Treatment options that have worked for Small Fiber Neuropathy

Hi Ed @njed, I saw a neurologist at Mayo Rochester back in 2016 before we had the pandemic and all the current pressures on the healthcare system. I did have a 3 month wait after a referral from my local Mayo Family Health Clinic and my primary care team. I think it was much easier back then.

John, I applied in Sept of 2019. Got a call about 60 days later, can I come to MN in mid February. Sure! I have a friend in St. Paul...he said pack your gloves, it went to 25 below. You are right, I think the application process was considerable easier and I had some very odd things going on in 2019 which I think peaked the curiosity of their medical team. I went thru a lot of testing up to that point with no clarity that we all seek. I provided them with a letter from my neuro doctor and all my test results to that point so they could see I tried on my end. That might have made the difference. Ed

How did it help you in any way to be accepted at Mayo other than to just confirm that you had neuropathy?

Have any of you been able to pinpoint when and how the pain is not so bad that you can enjoy being out and about vs waking up to a pain filled day? Weather conditions outside, what activity you did the day before, something you ate/drank etc.?

@bettyg81pain How did it help? Well, I found out that I did not have something of a life-threatening condition. At this time, someone close to me passed away from ALS. He started with numbness, difficulty walking. So, the concern I had is what did I have and what was the cause. Let's face it, there are a lot of things out there way worse than PN and I wanted the best place to give me the best answers. They did tests that no other facility did so I left with no cause for my PN but found out what might help me cope with PN.

I'm with you. It's been a strange, frustrating, and sometimes depressing experience for me since neuropathic pain became a chronic condition for me somewhere between 8-12 months ago. I had symptoms before that, but the condition didn't take up permanent residency in my body till then. Frankly, I didn't know the first thing about neuropathic pain like this until I was forced to confront it, and wish I had taken better notice of the symptoms and where they could possibly lead to. Oh well.

Foot pain is my primary source of concern, followed by achy ankle and knee joints, and calf discomfort. My foot pain fluctuates between a 1 1/2 to 2 level of mild discomfort all the way to what I'd categorize as an 8 1/2 on the pain scale where I become almost dizzy from fighting back the pain and a bit nauseous at times from it as well (you know...those times when no matter where you are you're running for a place to sit and take your shoes off, or about ready to scream when you're waiting in a check out line at the store).

I went the diagnostic route from foot and ankle specialist, to orthopedic doctor, and finally, recently, to a nerve specialist. Thank heaven my school district health insurance covers all of these things. The best diagnosis I've gotten was that originated in spinal deterioration (not diabetically induced or seemingly otherwise), and that it is probably small fiber neuropathy (still learning what that means).

I didn't want to go the heavier/addictive pain killer route, or even the "Lyrica" route (was prescribed to me and built up a stash of it) until I had exhausted every alternative route I could find to mitigate the pain. Some of these have been:

--Chiropractic spinal manipulations
--Body massages
--About 25 minutes most every morning of PT/stretching/yoga exercises
--All sorts of vitamin supplements such as the B complex family
--Ice baths for my feet (it at least serves to numb the pain when it's been spiking and remaining high for some time
--Torturing my feet/legs on weight machines at the gym in an effort to pump more blood circulation into my legs and feet
--Etc...

Sadly enough, no silver bullet from all these alternative attempts, though they may have staved off more severe pain cycles. I don't know.

I finally gave a little over a week ago to "Lyrica" after being reassured by my primary doctor and neurologist that the side effects I worried about were *likely* not to be as much of a concern to me as I feared, and that many of their patients had responded positively to their pain mitigation effects.

So far I can't say for sure if the drug is working or not. Not enough time. I've been told it could take as long as two weeks or more for them to fully go to work. We'll see. I'd love to hear of others who have tried this med. Currrently I'm taking 75mg of it twice a day, morning and evening. If I get even a 30-40% reduction in my pain symptoms, I'll be thankful for that. The only side effects I'm feeling is a *slight* narcotic feeling in my brain, and a bit of drowsiness during the day. There is one positive about this side effect in that I'm sleeping more steadily through the night.

By the way, I'm 65, an English/PE/Health teacher in middle school and a basketball coach, so I'm on my feet much of the day (sometimes in socks, and my fellow workers and administrators know why and are fine with it. The hardest thing for me dealing with this new condition is the enormous amount of mental and emotional energy I have to expend to beat down the pain in my mind so that I can remain the positive and joyful person I want to remain in my learning community and professional environment. Most of my weekends now are about convalescence and recuperation from the week (couch sitting).

Anyway...that's where I'm at with this insidious little monster now.

Hi, @bettyg81pain, After starting the Auto Immune Protocol diet: https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet I found that avoiding sugar made a huge difference in my peripheral neuropathy. With sugar in my diet I have severe burning sensations in my feet and hands, pinpricks on legs and arms and bad (deep) cramps in leg muscles. Without sugar I just have tingling and some numbness in feet and hands.
Good luck to you! Did you ever think that you would have a life that plays out like an endless science project? Me, either. :0
ebero

Were they able to do anything, if what or prescribe anything that made your life better,if so, what?

What did you find out?

What did Mayo do for you? Did they give you anything that helps Small Fiber Neuropathy? Any treatments that work?