all4family Posted April 15, 2009 Report Share Posted April 15, 2009 I know that a lot of people have trouble with being too hot, but I seem to have a little less of a sense of hot. The first time I realised it was when I was being tested for dysautonomia, and the doctor put a thing on my foot, and said before he did this should feel hot. So he did my left foot, and I nodded my head in agreement, then he moved it to my left foot, and I began to nod my head as I was just expecting it to be hot, but I didn't feel anything. He had to keep it there for probably around 50 seconds before I even began to feel anything. I have also gotten 2 really bad burns from my heating pad, and I didn't even feel that it was burning until the skin was coming off. Then yesterday I was touching a pot, that was on the stove to see if it was getting hot yet, and I said no it's not ready, then my husband touched it and said thats hot, can't you feel that? Does anyone know is this a POTS thing? Suzy Quote Link to comment Share on other sites More sharing options...
cvincent Posted April 15, 2009 Report Share Posted April 15, 2009 I know that a lot of people have trouble with being too hot, but I seem to have a little less of a sense of hot. The first time I realised it was when I was being tested for dysautonomia, and the doctor put a thing on my foot, and said before he did this should feel hot. So he did my left foot, and I nodded my head in agreement, then he moved it to my left foot, and I began to nod my head as I was just expecting it to be hot, but I didn't feel anything. He had to keep it there for probably around 50 seconds before I even began to feel anything. I have also gotten 2 really bad burns from my heating pad, and I didn't even feel that it was burning until the skin was coming off. Then yesterday I was touching a pot, that was on the stove to see if it was getting hot yet, and I said no it's not ready, then my husband touched it and said thats hot, can't you feel that? Does anyone know is this a POTS thing? SuzySuzy,Since I became sick, especially lately, I've noticed that it takes me longer to realize how hot things are. I usually can't feel how hot things are untill they are hurting my hands. I have to be careful whenever I'm taking something out of the microwave or when I'm cooking. Just yesterday I had my moms straightener turned on and I touched it to see if it was hot yet. I couldn't feel the heat untill it started almost burning my fingers. Also, whenever I take a shower I have to have the water turned almost as hot as it will go. I can hardly feel the heat from the water, and when I can it doesn't feel hot enough. Maybe all this is related to nerve damage. Who knows.Candace Quote Link to comment Share on other sites More sharing options...
Guest brianala Posted April 15, 2009 Report Share Posted April 15, 2009 Yeah, I've been almost burned by my electric blanket. I don't think it gets hot enough to do a lot of damage, but my feet were red all the next day. I get so cold, and it takes forever for me to warm up. I love taking really hot showers, almost to the point of scalding because it's the only way I can warm up. When it's really cold out and I step in my usual temperature hot shower, my feet will start to hurt because of the temperature difference. Quote Link to comment Share on other sites More sharing options...
all4family Posted April 15, 2009 Author Report Share Posted April 15, 2009 Hi Candace, yes I have that in the shower too. Which is weird, because as much as I want to feel the heat a little I end up overheating myself. It's kind of scarey, because I don't want to cause damage to myself, but just don't really feel it for a while. Hi Brianala, I do that too. I take showers so hot and my skin ends up really red. The worse part is, is that I end up feeling sick from the shower. But I really don't think it's that hot when I am in it!Thank you guys for sharing. It sure helps to know I'm not the only one.Suzy Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 15, 2009 Report Share Posted April 15, 2009 Hi Suzy~I have the same thing in the shower/tub. I love hot water, and a lot of times once I get a chill it's the only way to warm myself up. The water feels hot to me, but not too hot, so I'm always kind of surprised to see that my body is bright red when I get out. My boyfriend is appalled, and I know we're not supposed to use water that's too hot, but I get too cold if I use cooler water, and then can't warm up again! A nice little cycle...I also love to sit in the sun, and am almost always cold, especially my feet, fingers and nose. I guess it's a good thing I live in Arizona (originally from sub-arctic Iowa), but the heat in the summer gets intolerable, too. If anyone knows of a place to live where the temp is about 80 degrees every day of the year, and it's sunny most of the time - pass it on!Ciao~jana Quote Link to comment Share on other sites More sharing options...
