Connect
← Return to Small Fiber Neuropathy?
Discussion
Comment receiving replies
Yes, I have been positively diagnosed with this. No one in my family has it...I am a 60-year-old woman, very active and in otherwise excellent health. This started with some pain in my feet which I assumed were a foot issue! Went to a podiatrist (two, actually) and got new insoles. Things just kept getting worse. Pins and needles, burning in both feet radiating up my legs. That's when my podiatrist sent me to have the nerve conduction tests. I had two and both came back normal. I had extensive blood work done, everything normal. Next was two "punch biopsies:, 6 months apart, that showed progressing small fiber degeneration. I now take 600mg Gabapentin 3X a day and a compound cream 3X a day to try to keep the symptoms at bay.
I am 5'11", 132 pounds. I have been a avid gym member for over 20 years. My diet is very healthy. .I have never been on any long-term medication in my life until now, and I am desperate to find out the cause rather than just treat the symptoms. And I do not want to take any opiods. I just want to find out if there is anything that I can do to reverse this condition. And yes, I have been on many of the nerve-regenerating vitamins with no results.
Replies to "Yes, I have been positively diagnosed with this. No one in my family has it...I am..."
I am in the same boat. Run, hike, swim 115 lbs 5' 8". Paleo diet. Eat no sugar. Idiopathic. Feet burn all the time mostly at night. Desperate for help...diagnosed with SFN two days ago...
@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
Connect
@somisgirl, I don't have the pain with my idiopathic small fiber peripheral neuropathy but I also was concerned about it progressing and was looking for something other than drugs to help. I found something that works for me and may or may not work for you but it may be worth a try. You can read my neuropathy story and what helps me here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985. I tried a few of the so called nerve regenerating vitamins with no success also.
I'm not sure if this is helpful but it may give you a better understanding of how neuropathy is diagnosed and why it sometimes is idiopathic because they are not able to diagnose a specific cause.
This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.