Fibromyalgia Misadventures: Every Little Millimeter

Andria Kennedy
7 min readMar 31, 2021
Traffic-strewn highways resemble the neural pathways of fibromylagia patients
Photo by Ian Beckley from Pexels

How many times have you uttered the words, “You’re getting on my last nerve?” The phrase tends to get your point across, right? (Okay, so if someone’s pushed those final buttons, it doesn’t, but most people get the drift) Have you ever considered what the words MEAN, though? Where IS that final nerve located?

For people with fibromyalgia, this is a daily examination. As individual neurons scream for our brain’s attention (most of the time for no good reason), we grit our teeth and start to navigate the long, insane, complicated highway that is the human body’s nervous system. An exercise in futility? Possibly (almost certainly). But when you’re lying in bed for the sixth night in a row, wondering why your big toe feels like it’s caught in a vise, and you’ve run out of sheep to count, what else are you supposed to do?

Simple: you start counting nerves.

The Central Nervous System

Fibromyalgia makes itself at home in the central nervous system (CNS). After all, it’s a centralized pain state. You go through a normal day, and the CNS runs away with pain signals (or it decides to amplify them beyond all sense of reason — a personal favorite of most fibro warriors). That’s a lot of control for what amounts to a bunch of squishy material.

Most people only have foggy recollections of anatomy lessons from middle school. So let’s dive into a quick refresher course.

The central nervous system comprises your brain (yes, even the people that don’t use theirs) and spinal cord. And while they get most of the credit for keeping your body moving and functioning (because they’re the coolest parts), they don’t work alone. The brain and spinal cord receive input from the peripheral nerve system (PNS). All of the nerves that branch away from your CNS? You got it; they make up the PNS. And they’re a pain in the ass (how convenient they sound so similar):

  • Cranial nerves (12 pairs)
  • Spinal nerves (31 pairs)
  • Peripheral nerves (Several HUNDRED pairs)

To reach every part of the body — so you can drink, eat, breathe, or sit on the couch — each nerve divides into smaller nerves. And those nerves branch into SMALLER nerves. One primary nerve might break up THIRTY times before it reaches a final destination. Add all of them up, and what do you get? Several BILLION(more cells than there are stars in the Milky Way Galaxy). Lining them up, end-to-end, would stretch over 600 miles (965km). And, remember, the average neuron is only 1 MICRON in length. So, yeah, we’re talking an insane length.

In people with fibro? Every teeny-tiny neuron is capable of inflicting pain.

The Neural Pathway

If your brain tried to handle all of the input from those 600 miles, it’d fry. (Which may explain some people you meet) This is why most signals don’t go immediately to the brain — unless you get hit in the face. (Or WISH you were hit in the face)

To prevent wait times (even those in the millisecond range), the body developed reflexes. They get your body moving before the brain tells you to do so. And the spinal cord handles your reflexes. Rather than waiting for your brain to decide you need to move your hand off the lit stove, your spinal cord steps in and does the job first.

Great if you’re trying to burn the flesh off your arm.

Not so great if all you did was stub your toe.

The average spinal cord stretches around 16 inches (40cm) — give or take a few, depending on your height. And that’s A LOT of nerve tissue to go out of control. People with fibro have spinal cords on High Alert ALL THE TIME. And that means 13,500,000 neurons ready to send out an alarm. (Yes, we sit up at night and count our nerve cells. You think I was kidding?)

With fibro, ANYTHING can trigger a ridiculously over-the-top pain reaction. Allow me to demonstrate.

Let’s say you bump your hip against a table. For most people, you jerk away in a natural reflex and mutter the word, “Ow.” Your spinal cord recognizes the impulses sent by your PNS and responds accordingly. (And you probably avoid the table in the future)

For someone with fibro? You get a standard reflex, but then your spinal cord informs your brain that you crushed the bones in your pelvis. Your PNS didn’t SEND that information, but that’s the message your CNS receives. Instead of the “Ow” of an ordinary person, you bite your tongue against a scream and check to make sure your leg is still attached to your body. (Because even your brain isn’t sure, despite 100 trillion neural connections)

Translating the Pain

Fibromyalgia is a sick game of Telephone carried out along the neural highway of the human body. Someone taps their breaks (a TAP — not even a dramatic slam), and suddenly the news is reporting a fifty-car disaster. And you’re in the middle of the freeway, trying to figure out what everyone’s talking about.

