usually posturally either from vasoconstriction as the problem or to compensate for stomach pooling or cerebral autoregulation abnormalities.It is also possible that the body has to amp up the NE levels to try and vasoconstrict in the face of circulating vasodilators like nitric oxide, etc. Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted April 21, 2012 Report Share Posted April 21, 2012 Hey, Ramakentesh,Could you say a bit more about the cerebral autoregulation abnormalities and the trying to amp up the NE levels...I've not heard these things before as way of explanation for why I'm going so cold and blue all the time anymore, even in a warm room, esp. after eating, so I'm very interested in what you know about these things, if you don't mind, of course. Thanks.Linda Quote Link to comment Share on other sites More sharing options...
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