Small and large fiber is affected with my type of CMT. CMT is inherited.

When I rub or scratch my body (like if I'm itchy). The feeling of my fingers scratching or the pressure from rubbing lingers for a minute or two, does anybody else get this?

Not for a minute or two, but the referred sensation I get in my feet when I touch my body lingers for a few seconds.

My SFN has not progressed in the 18 months or so since its acute onset, and I'm actually better than I was last year. Whether that's due to some of the actions I've taken for it, or just having less anxiety about it...or neither or both...I don't know. I'm just happy to take any morsel of improvement that comes my way.

I emailed my Dr asking him for more info and he told me to meet him at his office. Here is the info I got

Left distal leg abnormal less than 9 my number was 7.27
Left thigh abnormal less than 8.3 my number is 8

It said no evidence of vasculitus or other histological abnormalities and no amyloid is detected.

There was no mention of condition of nerve fibers

My Dr didn't know what to make of the amyloid part and wants me to follow up the Neuro for an explanation.

Any good news about these results?

fyi my doc said to make sure I am consuming enough omega 3. Both forms fish oil and flax oil because each one contains important stuff the other doesn't. Flax oil should be a cold pressed oil, kept refrigerated and contained in a dark container. He also said flaw oil should be mixed with cottage cheese and one more thing ( he forgot but will email me) and that it should be taken on an empty stomach. This info came from the woman who discovered the benefits of omega 3 and the one who treated bill clinton

--is often referred to as "delayed summation"--the damaged nerves seem to be delayed in their response to weak stimuli but the response builds over some seconds until it is out of proportion to what it should be, and then it recedes over some seconds to minutes back to baseline (whatever that is for you).

This is actually quite common in small-fiber neuropathies and is also common with central pain syndromes that come from MS, Stroke, combined atrophy from B12 deficiency, and other syndromes that affect the spinothalamic sensory tracts.

I still get this, especially on my face, though it's certainly better than it was years ago during my most acute phases of this. And I do get twitching and a sort of rolling vibration at times in small muscles, as well as cramping, but I find if I take magnesium citrate religiously these are lessened.

The numbers on your skin biopsy report certainly represent a diminishing of small-fiber density, and they might represent a considerable one as who know what level you started at before symptoms. Since the procedure is rarely done on people without symptoms except occasionally for research purposes, no one can tell what your original normal levels of nerve fiber density were (they vary quite a bit, though they tend to lessen with age).

I am fortunate that my period of most severe symptoms lasted about six months and then the symptoms slowly--VERY slowly--began to recede. They are still not all gone, but I would say I am 90% better. Subsequent skin biopsies over the years have indicated I am getting some degree of re-enervation, though whether I could ever get back to what was normal for me is unlikely. Since no cause was ever found, I have to attribute the improvement to the resolution of whatever process caused all this in the first place--likely some acute autoimmune or "molecular mimicry" situation, and judicious dietary and supplement regimens.

Nerve regrowth, when it does happen, is ridiculously slow--about 1mm per day is cited even under optimal conditions. So small fibers that regenerate from sources in the spinal column down to the feet, say, may continue to re-enervate for years. AND--regrowing nerves often cannot take the exact same pathways they once did, and have to fight over, around, and through other tissue; one can get some really weird sensations when that happens, as the brain has trouble interpreting the signals from incomplete nerve pathways. This eventually dies down if the nerves are truly regenerating, but it feels often like an exacerbation of symptoms initially, which is why a lot of us keep long term symptoms diaries as this is not evident except in long-term retrospect.

Quote: emailed my Dr asking him for more info and he told me to meet him at his office. Here is the info I got

Left distal leg abnormal less than 9 my number was 7.27
Left thigh abnormal less than 8.3 my number is 8

It said no evidence of vasculitus or other histological abnormalities and no amyloid is detected.

There was no mention of condition of nerve fibers


4 1/2 months after my sudden onset I was in my foot and ankle dr's office for results.....I cried as he explained them.....cried from relief that I had a dx. All dr's said it was neuropathy but I really needed a solid dx. People react differently to their own dx's as I've discovered here at NT.

