Playlist for Fibromyalgia

Songs to Limp By

May 12th is National Fibromyalgia Awareness Day. However, we deserve a month of recognition. As such, Invisible Inks is devoting May to my fellow Fibro Warriors

(There are NO affiliate links in case you’re worried)

1. I Wanna Be Sedated

Ramones
Mania (1978)

Chronic pain conditions create a Mobius strip of fatigue. The body conspires to leave you exhausted.

Ceaseless pain utilizes energy stores.

The stress of coping with said pain sucks down whatever energy your worn-down mitochondria manage to produce.

Your nerves - non-sentient cells with no concept of time or circadian rhythms - continue to send screaming updates to your brain. All. Night. Long.

“I can’t control my fingers, I can’t control my brain”

Getting up in the morning, having scraped together 20 minutes of rest, you start the day with depleted energy stores.

Rinse, repeat.

I’m not the most adept mathematician in the world, but I’m a genius at glancing at a clock and calculating how many hours (minutes) of sleep remain in the night.

“D-U-M-B
Everyone’s accusing me”

No phone or calculator required.

4:40? That’s two hours and 20 minutes until the alarm goes off.

6:36? 24 minutes.

“Twenty-twenty-twenty-four hours to go.
I wanna be sedated”

Everyone in the house around me sleeps and snores in restful bliss. I roll from side to side and employ elementary math skills. All while the cells in my body scream at me for some semblance of rest and restoration.

As if the decision belongs to me.

“Hurry, hurry, hurry, before I go insane.”

2. Safety Dance

Men Without Hats
Rhythm of Youth (1982)

“What did you do?”

Tim used to ask that question in alarm when we first started dating. I’d look up and find him pointing at my arm or leg. A quick check confirmed the presence of a bruise - usually one I hadn’t cataloged yet.

My answer was a shrug and a smiling, “Beats me.”

“And you can act real rude and totally removed
And I can act like an imbecile”

I’ve never understood the irony of my body’s bruising habits. The beautifully saturated blue, purple, and green circles appear randomly, without my nervous system announcing an injury.

Meanwhile, the casual glance of a toe against the coffee table results in every nerve between my foot and brain screeching I’ve broken the digit.

But my knee cap slamming into my calf during the night? That doesn’t raise neurological alarms in the brain.

“As long as we abuse it, never gonna lose it”

Now that he’s adjusted to the idiosyncrasies of my body, Tim doesn’t freak out quite as much when he spots an offending blue or purple splotch.

It doesn’t stop him from asking the question, but at least now his voice employs a casual tone. One that doesn’t match the flare of concern in his eyes.

“We can dance, we can dance
Everybody look at your hands”

3. Never Ending Story

Limahl
Never Ending Story Soundtrack (1984)

Invisible illnesses frequently show up in medical texts as diagnoses of exclusion. Until a doctor (15 doctors) rule out everything else, they don’t assign a condition of last resort, such as fibromyalgia.

“I’m hidden in the lines
Written on the pages”

My neurologist put my diagnosis precisely that way: “There’s no test for fibro. We decide you have it when you fail to turn up positive for everything else.”

I wonder if he knew I had an abject fear of failure. The list of checkmarks on the sheet I presented to the scheduler didn’t improve that irrational state of mind. I needed to fail THAT many times to prove - what exactly?

“Rhymes that keep their secrets
Will unfold behind the clouds”

MRIs and CTs (no radiation allowed on the off chance cancer lurks somewhere in the body).

Enough lab work to fill a blood bank for a year.

A few small radiographs to confirm the arthritis that cracked in my joints whenever I moved.

Barium swallows to ensure I’d never touch certain foods again.

Physical therapy to satisfy the physicians convinced my complaining centered around feminine hysteria.

Scrolling through my medical history resembled a spin on the Wheel of Fortune. Doctors took endless minutes attempting to find their buried notes. Comparing one set of lab values to the next required an advanced degree in computer engineering.

I started twitching whenever a new doctor asked me, “Do you have any symptoms besides pain?”

In a fit of pique with one gastroenterologist, I replied, “Would you like the list alphabetically?”

“And there upon a rainbow
Is the answer to a never ending story”

4. I Like to Move It

Reel 2 Reel, The Mad Stuntman, Erick Morillo
Move It! (1994)

Doctors always have theories for patients. Writing SOMETHING on a chart eases their minds.

Even if the diagnosis isn’t correct.

“Woman! Physically fit, physically fit
Physically, physically, physically”

Before fibromyalgia became a diagnosis, my feet started locking up. Pointed in a severe position guaranteed to make a prima ballerina cringe, I couldn’t release the muscles without forcing all of my weight on the offending limb. Even then, it took hobbling around the bedroom to return natural movement - not to mention a release of the serrated blades from every bone (there are 26) in that trapped foot.

