Hi, I am new to the forum and thought I would share a recent experience as I find it hard to understand! I was diagnosed earlier this year with EM (mainly feet). Since then, it has got progressively worse - especially when I walk.
Prior to being diagnosed, my wife and I had booked in to walk a number of well known day and overnight tracks in Southern New Zealand. Closer to the time, I thought we should cancel as EM was causing too much pain (sometimes 24/7). In the end we decided to take the risk and go. In summary, over 18 days we walked 290 km (180 miles) - a lot of it was high up in the mountains with steep climbing and with a pack. The temperature averaged 25 degree Centigrade (77 Fahrenheit). For some strange reason/s, I found EM was only a minor issue - although it has now flared up badly again since being home 10 days. Has anyone else had this experience? FYI, I am on topical 0.5% ketamine and 2.0% amitriptyline. Maybe it had something to do with the extreme exertion and blood circulation (aspirin is ineffective for my EM)? Food wise - because burning up so many calories while walking, I ate a lot more food than normal including sweets, cakes etc. All very puzzling!
Hi rcm,
I’m glad that you were able to join the walk. A few days ago I decided not to let EM disable me so I put on shoes and went to the gym, surprisingly my feet were okay, if not better than sitting at home. and they continued to be okay after I got home even though I was hot and sweating from working out. So I suspected it has something to do with whole body temperature as well, and I tried to keep my heart rate high even after I got home with push up and planks to see if the itch/pain would come back. and it didn’t until I took a shower. I’m very new to this so I’m still learning everyday and testing things. I started taking aspirin and it helps me. I hope you can come to some conclusion about what helps you soon.