Diagnosed with SFN 3 years ago. I’m not diabetic. I’m considered idiopathic. Pain is either extreme cold or heat. Walking feels like I’m barefoot on a gravel road!!!! Legs ache constantly like I ran a marathon. I’ve tried everything, from various meds to acupuncture. Nothing really helps. It’s an extremely frustrating disease that seemingly has stumped every neurologist I’ve seen. I’m seeing my last neurologist in January at Mass General Hospital in Boston. She has made SFN her sole specialty. If she can’t help, I’m lost. I’ll live my remaining days in constant pain.
I hate opioids, but they’re the only medication that gets me through the day sometimes. I take them sparingly as I know the addiction issues. But really, what is one to do?
If something comes of this visit, I’ll get it out on this platform. I was very active not too long ago. Very athletic. Skiing, hiking, tennis. Hitting the gym 4 to 5 times a week. That’s all gone!!! Very depressing. But I just can’t give up!!!!