The episodes woke me from sound sleep, the muscles as high as my calves seized in a grip neither I nor Tim could massage loose. Motion was the only thing that convinced my body to relax.

“I love how all the girls are move them body
And when ya move ya body
Only move it nice and sweet, and sexy, alright?”

Once I collapsed in relief, I couldn’t guarantee my body would settle for more than a few seconds. The nerves in control of this symptom chose random times to signal the lock.

When my right foot chose the middle of a drive to react, I confronted my doctors with the problem.

One labeled the issue restless leg syndrome. (Convenient for the sleeping episodes, but inappropriate when I needed to drive with my left foot to avoid a rear-end collision)

My neurologist ran lab work and discovered I was positive for Lyme disease. (The only time I ever scored a positive result)

Doxycycline cleared up the test.

But it never did anything for my psychotic ballerina feet.

“I like to move it, move it
I like to move it, move it”

5. I’m Gonna Be (500 Miles)

The Proclaimers
Sunshine on Leith (2003)

Good doctors are unicorns for invisible illness patients. You struggle to find someone who’ll see you.

Listen.

“When I’m working, yes I know I’m gonna be
I’m gonna be the man who’s working hard for you”

Order appropriate tests.

Authorize prescription refills.

It can take YEARS to locate these rare creatures in the medical system.

I waded through lackluster physicians, irritating my insurance. Nurses employed by the company called to discuss my “health plan” and offer “advice” on my complicated medical history. They suggested psychological counseling services, confident my doctor-hopping had roots in a mental disturbance.

“And when I haver, hey I know I’m gonna be
I’m gonna be the man who’s havering to you”

When I finally startled upon doctors who looked at me - SAW me - I thought I’d died.

I latched onto them with the determination of a starving leech. I signed up for online portals, sending messages in the middle of the night to ensure a prompt morning response. I added numbers in front of their names in my phone’s contact list so I wouldn’t struggle to remember where they fell in the alphabet during fits of fibro fog.

And when receptionists put on a regretful tone to tell me appointments are only available at other clinics, I don’t hesitate to agree. I'd make hotel reservations if I needed to travel to another state to follow these mythical physicians.

I’d charter a rocket if they set up a clinic on the moon. (So long as I don’t need to pay a billionaire to do it)

“And I would roll 500 miles
And I would roll 500 more”

6. Land of Confusion

Disturbed
Ten Thousand Fists (2005)

I always prided myself on my photographic memory. The ability to recall everything I saw or read helped me sail through school. Maybe it didn’t help me develop study habits, but it gifted me with my 4.2 GPA and Summa Cum Laude at graduation. (Big deal)

So when my recall of basic words began slipping, my world came crashing down.

“I must’ve dreamed a thousand dreams
Been haunted by a million screams”

I didn’t lose “urethral obstruction,” “diverticulitis,” or “hypertrophic obstructive cardiomyopathy.”

No.

My brain couldn’t summon “pencil.”

It failed to produce “red.”

And it lapsed on “cat.”

Standing in front of clients, struggling to string one coherent sentence together, I sounded like a brain-dead ignorant.

“The men of steel, the men of power
Are losing control by the hour”

The higher my pain levels climbed, the thicker the fog blanketed my brain. As I fought to keep my fingers from clenching into fists, struggled to stand upright, and wrestled with preventing my teeth from grinding (never a good thing with TMJ), my mind chucked knowledge into a closet and barricaded the door. Unfortunately, it threw in basic comprehension for good measure.

I lost the precious memory I treasured. Along with the ability to function as an intelligent adult.

Standing in front of an IV catheter set-up, my assistant stared at me as I fumbled to ask for a piece of tape. The best I managed was “the sticky thing.” My eyes brimmed with tears.

“Can’t you see this is a land of confusion?”

7. Demons

Imagine Dragons
Night Visions (2012)

When you have an invisible illness, everyone around you - in a strange way - also has an illness. They become your caretaker, stepping in to prevent you from damaging yourself when you decide you can take on more than your body will tolerate. They police you.

Because you idiotically believe you can champion the cells in your system.

“But with the beast inside
There’s nowhere we can hide”

I panicked over telling Tim about my fibromyalgia.

And migraines.

And endometriosis.

And IBS.

And depression.

And anxiety.

Becoming part of my life meant inheriting a mountain of malfunction.

“And the masquerade
Will come calling out
All the mess you’ve made”

I kept him at arm’s length for a LONG time - even with every indication of acceptance. The fear that he would follow the same path as so many others wouldn’t release the talons embedded in my heart and mind. (“Too good to be true” flashed on constant repeat through my thoughts)

But he never wavered. Even after my hospitalization for a seroma. Despite my tears, yelling, and horrific patient display, he stayed.

