This condition began to show up around May of 2010 when my wife's feet would randomly swell, turn red, get hot to the touch and become extremely painful. She describes it as being lit on fire. It is actually considered one of the most painful conditions out there. It is also very rare, which is why we brought the diagnosis to our primary care doctor. And for us it was just one more problem on a long list of things that had happened to Tracey's health over the past few years.
At first the flares were fairly infrequent, and she mostly noticed them when it was pretty warm out or when she had been walking for a while. Over the past 10 months, EM has taken control of every part of our lives. Tracey now has to work from home, she leaves the house only to go to the doctor, the house is kept at exactly 66 degrees, and a fan blows on her feet whenever she has a flare. The condition also affects her hands, and the flares have become more and more frequent. We have been trying many things and seeing a bunch of doctors over the last few months. So far nothing has worked.
This post is to inform everyone that I have not and will not give up on finding something that will cure this horrible disease. My goal is to keep this blog as a journal of what we have tried, what we are currently trying and what we will try in the hopes that something will not only fix Tracey, but will help someone else dealing with this disease. I plan to use this blog to get organized in this fight.
Coming next: what we have done, what we're starting to do, and our future options to try and fix this...
Do you know anyone that is struggling with burning, swollen and painful feet or hands? Have they heard of Erythromelalgia? If you have EM, what have you tried and has anything worked for you?