My experience with Small Fiber Neuropathy

Hello @djroberts, welcome to Connect. I also have small fiber peripheral neuropathy and stopped drinking alcohol after I was diagnosed. I can tell you that alcohol is a big no no when you have neuropathy. Lots of evidence...

Foundation for Peripheral Neuropathy
-- https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/alcohol/

Alcoholic Polyneuropathy: Nerve Damage Affecting Sensitivity, Coordination, & Function
-- https://www.alcohol.org/comorbid/polyneuropathy/

I'm also considered a pre-diabetic but have been that way for 20+ years but my A1C has always been right around 5.8 to 6.1. I have found something that helps me but it may or may not work for you. You can read my story here:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I just have the numbness and tingling but no pain in my feet to just above my ankles. I had an EMG and a few other tests before I met with my neurologist and was diagnosed.

@djroberts are you able to share a little more specifics about your symptoms? What specific tests have you had?

John

Thank you so much, @johnbishop

I'll read up on all the links this week.

My symptoms (I like lists):
I get pins & needles mainly in my feet and occasionally my hands. These episodes typically last days then go away. I usually wake up with them. It appears that walking and exercise help. Sitting and laying seem to contribute to the issues but I'm not sure.

I occasionally get sensitive patches on my forearms. I have developed two numb spots on my left foot. Right at the back of the heel and on the top of the foot. I sometimes get sharp stabbing pains in my toes and very occasionally my fingers. Sometimes I'll get a stabbing pain in my toe and somewhere else higher up on my leg at the same time. Completely synchronous.

My nerves can become hypersensitive. For instance, sitting I can start to get pins and needles within a minute but it goes away fast if I stand. This seems to be worse if I've been drinking lately. I stopped completely a week ago and before that I had cut down to just a couple of drinks a week. Beer seemed to affect me those most. Occasionally if I hold my phone too much the next morning I'll wake up with pins and needles in the spots where I held my phone. Also, occasionally, I wake up with ulner nerve inflammation symptoms. Usually on my left. I bought a thicker pillow which seems to help. It again seems like drinking alcohol makes me more susceptible to it.

Lastly, I feel like I may have had some of the autonomic symptoms with sweating and light headedness but it could just as easily been anxiety given all the news I've been absorbing.

Tests:
I've had nerve conduction tests, poking, reflex and various blood tests. I pass all the major nerve tests as many of us do with SFN. I need to follow up to understand some of the more recent blood tests but I think we've ruled out some rare conditions and Cecelia. My fasting blood glucose has been hovering at 100 for many years. My cholesterol has been around 280 with triglycerides at or higher than that. Quiting alcohol and eating better has dramatically lowered them. I believe my total cholesterol is around 200 now and my triglycerides are 168.

Curious about:
I'm vary curious about the affects CBD (topical and other), marijuana in general, and Sildenafil (generic Viagra) might have. I've read some studies on Sildenafil with rats. My neurologist seems open to a skin biopsy which I just requested. I'm hoping to get an official diagnosis followed by genetic testing. I read that a mutation in SCN9A is something to look for and could influence the type of treatment. I have all my DNA sequenced but I don't know how to read the raw data correctly.

I'm curious if you know. If my symptoms are caused by alcohol. Is it probable that completely quiting may stop the progression? As in, it won't get worse? I'd like that to be the case of course. It's scary to think it'll keep getting worse. I'm only 44.

Hi @djroberts, we have another discussion on Connect that may be more helpful in meeting others as it has more members following that will see your posts. I would recommend reading through it to see if something stands out to you.

Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

There is also an active discussion on CBD oil that might answer some of your questions here:L

Groups > Bones, Joints & Muscles > CBD OIl
-- https://connect.mayoclinic.org/discussion/cbd-oil-2/

I wish I could answer your question on symptoms from alcohol but I'm not sure anyone knows since each of us are a little different.
I would just focus on doing what you find doesn't make it worse.

I to have small fiber neuropathy due to drinking and being prescribed flagyl for an infection.
When I first stopped drinking my feet hurt, burned,felt bruised on the bottom. I was crippled. I started researching and found that taking B vitamins would help . WARNING they will help if you are deficient I was not and it set my feet and legs on Fire. I was in such pain I contemplated suicide. Always consult a doctor never self medicate even with vitamins. I stopped taking the vitamins and was prescribed cymbalta. I could not handle the side effects of cymbalta so I switch to amitriptyline. Between amitriptyline and physical therapy to strengthen my feet and legs I have got my life back. If a doctor tells you that you are going to have to live with the pain see someone else. There is hope out there. I spent thousands of dollars and saw multiple doctors before I found any relief. I just had nerve decompression surgery on my right leg . Six weeks post OP I have increased strength and the constant vibration that I was experiencing is gone. It's still to early to tell if the surgery is worth it .
DON'T GIVE UP HOPE

Stop Drinking and be patient. Some damage may be permanent but not all. Nerves take time to heal.

Hi, @fbell330 - welcome to Mayo Clinic Connect. Sounds as though you have been through quite a journey with the foot and leg pain. Thanks for your words of hope for those dealing with small fiber neuropathy.

You mentioned side effects that you felt you could not handle with the duloxetine (Cymbalta). If you are interested in sharing about those experiences with others, I think those in this discussion about that medication would be interested https://connect.mayoclinic.org/discussion/cymbalta.

Are you experiencing any side effects on the amitriptyline? If so, what side effects have you noted?

@djroberts - how are you doing? How are the sensitive patches, pins and needles and other symptoms you mentioned?

Hi. I've been diagnosed as pre Diabetic and also have peripheral neuropathy in my feet& legs. Nothing was helping until my Rheumatologist put me on a medication called Nortriptyline which was supposed to help me sleep & it started working after a week. Can't tell you how happy I was!! It was such a nightmare night after night stabbing burning pain in my toes and arches of my feet!! Also I heard a vitamin supplement called Alpha Lipoic Acid could also be beneficial so I started taking that too & I'm feeling a positive difference!! So perhaps at your next Dr
Appt you could discuss this with your doctor to see if these could possibly help you. Let us know ok?

I just came across this post and now find myself in the same boat. My neuropathy started as a sensation a hot water being poured on my right anklet feeling last spring. It stayed that way for some time and i chalked up to the healing of a bad cut on my shin at that time( thinking the nerves were healing) It later progressed up my leg, into the other foot and eventually from the waist down on both sides becoming more symetrical. It is definitely more pronouced in my feet. The hot sensations into a numbness if I don't walk, remove my shoes or move around. A bath or water on my feet help. I have a diagnosis of small fiber neuropathy but do not have a cause. My understanding is that alchohol and diabetic neuropathy doesn't behave in this manner. I eliminated alchohol for over a month and a half with out much improvement. The systems move around and vary but the general trend is getting worse.

Curious to se if you found anything out? Thanks

@carbo

What tests have you done to diagnose sfn? I had a nerve conduction study years ago because my feet were tingling. I've had a number of tests since then. My feet and ankles have burning pain, worse if I walk very far, and if I'm standing still, and when I lie down.

What meds have you tried? Have any of them worked? There are lots of meds for neuropathy, and there are many more meds that are usually prescribed for other things, but off label are sometimes helpful for neuropathy pain. It can be a really long process of trial and error until you find a medication that helps with the pain, without unacceptable side effects. A lot of people in neuropathy discussions have shared non-prescription solutions they've found.

Jim