My small fibre neuropathy, is it typical?

[chrisbalham]

Hi everyone, I've had a rough 3 years and looking to see if anybody can relate or shed any light to reverse the effects.

3 years ago I let this shower gel soak into my private parts over night https://www.bulldogskincare.com/original-shower-gel. I now know it contains a harmful organic solvent mutagen called Phenoxyethanol.

The next day, burning and tingling in the area it was applied, on-going for months.

- 2 months later: pain in testicles when sitting down.

- 6 months later: pain in feet when standing still for 5 minutes or more.

- 9 months later: pink fingertips, always wrinkled.

- 1 years later: pain in legs, arms, hands - especially when pressure applied

- 2 year later: tiny muscle twitches all over my body.

- Now: all previous symptoms plus pain in legs that stops me sleeping. I can't wear shoes or socks without pain. I sometimes wake up with painful hands/arms. I can't hold on to a train handle without red burning pain on my hand. I can't walk for more than 15 minutes without burning pain in my feet. It's ruining my life!

- I recently had a biopsy which revealed I have Small Fibre Neuropathy (all sorts of tests before that, all normal).

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My theory is that Phenoxyethanol caused a mutation of my DNA, specifically SCN9A which can cause Small Fibre Neuropathy (see https://ghr.nlm.nih.gov/condition/small-fiber-neuropathy). My health/pain is going in a slow downward spiral and I'm worried for my future and that I will pass this on to my children through chemically altered genes (via the mutagen).

Any light/help/support/stories I'd love to hear.

Many thanks,

Chris

[chrisbalham]

Here are some more notes on my condition with a timeline:

Symptoms Overview / Timeline

May 2013+
* Pain and tingling on penis

August 2013+
* Pain and tingling in testicles, especially when sitting
* Lying on right hand side at night triggers pain in testicles that radiates

September 2013+
* Lightening pain in penis and big toe at precisely the same time

November 2013+
* Penis tender to touch, but only for about 3 months

April 2014+
* Lightening pains in big toe independently of penis
* Pain in feet when standing/walking

June 2014+
* Pain in feet when wearing shoes, regardless of standing/walking
* Fingertips turned pink, fingerprint altered
* Intermittent spots on fingers/palms, painful to tie shoelaces

January 2015+
* Pain in feet when wearing socks
* Extremely painful legs while commuting home at end of day

August 2015+
* Small muscle twitches, mainly in legs but also all over the body
* Wake up with painful hands and arms

March 2016+
* Pain in legs and testicles preventing sleep


Active Known Conditions

* Benign fasciculation syndrome
* Burning feet syndrome
* Small fibre neuropathy (confirmed by biopsy)


Suspected Cause

* Organic solvent absorbed into skin over night
(symptoms in same area started next day)