Christy_D Posted January 28, 2012 Report Share Posted January 28, 2012 My son occasionally will get a very low temperature, 93 to 95 degrees. His temperature right now is 94 degrees. When this happens, he also says he is warm or hot even though to the touch he is not even warm. To bring his temperature back up, we bundle him up in blankets, and monitor his temp. We had taken him to the ER once and that was all they could do for him, so no more ER unless we can't get it back up.My question is....Does anyone else have their temperature drop this low? and do you feel cold or hot or normal when your temperature does this? We can't figure out why he feels hot when it is clearly not the case. Quote Link to comment Share on other sites More sharing options...
roxie Posted January 28, 2012 Report Share Posted January 28, 2012 I don't know how low my actual body temp drops. Im assuming the temp in your mouth is different than the one on your hand in biofeedback.But people always tell me I'm cold to the touch & I personally do not feel cold. I've always figured it's a dysautonomia thing Quote Link to comment Share on other sites More sharing options...
Wendy C. Posted January 29, 2012 Report Share Posted January 29, 2012 I have that happen, too. I will feel hot and think I am coming down with a virus and getting a fever, so I'll check my temperature. It will be around 95-96 degrees maximum and others will say that my forehead feels cool. I've checked my temp on days when I am feeling good and it is still in the 95-96 range. The feeling-like-I-have-a-fever-hot is different than the overheated/flushed-hot though. Strange... Quote Link to comment Share on other sites More sharing options...
songcanary Posted January 29, 2012 Report Share Posted January 29, 2012 Whenever my temp got that low, I always felt shaking cold. It happened nearly every day before I got diagnosed. I don't know why your son would feel warm with a temp like that. I wish I could explain it. Quote Link to comment Share on other sites More sharing options...
anna Posted January 29, 2012 Report Share Posted January 29, 2012 This happens to my children as well, our GP is trying to find out why this happens!! We will let you know if we get anywhere with this ok! Quote Link to comment Share on other sites More sharing options...
Trach Posted January 30, 2012 Report Share Posted January 30, 2012 My daughter and I both run in the 96 degree range - sometimes a little higher or lower. When my daughter is in a flare, her temp stays low but she flushes and is always burning up, even if the room temp is in the 50's. Although my daughter's doctor was concerned at first, she said her temperature dysregulation was part of her dysautonomia. One thing that was important, we now know that a 98-99 degree temperature is a high fever and is not considered low grade - something that was hard to explain to hospital staff whenever our doctor was out of town. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 30, 2012 Report Share Posted January 30, 2012 My temp is always low all morning long and this is when I feel terrible. Mid afternoon my temp warms up and my pots improves as well. I def think it is related to the pots Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted January 30, 2012 Report Share Posted January 30, 2012 I agree with Trach who said temperature dysregulation is part of the dysautonomia. When I first got sick my temp was always around 94-95. I would usually get chills though and needed to be covered in warm blankets as well. I think it switches though between chills and becoming so hot and flushing. I think part of this is because the body cannot warm itself or cool itself properly and might be why your son feels warm. I also agree with the person who said that you can have a fever even if your body temp is around normal 97-98. I was feeling so sick one day and my temp was only 98 and I did not know what was making me feel so horrible. My dad thought I might have a fever from my other symptoms and after he gave me tylenol, I felt incredible relief. I did not think I could have a fever with a temp so low but that was def what it was. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 30, 2012 Author Report Share Posted January 30, 2012 Thanks for all the replies! I understand the temperature regulation being tied to the dysautonomia, but I just don't get why he thinks he is warm or hot. I guess that too is a wrong signal being sent to his brain.Christy Quote Link to comment Share on other sites More sharing options...
kclynn Posted January 30, 2012 Report Share Posted January 30, 2012 I can't quite figure out why but what keeps coming into my mind is how when people are totally hypothermic they sometimes undress themselves. I looked into it further and found this article (it is geared toward survivalists but hey). It does explain the phenominon very well. Whether it applies to your son, I don't know.Ooops forgot the link http://www.survivaltopics.com/survival/paradoxical-undressingMy son will say he is freezing but his skin is burning and and flushed.Also, you know you can fill tube socks with rice and put them in the microwave and warm them. You could lay them around his body that way and then remove them one at a time. They stay warm a really long time. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 30, 2012 Author Report Share Posted January 30, 2012 Good idea, I have rice packs that I chill for headaches I could use to warm him. I actually sent one of our dogs in to sleep with him..we call that dog "the furnace" because he puts off so much heat and he likes to snuggle under the blankets.I'll read the article on it this evening.Thanks. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 30, 2012 Report Share Posted January 30, 2012 When our POTS is busy putting out too much adrenaline, keep this in mind. Adrenaline causes blood circulation to be diverted away from the skin into the main vessels for that "fight or flight". I am a person that is HOT daily, but internally. I can run my hot hand down my arm and the skin feels cool, yet I feel like lava inside. BTW, my temp in the hospital was 95.5F and I had requested a fan and had it blowing on me! Since when is a hospital not cold?! That's when I knew it really was just me. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 31, 2012 Report Share Posted January 31, 2012 When our POTS is busy putting out too much adrenaline, keep this in mind. Adrenaline causes blood circulation to be diverted away from the skin into the main vessels for that "fight or flight". I am a person that is HOT daily, but internally. I can run my hot hand down my arm and the skin feels cool, yet I feel like lava inside. BTW, my temp in the hospital was 95.5F and I had requested a fan and had it blowing on me! Since when is a hospital not cold?! That's when I knew it really was just me.Sue I have the same experience. It's like I'm burning up in my core- my chest and upper back will be hot and flushed, but everywhere else I'm freezing and my temp will be low. It's the weirdest thing Quote Link to comment Share on other sites More sharing options...
jenglynn Posted February 1, 2012 Report Share Posted February 1, 2012 Yep.. I have the same "issue". My normal temp is usually between 95-97 degrees. I vary though... Sometimes I feel so flushed and feverish yet my temp is still in that low range. Other times I'm freezing cold and can't warm up. They told me at Mayo that they believed that whatever aggressive antibody I have that causes my auto immune deficiency has "destroyed" my body's ability to actually have a fever. I'm not sure if that's the case or if I do have a "fever" it will not seem like a typical fever to providers. I've told this story before, but last year I got appendicitis and went in the ER and my temp was around 97. Even though I had all the signs they just couldnt believe it was my appendix because I had no fever. But my labs showed a very high white count so they did exploratory surgery- sure enough- acute appendicitis about 80% or closer to rupture. Temp never got above 97.2 but the whole time I felt like I was burning up, flushed, chills, all of the typical signs of a high fever.I really think this is an issue that needs to be addressed further. Our body being able to have a fever is huge especially to those of us with immune issues but I can never get any doctor to take me seriously when I bring it up. My parents have told me they never remember me having a fever over anything more than 99 in my entire childhood. Jen Quote Link to comment Share on other sites More sharing options...
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