PSSD Forum

I am a sufferer but also fortunate enough to be a family member of a prominent immunologist and neurologist. I have studied my disease for over 2 years now. I am as certain as I can be that this is the cause.

These other theories involving persistent upregulation/downregulation of various serotonin receptors or serotonin-dopamine imbalances, or upstream or downstream dysregulation, or epigenetic based dysfunction of androgens don’t hold up to the science.

Small Fiber Polyneuropathy (SFP) explains everything:

1. Small fibers off the dorsal penile branch are very sensitive and first to be effected. Loss of some or all sensations will lead to decreased libido and erectile control.

2. SFP commonly leads to anhedonia and insomnia as these small fibers are very involved in regulating circadian rhythms and physical feedback to emotions.

3. SFP leads to changes in ability to feel anxious via dysautonomia (heartrate response, vasoconstriction/vasodilation).

4. SFP leads to control issues with blood flow leading to cold extremities including cold penis and scrotum.

5. SFP leads to dry skin/changes to sweating patterns, hair loss, skin sensations, brain zap like tingling.

The list goes on and on, but I will stop.

“Windows” occur when the remaining small fibers become overcharged and compensate for the decreased densities (mornings, during illnesses, etc.)

SFP testing at most facilities is inaccurate as you are compared to an average across all ages.

To confirm, get a double biopsy (ankle and thigh) at a place that has enough data to compare you to your age bracket and race. You will most likely find that you have neuropathy or are in the bottom 25%.

The cause is impossible to know. It could be as a result of autoimmune flare up after the immunosuppressant actions of SSRIs, or due to their direct toxicity with slow metabolizers.

Thanks for the information. So in that case, what could be done about it according to your immunologist family member?

Did you have a biopsy done that confirmed it in yourself btw?

1. Get the biopsies. If all or most of us show polyneuropathy, this objectively arms us to get recourse from pharm.

2. Get the full autoimmune panel to rule out any active response.

3. Small fibers can regenerate overtime if the underlying cause is alleviated.

Another question, isn't pain the most prevalent symptom of SFP? Howcome we don't have that?

Not the most common symptom at all. With non-length dependent small fiber neuropathy, most common symptom is brain fog, as far as I’ve been told.

Ok. Would IVIG be something worth trying?

That’s only to correct an ongoing autoimmune reaction. It’s likely that for most of us, we had an overnight immune surge and woke up with our symptoms. The autoimmune disorder would be gone in that case - only damage left behind.

In no order of importance, here are some SFP exclusive symptoms to look out for. If you have these, you really need to go get a double biopsy and not be worrying about serotonin this or dopamine that or testosterone this.

1. Stinging or prickling sensations all over or especially on the upper legs and torso
2. Oddly dry skin with inability to sweat from arms and legs
3. Dry hair and/or thinning hair and loss
4. Loss of hair in lower legs
5. Tingling sensations from the inside of your body/on top of your organs/engulfing your brain
6. Cold hands, toes, penis/tip of penis
7. Unexplained feelings of burning or chills

Interesting stuff but let’s be careful making claims that PSSD is 100% this or that. Nobody knows the cause and we won’t without research. I’ve updated the thread title to reflect this.

Thx for your work! PSSD community appreciates all attempts to find out what happened to us. Interesting that i have already polyneuropathy with Lyme. Although I have pain in neuropathy of the feet, it is most felt when pressed. Tingling is not always a characteristic feature, I do not have them.