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Treatment options that have worked for Small Fiber Neuropathy
Neuropathy | Last Active: Apr 20 2:04pm | Replies (106)Comment receiving replies
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
Replies to "Good evening @moakes. Welcome to Connect and the membership in the group dealing with SFN, (small..."
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
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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