Even when I screamed and ordered him from my hospital room.

“Don’t get too close
It’s dark inside”

8. Girl on Fire

Alicia Keys
Girl on Fire (2012)

Dysesthesia is the bane of the fibromyalgia patient.

(Correction: Fibromyalgia is the bane of the fibro patient)

Sitting quietly, my feet begin prickling. The sensation of walking over flaming coals or strolling on gravel with bare feet. Needles drive up into the soft skin of my flesh, no matter how much sensory information I provide to my brain to convince the nerves they’re overreacting.

“She’s living in a world and it’s on fire”

Scraping my foot against the edge of the table does nothing to remedy the irritation. Kicking vents the frustration, but it only conjures fresh bruises. (At least I know where they come from) I can try walking around, exerting pressure on whatever limb decided to run amok, but the odds of getting relief are slim.

“She got both feet on the ground
And she’s burning it down”

Unable to watch me struggling one day - and probably fearing my talk of severing the offending foot with a knife - Tim grabbed an ice pack. He sat for over an hour, holding the frozen gel against the bottom of my foot.

I lost feeling up to my ankle.

But at least the crawling, piercing, burning nonsense in my nerves died in those minutes of freezing.

Shame fibro patients are so prone to temperature sensitivity. Otherwise, I could climb into the refrigerator when dysesthesia attacks my arms.

Or legs.

Or chest.

“She’s walking on fire
This girl is on fire”

9. Deep in the Meadow

Jennifer Lawrence
The Hunger Games: Mockingjay Part 2 Soundtrack (2015)

“Real or not real?”

When I read the words in Suzanne Collins’s Mockingjay, they stayed etched in my brain. They meant as much to me as “Always” and “Okay.”

I never thought they’d become part of my life.

“Deep in the meadow, under the willow”

Invisible illnesses don’t plateau. There’s no point where the body sits back, decides you’ve suffered enough, and calls a halt to the torment.

Instead, you constantly endure changes.

Your life waxes and wanes. You move from “I feel decent today” to “kill me now.” And when you’re not looking, new symptoms arrive - tucked away in the recesses of your body, awaiting some cue you can’t predict.

In the middle of my most recent vacation, the world began swaying and rolling. I chalked up the sensation to time on the water, deciding my brain imprinted on the motion of the waves.

“A bed of grass, a soft green pillow
Lay down your head and close your eyes”

Except the floor kept moving when I woke up. But only for me. No one else registered the movement, saw the slow spin of the globe. All they spotted was an uptick in my loss of balance.

I laughed things off as my usual lack of grace.

Until the pier contorted into a spiral.

Grabbing Tim’s arm, I leaned close and asked, “Real or not real: The pier’s moving?”

He glanced back and read the alarm in my expression. Then he pulled me close to him and assured me, “Not real.”

I never realized how closely fiction could imitate reality.

“Here your dreams are sweet and tomorrow brings them true
Here is the place where I love you”

10. Broken & Beautiful

Kelly Clarkson
Ugly Dolls Soundtrack (2019)

On the days my fibromyalgia allows me to breathe, I believe in the future.

I champion researchers seeking a cure. My voice uplifts those having bad flare days. I sign petitions for invisible illnesses to gain recognition. And I tackle monster lists of chores, exercise routines, and fun activities with my friends and family.

“I never held my hand out and asked for something free
I got pride I could roll out for miles in front of me”

When every nerve in my body is screaming DEFCON-5, I don’t know how to get through the day, much less make it until tomorrow.

I sit and cry for the woman I lost. Resentment builds for every healthy person I encounter. I hide under the blankets, pushing loved ones away. And I silently hate everyone in the medical community who isn’t doing enough - who can’t be bothered to find a cure.

“We bury our emotion and pretend that we’re just fine”

I recognize that I will live with this disease for the rest of my life.

It doesn’t mean I like it.

“I know I’m Superwoman, I know I’m strong
I know I’ve got this ‘cause I’ve had it all along”

But warriors don’t rest until the fight’s over.

So I push to my feet with my sword, brace my spine against the wall, and glare down the uncertain fog facing me.

Acceptance is not in my fibromyalgia vocabulary. “Acceptance” implies peace.

And I’m not ready to sign an armistice with my insane nervous system. Why should I extend an olive branch to cells that create havoc with my daily life?

I’ve earned the designation of “Fibro Warrior.” With every minute. Hour. Day. Week. Month. Year. Decade.

Whatever it takes.

“Can someone just know me?
’Cause underneath, I’m broken and it’s beautiful”