Yesterday was very hot in here, and my feet were worse than ever. Can anybody tell me if this is normal? I mean, when I wake up my feet are very good, it's not red, it doesn't hurt, but during the day I can feel them getting warm gradually. I don't have any tingling. When I lie down I don't feel any pain, but when I get up I feel like all my blood goes to my feet, sometimes I have the feeling it will explode (LOL). I don't konw if that is commom, my doctors are still trying to find out what I have. Can anybody help me?
Hello Victoria,
Some EM p atients, myself included, have very adverse reactions to warm air temperatures. EM can cause the nerves in the capillaries that supply blood to the tissues of the feet or other extremities to be hypersensitive to warm/hot air temperatures, exercise and pressure from walking/standing. This hypersensitivity causes the blood flow to increase in those areas which brings the burning pain, very warm skin and redness. Some medications help to reduce or eliminate the hyper-reactions of these small fiber nerves and therefore reducing the EM "flare-ups" in frequency and severity or blocking them altogether. Also, very light weight clothing, no socks and open-toed shoes help to keep the feet cooler and many times avoid the EM "flare-ups" if used in combination with the medicine. I hope all of this info. is not more than you need or wanted. You will get the hang of all this as you become acquainted with more of the terminology that goes along with fighting EM.
Let me know if you want to talk more, have suggestions for me or want to chat online sometime. I am sure I could learn things from your experiences and would be glad to help you if I can. We are all learning about EM as we go. In this message is a link to an article that helped me to understand EM better.
Here is a good article that describes EM. "What is EM?" by The Erythromelalgia Association (TEA). There is more at their website. http://www.erythromelalgia.org/WhatisEM.aspx
I hope you find some answers and treatment that will give you relief.
David