all4family Posted April 15, 2009 Author Report Share Posted April 15, 2009 Hi Jana,Yes it is quite a strange little cycle. I'm always cold too. And want to warm up too. And like you said I just can't seem to warm up. But then when I do I end up feeling worse! Half the time I have the heaters running, and the windows open!! What a nut!That's so funny that you mention that about somewhere to live that's always around 80 degrees. I lived in Hawaii for 3 years, and they were 3 wonderful years! (except my fear of flying, and being on an island I can only fly off of, with a hurricane coming, but we won't open that ugly bag of worms!!) I wasn't "sick" sick then, but I had had strange symptoms on and off my whole life that I can now look back on, and the funny thing is that I don't remember having many of those problems there. Sooooo...if you want a place like that, and you don't mind being on an island 44 miles long and 30 miles wide, (Oahu) and when the hurricane warnings hit you read all about it, and it says to go 50 miles inland Oh and milk when I was there was 8.00 a gallon, and this was before 2001. then pack your boxes, and Aloha!!! But maybe California!!! Ha Ha Ha !! Thanks for sharing that. Oh...and just wanted to add in to scoot over, because I live in a colder part of AZ, and would like to warm up a bit!!! Till I get sick that is!! Suzy Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 16, 2009 Report Share Posted April 16, 2009 Hi,What you describe is decreased temperature sensation. Temperature sensation is conducted by small nerve fibers, and when it is decreased it is likely due to a small fiber neuropathy. Many of us on here have small fiber neuropathy and the associated symptoms, including myself. I too have decreased temperature sensation and can sometimes touch things I know are hot, but I do not feel any heat. When you were tested for POTS/Dysautonomia did you have a QSART test? This is the typical test for small fiber neuropathy. If it shows decreased nerve activity it indicates small fiber neuropathy. The small fiber nerves control the ANS and some sensory input (but not all).Also, safety is a factor with this... Make sure to be careful, and be proactive to avoid any issues. With this you have to make sure you don't step on something unknowingly etc... I had a long nail (hardware) go all the way through my tennis shoe and was poking me slightly (barely) in my foot... I never felt it. I didn't know about it until I saw it. Who knows how long it was there??? Oww! (I do have updated tetnus shots, and I didn't see anything on my foot.)Hope that helps! Quote Link to comment Share on other sites More sharing options...
jump Posted April 16, 2009 Report Share Posted April 16, 2009 Well, I think there might be a difference between BEING hot, and noticing that objects are hot.I don't do well when I AM hot -- like if I have to sit in the sun, or if I get overheated on a hot day. This causes POTS flare-ups for me.But most of the time I'm freakishly cold and I can't get warm -- and I find I can't really tell when objects are really hot. I love having hot things on me because I'm so very cold, and sometimes they're so hot they burn my skin but I still feel cold. Just the other day, I had these heating mittens on, and I had them turned waaay up high and I was LOVING it -- it didn't feel too hot, in fact, it felt barely hot enough. But when I took my hands out my skin was bright red and it was obviously "too hot" for my skin. But I didn't know it until I looked at my skin.For me, it's definitely related to my hands and feet being so cold all the time -- on the rare occasions that my hands are a normal temperature, I feel like I can gage the temperature of objects much more accurately. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 16, 2009 Report Share Posted April 16, 2009 Hi,Yes, I was replying to the part of the original post about not being able to feel things that are hot, and not on temperature regulation/sensitivity issues. Thanks! Quote Link to comment Share on other sites More sharing options...
pearsjon Posted April 16, 2009 Report Share Posted April 16, 2009 forgive me only read topic not posts. but i have a waxing and waning dullness to sensation in my hands and arms. sometimes i can feel it and sometimes i can't. i have burned myself on the oven and not realized it for days, when it starts hurting or i notice the burn mark. i asked about this not too long back myself. i have no idea why it happens. and other times it is almost as if i feel too much ( more than i should). Quote Link to comment Share on other sites More sharing options...
