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OMG! We have the same thing! We MUST figure this out. For decades now I have struggled with having burning hot fingers and toes. They turn red and hurt. This is when I go into a very low functioning state. However, when I flip into having freezing cold fingers and toes, I function much better. I also have Raynauds phenomenon.
Also, when I get the hot fingers and toes, the veins in my entire body are extremely dilated, exacerbating pots etc. And when my fingers and toes are cold and I can function, it seems that the veins in my entire body are constricted compared to the other states-I guess this would be considered normal dilation.
If I take a nap in the afternoon, when I lay down-my toes turn freezing cold and I have to put multiple socks and slippers on. By the time I wake up from the nap, my toes are on fire And I cannot function. Morning equals cold toes and bedtime laying down equals hot toes, pounding heart all over dilated veins, etc.
Do you have any symptoms like these? Dr. Diana-have you heard of anyone else having these symptoms? Do you know what this is?