Non-Length Dependent Small Fiber Neuropathy

Have you tried Kratom. It’s a powder from the leaves of the Kratom tree. It attaches to the opiate sites in your brain faking out your brain that you are on narcotics. It’s non addicting, you don’t feel weird or buzzed, just no pain. I also use gummy THC and that helps with pain. Norco, Morphine, Valium, clonazepam Tramadol, Fentanyl, and the biggie methadone all help. Have you tried any of these?
I wish you the best.

I am a giant mess from non length dependent. Despairing of life. These forums are very hard for me to take because I’ve found nothing that helps and most people with length dependent don’t have a clue of what you’re talking about…but they think they do.

My neurologist says SFN is alway non-length dependent. My two skin punch biopsies back up that claim because the percentage loss in epidural nerve fiber density was equal at the thigh and distal leg. The time interval was 13 years. I also had sever restless leg syndrome as a child along with muscle contractions in my chest as a teenager. None of the classic SFN symptoms showed until my mid40’s, when I was diagnosed with impaired glucose tolerance. It could be in my case and others that genetic and autoimmune factors conspire with metabolic dysregulation to cause SFN. I experienced tingling and sparks all over my body, including genitals, face, tongue and lips. I also suffer from dry eyes which could be dysautonomia. So far no issues with bladder and bowel.

I’m finding a combo of Tramadol and Lyrica really helpful for pain. Also IV Alpha Lipoic Acid has reduced pain and heaviness in my arms.

How do you mean SFN has ruined your teeth? I have dental symptoms sometimes but hadn't connected them to SFN. What should I prepare myself for?

@kathleen123. I was recently DX with patchy NLD SFN. My symptoms of burning sensations, pain, numbness and tingling are only in my feet-mostly in my right foot. I’m on 2700mg of gabapentin but I’m not sure it is really helping. My doctor ran some blood tests to determine the possible underlying reason as it’s not diabetes. It might be Fabry’s Disease, which I’m still investigating. It’s frustrating and sad to get an SFN diagnosis since they just look at you and say “we will treat the symptoms” and it “may or may not progress up or down your body.” I try to stay positive and I make sure I advocate for myself as you really won’t get any help if you don’t push the doctors for tests and changes in meds, if needed.

How is neuropathy affecting your teeth?

The neuropathy is controlling my sweating abilities and also the saliva that protects our teeth. When there is not saliva it exposes your teeth to a gamut of issues. Most cause cavities in almost every teeth.

It is very discouraging to have non length dependent neuropathy. I may have it throughout my entire body, or just in my legs and arms. It’s horrible when it’s in your face and mouth. You literally cannot brush your teeth. It feels like you’re brushing with a wire brush.
Unless you go to a specific neuropathy physician you will continue to get those non helpful answers. It’s true there is no cure, but caught early it can be slowed down. Find a good neurologist. Mine was a 8 hour round trip but as hard as the drive was on me it greatly benefited me and resolved several issues.
I’m realizing that the majority of neuropathy is idiopathic. They may never know how we got this. It’s a terrible disease and because you “look” normal you often don’t get support from your family and friends. This includes you primary physician.
My heart goes out to you. Just remember to eat well and take vitamins that address your issues. Today you will be better then tomorrow. 😢

I have not been diagnosed as of yet, but have a biopsy scheduled in a couple of weeks. My neurologist believes I have this since all other testing previously has been normal. My symptoms are only in my feet when I am laying in bed as I first wake-up (mostly just the pins/needles as if they're asleep feeling and then pain follows but slowly subsides when I get my day going) as well as at the end of the day in the evenings. Majority of my constant symptoms are in the arms, hands, fingers and then at the end of the day like clockwork (literally - it's around the time the sun has set fully) is when everything goes haywire & my body is short-circuiting. The tingling, numbness, "rubber band snapping"/TENS feelings all throughout my arms, shoulders, more prominent on my left side and on the left side of my face, above my lip, neck. Based on what I've read, since I'd never heard of SFN before, my symptoms do seem to lend more to the non-length dependent version. I have been diagnosed with MCTD, Sjogren's, Fibro, Hashimoto's, Cervical Stenosis and I feel like I'm forgetting something else. But the SFN is not diagnosed, this is just what I've drawn the conclusion of based on my Google Doctorate 😉 to try to understand why my body has decided to punch me in the face about 2 yrs ago and hasn't stopped kickin my butt since! I'm 41 yrs old & feel like I'm a "lived hard" 80 yr old!