@fuzzy1southernga

This has been a good forum for me, as well. I've had idiopathic small fiber peripheral polyneuropathy for 7+ years. It was diagnosed in 2013.

Sometimes I prefer to see a doctor alone also. I haven't been able to see the neurologist since February and my next appointment with her was bumped 3 months out. When doctors were seeing patients again I had my appointment moved back several weeks, but since then I've been called twice to change the date. So now it's back to the day they bumped me to, at the end of June. If she weren't such a good doctor I might be looking for a different one. The more they postpone it the worse my pain is.

What areas are affected by neuropathy? Mine started with pins and needles in my feet and legs, then pain was in the balls of my feet, but over the past few months it's spread to include the tops of my feet and ankles, and I feel it moving up my legs. I'm a person who wants to have life organized. That's not possible with neuropathy because every person has their own unique progression. The neurologist can tell us that it is a progressive illness, but they can't predict a prognosis.

You said that the pain is bad at night. Are there other times when it flares up? Every time I lie down my feet jump up to at least 8. Same thing with the recliner. Are there any things that you've found that ease the pain? Have you tried many medications? I hope you will hit upon the right one sooner than later.

I had a Burst DR spinal cord stimulator implant in June of 2015. It was wonderful! I had 80% pain reduction. It continued to be effective for a year. During the second year I had to get the settings adjusted every 3 months. Since the start of 2018, the adjustments have been less and less helpful. I turned it off for the month of March, and then turned it on again, and I could feel no difference. Again, we are each unique in how we respond to the multitude of treatments. For some people, the SCS implant is effective much longer, while others don't find it effective at all. We just move on to the next treatment options.

Jim