The only help is BIOFEEDBACK. It really works, but it has to be done on daily basis otherwise symptoms will come back.
Im fifteen and my hands often turn red at seemingly random times. I also get blotchy skin when its cold. Also, i get dizzy when standing up after lying down for some time. Does it have something to do with circulation? These are only minor inconveniences but i would like to know what it means.
The info below is from medicationsense.com
medicationsense.com
Red hands and feet
It is telling that EM occurs in the specific heat exchange areas of the body -- feet, hands, ears, nose - which the body uses to blow off excess heat. Blood vessels in these areas open, heat is dissipated, and the vessels narrow again. This usually occurs imperceptibly.
The human system functions optimally within a narrow range of internal temperatures around 98.6F (37C). What if the temperature rises much higher, as can occur when a person runs a marathon or hikes in the desert in summer? The body can overheat, and if severe, hyperthermia develops. Hyperthermia is a dangerous, life-threatening state. The body must cast off heat and quickly. To do so it initiates emergency actions that include a massive, maximum opening of the arteries in the heat exchange areas of the body. In seconds, the body can increase blood flow in these areas of the skin up to 32 times normal. Blood flow can skyrocket from one-quarter to eight liters per minute, an increase of 3200%. This mechanism is built into our systems to save our lives during hyperthermia. The point is that in hyperthermia, massive vasodilation in the heat exchange areas is normal!
But it is not normal under other circumstances. The massive vasodilation, causing the heat, redness, and burning pain of EM is not normal. At 70F, the skin of the feet and hands should remain cool. At 80 or 90F, the skin might become a bit warm and moist but otherwise normal. Yet in EM, the body reacts at 70F as if hyperthermia were occurring. Why is this? Clearly, the mechanism in the nervous system that regulates blood flow to these heat exchange areas is dysfunctional. It unleashes the skin reaction as if the temperature was 120F and hyperthermia was occurring. The regulator is off. The reaction is an aberration of a normal response.
Is there any proof of this hypothesis? There are two intriguing pieces of evidence. I have always wondered why the reaction responds so quickly to cooling. The ease with which EM's symptoms can be reversed is astonishing. And why does cooling work so well? Because it sends a specific signal to the hyperthermia regulator that all is well. Heat is the trigger. Cold is the antidote, temporarily, but not a cure.
Another piece of evidence is that the primary chemical mediator of the massive vasodilation in the skin in hyperthermia is nitric oxide. And in EM, what is the main mediator of increased blood flow? Nitric oxide.
This explanation is just a hypothesis, but it seems to have merit. The concept of a dysfunctional hyperthermia trigger makes sense and offers a medically reasonable explanation for the development of EM. In addition, it offers patients and doctors a logical a way to understand this baffling and often disabling disorder, erythromelalgia. Hopefully it will lead to new avenues of research and treatment for those of us with EM, which is a dysfunction, not a disease.
I'm a little girl who has it too I get imbarresd too
thank you for your post. i have the same thing. I think your on the right track. My mom has the same thing and has been to several doctors. At first they thought Lupis, then then finally they settled on fibromyagia.My email is ***@****. If you ever get a correct diagnosis would you please e-mail me the info? my hmo is clueless. also i have other symptoms as muscle aches, stiffness depression (im 53 and have never been depressed before) pain keeps me awake. motrin helps but now my stomach is raw from it. i ice my hands and feet to cool off burning. Do you also have these symptoms? I feel like a hypocondriac. it was nice to see that others are also searching for solutions. thanks for sharing. maybe if there's enough of us someone will come up with a real answer.
In reading this I was thinking POTS, but see ur Dr said the same thing....there is a forum here where u can get more info on this and related topics....
http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266?controller=forums&action=show&id=266&camp=msc