My neuro told me the same, "It won't kill you, but it is uncomfortable." The thing is that I had high amounts of jo-1 (myositis antibody) before my diagnosis of sfn. For some reason, the jo-1 seems to have gone away. Myositis killed my uncle. So, I kind of was relieved to hear those words.

I am also athletic. It has taken about 9 months, but I am back to my running self, symptoms and all. The exhaustion gets better, but it is a very slow process. I started back run/walking. I cried many, many times mourning for all that I used to do.

The good news for me and maybe for you. Exercise really does help my symptoms, especially the autonomic symptoms. A year ago, I couldn't bend over to pick things up because I got so dizzy I felt I would pass out. I was worried my base boards would never be cleaned again! Now, I am able to do most things I was doing before.