He used Bako Labs for my test and I haven't seen anyone else on here that used Bako. Their results are from 0 to 15.....15 being the best. Both punches were above my right ankle (my good foot) and they were 0.0 and 0.06. Really can't get any lower than that. The report explained that I had no A and C fibers left in my feet and the dx was Severe Small Fiber Neuropathy.

During the next year I had 3 doctors tell me to see pain mgmt. but I just couldn't bring myself to do it. I had the 'pill mill' thing in my head. My PCP had me on 100 mg 3 x's daily to begin with. After I started going to a neuro he titrated me up to 2700 mgs a day but I could not take due to hallucinations. 1800 mg a day wound up being the dosage for me. I know it works because I had to come off of it to start Lyrica (which gave me a horrible stomach ache) and was off of it for 6 weeks. I could not wait to get back on it. It only provides some relief but we'll take anything that helps. I also could not take Cymbalta because of hallucinations even at 60 mg.

Finally after 17 months of agony I made an appointment with a pain mgmt. dr. I picked him off the internet and was lucky enough to hit the jackpot the first round. We discussed all my symptoms and types of pain I was having. He put me on BuTrans pain patch at 5 mcg/hr and I have now titrated up to 20 mcg/hr and that is as high as he will go. He also gives me Percocet 10-325 up to 3 a day for breakthrough pain but it's actually part of my pain mgmt. since I have to take 1 to 3 everyday.

Short history is: Had burning in feet after work most nights but it was gone the next morning. Never gave it much thought. I was considered pre-diabetic and was on metformin for that. Got laid off after 26 years at my job, had a hysterectomy a month later and path report came back uterine cancer. A rare type called Papillary Serous. Since I had a total hysterectomy they felt it was probably all gone because it had not broken thru uterine wall but recommended 6 rounds of chemo due to aggressiveness of this type of cancer. One month after chemo ended (March 2013) my feet hurt so bad I couldn't walk and that is how my journey began.

And on it goes. Along with my meds I have to take 40 mg of Paxil a day. I was just a crying mess for so long. I was 50 when this started and just turned 53. I still have/had quite a lot of life and work left to do. The work part is gone now but not the life part. It's still evolving as the SFN does. I've had every symptom you can mention. My twitches hit me so hard that if I'm laying down and it hits my back it actually shakes/lurches my body forward.

It is better than when I started and as long as I don't walk/stand/drive/cook etc I do ok. I stop and go all day long and the go isn't much. I'm at home 99% of the time. I do drive when absolutely necessary but the vibration of the car floor boards and steering wheel sets my hands and feet off immediately.

As Susanne C said we are much alike in how this has affected us. I strongly urge you to get into pain mgmt. ASAP and not wait like I did. My dr says the only thing he thinks will really give me some good quality of life is a SCS. That freaks me out so it's off the table for now.

Panic and stress will always make the pain and symptoms worse. For everyone. That's the reason I'm on Paxil and it helps a lot.

There is life after SFN you just have to find your way to live it. You need to find a way to calm yourself and staying off the internet for awhile may help you.

I know this was a long post but I hope something I've said may help you. It was worth a shot

Debi from Georgia

It's hard to believe there's life after this. Head to toe burning and stinging etc...
I try so hard to be positive and say that I will beAt this, I will heal but a few hours later its next to impossible not to breakdown from the pain. The crappy part is I was bad enough before I started acupuncture with all my twitching but the explosion of symptoms and burning stinging pain after treatment has been unbearable and I can't get over it. The stupidity of me. Why did I do that? It's been 6 months with no improvement and major worsening😭
Oh, please. I can't and don't want to go through this anymore.

For those that say they are body wide what do u do? I can't scratch my ear or eat hard things without major pain. It's every inch of my skin nothing is spared. What do u guys do?

Oh yes. I hate it.
Even when I take my sunglasses off, it is like they are still there for about 5 minutes. Irks the heck out of me.

I do just what I can do. I spend a lot of time on lying on the floor with my knees pulled into my chest. This is how I get my housework done. For each load of laundry to fold, I'm down at least twice. It seems to calm down the vibrating and pain for a little while. Some days I can't do much.

My problem is lying down or sitting is WORSE. I think that's what makes it so hard.