A couple questions about SFN.

1 - Is it normal to have SFN without any changes in pin prick, soft touch, vibration, and temperature sensation? The only symptom is paresthesia (tingling, burning...etc)?

2 - In the worst case how would you describe the progression of SFN? If you have this for 40+ years what should you expect as far as symptom progression?

Great questions! I want to know the same.

I have no loss of sensation at all.

I have burning, tingling, buzzing, twitching, creepy-crawly sensations, and not too badly anymore...zapping nerve pain.

One thing I also felt before the acute onset of all symptoms was the feeling of cold water running down the back of my left ankle. That went away when all the other symptoms hit.

I'm new to this but my concern from what I've gathered is the autonomic system is largely controlled by small nerve fibers. I hope if what I have is SFN it doesn't affect my organs.

I remember my Chiro saying that if I sat on the toilet and the feeling was distant or remote that this was a reason to get to an ER and tell someone. You could use the search engine with the word autonomic and on the right side of the page find SFN or Neurapathy. Good Luck, Ken in Texas.

lol I don't understand. Are we referring to #1 or #2? Distant or remote?

One very rudimentary test I've done is to check my pulse rate from lying flat to standing to check for signs of orthostatic hypotension. I haven't seen any significant increase in heart rate. Thankfully I've never fainted in my life but I have gotten dizzy a few times standing up too quick.

If you cannot empty your bladder it is an emergency. In my case I had the opposite problem. My bladder was empty but there was a strong urge to empty it 24hr a day. This was absolutely horrible with no sleep and going over 100 times in a day for over a week. Guess what gave me relief? Anxiety meds.

Make sure that when you do this heart rate test you wait at least 2 minutes after standing and then measure. The key is sustained increase in heart rate IIRC.

While you must absolutely see a neurologist you can also do an almost full neurological exam on yourself including reflexes, strength, sensory, and all the provocative tests. I did this and it exactly matched what my neurologist found which was nothing.

I have head to toe SFN symptoms, with the worst burning on my face, arms, feet, and back of my head and neck. Even my butt, labia, left eye, and left side of my throat burn and hurt sometimes.

I was originally clinically diagnosed with small fiber neuropathy based on my description of symptoms (wet and warm running water, burning, buzzing, tingling etc). Also during my neurological exam they found that I have temperature loss from my wrists to mid way up my forearm. It often hurts to wear sweaters due to the material touching my arms.

However, they biopsied my leg in 2 spots (I asked them to biopsy my arm, but they said they don't do that) it was negative for SFN, so I think my technical diagnosis is "skin disturbance", which is ridiculous. But I was told that I need a pain management doc....because really their treatment path is the same - take medication and live with an idiopathic condition.

I'm one year in and my symptoms aren't as bad as when this started in an acute way, with a tremendous amount of pain and burning that drove me to go to urgent care and the ER several times. I am taking 2400 mg of gabapentin and a small dose of nortryptline, so I'm probably masking a lot of the symptoms. Now, when I wake up in the morning, it feels like someone sandpapered my arms, neck and face while I was sleeping that night. I still get quite a bit of burning as well.

To confound this picture, I also developed a vestibular problem at the onset of this with wet, warm and hot sensations in my ear. The ENT has diagnosed me with a central vestibular disorder.

So my story is a little different - neurological deficits found, but small fiber neuropathy not technically used as a diagnosis.

Thanks...I have an EMG Monday and already had some blood taken by a neurologist. No diabetes or inflammation.

Reminder.... there are 4 types of nerve fibers in the periphery.

So if only certain ones are affected, the others may still function.

http://faculty.washington.edu/chudler/cv.html

These are sensory mostly-- afferent which means sending signals back to the brain.

This is a link explaining efferent fibers... from the brain to muscles for movement and organs:
https://faculty.washington.edu/chudler/nsdivide.html