User with a chronic condition (SFN) found it difficult to consistently track symptoms and potential triggers like diet using existing methods. They built a simple personal tool, highlighting a need for commercial apps to offer more flexible and sustainable symptom tracking that can correlate with dietary intake.
Hey everyone, I’ve had small fiber neuropathy for about 10 years now. I was diagnosed in my late 20s after a pretty extensive workup, and no clear cause was ever found. Like a lot of people here, my symptoms haven’t been constant. I’ve had long stretches where things were relatively quiet, and then periods of flares that felt unpredictable and exhausting. Over time I started suspecting there were triggers involved like sleep, stress, illness, maybe food or weather but I found it incredibly hard to keep track of anything consistently. I tried notes, mental tracking, half-hearted journaling … and usually gave up when symptoms were bad or life got busy. Eventually I did manage to identify a few personal (mostly diet related) patterns, but it took years and a lot of trial and error. What really struck me is that while there’s a huge amount of knowledge in this community, actually tracking our own day-to-day symptoms in a way that’s sustainable feels surprisingly difficult. Out of frustration, I recently put together something very simple on my iPhone just for myself to make this easier. Before I spend more time building it out or even consider making it available to others, I wanted to ask this community a few honest questions: * Have you ever tried tracking your SFN symptoms or flares (apps, notes, spreadsheets, anything)? If so, what worked or didn’t work for you? * If you haven’t, what’s stopped you — and is there anything that would make tracking actually feel worth the effort, especially on bad days? I know SFN looks very different from person to person, and I’m not suggesting there’s one right approach. I’m mainly trying to understand whether tracking has ever felt helpful to others, or if it’s something most people reasonably give up on. Thanks to anyone willing to share their experience, and mods please feel free to remove if this doesn’t fit here. Kind regards, Vee