Feeling of coldness more than burning and/or runners

Hi. My name is alynn. I am a 40 year old, very healthy person, until last year. Last year, after strange symmtoms of itching/burning and redness in my hands and feet, I went to many doctors about my condition. I saw a neuorlogist, rheumatologist, vein specialist, physical therapists. I had more tests in one year than I had in 40. I did PT, accupuncture, tried Gabapantin with not much improvement. Several of the doctors I saw didn't know what I had--possible neuropathy in feet--so suggested I go to Mayo Clinic, which I did this past July.

Because I was not having symptoms at the time, they could not do definitive tests to determine if I had erythromyelalgia, but suggested that I had "possible erythromyelelagia." They told me to try aspirin and gave me a cream with lidocaine/ketamine. Neither has done much.

I will be symptom free for weeks, and then, like recently, my left hand and foot will be very dry, red and sensitive to temperature. However, while they get red and might get hot while I'm running or exercising, I notice even more of a sensitivity to cold. So, I cannot go barefoot or even be slightly cold because my feet seem to have a frostbitten type feel to them, with redness or yellow patches. Rather than burning, they feel very cold to the touch. But, I will intermittently have a sort of shooting pain/hotness feeling in my foot. I was tested for Raynaud's which they said I did not have.

Did any of you have initial knee or leg pain? All of my symptoms began after what I thought was knee pain from running. I began to get nerve symptoms in my left leg, which then proceeded to these EM symptoms.

I am wondering if anyone else has more of a sensitivity to the cold. I live in Chicago, and while we have had a mild winter, it is hard to be able to do things with my children or even be outside for short periods of time.

On another note, I have been told that Dr. Mark Davis, Dermatology at Mayo Clinic and Dr. Sandroni (neurologist) are two doctors who specialize in EM who could help those of us. I am thinking of returning there to have a definitive diagnosis.

Thank you to all of you for your feedback. I hope for all of us that we find the end or at least management of this condition.

Hi alynn my name is yosi and I was recently diagnosed with primary erythromelalgia. I went to a couple of general internists, dermatologist and a rheumatologist before getting a final diagnosis. Other than the erythromelalgia I am a healthy 25 year old. I often times feel more coldness than heat but I do have the occasional burning and redness accompanied with the dry rough peeling skin.

Hi Allyn,

my EM started with initial knee pain and swelling.- leg affected then massive onset all over body just 3 months ago. Ive been on a flare solid for that time- night is terrible.. im desperate. .My symptoms also sound much like yours. extreme sensitivity to cold etc.... Be great to compare notes. Stay strong. God bless x

I actually had something similar in my right arm. I felt like I had injured it doing Yoga or hitting golf balls. Seemed like basic nerve pain to me; the type you would get a Cortisone shot for and you'd feel better in two weeks.
But unfortunately I became sicker and sicker. I am currently on Nortriptyline but find that the cold weather sets off the inflammation. And yes, within minutes of a flare up my hands could feel like ice cubes or burning. It changes from minute to minute! Happy to speak with you on the phone if you send me your tel number.