I haven’t been tested for SFN but have been told I do not have it based on my EMG saying it was a different idiopathic PN. I have numbness in hands/lower arm and feet/lower legs, but with pain and tingling if I don’t keep it in check with Gabapentin.
I went from “healthy” to crippled by PN in about 10 days. No walking, feeding, dressing, typing, writing, wiping myself etc. Almost a vegetable, and institutionalized for 7 weeks with extensive PT and OT.
The therapies were tough, but with special designed eating utensils, I was able to feed myself. With continued concentrated home then outpatient PT and OT and a lot of practice, I can now get by with my hands and feet; far from perfect, but so great compared to that dark period. I have to improvise on how to get things done, and assess the importance of what I’ll risk injuring myself for or spending excessive time on.
I avoid buttons and shoestrings. Velcro, zippers, pullovers, and slip-on shoes help. Typing (with big computer buttons vs cell phone) over writing. I avoid childproof stuff as much as I can choose and use grippers when opening jars. Ziplock over the storage bags you have to line up and press until you get it right. I haven’t found a way to use Tide Pod packages; I buy one large container and have someone open it for me then I transfer them to a ziploc I am able to use. Even their pods sold in the sealed bags are made so kids can’t open them & eat them, so it means I can’t either. Newspapers are a thing of the past for these hands, but I still prefer paper books over reading on a tablet, so I still manage that.
I drop a lot, have to make sure my utensils are positioned correctly, and watch what I’m doing. I do try to avoid having to cut with very sharp knives. I make a lot of mistakes. I no longer take a terrible amount of time to keep backspacing to correct errors, I just let a lot of them go; I have to decide best use of time sometimes. I can drive right now and am beyond-belief grateful!
So, I think physically my disease started out at that rock bottom you talk about getting to, but with hard work and great therapy, I climbed so far up from there. Nobody knows for sure what’s ahead, but I’ll continue keeping my exercises going and living life smartly to avoid injuring myself and hopefully have an edge if things start declining.