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Hot Hands & Feet During Sleep And Cold While Awake :/


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#1 jjb

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Posted 10 July 2009 - 08:12 AM

Hi all.
Having mild Raynauds, I have always tended to have cold hands & feet.
I often wear socks to bed. I just posted in another thread that my hands and feet get cold when they pool.

But it is becoming very bothersome and really interfering with sleep is that my hands and feet get extremely hot during sleep. It can be very uncomfortable. I keep my room very cold because of it.
I have a fan blowing on me at the top of my bed and another fan blowing on my feet.
Sometimes I get up in the middle of the night to put ice packs on my feet.

This began five years ago after my preg with Ava.

Now at our eval with aut neuro Novak, he did say he thinks we have aut neuropathy with distal sweating issues.
Ava did not sweat at all. I am not sure what my results were on that (I see him in a couple of weeks).
But I know my hands and feet brarely sweat anymore. My feet only as a small area on the top and in between my toes that sweat.

Do you think this is the problem?
Besides being uncomfortable, is there any other significance to this?


Thanks,

#2 thankful

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Posted 10 July 2009 - 10:12 AM

I have these problems too, exactly as you described. As my signature says, one of my first POTS symptoms was pernio/chronic frostbite. But during sleep, my hands and feet get hot and red. They also get hot and red with any type of activity, like walking, and I've even been diagnosed with erythromelalgia because they burn painfully. But stress, cold, or sometimes activity can make my hands and feet cold, bluish and I can get chilblains. The tips of my toes turn purple at these times. But at night the burning makes it so I usually have to sleep with my feet out from under the covers because they are so hot and sensitive. Since then, the burning has spread to my face, and I get hot, red and burned skin there too. When my hands and feet are cold, my torso and face burns. I honestly think that this is as a result of the adrenaline my body produces due to my pooling. The adrenaline clamps down the arteries in my periphery, directing it toward my core. Then during sleep, the adrenaline subsides somewhat and my blood vessels open up again only too much, causing the red, hot burning feet and hands.

I've been to Mayo and they say I sweat fine, but did say I have small fiber neuropathy. One help for my burning feet at night is to take a benadryl. It actually makes the burning a bit less and helps me sleep. Otherwise, I have to take an occasional pain med when the burning gets too bad. Mayo also said I produce higher levels of norepinephrine in response to orthostatic stress.

Don't you think it's so odd that we can pool and constrict at the same time? Often I'll look at my palms (and the soles of my feet) and they'll be mottled with red or purple webbing and white areas in between. It's called livedo reticularis and it's basically when some of your blood vessels are overdilated but some are constricted. I asked Mayo about this constricting/dilation and wondered which parts of my vasculature in particular (arteries, veins, arterioles, capillaries, etc) has which problem. He said it's hard to tell where one problems ends and another begins... it's part of what makes this disease so hard to treat!

#3 jjb

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Posted 10 July 2009 - 10:25 AM

Thanks for the reply. The hot feeling I get does not so much feel like the skin burning, just heat from the inside.
I do however get the skin burning thing at other times as well as eye burning (as if I have bleach in them).

Interesting about the benedryl. I could only tolerate it once in a while as it tend to make me restless as well as very myoclonusy. I do take it at time though for nausea and allergies. Next time I take it, I will have to see if it makes a difference with the heat problem.

I also get the mottling often. Ever get the niacin flush? Well I get a very exaggerated flush from head to toe along with the mottling all over. And it hurts like heck!

Can you tell me more about your elevation in catacholimines? What does this mean exactly?


But at night the burning makes it so I usually have to sleep with my feet out from under the covers because they are so hot and sensitive. Since then, the burning has spread to my face, and I get hot, red and burned skin there too. When my hands and feet are cold, my torso and face burns. I honestly think that this is as a result of the adrenaline my body produces due to my pooling. The adrenaline clamps down the arteries in my periphery, directing it toward my core. Then during sleep, the adrenaline subsides somewhat and my blood vessels open up again only too much, causing the red, hot burning feet and hands.

... One help for my burning feet at night is to take a benadryl. ...

Often I'll look at my palms (and the soles of my feet) and they'll be mottled with red or purple webbing and white areas in between.



#4 thankful

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Posted 10 July 2009 - 11:07 AM

I also get the mottling often. Ever get the niacin flush? Well I get a very exaggerated flush from head to toe along with the mottling all over. And it hurts like heck!

Can you tell me more about your elevation in catacholimines? What does this mean exactly?


I don't know what a niacin flush is, but I get flushing of my torso and head in response to any stress, heat, talking, etc. My BP goes up significantly during these flushes also. When I was at Mayo, they drew my catecholamines lying and after 10 minutes of standing. My epi and dopamine levels were normal, but norepi was 250's lying and 1089 standing. So Mayo neuro described me as having a mildly hyperadrenergic response to pooling. I get the burning on the inside too. Funny thing is I'll check my temp during these times and it will be low to low-normal (96 to 98F). The only thing I know that helps is rest.