janiedelite Posted January 15, 2009 Report Share Posted January 15, 2009 Just thought I'd see if anyone else has this annoying symptom. I know most of us have problems with temperature regulation and that people have strange sensations (like water on their skin, etc). My skin feels so hot sometimes, especially where I have any clothing on and on my head. And when I feel my skin it feels like it's burning up! But when my hubby (who does not have dysautonomia) feels the same area he says my skin feels really cool. I have been diagnosed with small fiber neuropathy, but this isn't really painful, just really uncomfortable. My skin feels like it's been under a heat lamp or something. Benadryl helps with the episodic burning of hands and feet, the burning throat and mouth with funny taste. But I'm still left with the hot skin, although my temp might even be low and my feet are cold. And when I look at the areas of skin that feel this way they look mottled and pink.Anyone else have this problem? What do you do about it? Is this just another malfunction of my nervous system? Janie Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 15, 2009 Report Share Posted January 15, 2009 Hi,My skin feels hot and it is hot. My husband calls me the furnace. It's due to vasodilation. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 15, 2009 Author Report Share Posted January 15, 2009 Hi,My skin feels hot and it is hot. My husband calls me the furnace. It's due to vasodilation.Hi Ernie,The wierd thing is that my skin feels hot when I touch it, but when anyone else touches it they say it's cool. I also get really red, hot extremities with increased pooling, but today my feet are ice cold, but I'm still pooling because my veins are bulging everywhere. Wierdness. Janie Quote Link to comment Share on other sites More sharing options...
HoudiniCat Posted January 15, 2009 Report Share Posted January 15, 2009 I used to get this all the time ? the burning skin sensation that feels like you?ve got the worst sunburn in the world. Mine stayed mostly on my face, neck, chest and back and occasionally on my legs. During these flare-ups the feeling of clothing on my skin ranged from uncomfortable to unbearable. At the worst times, I had to lie down with cool cloths over my body. At times I also had the cold hands/feet so it was quite a balancing act to get even a little relief. Nothing to do but lie there and try to sleep. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 15, 2009 Author Report Share Posted January 15, 2009 I used to get this all the time ? the burning skin sensation that feels like you?ve got the worst sunburn in the world. Mine stayed mostly on my face, neck, chest and back and occasionally on my legs. During these flare-ups the feeling of clothing on my skin ranged from uncomfortable to unbearable. At the worst times, I had to lie down with cool cloths over my body. At times I also had the cold hands/feet so it was quite a balancing act to get even a little relief. Nothing to do but lie there and try to sleep.Hi houdinicat,You mentioned that you "used" to get this all the time. What happened? Did all of your dysautonomia symptoms get better or did they just change? Sometimes I also drape damp cloths over my skin and lay in front of a fan. Thanks, Janie Quote Link to comment Share on other sites More sharing options...
yogini Posted January 15, 2009 Report Share Posted January 15, 2009 This always happens to me too, because my hands are colder than the rest of my body... Quote Link to comment Share on other sites More sharing options...
HoudiniCat Posted January 15, 2009 Report Share Posted January 15, 2009 Yes, after a little more than two years, my symptoms are finally subsiding to where I can get through most of the day without feeling sick/thinking about POTS. The burning skin was one of my worst symptoms in the beginning so I?m most glad to see that one go. Not sure what has worked most ? meds, vitamins, salt/water loading, cranial osteopathy ? I feel like those have helped but that only time is really helping. When my POTS doc first met me he said that I will likely ?outgrow? the illness in a few years ? as most people do. I thought that odd as I was in my mid-40s. Now, two years later, it sure seems like he was right. Hope you get some relief soon. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 15, 2009 Author Report Share Posted January 15, 2009 Yes, after a little more than two years, my symptoms are finally subsiding to where I can get through most of the day without feeling sick/thinking about POTS. The burning skin was one of my worst symptoms in the beginning so I?m most glad to see that one go. Not sure what has worked most ? meds, vitamins, salt/water loading, cranial osteopathy ? I feel like those have helped but that only time is really helping. When my POTS doc first met me he said that I will likely ?outgrow? the illness in a few years ? as most people do. I thought that odd as I was in my mid-40s. Now, two years later, it sure seems like he was right. Hope you get some relief soon.Wow! It would be great to "outgrow" POTS. I'm 35, and just like you, I assumed that those of us who got sick as adults usually have a chronic course. Thanks for letting me know how you are doing. The burning skin is certainly one of my most distressing symptoms too. Janie Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 16, 2009 Author Report Share Posted January 16, 2009 Unfortunately, I think I'm coming down with the flu. For the past 2 days, I've been having GI cramps, and I have been nauseated and slightly feverish for 24 hours. This would explain the excessive heat sensations! I went to a dinner last Saturday for a birthday party and my brother-in-law was sick as a dog and sat across from me. I got a flu shot, so I hope I will recover quickly so I can be my "normal" POTS self when I go to Mayo on 1/28!!! I'm trying not to be too mad at my brother-in-law since the stress will just make me sicker . Janie Quote Link to comment Share on other sites More sharing options...
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