I am 43 years old, a former dancer and Pilates instructor, a cookbook author, and a mom to a 6-year old boy. My nightmare began in the fall of 2010 when a pair of OTC insoles caused a pinched nerve in the arches of my feet. My podiatrist diagnosed bilateral tarsal tunnel syndrome (TTS), but his expensive custom orthotics only made the pain worse, as did acupuncture. Before long the pain spread to my heels, and I have not been able to walk since September 2011.
My neurologist dismissed the TTS diagnosis, since all my tests were normal, and he prescribed nortriptyline for the pain. Within a few days of starting the drug, I developed the classic symptoms of EM. It came on gradually but got progressively worse following certain treatments. I tried hyperbaric oxygen therapy in hopes that the increased blood flow would help my nerve injury; instead, this caused my EM to go from mild to severe. I went from using cool washcloths and a fan to soaking my feet in cold water almost 24/7. I tried a number of medications and supplements; none helped and some caused my flaring to worsen significantly, particularly the antidepressants. The worst reaction of all was from oxycodone, which caused severe edema from my ankles to knees.
I had been bedridden for almost a year when I finally found some relief. In January I had my first Qutenza (8% capsaicin patch) treatment with Dr. Wendye Robbins at Stanford. Despite the epidural anesthesia, it was extremely painful—but it has given me at least a 50 percent reduction in my EM symptoms! Finally, I could get rid of my water buckets and ice packs and am now using only a fan for cooling. My feet still flare but much less frequently and with almost no pain. I can even sleep with my feet under the sheets again! Even though my original nerve injury is not yet resolved, I feel grateful to no longer be in constant, excruciating pain. Soon I will undergo my second Qutenza treatment—hopefully I will see even further relief.