Finding Purpose from the Pain
Introduction
Hi, I'm Matt. Like many of you reading this, I never expected to be dealing with Small Fiber Neuropathy
at such a young age. My journey with SFN started in early 2024, and it's
been a challenging path of symptoms, diagnosis, and learning to navigate
life with a chronic condition.
I'm sharing my story because I know how isolating and confusing this
condition can be, especially when you're first experiencing symptoms and
don't know what's happening to your body. If my experience can help even
one person feel less alone or get answers sooner, then it's worth sharing.
When It All Started
In February 2024, I started taking Finasteride for hair loss. It seemed
like a simple solution to a common problem. Within just one week, I began
experiencing intense burning pain in my calves. At first, I thought maybe
I had overdone it at the gym or pulled something, but the pain was unlike
anything I'd experienced before.
By April, what started as localized burning had spread throughout my
entire body. The burning pain was now accompanied by shooting pains. Simple activities became challenging, and
sleep became elusive as the symptoms seemed to worsen at night.
The progression didn't stop there. In November 2024, I was diagnosed
with Eosinophilic Esophagitis (EoE), a throat condition that made swallowing
difficult. Then, in May 2025, I developed full-body tremors that added
another layer of complexity to my daily life.
Getting Answers
Like many people with SFN, getting a proper diagnosis took time and
persistence. All of these new symptoms were difficult to describe
to doctors, and initial tests often came back normal. It's frustrating
when you know something is seriously wrong but can't get clear answers.
In June 2024, I finally got the test that provided answers: a skin
punch biopsy. This small procedure confirmed what I had begun to suspect...small fiber neuropathy.
Having a diagnosis was both a relief and a new
challenge. Finally, I knew what was wrong, but now I had to figure out
how to manage it.
Looking Forward
I'm scheduled to see Dr. Zeidman in October 2025, and I'm genuinely
excited about this appointment. Having a specialist who understands SFN
gives me hope for better management of my symptoms.
Managing SFN is an ongoing process of trial and error, finding what
works and what doesn't. Every person's experience is different, and what
helps one person may not help another. That's why having access to specialists
and a supportive community is so important.
My Treatments
The following is not professional medical advice. I am sharing my personal experience and what I am currently taking. Always consult your doctor before making any changes to your treatment.
Medications
- Cetirizine (Zyrtec) 10mg for suspected MCAS
- Methylphenidate (Concerta) 27mg for ADHD
- Naltrexone 1.5mg for SFN
Supplements
- Acetyl L-Carnitine 500mg for nerve health
- B12 Methylcobalamin 2,000mcg for nerve health
- D3 50mcg for overall health
- Fish Oil 1000mg 300mg Omega-3 for inflammation
- Magnesium Glycinate 240mg for muscle relaxation
- Seed Prebiotic Probiotic for gut health
For burning pain, I use Apothecanna's Extra Strength CBD Body Creme. It completely gets rid of burning pains for 4 hours, but it does not get rid of shooting pains for me unfortunately.
Why I Started This Foundation
After spending months searching for reliable information about SFN,
connecting with specialists, and trying to understand treatment options,
I realized there was a significant gap in available resources. Too many
people are struggling to find basic information about this condition.
I created the SFN Foundation because I believe people dealing with
this condition deserve better access to information, community support,
and hope for the future. No one should have to navigate this alone or
spend months trying to piece together information from scattered sources.
My bigger goal is ambitious but important: I want to help find a cure
for this condition. I believe that by bringing together the expertise of
specialists with the data processing power of artificial intelligence, we can accelerate research
and find better treatments, maybe even a cure.
This foundation is my way of turning a difficult personal experience
into something that can help others. If we can spare even one person the
confusion and isolation that often comes with an SFN diagnosis, we've
made a difference.
Life Beyond SFN
While SFN is a significant part of my daily reality, I'm determined not to let it define everything about my life. I've found new ways to adapt and enjoy the things I love, even if it means doing them a little differently. Woodworking has become both a creative outlet and a form of therapy. There's something satisfying about creating something beautiful and functional with my hands. I also picked up drawing again after years away from it, which helps me express myself and find moments to slow my mind down.
Rock climbing is another passion of mine, the supportive community and physical challenge help me focus on what my body can do, rather than what it can't.
Living with SFN means adapting, not giving up. It means finding new ways to enjoy old hobbies and being kind to yourself when your body doesn't cooperate. Most importantly, it means holding onto hope that tomorrow might be better than today.
Written by Matt, Kentucky
August 28, 2025
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