I’ve been dealing with small fiber neuropathy for about six years now, and every time I see a new specialist, they tell me the same thing: “Keep a detailed pain journal.” They want to know what I ate, how many steps I took, what the barometric pressure was, and exactly when the burning started. For a while, I was a model patient. I had a spreadsheet on my phone and a notebook on my nightstand.
However, I’ve started to wonder if this constant focus on my nerves is actually doing more harm than good. For example, last Tuesday I felt a sharp zing in my left foot. Instead of just letting it pass, I spent twenty minutes analyzing if it was because I had an extra cup of coffee or if the humidity had dropped. By the time I finished logging it, I was more anxious than when the pain started. It’s like I’m hyper-fixated on my body 24/7.
On one hand, the data did help me realize that high-sodium meals definitely trigger a flare the next morning. That was a win. But on the other hand, living my life as a series of data points feels exhausting. Are we just reinforcing the pain loops in our brains by paying so much attention to them? I’d love to hear if others have found long-term success with tracking, or if you eventually decided to just stop looking for patterns and just live your life.
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I stopped tracking after six months. My doctor never even looked at the notebook I brought in. It felt like a waste of energy that I could have used for literally anything else.
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I think there is a middle ground. I only track ‘extreme’ days now. If it is just the usual buzzing, I ignore it. If I can’t walk, I write down what changed. It keeps me from obsessing daily.
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I agree with you about the ‘pain loops.’ The more you look for it, the more you feel it.
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Tracking actually saved me! I found out that the artificial sweetener in my morning yogurt was a huge trigger. I never would have connected those dots without the journal. It’s tedious, but sometimes it pays off.
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Have you tried voice recording? I find it less stressful to just tell my phone ‘Left foot burning, 4/10, after walking the dog’ than to sit down and write it out in a chart.
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The anxiety of tracking is real. My neurologist actually told me to stop because my blood pressure was spiking every time I did my ‘homework’ for the clinic. Some of us just aren’t built for that much self-analysis.
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I’ve been at this for 15 years. Eventually, you just know your body. You don’t need a spreadsheet to tell you that a storm is coming or that you overdid it at the grocery store.
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There is a lot of research now into Neuroplastic Pain. The idea is that focusing on the sensation actually strengthens the neural pathway for that pain. By tracking it, we might be training our brains to be more sensitive. I switched to a ‘gratitude journal’ instead and honestly, my baseline pain feels lower because I’m not scanning for it constantly.
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Spot on. I felt like a prisoner to my data.
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I only use a journal when I am trying a new medication. It helps to see if there is a real trend or just a placebo effect for the first week. Once I know if the med works, the journal goes back in the drawer. I think using it as a temporary tool is better than a lifestyle.
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This is such a great point. We are more than our symptoms! Thanks for posting this, it makes me feel less guilty about skipping my logs lately.
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