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Small Fiber Neuropathy: What helps?
Neuropathy | Last Active: May 17 2:03pm | Replies (284)Comment receiving replies
Hello there,
I have been on a long, expensive, medicine filled journey to find the cause of my SFN. I have had progressive numbness in my hands and feet for several years. SFN can absolutely affect your bladder control. I have bladder retention, and other bladder and bowel issues because my autonomic nervous system is involved. I have a diagnosis of Lupus, with normal labs since diagnosis, and with progressive numbness, tingling, edema, loss of sensation, loss of hot/cold perception in my hands in feet. I also have tremors in my legs, and issues with sweating. It is frustrating, and as I use my hands exclusively in my line of work, the progression of this with no foreseeable reversal or cure feels very defeating. I just moved from one state to another, and have had to re-establish with new providers. The next step in diagnosis is a skin biopsy.
I wake up multiple times a night with pain, and complete numbness in my arms and hands. I wake up to swollen hands, and painful joints. I simply cannot afford to have my hands go numb during a procedure, and the medication available such as Gabapentin affects mentation. I am happy to have found a place of understanding in this group, as it is difficult for people to understand the impact of SFN on daily life. They see it merely as a nuisance, not life alternating.
Replies to "Hello there, I have been on a long, expensive, medicine filled journey to find the cause..."
Hi There
It is the first time for me to join in a group and talk about my sever pain from SFN . In my condition it is unknown reason , it is called Idiopathic . They tried all the nerve pain medication with me but my body get along with it so fast and the pain increases.
SFN affects my right hand until my elbow and my both legs until my knee . I feel burning , cramps and tremors in my legs .
Numbness, tingling, and painful .
I quit from my work due to my situation. Suddenly my life turned up side down . I can’t walk even 10 minuets or do any house duty and cooking .
Finally they give me Medical CANNABIS ( oil ) take it oral 3 time a day . It works better than other chemical medication .
It is legal here in Canada .
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Hello @changegonnacome, welcome to Mayo Connect. I also have small fiber peripheral neuropathy (SFPN). Mine was diagnosed as idiopathic which just means they don't know what causes it. When I finally decided to get a diagnosis I had already had numbness without pain in my feet for over 20 years. It started in the toes and gradually worked it's way up to just below my knees which is when I made an appointment with a neurologist to get a diagnosis and see what treatments would help. The neurologist told me there were no drugs or topical creams/ointments, etc. that would help with the numbness. They are pretty much just for the pain. That's when I started doing my own research and trying a lot of different things to see if I could find something that would help. I have to caution you as there are a lot of people making money off of those of us looking for the magic cure where none may exist. I started looking into nutrition at the cellular level after reading Dr. Terry Wahls story and getting her book The Wahls Protocol. Here is a link to her story:
http://terrywahls.com/about/about-terry-wahls/
Her book convinced me to start eating healthier whether it "fixes" my problem or not. I found something that has helped myself and others - an over the counter protocol of vitamins and supplements. Here is a link to my story:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985
Hoping you find something that works for you.
John