Small Fiber Neuropathy: What helps?

John, @johnbishop , I don't wear socks for the same reason as you. I've found that they act as a barrier to the sheets. If I don't wear socks, my feet really hurt from the contact. I used to use a blanket lifter, but we got a new mattress that's too high. One of these days, I'll come up with a solution. The lifter is a real help, but it's a challenge to make a neat bed. Lidocaine cream really helps by numbing my feet, so I can get to sleep. A challenge I've had is finding socks that are large enough and loose enough. I wear size 14-16, and often they're ok the first time I wear them, but they always shrink down to size 12-13. I've found one brand on Amazon that stay loose. They're not Gold Toe, but I only use them for sleeping.

Jim

Jim, I have the same problem finding socks that are large enough. I wear size 14 and can't stand the tightness of socks although I don't have pain, just the numbness.

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.

I'm unsure of the effect on appetite and sleep, however, the bladder/bowel issues, and tremors can be directly related to your diagnosis.

I had 3 puncture biopsies done recently. The ones below my knee showed normal, but the one just above the knee indicated small fiber neuropathy. I also had a nerve conduction study of my hands, and an audio evoke test. They both indicated neuropathy, with slowness between the ear and the brain stem. Myelin deterioration was also seen. The neurologist prescribed azathioprine to slow the deterioration. He mentioned Lupus, but didn't elaborate, so I think that was an incidental symptom. I haven't yet researched sfn or myelin. I'll probably do that when I get home from church this evening.

What is sfn? I know I have idiopathic peripheral neuropathy, but I don't know what sets sfn apart from regular pn.

I take Myrbetric for sudden urge urination, and have a weak stream. I also have esophageal dysmotility in the lower half of my esophagus and choreiform movement of the base of my tongue, and weakness in the tongue muscle, which means it doesn't generate enough pressure to move food down the esophagus. All of these things are quite possibly further symptoms of neuropathy. Tim @squaredancer has been through the swallowing problems, much further advanced than I am. The ENT doctor said that the tongue issue isn't an imminent concern.

So, I guess this all sounds pretty familiar to you who are reading this. Maybe you would have some input that would bring me better understanding of the various things that are going on in my body.

Jim

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

Diagnosed with SFN after a Sweat Test at Mayo in January 2017; took gabapentin even though it did nothing for the numbness in feet and calves but did help with sleep. July 2017 drove cross-county from Massachusetts to Missouri, but by December 2017 I had to stop driving completely as I had no feeling in my feet. Also during the 6-month period, numbness, pain, tingling, etc., spread up both legs and up to my waist. Now using a cane and waiting to have electronic hand controls installed on my car. Having a great deal of body awareness, I've been saying that there's something going on in my very, very arthritic, scoliotic spine. Wasted those 6 months waiting for an appointment with a neurologist at Wash U Medical School, thinking it was easier to get a friend to drive me to St. Louis than to Rochester. But that appointment turned out to be a total waste of time and money. Now working towards getting back up to Mayo (when I can drive there!) to see neurologist and spine specialists and see about a nerve biopsy and possible spinal conditions that could cause my symptoms.

Clinical trials for what? Neurologist at St. Louis said that it's small fibre and large bundles, and I've no, really NO feeling in my feet. Knew I had to stop driving when in order to drive I had my left hand on the steering wheel and my right hand on the emergency brake. I'm definitely NOT giving up driving, so I'm having Kempf electronic hand controls installed on my tiny Prius c.

I still hold out hope for treatments that "repair" damaged nerves instead of just treating the symptoms. Drugs that are now being used do nothing to help with the nerves themselves, all they do is "trick" the brain into blocking the pain signals (my non medical training or background words). Before I saw my neurologist, my doctor put me on gabapentin and it did nothing for me. Then I found out it doesn't do anything for numbness so I stopped taking it.

The only real caution is that there are a lot of companies out there making money off of folks with PN who are in extreme pain. What they offer may or may not help so you have to be your own advocate and do your own research.

John

@steeldove, the Kempf electronic hand controls for your car sounds like it will be a big help for you. If possible can you share how it works for you?

Good luck!
John