Hello Larry @oldshep, Welcome to Mayo Clinic Connect. I also have idiopathic small fiber peripheral neuropathy. I posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

I know it can be frustrating trying to find something that helps with the symptoms of your PN. Can you share a little more about your symptoms and any treatments you have tried?

Hi,and welcome, @oldshep

My hand is raised. I also have idiopathic peripheral neuropathy. I visited a neurologist around ten years ago because of tingling in my legs and feet. He did a nerve conduction study and told me that I had idiopathic pn. Idiopathic is a fancy word for "I'm clueless about the cause". By two years ago, after trying every medication available for neuropathy, as well as a string of meds prescribed by my pain specialist, and nothing helped except for morphine sulfate contin. Lyrica was working for a few weeks until I had a bad reaction to it and had to go to the ER and stay in the hospital for a few days.

In June of 2017, I had a spinal cord stimulator implant because I was experiencing such pain in my feet. I had 80% pain reduction. It felt amazingly wonderful. It continued to be effective for a year or so, then the pain started to get worse again, so every 3 months I meet with the company rep, and he adjusts the settings, and I feel better again, until it's time for another adjustment. Even though there are days when the pain is bad - usually because I did a lot of walking - it's still better than it was before the stimulator implant.

Recently, my pain specialist had me try yet another medication, and Surprise! It works, and without the unacceptable side effects of meds I'd tried over the past 5 years

I've had autonomic neuropathy added to the mix. It's in the early stages, so the symptoms are manageable at this point. Several medical issues I have could be attributed to it: Tinnitus, double vision, urinary, numbness in my fingertips and face, starting to be clumsy, sudden loss of knee muscles that puts me on the ground with no warning.

Everyone progresses at their own pace, making it impossible to give any kind of prognosis. We learn to take it as it comes, which is a good way to live anyway. Have you experienced progression as I have? Where does it affect you?

I think you'll find some answers to your questions as you read what others have said about their experience. I've learned a lot about all kinds of things here at Mayo Connect, and even more importantly, I've found great support here.

Again, we welcome you to Mayo Connect. I hope you enjoy your stay.

Jim