Originally Posted by SFNgirl

Hi, I've been on the peripheral neuropathy forum before but new to this one. I developed non length dependent small fiber neuropathy about one year ago, and have body wide pain, in varying locations, 24 hours a day. Before this, I was completely healthy. I am 43, and a mother of 2 great kids (10 and 8), and my wonderful husband is a stay at home dad. I'm currently on a medical leave because the pain is just too much for me to be able to travel and attend meetings as I should. I have a few neurologists, so far after tons of testing it has been deemed idiopathic, though my Hopkins neurologist believes it is likely due to an autoimmune issue. In addition to the pain from the sensory neuropathy, I have autonomic neuropathy, causing blood pressure, sweating and digestive issues. I have lost about 20 pounds, and also now have flashing lights in my eyes and ringing in my ears.

I saw a pain management specialist for the first time about a month ago, and he recommended the Medtronic stimulator. I'm wondering if anyone on here has small fiber neuropathy and has a scs? My doctor said typically its not used for SFN, but he thinks given that my legs and feet seem to be my more consistent and more intense pain, that this a reasonable thing to try.

I am now on day 3 of a one week trial and am cautiously hopeful. At first, I was dismayed, and surprised at the intense feeling of the tingling vibration, and couldn't imagine the idea of feeling it all the time. But I am getting used to it now and find that I prefer having it on to not. I can still feel the pain through the tingling, but does seem more muted, and it seems particularly useful in my feet for standing and walking. There are times, however, like last night, where my pain shoots to a 8/9 and this just can't compete.

Do others still feel the pain through the tingling? Do you keep it at a pretty high intensity? When you turn it off, does the pain seem even worse? For it to work, I really need it at a pretty high level and wonder whether I'll really be able to get used to it and actually be able to work like this. Does it take a while to get used to it? Do you sleep with it on? How difficult is the implant surgery?

Sorry for so many questions, but this is such a strange process, I sometimes am sure I am in a strange dream. I'd also kill for a warm shower

Thank you so much in advance for any thoughts and responses!