My EM started right after my daughter’s wedding in Texas in 2006. Before returning to California my feet started burning. I thought I had caught an infection and searched drug stores for anything I could find to cool them. This is when it all started. Little did I know from that day forward I would never be the same person.
Several weeks passed before I made an appointment to see the doctor. My feet would turn blue without reason, then reddish purple and burn so much it would make me sick. At first I was diagnosed with neuropathy and later a neurologist diagnosed “Hot Feet” and said, “I don’t treat this.” I left the office in tears. I was then referred to another neurologist who has treated me for three years. I give him every bit of information on EM that I can find. It seems since there is so little known about this rare condition that I still feel left out, medically. My world has come to an inactive halt. I have to plan my days, interests and my life. I find that ice packs are my savior.* I have started playing pool, which surprises me. But, I find it quite enjoyable for one that has to have a cool room temperature. This can be played all year round. I also have a wonderful spouse who helps me and tries to understand this strange event that has happened to our lives. I know that he will never understand the total pain of EM.
I am now taking Methadone 5mg, Lyrica 250mg, and Cymbalta, all twice a day. I have tried many other drugs, but they didn’t help. These three drugs still are not covering my pain either. I will have to talk to my doctor again to see what we can do. Weight gain seems to be a big problem. The medication along with EM slows you down considerably. Walking in a swimming pool is grand. Trying to walk the dog is very painful.
*EDITOR’S NOTE: Using ice packs is not recommended by doctors.