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SueOKray

Does anyone suffer from feelings of burning up to freezing?

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I have MVP/Dysautonomia and a dear friend seems to possibly have Dysautonomia.  We are seeking help and it's taking a long time to get to the right place.  We are waiting for his physician to get him a referral to the MVP clinic in Birmingham.  Right now his main and most debilitating symptom is his body just doesn't seem to be able to regulate his temperature.  He will feel hot to burning up (his face turns from pink to beet red) and then a few seconds later he is chilled to the bone and freezing.  This can go on all day switching from hot to cold in a matter of seconds.  I have never had this symptom and thought maybe it would give him peace of mind knowing someone else has this or has dealt with it.  Also, any ideas on how to stop this from happening?  Yesterday, he was hot on his arms from wrist to elbows, his groin and his head.  A few seconds later it would go to a normal feeling and then his chest would be freezing and so on and so forth.  It is really getting to him; it interferes with his ability to get a good nights sleep.  He lays with a cold cloth on his head and cool packs by his legs.  He wakes up in the morning feeling like he is on fire.  Then, he gets out of bed and is immediately freezing.  His actual body temperature is normally in the low 97's.  He has anxiety and this body temperature dysregulation is only adding to it.  Thanks much for you input!

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I get very drastic temperature fluctuations too, similar to what your friend describes; freezing cold (lips blue, extremities blue, entire body shivers, cold sweats) and also very hot (face and neck go bright red, feel like my skin is burning, etc)

I don’t really have a solution for you, I’m sorry, it’s just always something I’ve dealt with. I keep cold water available at all times and cool cloths (if I can) in case of those “hot flashes” and also have tea, mittens and warm packs available for the “cold flashes”. I don’t have anxiety, but I can see how this symptom would add to it! Hopefully he finds some relief and can see that doctor soon... Until then let him know he’s not alone!!

Best wishes. 

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I am glad he is being referred to a specialist - personally I would see a neurologist. Good luck!!!

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YES! I've had this for years off and on but I've had it every day night and day since July of 2018. It's been steadily worse to the point of cycling every 20 minutes some days. The normal is every hour or so. It's more often burning hot with extreme sweating (even right under a cool pack). But often there's what is described in the texts as "overshoot" which then causes freezing cold. I have an electric blanket and two of those big cool gel packs for icing your back by me at all times. I dress very light and add bed layers or easily removable outer clothes. I too loose sleep and feel exhausted over this. I'm up all night trying to cycle through the hot and cold solutions for my cycles. But to some extent, it's becoming a routine, like getting up a lot to go to the bathroom.

I've read on this and as far as I can tell it's a sign/symptom(?) of dysautonomia -- the inability to regulate body temperature. While I feel pretty desperate about it at times, I don' t think it's taken very seriously in the medical field, although I can't recall having brought it in as a primary complaint and having it blown off. I'm not sure anything can be done specifically about it. But it does help to know others have it. And it does help to have a decent remedy. So tell your friend, yeah, I feel his pain. Good luck to him, and if he hears anything, I'd love to know what they say. 

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Me too-and like clockwork, I wake up at 2am blazing hot when it's so cold I was almost shivering when I went to bed. Nothing helps and I'm awake for a good hour each night trying to cool down. My temp is about 97.2 as well.

 

Mestinon seems to help somewhat in regulating my temperature, but not enough.

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Thermoregulation (your body's internal temperature control) is an autonomic system and can fritz out with dysautonomia.

I have a hard time with temperature, but typically only warmer temps. My buddy just can't cool down. I started having an "attack" once in a restaurant because it was a little warm. My body felt like the temperature was fine but I started to have heat stroke symptoms. I rushed outside where it was cooler and was instantly fine.

I have to be very aware of temperature. My dysautonomia specialist said it was common -- especially in those with nerve damage like myself.

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I get hot extremely easy now to where I start shaking and feeling nauseated. Sometimes I wake out of my sleep with a rush of heat as If my face is near a flame and my forehead starts sweating. Then I'll turn my box fan on me. I have an a/c window unit on while heat is on coming through the vents. Just the feeling of hot air makes me sick. 

I remember driving in 30 degree weather and I couldn't turn the heat on. I wanted to but it makes me feel so bad. Right now I'm feeling ill because my wife is cooking in the kitchen and it's warm. 

 

The other night I was sitting in my car talking to my friend on the phone. I was battling with me wanting heat on and off. I had it on and after 20 mins of turning it on and off, I felt like I was going to faint. I got off the phone and went to my bed immediately.

 

My body temp can go from hot to cold in an instant. Not as extreme as the original posters friend. But something definitely isn't right. And when you have a family of 4, and they are all female, they don't understand my struggle. They get cold easy. It's just difficult all around. Crappy disease.

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Thanks much to all of you who have replied!  I am sorry you have to put up with this discomfort as my friend, does.  He said he doesn't feel quite so alone now.   This is a symptom that I have really not experienced, thankfully!  I have a very low tolerance for heat and cold temps; my comfort zone is between high of 75 to low of 50...anything warmer or colder isn't good for me. 

He is 88 and this is really  hard on him.  He had a total knee replacement surgery November of 2018 and things really started to escalate since then.  They had to give him 3 different types of anesthesia and I think this may be the culprit for a bad flare up!

Another thing I have noticed with him is when he is even just a bit constipated his neck hurts bad and after a B.M. he doesn't feel well; very run down and tired.  If he strains the least bit he gets light headed.  I wonder if his Vagus Nerve is also involved!  

He is seeing an Neurologist and we are waiting on results of some quite extensive blood tests and a 24 hour urine collection.  The Neurologist is also looking for a possible autoimmune disease.  I will check his latest CBC results to see if his thyroid is functioning ok!

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