Jane, I have the same thing. (one foot is suddenly red and hot, then an hour later, it clears and in minutes the other foot is flaring.) Walking sets off my EM. Too much standing as in cooking. Grocery shopping. I came home from shopping and my left foot flared for 5 hours and then went away. Then later that night my right foot flared. One day I had a flare which came on gradually and lasted for a few hours and then just stopped like turning off a switch. I have found a doctor in my area that has heard of EM and is working with me. I want to ask about genetic testing for EM. I have granddaughters that complain about their feet being hot at night. When I was in my 30's my feet would be hot at night also. Hope they aren't getting EM.
Pat in NH
Jane said:
I think Cheshyre is right, as far as it goes, on the circulatory problem, but that doesn't explain why one foot is suddenly red and hot, then an hour later, it clears and in minutes the other foot is flaring. I think, from reading, that the circulatory problems are initiated by nervous system problems. The genetic version is a protein sodium channel in nerve tissue stays open too long, allowing the electrical potential needed for nerve firings to get stronger and stay open longer. Somehow (I'm still reading and trying to understand) that stimulates dilation or contraction of muscles of capillary walls (and I don't know how or which).
I'm thinking that if that's (sort of) the mechanism for the inherited version, and most types seem to ACT the same, it may also be related to non-inherited forms of EM. Makes sense to me for EM secondary to neuropathy, at the very least.
Which makes me think having a Neurologist's in-put might be useful.
Jane/Pat....I have the same thing too. One foot and then the other. Seems like if one foot is flaring, there is less chance for the other....However, when the one foot comes down there is a 98% chance the non flaring foot is going to take off. However, if it is toooooooooooooo hot then, they can both go. I describe it as.............the blood has to get pumped somewhere. If a foot is flaring the blood is pumped into the flaring foot. When that foot eventually comes down..,That same blood must be pumped somewhere, and in this case it is to the foot that has not been flaring. I wish I had a valve on my blood. I could manually control it.
Jim, your description applies to me tooâŚmakes me wonder if this is another common characteristic of all EM sufferers or just a subgroup.
Jim Weed Alaska said:
Jane/Pat....I have the same thing too. One foot and then the other. Seems like if one foot is flaring, there is less chance for the other....However, when the one foot comes down there is a 98% chance the non flaring foot is going to take off. However, if it is toooooooooooooo hot then, they can both go. I describe it as.............the blood has to get pumped somewhere. If a foot is flaring the blood is pumped into the flaring foot. When that foot eventually comes down..,That same blood must be pumped somewhere, and in this case it is to the foot that has not been flaring. I wish I had a valve on my blood. I could manually control it.
Jim, your description applies to me too...makes me wonder if this is another common characteristic of all EM sufferers or just a subgroup.
Jim Weed Alaska said:
Jane/Pat....I have the same thing too. One foot and then the other. Seems like if one foot is flaring, there is less chance for the other....However, when the one foot comes down there is a 98% chance the non flaring foot is going to take off. However, if it is toooooooooooooo hot then, they can both go. I describe it as.............the blood has to get pumped somewhere. If a foot is flaring the blood is pumped into the flaring foot. When that foot eventually comes down..,That same blood must be pumped somewhere, and in this case it is to the foot that has not been flaring. I wish I had a valve on my blood. I could manually control it.
I get the unilateral flaring as well. It is never very predictable, which of my hands or feet will decide to rebel on me, but I always appreciate when it is just one. Lol.
I think that the âtextbookâ information that defines what is âusualâ for people with EM is almost ironic. EM is such an uncommon condition, and rarely ever the same for any two people (with triggers and flares), that calling any particular description of it âusualâ is laughable.
Consider this: it is considered extremely rare - for this extremely rare condition - to have flaring as high as your knees. Yet I have experienced it at least 5 times. It is rare for me. But for others, it may be more common. Also, the unilateral flaring is, according to authors of articles that claim authoritative knowledge of EM, indicative of secondary EM. I do not know which I have, but my daughter (7 yrs old) has it as well. It is far less active for her, though, which I am thankful for.
There seems to be more information to be found now than just 3 years ago. I understand the desire to have more information before drug companies move to develop something that will help. I would be willing to try something that reduces the heat and takes the edge off of this hair-trigger reaction of increased circulation in the extremities. What I wonât do is take one drug to combat EM and develop 5 other conditions as side-effects. Not a fair-trade for me. I can deal with the EM. It sucks, but I can wait for something that actually helps. Or find it myself.
That is what so many of us have had to do anyway: find what works for us individually.
CC
Jim Weed Alaska said:
bcoimbra said:
Jim, your description applies to me too...makes me wonder if this is another common characteristic of all EM sufferers or just a subgroup.
Jim Weed Alaska said:
Jane/Pat....I have the same thing too. One foot and then the other. Seems like if one foot is flaring, there is less chance for the other....However, when the one foot comes down there is a 98% chance the non flaring foot is going to take off. However, if it is toooooooooooooo hot then, they can both go. I describe it as.............the blood has to get pumped somewhere. If a foot is flaring the blood is pumped into the flaring foot. When that foot eventually comes down..,That same blood must be pumped somewhere, and in this case it is to the foot that has not been flaring. I wish I had a valve on my blood. I could manually control it.