Central sensitization or small fiber neuropathy, whether you have either or both—it’s not your fault. I commend you for advocating for yourself, reaching out, and doing more research to learn more about central sensitization.

I was diagnosed with central sensitization back in 2017, after experiencing small fiber neuropathy since 2015. One diagnosis doesn’t negate the other, and I actually got diagnosed with other conditions as well. I believe everyone with pain, especially with chronic pain conditions like neuropathy could benefit from learning about how the central nervous system processes pain… If I had a soapbox, that would be one of my main topics, but sometimes I end up sounding like a chronic pain evangelist, which I know can be off-putting >_< . The problem is, central sensitization is very poorly explained by many healthcare providers and also on the internet although it’s far better now than it was when I was diagnosed in 2017.

Consider it this way: Pain is an alert that your brain sends out in order to protect you from something it perceives as a threat. With central sensitization, the brain becomes hyper-sensitive to circumstances it perceives as threats, sending out more and more pain signals over time. The more our brains practice something, the better it gets at doing the thing, so the longer you’re in pain, the better your brain gets at delivering pain messages, in an effort to protect you.

I’m very much over-simplifying, but your brain is only doing what it’s evolved to do, which is try to protect you from threats. It’s just over-zealous, kind of like a car alarm that keeps going off for the littlest bump in the night. That’s central sensitization. It could happen to anyone, though certain circumstances may predispose us to it.

I might not be making sense; it took me months of working with a chronic pain PT to learn this, but this is a blog post by a PT I reference often that helps me: https://www.activelyautoimmune.com/post/pain-is-it-all-in-my-head.

Backtracking though, it is possible you could have small fiber neuropathy—it occurs with a normal EMG. And while a skin punch biopsy is the “gold standard” to confirm small fiber neuropathy, it is common to get a false negative. Percentages may be different now, but my neurologist who diagnosed me said a skin punch biopsy misses as many as 30% of SFN cases. A negative result if you still have symptoms does not mean you don’t have SFN.

You mentioned you had injuries and an infection previous to developing symptoms. It is common for SFN and other autoimmune conditions to develop after an infection or virus (this was well-known even before long COVID). That’s what happened to me—I had a really bad virus. Though it was just a really bad cold, and within 4 weeks I started experiencing small fiber neuropathy which in a few months snowballed to involve inflammatory joint pain and POTS.

It was a long process to rule in/out other causes so we could use conventional medicine to treat what we could, and then with central sensitization, there are the medications you mentioned, which change how pain signals are sent out, but there are also non-pharmaceutical, proven strategies to retrain the brain and break the pain cycle. I’m not there yet; I might never be, but my pain sensitive has vastly improved with specialized PT and a pain neuroscience approach. Curable is an app that was recommended to me by a Mayo PT, which uses some elements of the approaches my PTs taught me. There are also books such as, “Unlearn Your Pain.” I don’t love these resources personally because they can sometimes emphasize the, “Change your perspective, change your pain!” thing a bit too much, but they’re more accessible than finding a chronic pain PT and are helpful for trying to wrap your head around the concepts and start thinking about things you might want to try.

Central sensitization is a real diagnosis. I suppose people might think you’re “crazy,” but you’re not. I felt validated when I got this diagnosis because I had something to name and point to, and an explanation. I might never understand how exactly my pain started but I had a better idea of why I was experiencing what I was experiencing and it gave us something to target and treat…and it got better. Even for people who don’t have central sensitization, everyone can benefit from the brain’s neuroplasticity—we can influence how our brains perceive threats and change our pain experience, to a point of course. We can’t change misfiring nerves or bone on bone arthritis, but we can change how our brains respond to those things with pain and often change the intensity. That gave me hope.

People probably do think I’m crazy and it’s not fair. I have POTS, long COVID, I experience post-exertion malaise and I have central sensitization. All these things are very limiting and very invisible. It’s not that I don’t get upset about it. I do. But I try and remind myself the people or providers who are being shortsighted…that’s on them, but me. The most important thing is that I get the care and treatment I deserve and can keep improving and moving forward, whether they think it’s crazy or not.