Meg.Limbach Posted September 2, 2011 Report Share Posted September 2, 2011 I have found I have a hard time controlling my body temperature. I know most have problems with the heat.. but when I get overheated, I start running a fever. If I get too cold (which is rather rare) then my body temp drops. Do any of you have this problem?? Also, for those who have used cooling vests.. which brand and type do you recommend? Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 2, 2011 Report Share Posted September 2, 2011 Hi Meg,My temp is starts out low at 97.1 so I don't know what the docs would consider a fever for me. But when I feel overheated which happens after a 15 minute dog walk on a 60 degree morning these days, I usually have to put ice packs around my neck and sometimes on my abdomin to get my body temp to feel normal again. It seems like getting the blood going to my brain cooled is the thing that gets me back to normal the fastest. If I try to ice/cool other parts of my body it takes much longer to feel cool. I haven't tried a vest. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted September 3, 2011 Report Share Posted September 3, 2011 I posted about the cooling vest. YOu can look for the thread. I have a Polar vest. Soft and so nice. Link for the thread is below... Quote Link to comment Share on other sites More sharing options...
Rachel Posted September 3, 2011 Report Share Posted September 3, 2011 I have difficulty regulating temperature. Just last spring I had to have a heating pad on my neck and face and ice packs on my feet all at the same time. Sometimes I will get autonomic fevers (fevers that have no apparent cause other than a messed up ANS). I feel comfortable if I am in cold temperatures, but a few hours after returning to a 70 degree apartment I will pay for it with chills that won't go away for several hours.I don't think the heat has ever given me a fever. If I am in the heat for too long my legs and feet turn bright red, blood pools rapidly, I get sick and nauseated, weak and tired, and sometimes faint. I recently fainted at 75 degrees while reclined. You know your temperature regulator is messed up when... I do my best to keep myself in a climate controlled environment at all times. I need to stay in temperatures between 68-72 degrees. If I am in anything else for more than a few minutes then I pay for it later. If I have to go out in the heat to get to the car then I always wear a cooling vest. I bundle up in the winter to stay warm during the 15 second walk to the car.Ocassionally I will be in temperatures of abotu 75 degrees for an hour or two (never in the sun, though). For example, I like to go to church whenever I can, but the church is usually about 75 degrees in the summer. Georgian's like it hot; I just don't understand! For times like that I always, always, always wear my cooling vest and sometimes my neck wrap too.I have a cooling vest and a cooling neck wrap from Cool Sport. I really like them both. The vest was expensive, but it was well worth the investment. This is the 4th summer I have used it, and I haven't had to replace the ice packs yet.About the cooling vests - You are supposed to put them only in the refrigerator so that you don't damage your skin from ice frozen bellow 32 degrees. Refrigerator temp is great if the outside temperature is 80 or less. But I have found that a cooling vest out of the fridge doesn't do anything for me once the temperature is above 80. I keep both my neck wrap and vest in the freezer when it is in the 80s and 90s.Cool Sport also makes warming vests. I was going to order one for this coming winter, but now that we are back in Georgia I don't think I'll need it. It rarely gets cold her, which is sad for me. I miss snow and cold! I would gladly buy a warming vest so that I could go sit out in the snow again.I hope these ramblings have helped a bit, and I hope that you can find a way to help control your body temperatures. It's hard work!Rachel Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted September 3, 2011 Report Share Posted September 3, 2011 My vest does not go into the freezer or fridge. Just the ice packs. Each vest is different so find the one that works best for you.Something else wonderful!!!! AC personal fan. I have one, use it when I go out since the car takes a while to cool. Also, great for a doc. office when you get hot, even if the office is cool.I also have a darling fan that sits up that I use at restaurants etc. I can't find that link at Amazon. I need to get pics of them. LOTS of great things to help us out there.http://www.amazon.com/Small-Fan-Mini-Air-Conditioner-batteries/dp/B003KCT4UC/ref=sr_1_13?ie=UTF8&qid=1315065155&sr=8-13 Quote Link to comment Share on other sites More sharing options...
GingerA Posted September 3, 2011 Report Share Posted September 3, 2011 Rachel, Do you have trouble with cold tempatures too? I have severe pains in cold tempatures but didn't have a diagnosis until this year so all the treatments are new to me. I live in Georgia too but during the winter months when the wind gets bad is when I have the most trouble. I would love to find a way to fight this feeling. Quote Link to comment Share on other sites More sharing options...
Rachel Posted September 4, 2011 Report Share Posted September 4, 2011 I should clarify about my vest. It doesn't have to go in the freezer/refrigerator. The ice packs come out and technically that is what you put in the refrigerator. I just find it eaasier to leave my ice packs in the vest and put the whole thing in the freezer. It saves some energy for me.Ginger, I do have some trouble with cold temperatures. Cold doesn't cause me any pain, however. My body uses up a lot of energy to stay warm, and that makes me more tired. A few hours after being in the cold (for an extended time) I will become chilled to the bone, even though back indoors. I put use heating pads in bed when that happens.Thankfully, I do have a lot of super warm winter gear for when I need to go out in the winter. I used to live in Alaska, so I have boots that are rated for 50 degrees below zero, a very warm coat, thick wool pants, etc. I don't think I've ever had to wear any of them in Georgia, but I did use them a few times in Kentucky in the winter.Ginger, you said that you have pain when you get cold. Is the pain mostly in your extremities? And do your fingers turn white and/or blue? If so, you might want to look into Raynauds. There are several members here on DINET who have both dysautonomia and Raynauds. I hope you can find something that helps with the cold and pain.Rachel Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted September 4, 2011 Report Share Posted September 4, 2011 Oh, I see Rachel. Some do have to be kept there. I see what you mean. Quote Link to comment Share on other sites More sharing options...
corina Posted September 4, 2011 Report Share Posted September 4, 2011 my main temperature problems were being/getting really cold. my cardio thought that it was very likely i had raynauds (had the symptoms rachel described). mestinon helped me stay warm and really was a blessing to me!corina Quote Link to comment Share on other sites More sharing options...
GingerA Posted September 4, 2011 Report Share Posted September 4, 2011 Rachel, I do get severe pains in my hands and feet that sometimes go up my legs when I get too cold. Its like ice inside my body and yes they do turn white then blue and then burn when they turn red as I warm up. Years ago a doc mentioned Raynaud's but didn't know much about it. Maybe I need to check into it again. What kind of doc would I see? No one here seems to know anything about dysautonomia here. Quote Link to comment Share on other sites More sharing options...
Rachel Posted September 5, 2011 Report Share Posted September 5, 2011 Ginger,I think rheumatologists are the ones who usually know the most about Raynaud's. These might be helpful places to start if you want to read more information regarding Raynaud's disease:http://www.mayoclinic.com/health/raynauds-disease/DS00433http://www.raynauds.org/index.phpRachel Quote Link to comment Share on other sites More sharing options...
Meg.Limbach Posted September 6, 2011 Author Report Share Posted September 6, 2011 thanks everybody! I will def be looking into these options =) Quote Link to comment Share on other sites More sharing options...
Maiysa Posted April 5, 2012 Report Share Posted April 5, 2012 Thanks for posting this information Rachael. I didn't know that cooling vests are available. That's wonderful news since I live in the desert and the summers are very difficult for me. I'm constantly finding ways to rig ice packs around myself since I've found this is very helpful. Thanks again. Good Health to you!!! Quote Link to comment Share on other sites More sharing options...
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