Why does EM hurt? What actually makes it hurt? Why do I have the redness and even slight swelling in parts of my body but it doesn't hurt and other parts with the same redness and swelling hurt? How come cold water immediately makes the pain go away completely and the second the water is gone the pain is back? That means that the condition in my blood vessels did not change one little bit while cold water was used and if the conditions didn't change why did the pain go away?
Enough questions, I guess but that is what I am thinking about and I have no answers but sure would like to have them. Maybe one of you here had a doctor explain it and could pass it on to me.
Sorry, I have no answers for you, I just know exactly how you feel. I often have to sleep with my feet wrapped in a wet cloth to keep them cool, optic the cloth falls off the pain in my feet returns and wakes me up.
I have no concrete answers, but since EM is said to be neurovascular, perhaps the pain is the "neuro" and the redness and swelling are the "vascular," and while they tend to get triggered together, maybe the symptoms can also happen separately. Cold helps numb pain and reduce swelling, so maybe cold water just happens to help both the "neuro" and the "vascular" at the same time.
You've had redness and swelling without pain, and I've had electric-like nerve pains without any visible symptoms, so this dual-system explanation makes sense, I think. Just a guess, though.
With the hereditary form of EM. There is a definite explanation to the pain:
It’s all to do with a particular type of nerve that carries pain signals getting over excited.
It has a sodium channel that stays open for too long. The role of this channel is to multiply signals from stimuli such as heat and cause the pain nerve to fire. This means even low levels of heat can cause the same message as a burn or scald as it’s effect is multiplied (in people without EM this would normally require a lot more stimulus to meet the threshold to cause the nerve to fire).
Nerves are quick, so by cooling with water they instantly turn off, but remove that cooling and the nerve starts firing again!
I was putting my feet in water at night but this was waking me up too much so I have been using cold packs, the ones which don't go hard, and wrapping one round the foot which hurts.Then I can go back to sleep and it usually lasts until I wake up in the morning.