Fibromyalgia Misadventures: The Tenth Circle of Hell

Flaring pain
Photo by bill emrich from Pexels

Twelve layers of jagged cement piled on top of my leg. Every exposed corner and snapped piece of rebar dug through the flesh to burrow into the bones underneath. While my nerves screamed warnings to my brain, I tried to distract myself by running down the list of weight experiments MythBusters completed with femurs. How many pounds did the average femur endure before snapping? (Oh, right, those were synthetic analogs) Not that it mattered as a live electric current found the exposed rebar.

Sounds like the beginning of an action sequence from a movie — or, at the very least, a horror scene. The reality, though, is more gruesome. Because while the physical description comes closest to depicting the FEELING of one of my “favorite” fibromyalgia flares, it fails to capture the visible reaction. And that’s the worst part of this symptom: they remain invisible as they take over your life for days, weeks, even months at a time.

Months, trapped under collapsed buildings, getting electrocuted, and run over by high-speed traffic.

Good times.

The Dreaded Flare

Fibromyalgia takes down around 4% of the population. Men and women struggling to make sense of an affliction currently baffling scientists and medical professionals alike. We spend our days engaging in (pointless) arguments with our central nervous system (CNS) about what constitutes a genuine pain signal and what may only warrant a muttered curse. All while searching for medical professionals we HOPE will comprehend what we’re going through. (And attempting to convey our daily battles to family and friends who see our “normal” exterior and find our fatigue and gripes about pain tiring)

Seems like more than enough to put up with for any individual, no? But fibro warriors get an added wrinkle to their “fun:” the fibro flare.

“A flare is a worsening or exacerbation of symptoms that already exist.”

According to Dr. Daniel Clauw, a professor of Anesthesiology, Rheumatology, and Psychiatry at the University of Michigan in Ann Arbor, “[Fibro] patients use different timelines for what they consider a flare, but it’s generally several days or weeks of worsening symptoms. Anything shorter is considered normal waxing and waning of symptoms.”

To translate, your “everyday” pain? (That score of 13 on the 0–10 scale?) It spikes up to 20 and makes itself at home for DAYS. It feels like you’re dragging around a broken leg, waiting for gangrene to set in. The usual fibro rules apply, though: nothing visible. No swelling, no bruising, MAYBE a rash (if you’re one of the “lucky” few). Generally speaking, your leg doesn’t change in appearance from one moment to the next. Before the flare, you’re happy and skipping along without any extra cares in the world.

WHAM!

The building falls on you.

And no one notices. The entire freaking city collapses on top of you, but nobody sees a thing. Nor will they — not for the entire week…or weeks…maybe months.

Anything and Everything

Now, massive structural failure doesn’t come out of the blue. There’s ALWAYS a trigger, a problem, a flaw that accounts for the problem.

It makes sense that a fibromyalgia flare MUST have a source, too. That’s basic logic. And you WILL find common triggers that account for a flare:

  • Diet
  • Hormonal changes
  • Stress (physical OR psychological)
  • Changes to your schedule
  • Sleep (too much OR too little)
  • Weather changes
  • Surgery
  • Temperature changes (inside OR outside)
  • Treatment adjustments
  • Exercise (too much OR too little)
  • Accidents
  • Planetary alignment

Notice an emerging pattern? You got it: EVERYTHING can lead to a flare. Unless you manage perfect homeostasis (if you do, please write a book on it because I’m convinced it’s a myth perpetuated by scientists), you end up tipping the balance of your body one way or the other and your CNS jumps on the seesaw.

Anything that puts the slightest dent into your physiological or psychological well-being is enough to get a flare going. And once those nerves gain the upper hand, getting them to back off takes time. (Say, days or weeks)

Doctors with fibro patients stress consistency. If you manage to iron out the erratic swings in your life, your body SHOULD behave. Of course, figuring out how to avoid every potential change involves life in a bubble, locked in a climate-controlled cave somewhere. So most people fail. And they end up with flares multiple times a year.

The more flares you struggle with — or the longer a flare lasts — the higher your risk of developing fibro fog. Fibro fog results when the brain fails to cope with the overwhelming number of pain signals from the body. It manifests as confusion, difficulty focusing, and forgetfulness. And if you’re someone who prides themselves on their quick wit or photographic memory? It’s devastating.

Because now you’re dragging around a pseudo-broken leg and trying to remember the word for the color “blue.” (You laugh, but I speak from a position of experience. The best I came up with was “the splashy water thing.” Talk about sounding intelligent)

Meanwhile, people stare at you funny and question your sanity.

An Ounce of Prevention

Fibromyalgia flares present differently every time they show up. (Think of them as family reunions with distant relatives you didn’t know you had) The pain shifts, and it will move as you age. While you coped with severe headaches in your early 20s, your flare can move into your back in your 30s, and then take up residence in your kidneys in your 40s. You can even struggle with different flares throughout the year.

And treatment?

Well, since fibro is still hanging out in the wings, waiting for a genius to puzzle it out and present treatment, what do you think? You don’t have treatment options for flares. Even those medications available for fibro won’t help you. They take WEEKS to get started, and flares arrive between one breath and the next. Most fibro warriors don’t even get relief from traditional opioids.

So where does that leave you — besides hauling your broken leg around?

“The truth is we’re far better at preventing flares than we are treating them.”

As insane (impossible?) as it sounds, maintaining that consistent, even keel works the best. You need to become Goldilocks and find the perfect medium in your life.

Which usually looks like saying “No” to most of the offers that hit your table. Overdoing things commonly lands people with fibro a one-way trip to Flare Land. (We know this, understand it, and STILL do it) But the need to appear healthy and normal overrides the rational part of our brain screaming, “I don’t want to end up with a ‘broken’ arm tomorrow!”

If we took the time to examine the irony that playing baseball for six hours will turn us into whimpering babies for the next two weeks — babies NO ONE will have sympathy for — maybe we’d get a clue.

When you KNOW you have something coming down the pipeline (for instance, a surgical procedure), you need to clear the decks. EVERYONE takes time to recover from that kind of thing, but a fibro body? It’s going to make you pay if you don’t observe your downtime. Pushing through hectic, stressful situations like Superman tapped you to fill in for him is genuine insanity.

Of course, there isn’t a fibro patient out there that doesn’t already know this. Know it and blatantly ignore it (present company included).

Fight the Flare

No one enjoys a diagnosis of fibromyalgia. But flares? They make you regret it a little more. Especially when you realize you might have a slight hand in the weight of the building dropping on your body.

If we stop to consider the balance point of our seesaw more often, we might manage to head off at least SOME of our flares. (And if someone figures out what to do when those planets align, let me know)

Freelance science writer, meanderer of thoughts, and complete animal nut. My life is governed by a tiny demon (or possibly a flerken - still running tests).