Cold As In Freezing Cold Issues

[katieindixie]

I wanted to know if any of you have any of these things and if so have you or your physicians figured them out yet?

Freezing cold face, cold nose

Cold buttocks and cold thighs

cold biceps and triceps

I literally feel at times that my face is in a bucket of ice water...... this isn't like Raynauds though...... there is no discoloration and my hands and feet can be warm when these areas are freezing cold........

anyone? anyone?

Appreciate any help or input. I've had my thyroid tested and while I can be the lowest or norm or the highest of norm I've never been out of normal range. I do have Raynaud's, but this is different. Just hoping that someone else out there has experienced this and knows what it is.

Thanks!

Katie

HyperPots

CVID

UCTD

APLS

[ophelialit]

Hey there, katieindixie....

When these areas are cold, are they ACTUALLY cold (as in cold to the touch to you or others) or do they just FEEL cold (but are normal temperature to the touch)? Hope that makes sense....I have episodes where my legs and arms feel ice cold, but when I touch them, they're completely normal....I think it's a wonky ANS nerve thing, but if they're ACTUALLY cold, well....it's probably still some wonky ANS nerve thing....

[tinkerbella]

I'm freezing cold always!!!! Even colder infusing these cold fluids. Burrrr ~ wear gloves, socks, scarfs, and heavy sweaters to bed. : )

[tinkerbella]

I saw they sell chili pads and wish I could afford one. They heat for the winter and cool

For the summer. I think it is part of our dysregulation of body temperature. : ( I need to get lucky and win the lottery : )

[Katybug]

Temperature dysregulation is a part of dysautonomia and there is nothing to do for it except practical suggestions we can give you. My list is: drink warm liquids (decaf coffee, tea, hot choco, soup), take warm showers/baths (I run warm water over my hands for a few minutes when shower/bath isn't practical), dress in layers, shapewear tends to be warming plus gives compression for those of us that need it, I have to wear a scarf around my neck and head sometimes as any draft causes me to get cold. Hopefully others will pipe in with ideas I forgot.

[bellgirl]

Hi Katie,

I have the same, but my hands and feet are cold, too. I believe it is the dysfunction of the hypothalmus in the brain to properly regulate body temperature, as Bella just said, because of the dysautonomia. When I have my adrenaline surges, I'm warm for just a second, then back to cold again. People always tell me I have cold hands; I wear gloves, scarves, wool socks, and wool slacks, in the winter, than I'm the opposite in the summer.

[Lel]

While doing research on Raynauld's (I was just diagnosed last month), I discovered people recommending paraffin wax baths. The actual bath seems to run around $35-50. I haven't bought one myself yet, but perhaps this can at least help with your hands and feet. I also have major, generalized temperature regulation problems. Sometimes my face will be sweating but my feet will be ice.

POTS is so weird. I also have UCTD, and sometimes I feel like more things are ambiguous/variable than certain about both POTS and UCTD.

[katieindixie]

Thanks everyone. I think it's probably just the ANS......but wondered if it was some other crazy thing someone had pinned down.......... my skin is very cool to touch when someone else touches me but just in those areas.....I guess it is just ANS and POTS.....THanks you all

[lynnie22]

Just to add to the comments. My legs and feet get very cold, and my nose has always gotten cold by itself since I'm a child. They are cold to the touch and I notice lately that I get the chills a lot. I think it is part of the ANS. They don't warm up until they are ready but when they do then suddenly I'm very warm.

sometimes it helps to massage them or drink something warm. They should make nose warmers.