And explaining the situation to someone else? It gets complicated. Because most people get issued normal central nervous systems. The kind where the brain and spinal cord recognize a scratch as a scratch (and not flesh rendered from bone).

The smallest details take on a whole new meaning with fibro. For instance, I donate blood every two months. (That whole O+ thing; they hunt me down when I don’t have my name on the schedule) They prick your fingertip for the hemoglobin test. Now, I know NO ONE enjoys that process. But my idiotic fibro brain equates that itty-bitty pinprick to driving a knife through my finger. (Did I warn you not to read this if squeamish? Hmm, probably should have) I grit my teeth and can’t use the finger for THREE DAYS afterward. It’s ridiculous. And trying to reason with my CNS?

Well, if that worked, I’d have solved fibro for everyone.

But the bigger issues are where fibro patients struggle. Our brains send out the red alert with bumps and bruises. So when confronted with GENUINE pain, they mount a full-scale blitzkrieg. Your body goes down for the count, convinced it’s on the verge of death. And no one believes you.

I recently underwent an inpatient surgical procedure on my sinuses. (Side note: listening to the insides of your face crunch? Not a good thing) They gave me an oral pain medication prior, and I received local blocks throughout. As I didn’t reach up and strangle anyone or stab them with surgical instruments, I decided it worked. The drugs soothed my stupid CNS for the first time in…well, forever. (If you ever use the words, “the first time” — it’s a trap)

Within 20 minutes of hitting the recovery room, all of those blocks wore off. And that oral dose? Sugar pill, as far as my brain was concerned. Now, I knew how much work the surgeon performed, so I expected SOME pain. I didn’t expect my body to turn around and leave my face feeling like I’d laid down in the middle of the highway during rush hour — while 500 semi-trucks ran over the same place on my face.

I bruised my husband’s hand (the fool should know better than to take mine), almost tore the car seat cushion, and bruised my legs from kicking out on the car ride home. I also contemplated slamming my head into a wall to make everything STOP. (Not to mention almost constant screaming that I should never have agreed to the procedure, despite the fact I needed it)

The man before me? Underwent the same procedure and probably had at LEAST 20 years on me. He walked out without a problem and a smile on his face.

Riding the Highway

No one knows exactly HOW many nerves the average human contains. But every single one of them has the potential to cause someone with fibro unrealistic pain. And the worst part is, there’s nothing wrong with the nerves. Those little cars on the highway? They’re whole, up-to-date on inspection, and running properly.

It’s the highway that lets us down. As the cars go past cameras or tolls, the messages translated to the central hub get scrambled. Suddenly, we’re reported for speeding or blocked behind barriers for imaginary accidents. (Okay, so I’m not great with car metaphors)

Centralized pain states receive information properly, but then they fail to react the way a normal system would. The brain leans too heavily on the PAIN button. So a stubbed toe feels like a toe crammed into a bear trap. And you keep checking and checking, swearing it’s broken.

Or you come out of surgery, wondering why the doctor removed all your organs. The thinking part of your brain insists there’s no way that happened, but the screaming in your abdomen tells you that’s the only explanation. Why else would it feel like someone took a giant melon-baller to your insides?

This is our frustration. Everything looks and works the way it should — except the translation. That’s where the breakdown comes in. The little fibro fidget running around in our brains can’t figure out whether to hit the red or green button.

And most of the time? That little bugger picks the red one.



Andria Kennedy

Freelance science writer, meanderer of thoughts, and complete animal nut. A tiny demon governs my life (she may be a flerken — we’re still running tests).