Quote:
Originally Posted by hibodhi
So I searched around the site and it seems that "non-length dependent" (NLD) is not very common... Is that right? Is NLD small fiber neuropathy the same as "ganglionopathy" or "neuronopathy"? I was very athletic my whole life, lived outdoors, especially love(d) to run, and ride my bike to work and everywhere. Unfortunately, since this terrible pain started I've lost doing all those things that made me so happy. I'm crossing my fingers "Santa" brings me a stationary recumbent bike this year and I can get back to moving without passing out!
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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.