Anyone Have This?

[Traceyf]

Hi Everyone

I thought that I had seen every symptom but now I seem to get so nauseous, and after I have been up for a while ' a good while, like 3-4 hours I get a terribly cold nose and hands. I was sitting at my computer most of the day yesterday and sitting for me can sometimes be worse than standing. My face gets very pale and my nose gets so very cold. Ice cold! I woke this morning with a bright red rash under my eyes, and on the tip of my nose. It hurts to touch my skin, and it looks like a sunburn! My eyes are very dry and the whites area grey looking. I also can't seem to quench my thirst. I didn't go to the PCP as I am not having much luck with the medical field lately. I feel crazy posting these odd symptoms...I'm hoping someone can either relate, or can point me in some kind of direction. I am also freezing all of the time. Chilled to the bone!

Thanks

Tracey

[Canadiangirl73]

I have thermoregulatory issues also. I go through periods when I cannot get warm and my feet, hands and nose are so cold that they burn. Does that make sense? I can be cold for days and be unable to warm up. Even sitting in a warm bath doesn't help. It was the case last night. I was shivering so hard in the tub in spite of the water being hot and kept on shivering once I got in bed under the thick layers of blankets. I guess it is normal to get cold extremities when we get cold: the body shunts the blood supply from the extremities and the surface of the skin to keep vital organs warm. So the abnormal thing is feeling cold and not being able to warm up. I guess it is part of dysautonomia... I also get the opposite: horrible hot flashes. My skin turns red and very hot to the touch but I don't sweat. I feel like a Katy Perry song

[Traceyf]

Canadiangirl

Yes! That all makes sense to me. I will shake uncontrollably when I go to bed only to wake up 4 hours later drenched in sweat and the temperature in the room has not changed. I am a little concerned though because the skin on my cheeks and nose is so red that if its a thermoregulatory thing then I m burning from the inside out!!! That's a scary thought. Funny though because I never felt warmth yesterday, no flushing, just freezing cold on my face. Yet it's showing as a burn on the skin, almost as if I had been outside in our lovely 7 degree weather and I got windburn....even though I never left my 70 degree room !

[Katybug]

Yes, yes, yes....nausea and never being able to control my body temp were some of the first symptoms I had . The nausea is mostly better now.but I am laying under a sheet,a blanket, and two comforters with my hood up and a scarf wrapped around my neck (and a kitty laying on me) as I write this post and my hands are still cold. But in five minutes I could all of a sudden be having a hot flash and be peeling everything off. I have learned to dress in layers, drinking hot or cold beverages depending on which temp I am, running my hands under either hot/cold water, taking hot/cold showers or baths are some of the things I can do to bring me out of a really bad state of dysregulation.

Also, I HIGHLY recommend taking pictures of any rashes or any physical feature of your symptoms that you can document with photos. I wish someone had suggested it to me in the first three years. I missed a lot of cool pics I could have shown the docs.) But, this will allow you to show them what you are describing even if it has disappeared by the time you get to a doctor.. I also have a long series of pics that I can show to doctors so they can see the patterns and changes through the last two years.

And, specifically regarding the rash you are describing, please look up some images of "Butterfly rash" which tends to be associated with Lupus. I don't mean to scare you but if what you have resembles a butterfly rash, you should seek out a doctor quickly. (I boycotted docs too for about 6 months a couple years back, so I get that but some things shouldn't be ignored.)