Small Fiber Neuropathy & Pudendal Neuralgia - Hope Thread!

Hi everyone,

I’ve been a silent reader here for quite some time, but I wanted to finally share something that I hope brings a little light to anyone who has received the big and scary small fiber neuropathy diagnosis.

Like so many of you, I went to countless doctors searching for answers. Eventually, I fully immersed myself in the mind-body space and decided to go all in. I am not completely symptom-free yet, but I have improved to the point of fully functioning — and I just returned from traveling across Europe and Africa. Only four months ago, I was bed-bound from the intensity of the pain and truly didn’t know how I would keep going.

Nerve pain is absolutely terrifying. Not only is it painful, but the sensations are so strange and unsettling. I know that people with an SFN diagnosis, central sensitization, or CRPS often find it especially difficult to connect with the mind-body concept because our symptoms feel so severe and mind-boggling.

A little about my journey — in February 2025, I moved across the world to be with my partner. Unfortunately, my living situation became quite stressful. Long story short, I developed insomnia and extreme sensory sensitivity to noise. Cars passing outside felt like they were practically inside my ears. When I later moved in with my boyfriend, the symptoms eased for a short while.

A few months later, I developed what I thought was a UTI, which slowly progressed into full-blown pelvic pain. I had experienced UTIs growing up and had a subconscious fear around them, and I truly believe my brain latched onto that fear and ran with it. I’m on the other side of that mindset now, but I’m not afraid to admit that at the time, I genuinely freaked out — to the point of seeing my OB-GYN several times a week.

I grew up as an athlete and was very used to pain from injuries. What made this different was that it seemed to come from nowhere (or so I thought ). I feel fortunate that my academic background made it easier for me to understand and accept that the pain could be brain-based. Within just four weeks, I was completely free of pudendal neuralgia pain and no longer experienced pelvic symptoms aside from normal menstruation.

Then came my “perfect storm” — full-body SFN — which made the pudendal neuralgia feel mild in comparison.

I won’t go into detail about my symptoms, and I really encourage you not to focus too much on finding someone whose symptoms match yours exactly. It truly doesn’t matter. One person’s SFN is another person’s back pain — they’re labels for symptoms, but they don’t define the mechanism. I did experience (and sometimes still experience) the typical tingling, burning, stabbing, and skin sensitivity that characterize SFN.

When you have nerve symptoms, you are often dealing with more than just dysregulation — your nervous system is sensitized. That means your internal alarm system has become incredibly sensitive, interpreting almost everything as a threat. And when you’re in pain 24/7, how could it not? I completely understand.

At the beginning, no amount of meditation, breathwork, or success stories seemed to help.

In the end, there were only two things I truly needed.

The first was acceptance — which felt like the hardest thing in the world. Accepting your situation can feel impossible because you can’t imagine living like this forever. But acceptance isn’t about forever. It’s about accepting this moment, right now.

The second was allowing.

Sam Miller and Maggie Sterling do a beautiful job explaining this, but to me, allowing meant being moment-by-moment okay with the terrifying sensations happening in my body — without trying to change them. Tools are helpful not because they “fix” you, but because they help you allow. That’s why one person connects with meditation while another connects with yoga. It doesn’t matter which tool you use — what matters is the shift from symptom-fixing to mindset.

When you allow, you build indifference. And indifference is what rewires the brain. The beautiful thing is that you don’t have to consciously rewire your brain — it already knows how. We just have to stop interfering.

Some things that helped me practice allowing:

* Engaging in life and seeing friends again (even when I felt awful)
* Reconnecting with hobbies I genuinely love — reading, coloring, cooking, self-care, thrifting, walking
* Listening to music and dancing to shift my mood
* Growing closer to God
* Healing my inner child by buying stuffed animals, toys, soft blankets, and coloring books
* Journaling freely without judgment
* Crying and fully feeling my emotions on hard days
* Showing myself compassion when things felt heavy
* Watching recovery stories (Dan Buglio, Raelan Agle, The Steady Coach) — I loved seeing people get better
* Getting a part-time job and being around others again

I’m still on this journey, but I feel incredibly grateful for the progress I’ve made in just five months. I wanted to share in the hope that it might help even one person feel less alone.

I’m always here if anyone needs support.

With love always,
SA x