Treatment options that have worked for Small Fiber Neuropathy

What treatment options did Mayo Clinic give you that actually work?

@bettyg81pain What did I find out? First off, when I went to Mayo in MN in 2020, I had no idea what to expect and as we all well know, the longer you have PN, the more you find out. After a battery of tests that stretched out over 3 or 4 days, I was diagnosed with idiopathic axonal sensory motor PN both large and small fiber. At that time, I was just developing drop foot. Tilt table test did show no autonomic features. What you find out is what you have and don't have. They suggested that physical therapy would help in that it might slow down progression. I went to Mayo not expecting a miracle, what I wanted to know is what was going on. To answer @kfrenc04 question, the treatment options did not exist for my type of PN. There is nothing to fix damage to axons. I do not have pain and they suggested I do not take Gabapentin or Lyrica, Mayo said at times, in my case with no pain, these meds can make numbness and poor balance worse. They suggested taking Alpha Lipoic Acid each day, some evidence suggests is helps, been taking this since 2019.

How much Alpha Lipoic Acid did they suggest you take each day?

Good evening @moakes. Welcome to Connect and the membership in the group dealing with SFN, (small fiber neuropathy), First question.......was your diagnosis the result of a skin biopsy? If I read your introduction accurately, you have had pain throughout your body since September 23. If appears that right now you are worried about the SFN pain and numbness symptoms increasing in your feet.

At this point in my experience, I have somehow survived 11 years of SFN. Since my diagnosis, I have tried many different approaches to controlling the following symptoms.....numbness, pain, and the horrible neuropathic itch. I remember the first indication of a challenging future was when my neurologist sat down and related the results of my skin biopsy. He finished discussing the medical details and started to get up. Then he sat back down and said, "I am so sorry that your results are positive for SFN. " At that moment I realized that my future would be challenging.

Since that time, I have endeavored to become aware of options old and new, medications, exercises, physical therapies, diet additions and changes, walking assists, mental distractions, and mind-controlling practices. I have tried many medications like compounded lidocaine applications, gabapentin which was increased to a high of something like 2700 mg per day, topicals applied every morning and at bedtime, balance exercises to avoid falls, special shoes to enable my feet to know the difference between a brake and gas pedal, ice and heat as needed, distractions like books, movies and social outings with family and friends.

To cut to the chase, I will share with you my current SFN portfolio entitled HELP that WORKS. My medication is a combination of medical cannabis tinctures, duloxetine, and ibuprofen plus anti-anxiety pills of buspirone. My physical therapy amounts to two sessions a week of MFR (myofascial release therapy) with two therapists attending. The major focus is my feet and each of the therapists participates. Time is spent wherever a restriction has occurred throughout my body. Hopefully, I will be able to continue to drive and enjoy a walk along the river.
To control my mind, emotions, and thinking, I practice mindfulness every day and attend a meditation session once a week. My mornings start with 15 minutes of stretch yoga, and on Tuesdays, I have a one-hour yoga session.

So this is my life. Every day I seek joy by checking out my Mayo Connect daily digest, exchanging messages with grandchildren, and spending time with my lifetime partner.

I have to go to bed now and I hope you will respond with any inquiries or thoughts this post may have generated.

May you be safe, protected, and free from inner and outer harm.
Chris

Mayo did not suggest a specific dosage of alpha lipoic acid. I currently take 600 mg of R - Alpha Lipoic Acid daily approved by my primary doc. I did try 1200 mg daily but at times, I saw an increase of heart burn. 600 works well for me. Does it help? Not sure but it was also suggested by 2 other neuro docs.

@njed Ed, has any neurologist indicated how long we should continue taking the R-Alpha Lipoic Acid? I take 600mg twice a day. I have not been able to see a neurologist yet, so I am taking the RALA based on info I have gleaned from Internet, youtube, etc. I have not noticed any huge difference in my SFN as a result, but I continue to take it. Is this a regimen you see yourself continuing for life? Thanks! Mike

