My EM started when I was 41, as a direct result of bilateral tarsal tunnel syndrome (TTS). I also believe that my use of ice packs for my TTS contributed to the onset of EM. It came on gradually, and after having been misdiagnosed by one doctor with CRPS/RSD, I tried hyperbaric oxygen therapy. Instead of helping, the increased blood flow from the treatment caused my EM to suddenly become very severe. I went from using cool washcloths and a fan to soaking my feet in cold water almost 24/7.
I desperately tried a number of medications and supplements. None helped and some caused my flaring to worsen significantly. I had been bedridden for almost a year when I finally found some relief. In 2013, I had my first Qutenza (8% capsaicin patch) treatment with Dr. Wendye Robbins at Stanford. This gave me about a 50% reduction in my EM symptoms! Finally, I could get rid of the water buckets and ice packs and only needed a fan for cooling.
Over the next couple years, I had two more Qutenza treatments, but neither gave me further relief. In 2015, I tried Will Prowse’s protocol, which involves OTC capsaicin cream applications, followed by a period of progressive heat exposure. After a few treatments, my EM did improve to the point where I could tolerate hot showers, wear slippers around the house, and only use a fan on my feet in the evening before bed. I still had flares, but the pain was much more tolerable. However, the treatments themselves were extremely painful, and I had to stop after about six weeks.
During much of this time, I have been housebound and unable to walk due to my TTS. There was a period of nearly two years when I recovered enough to walk a little bit and leave the house occasionally. Then I had a relapse and am back to being unable to walk again. EM and TTS have both caused me to become very isolated. I am fortunate to have a wonderful husband and son who take good care of me. I have struggled with depression throughout my illness but am finally learning to manage it by finding some new hobbies and focusing on the things I can still do that bring me joy.
Stephen Hawking: “However bad life may seem, there is always something you can do and succeed at. Where there’s life, there’s hope.”