Matt's Journey with Small Fiber Neuropathy

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.

Like many people with SFN, getting a proper diagnosis took time and persistence. The burning and shooting pains 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.

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.

One treatment I'm particularly interested in trying is Low Dose Naltrexone (LDN). From what I've read and heard from others in the community, it has helped some people with SFN symptoms. While I know it's not a cure-all, I'm optimistic about the possibility of some relief.

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.

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.

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 of peace amidst the chaos.

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.