mae Posted April 18, 2009 Report Share Posted April 18, 2009 Hi,I know the feelings, I always take hot baths (no showers can't balance) and it makes me feel worse but it makes my skin look normal not blotchy until I stand and dry then I start turning purple in the legs and feet and toes swell . Anyway I was posting because I recently seen on a TV program about delayed thinking caused by excess adrenaline , so when I read this it all made more sense. autonomic dysfunction causes adrenaline to kinda go hay wire which makes perfectly good sense to have delayed responses to feelings. Maybe I'm caught in my own thought .... or someone knows what I'm saying sorry I didn't get much sleep for a few days Mae Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted April 18, 2009 Report Share Posted April 18, 2009 Hi,Add me to the mix as well. My symptoms increase if I am in a warm room or even near heat, like a burner on in the kitchen. I can not tolerate heat or warmth in the air at all and have problems with the sun too. However, I can pick up dishes directly from the stove or wash my hands in water so hot that it turns my hands bright red and not even notice. On several occasions, my mom has seen me washing my hands and said, "aren't you burning yourself? your hands are turning bright red!" I noticed this began happening a few years ago once the autonomic dysfunction hit. Interesting that others have had similar experiences. ~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
all4family Posted April 22, 2009 Author Report Share Posted April 22, 2009 Hi, sorry it took me so long to reply. I had one computer in getting fixed, then my other one started breaking down so I couldn't use it. AJW, yes temperature sensation sounds like exactly what it is. I did have the QSART, and they didn't say there was anything wrong, so I guess that test was fine. This symptom seems to come and go in intensity (like all the other symptoms) All I can say about the nail is OUCH! I am so glad you had your tetnus shot. Yes I feel that safety is the biggest issue here. I have burnt myself on my heating pad twice, and I didn't even feel it untill the skin was already falling off, and hanging. Jump, I really get what you are saying about the difference between being hot an feeling hot. When I get warm like what you are descrbing with your mittens I love it too. I also get the "normal" feeling sometimes, so it is weird and I never know what to expect. But I am usually freakishly cold like you describe. When I get warm enough to enjoy it I am usually feeling sick from the heat ! Thank you for sharing that. firewoman, that is exactly what I mean! The waxing and waining, and sometimes being too sensitive!! I am so glad I am not alone with that. Thanks for sharing that.Hi Mae, well if your not making sense, then I have no sense, because I understand perfectly. And what your saying makes perfect sense to me! Because I do eventually feel it. Maybe when it is no sensitivity it is a delayed response, and when it is too sensitive it is a hyper response....just to add to your thoughts. Thanks for sharing that. It helps a lot.Hi broken shell, thank you for sharing that!! When I was doing Easter eggs with my kids I was reaching in the water, to get eggs, and one of my kids went to do the same thing and they said ouch mom thats hot. How can you touch that. Can't tell you how relieving it is just to know that this isn't just a weird me thing!Thank you all for sharing....it sure does help with this crazy disease that they really don't know the answers to! Suzy Quote Link to comment Share on other sites More sharing options...
pearsjon Posted April 22, 2009 Report Share Posted April 22, 2009 no, thank you suzy. as i have often felt this was just me, myself and i. i made bratwurst the other night and turned them w/my hands. totally freks my 8 yr old out and then she tried which scared me. and then that brought a whole host of ?'s from her, i can hardly answer. except just cause mommy can do it doesn't mean you can.and mae, you made perfect sense to me ,too. i have delayed pots so why not delayed sensation. another thing to ask dys doc about. you know he has to love it when i come in. Quote Link to comment Share on other sites More sharing options...
MelissaCrystal Posted April 22, 2009 Report Share Posted April 22, 2009 I definitely don't have delayed sensation, I have less sensation when it comes to feeling hot things. When the air is hot, I know because I don't feel good. But when my hot-chocolate is hot, I drink it with no problem and then realize my gums are swelling up and falling apart. =( I might just have sensitive gums, but my boyfriend can't EVER eat my cooking when I eat it because he said it is insanely hot. He has no clue how I can scarf down just-made food like I do. Quote Link to comment Share on other sites More sharing options...
all4family Posted April 23, 2009 Author Report Share Posted April 23, 2009 Hi firewoman, good thing we have this place so we don't feel so alone with these crazy things huh? Let me know if you find out any useful information from your doctor! (I can't seem to keep a good one, I think I scare them!!)Hi Mellisa, ouch! Do you feel the pain later? I hate when I burn my mouth! Thank you for sharing that.Suzy Quote Link to comment Share on other sites More sharing options...
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