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Sheila1366

Freezing Then Hot Then Freezing

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Heading into another flare....they seem to run together now. Between GP and dysautonomia ( is there a shorter way to write out dysatuonomia ?) . I am so tired, feel faint all the time, extremely weak, heart is going from wide open to slow, hypoglycemia is doing ok right now, still able to get in enough calories to keep it up. I am just going downhill fast, again and don't understand why. I go to Vandy July 29. I have so many questions. In the meantime, anyone know what is going on with me?

Thanks!! :unsure:

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Don't know what's gping on with you Sheila, just wanted to say hold on. I hope time will pass quickly and that Vandy will bring the answers you need. Oh and I often use "dys" instead of dysautonomia much shorter :)

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Thanks corina. GP is gastroparesis, sorry.

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Temperature dysregulation is, unfortunately, a symptom of dysautonomia. I am laying in my bed with a fleece lined coat on and a scarf around my neck as I write this to you. My hands are cold and stiff and my nose is freezing. But, I expect in about a half hour I will be throwing all the covers, the scarf, and the coat off to be back in my tshirt trying to cool off from an extreme hot flash. Once the hot flash settles, I'll get cold again because my skin will get clammy during the hot flash and that makes me get chilled once the hot flash passes. The best advice I have is always have layers of clothing around. Regulating the temp of my head and neck seems to be one of the keys to comfort for me.

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Sheila, hoping that you get some reprieve, and wish you strength until your appt in July.

Lol, I'm in bed under down comforter identical to nose being cold as Katybug states.

And i wear layers, from scarves to shirts + hoodie + wool.

It is part of autonomic nervous system regarding regulating body temp.

A few things I've noticed are, once am cold?? I start shivering and shake. Hands, feet and nose.

Also, if am not rested enough, or stressful situations can bring it on.

It could be 70 and I'm shivering like its 20 below.

Also, like Corina, I've referred to "dys" for shorter name.

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Sheila, I'm sorry you are feeling so bad. My body doesn't regulate temperature well either and I find wearing cotton clothing and using cotton blankets works better to keep from going to extremes. The synthetics just don't let your body breathe. Fleece will always make me feel worse. I layer my self and my bed. I still end up throwing layers on and off, but I don't feel as miserable with cotton. Just a thought. It may not work for everyone.

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Thanks everyone, great to not feel alone...not great that we are all suffering though. I am layered right now. And you are right Katybug about the clammy wet skin getting cold once we cool off. A cycle of back and forth. I do notice too that when I am going down hill again, which is more often than not it seems, I get super cold. Even teeth chattering cold. It can be 80 degrees out and if I am getting sick I will start to shiver. I had no idea that dsy. did all of this too. I am learning more and more each day. Like the importance of fluids. I get so dehydrated now. With the gastroparesis on top of this, the nausea is a big issue getting in fluids. But if I get dehydrated I will get really bad like this.

I am sitting here now with my gown on, sweatshirt on, a blanket over my legs...got the shivers. But in a few minutes will be sweating. I feel like a stripper all day long...husband loves it. :rolleyes:

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Have you been tested for Lyme Disease?

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hippychic,

Do you remember getting bitten by a tick? I was tested for Lyme with blood cultures, which were negative. I don't know if that is the standard method or the good method. I don't remember ever getting bitten by a tick. Can you tell the difference between a tick bite and a monster mosquito bite or a spider bite? I used to go up north every summer as a kid, could I have been bitten without realizing it was a tick? And finally, how is the infectious disease doc treating you for Lyme?

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This was me, all last night...I just had a tooth pulled on Friday, so of course other factors are at stake here. Hope you start feeling better. Prayers!

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Nope, not on a beta blocker. Wonder what the dr.'s at Vanderbilt will do with me in July.

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Sheila,

Like Hope I wear a lot of cotton clothes. Anything else with make my sore skin worse, and hotter and when I sweat I need the cotton to soak it up. Plus for me the cotton has to be very soft and good quality. I'm the crazy lady in the store who holds a t-shirt up to her neck (skin on my neck is the most sensitive) to see if it's soft enough.

I get so hot that now the weather has turned cold here in Australia --we are a week or two away from official start of winter - that I walk around the house with no heating and love that my feet and arms etc are cold. I love feeling cool when I sleep. UNLESS, I'm having one of those rare episodes when I can't get warm. It's like I have hypothermia or something. Freezing cold and can't warm up no matter how many bedclothes I put on myself etc. In my case it's as though my body decides after a few hours of freezing and shivering, shaking etc that it's done it long enough and then I go back to being too hot. My crazy, crazy body. I've experienced the same sort of thing post general anaesthesia. Same thing happened also after taking one tablet of an antibiotic 2 years ago, also. Other times I can find no direct cause and effect. But I always get overwarm again afterwards.

I can never tell anymore what the weather is really like. I'll be out in jeans and t-shirt while others will be in fleecy tops and coats etc.

blue

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Hi I just found this topic from May, because I am having major temperature regulation issues right now. It is the same pattern every night. I go to bed with the A/C set at 74. I have a fan blowing in the bedroom too. I go to bed feeling comfortable.

Here is the cycle: wake up extremely hot, like a hot flash and clammy sweaty, but not drenched in sweat or anything. Get up, stand in front of the fan until I am comfortable. Go back to bed with just the sheet over me. Wake up 15 minutes later feeling slightly chilled. Pull the blanket back over. Wake up 15 minutes later with my teeth chattering from the cold!!! Then the cycle repeats going back to extremely hot

I am up all night long with this. So, last night, when my chattering teeth woke me up, I took my temperature and it was 95.9. Is this dangerous? Or just part of POTS? This is a newer symptom for me, at least having it happen at night and keeping me up all night. So tired....

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