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Small Fiber Neuropathy?

Neuropathy | Last Active: Feb 12, 2023 | Replies (214)

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@jimhd

@somisgirl I also have idiopathic small fiber peripheral neuropathy, and the beginning of autonomic neuropathy. All five of my siblings and our father had or have it. My siblings have been able to treat it, and I don't know if any of them have the burning pain that I do. The disease seems to be different for each individual.

One thing I've learned is that it's a progressive disease, and there's not a confirmed cure, though there are many meds and other things that treat the symptoms, as @johnbishop explains so well.

I've tried every neuropathy meds and a long list of medications that sometimes help with the pain. With only a few exceptions, they either didn't have any effect on the pain, or had unacceptable side effects. Two years ago I had a Burst DR spinal cord stimulator implant, and I had significant relief. I'd forgotten how it felt to be nearly pain free. Over the two years, the Abbott tech has had to make adjustments to the controller every 3 months, because the pain will gradually worsen. Understand that this is my own experience, and that many people have a much better outcome, over a long period of time.

I'm seeing a doctor tomorrow to discuss a dorsal root ganglion stimulator implant, which targets the areas of pain more precisely. I'm not sure if I'll try it, but I'm still doing the research on it, which is pretty sparse because it's a new product. On Monday, I have an appointment with the pain specialist, and I'll be talking about it with him. I'm also going to ask him about a medication pump.

One thing that I did was have six sessions with a pain therapist, and I use some of the tools she taught me. The pain in my feet might be only a 5 or so during the day, but when I lie down to sleep, it shoots up to 8. That's when the therapist's practices help.

I still hold out hope for a non- narcotic solution. I'm trying to take as little morphine as possible, but it's the only thing that has touched the pain. Actually, a couple of meds did help. Lyrica was one, but after just a few weeks, starting at a low dose, it put me in the hospital. I was incoherent, had no memory, etc. Bummer. I tried desipramine a couple of months ago and it was helping, but I had to run to the bathroom up to 24 times a day. Not acceptable!

Read all you can, with an open mind, along with a little skepticism. There are certainly scams in abundance to beware of. But I'm confident that there's something out there that will give you the help you need.

Jim

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Replies to "@somisgirl I also have idiopathic small fiber peripheral neuropathy, and the beginning of autonomic neuropathy. All..."

I read you response and was so touched by your pain. Mine is nothing like this yet but I appreciated your sharing your experience and situation. Everyone in this group is amazing. The courage they have and willingness to share has meant a lot to me. It's only been one week since my diagnosis but the Mayo Connect has been a godsend...Pam