I appreciate everyone's input on this thread. It does, indeed, help to just hear of other people who are searching for answers to the same issues and problems. I first noticed my PN in my feet after my laminectomy in Nov. 2022. For a year before that, stenosis had created so much pain in my hips and down both legs that I could have already been experiencing the PN and not noticed it. After the laminectomy, the pain in hips/legs was gone.... but I soon noted that I had numbness and pins-and-needles feelings in both feet. And I also noticed that my balance was a bit off. Since that time, I have begun taking Benfotiamine and R-Alpha Lipoic Acid daily. I went to PT for about a year and while that helped, the symptoms remain. Thankfully, as of yet I do not have much actual pain .... just some burning from time to time. I am able to walk, and I usually take a cane with me if I'm going some distance... just in case. So far, no bad falls. The psychological impact is perhaps as great as the physical, as I worry about it getting worse and search almost everyday for any new treatments I may try. I was prescribed Gabapentin, but it made me feel loopy. Then I was given Lyrica, but I noticed no improvement and soon gained over 20 pounds, so I stopped the meds. This forum has been a blessing. Presently, I have an appointment with a neurologist in Atlanta in late June, and an appointment with a neurophysiologist in two weeks. Since I could not get in to see a neurologist, I asked my podiatrist if she could do a skin biopsy, which she did. Results were "beginnings of SFN" in both feet. She also sent me for an EMG that showed some remaining compression on nerves at the L-4/L-5/S-1 area. Could THAT be the cause of my SFN? I have no idea. The surgeon who did my laminectomy suggested that a fusion of L-4 through S-1 might relieve the symptoms of the PN I am feeling, but he obviously cannot guarantee. I've used CBD creams, Vicks Vaporub, Green Tea salve, Frankincense cream and RockSauce Fire.... and none of those seems to give lasting results, though the latter does leave my feet feeling warmer and a bit more relaxed for a bit. @memyselfi referred to the SFN as "an insidious little monster," and I can SO identify. I feel my body is being attacked, I am losing my ability to function as well, and I worry that it will become progressively worse. I'm a 73 yo male, by the way.... hoping for a few more birthdays ahead! Best to all... Mike

@domiha Mike, great question for which I have no answer. Mayo said it might be a good idea to take....and my neuro doctor who I see yearly said why not try..,,,and a neuro doc at the University of Pa said you might want to take....but not one doctor said for how long. I want with the assumption that if it helps in any way then continue. The dilemma is do you stop taking it and see what happens or continue. Would I be worse if I never took it. The only way I can determine it helps is to stop taking it which to me doesn't make sense. IF it even slows down progression, then it's worth taking. A big if. Ed

Hey Chris, all the things above in your résumé, beginning the first stages of SFN. My SNF was diagnosed in 2018. Everything you wrote I’m totally familiar with. I still drive, but I do it in the morning till late afternoon. my SNF actually shakes or quivers from the bottom of my feet, bypassing my thighs into my butt. Which causes, me to lose balance so I walk almost walk spray footed. Strange after 17 years, it’s gotten a lot worse. Did not know 17 years ago. It was small fiber neuropathy. The thing is, small fiber, neuropathy can be found also in children they call it pots. Small fiber, neuropathy does affect, your vocal cords on and off, after you eat, a softness, maybe some burning. It affects your brain, and cardiovascular, gut, and some people will sweat differently. When I’m extremely nervous, usually driving. Someone cuts me off. My feet and ankles just vibrate and tighten up into my calves.

Basically do hot water I used to soak in bats, but I move now I only have a shower, so I put a plastic container in there and let it fill up with hot hot water. After that I use, that I bought from Amazon. They are ice braces and they are have Velcro they go from the toes to the knees. I do that sometimes for an hour before I go to bed. My endocrinologist just took labs, not because he wanted to, but because he felt it was necessary, because I stopped asking questions for the last three years. He said that’s not your personality. He also saw I had many neurologist, and they don’t treat SFN. I am and have been allergic to every medication and put into the hospital. I had a triple bypass due to, hyper parathyroid. I was extremely active, my whole life, dancing, ice-skating, bicycling. Etc. Small fiber neuropathy causes dizziness a strange like on top of my head dizziness also comes and goes the question is this upon doing labs this time, he’s trying to find deficiencies or autoimmune , or even the fact that I only have one parathyroid that is showing a little on the hypo side. I thought I share this with you since you were so open and friendly and clear about your situation. I live alone for the last 23 years. And I just moved seven days ago did everything myself, and could not stand the pain. I actually thought so much to put me in rehab for three weeks so they could feed me and rub my body down and get me worthy for the world again . People don’t understand this condition, so the people I do tell they’re close other people I just say I have a disability that’s something you can’t see. Just had a birthday yesterday, March 15 officially 78 and I never had chances to celebrate I just didn’t want to. I was so in pain that I couldn’t even talk , I do believe, my research showed not counting China I think, over 80 million people have SFN I do believe it’s time to do research look forward to hearing more of what’s happening at your end or anybody, that can put a real good footprint to this disease because that’s what it is thank you

Chris @artscaping ,

thank you for the message. my skin biopsy actually was negative but I was told it could have been a false negative. most of my pain is manageable with 200mg of Lyrica 3x per day and 60mg of Cymbalta 1x per day, except my feet. they hurt pretty bad when I walk or stand for more than a few minutes.

I have been trying options such as dry needling, PEMF therapy, and acupuncture. not seeing any improvements from these treatments.

I have heard of myofascial release therapy but haven't tried it. has it worked well for you with pain in your feet? Have you heard of or tried Zone Therapy?

I appreciate you sharing what's worked for you.

Matt