Normal Life in a Dysfunctional Body
My Definition of Normal, Not Theirs
It’s National Fibromyalgia Awareness Month! (You know I wouldn’t forget)
I wanted to kick things off with an essay I’ve had in my back pocket for a couple of years. Fibro comes in different flavors, and sometimes we get to taste them all—whether we want to or not.
Stay strong, Fibro Warriors!
And stay ABNORMAL!
“Congratulations, you sprained your ankle.”
“Can you repeat that?” I asked, squinting at my orthopedist for signs of jest.
“You’ve sprained your ankle.” He leaned closer, sensing my skepticism. “I’m amazed you’re walking.”
My pain was real and abnormal? I’d finally reached beyond the lines delineating “acceptable human tolerance” and achieved a demonstrable pain condition?
I laughed.
Doctors didn’t deliver actual diagnoses—not to me.
Giddy bubbles filled my chest, threatening to transform into further laughter. Noticing his raised eyebrow, I tamped down the mirth and folded my hands. “So, what do I do?”
I didn’t embark down “abnormal pain” roads. Instead, I spent decades listening to doctors dismiss this or that symptom. My endless stack of NORMAL test results piled up in my encyclopedia of a medical record. Because pain never registered in lab work or appeared on scans. Nothing drove that home harder than getting diagnosed with fibromyalgia at 20. I could lie on a table, writhing in agony from a malfunctioning nervous system, but doctors merely shrugged their shoulders and offered me proclamations of, “Everything’s normal.”
I’d developed a pathological hatred of the word and a resistance to seeking answers for any sudden stabs throughout my body.
After performing a pirouette on an icy sidewalk in the winter of 2015, I continued to limp on my left ankle for a week. I’d done enough damage to the joint in my youth for it to always look swollen, which meant one lousy symptom: pain. I assumed my orthopedist would take one look at my foot and make the “normal” diagnosis.
It took a second week of hobbling before I conceded to co-workers’ demands to seek medical treatment.
I waited patiently as the orthopedist scrutinized my radiographs. I winced, bit my lip, and tore the protective paper on the table to shreds as he palpated the tender muscles of my foot; it wouldn’t matter once he turned a critical eye to diagnostics. My life existed within the firm boundaries of NORMAL test results.
So when he informed me of the sprain, I stared. Fibromyalgia was a diagnosis of exclusion; physicians only considered it a possibility once they ruled out everything else. I only received my membership to the Invisible Illness Club after years of lab work, CT scans, and MRIs.
My orthopedist glanced at the screen, eyeing brilliant streaks of white through the bones of my ankle indicating trauma. “I can take this sprain to surgery, but I don’t like starting there. I prefer to try physical therapy first. See if we can’t quiet things down that way.”
I nodded. “Physical therapy it is.”
Law of Physical Therapy #1: Never look like you’re enjoying it because we’ll put a stop to it.
“I’ve never seen anything so bizarre in my life.”
I glanced at my foot—toes extended at a perfect point, without the assistance of a ballerina’s pointe shoes. I grinned at the stunned face of Jonathan, my physical therapist. “That’s me: completely bizarre.”
He rolled his eyes and pushed up his sleeves. “The average person isn’t proud of twisting their foot into a corkscrew.”
“I’m not your average person.”
“Do your calf raises.”
I was sixteen minutes into my first physical therapy visit. Jonathan—and every other therapist I’d come to have—regarded me as a fascinating psych patient, failing to comprehend the state of my body’s compromised anatomy. He confided I was the first of his consultations to arrive with a broad smile. The “normal patient” referred for therapy expressed remorse over the impaired function caused by their injury or impairment.
They didn’t laugh with glee.
To be fair, I didn’t enjoy the spasming pain of my sprained ankle. Shambling around in a brace wasn’t on my Top Ten list.
But the novel delight of having a pain diagnosis tickled me.
As I understood it, physical therapy returned a person to normal activity. From the intake form to the consultation to the endless (45-minute) sessions to the periodic evaluations, everyone’s goal was a return to normalcy. Or at least as close as one could get, depending on their situation.
I walked into a building where abnormal pain was the standard condition.
My throbbing ankle equated to a gold medal. Within the walls of the treatment area, I was a champion. And Jonathan’s ability to find other deviations from “normal” only added to my high.
Starting with my ballerina toes.
At rest, my feet naturally dropped to a point. Sitting, standing, lying down, my toes bent into a graceful position any prima would envy. Save I’d never taken a single lesson and couldn’t walk without tripping over invisible obstacles, as evidenced by my swollen ankle.
Jonathan stared, speechless. “Were you a dancer?”
I snorted. “Aren’t dancers graceful?”
“I’m asking because your foot shouldn’t fall into that position. I don’t think I can even measure the angle.” He held up a device that reminded me of the protractor I’d used in geometry.
“So I’m not normal?”
“Not by a long shot.”
I couldn’t keep the grin from my face. Physical therapy proved better than I imagined, opening the door to a world outside the rejected NORMAL I typically lived in. He raised his eyebrows, then shook his head—reactions I learned to recognize over the following months.
I couldn’t read the folder as he made notes, but I suspected he wrote more than measurements. “Can you fix it?”
“I’m not even sure where we’d begin with something that strange.”
Physical therapy became a part of my schedule I looked forward to. Not because I enjoyed the exercises (I didn’t), or because I found humor in the “Ten Laws of Physical Therapy” tacked to each column (maybe they were amusing), but because I savored belonging somewhere that appreciated abnormal pain and its causes.
As I complained about attempting to balance on a step or navigate a miniature obstacle course of hurdles, Jonathan made fun of my toes. Extended, my pointed foot exaggerated my lack of normal anatomy. None of it mattered because I belonged there; I didn’t need to justify my presence in the room.
And while foot massages left me wincing, at least no one doubted the pain creasing my face. They saw the bizarre shape of my muscles, twisted into strange configurations therapists fought to wrestle back into position.
Unfortunately, the intended goal of my therapy played out, and my sprain calmed down. The swelling receded, taking the pain with it. My balance improved within a few months, and Jonathan sent a final report to my orthopedist.
Once again, my daily levels of pain qualified as normal.
My place within the hallowed walls of physical therapy—abnormality—was revoked.
Fibromyalgia is a tricky condition. As a centralized pain disorder, nerves send constant signals to the brain indicating problems. Everything—from a bump against the counter to a collision with a bicycle—receives the same panicked response. The nervous system assumes everything is a threat. I spend most of my waking hours (and a good portion of my should-be sleeping hours) attempting to talk my brain out of heightened alert.
When I got up from the couch in the fall of 2016—just one year after my failed ice dancing routine—and felt immediate pain in my right ankle, I assumed the response nothing more than fibro working overtime. I didn’t trip (this time). There was nothing to account for the throbbing. I assumed the flare would dissipate within a day or two.
But the pain refused to leave. It even dared to worsen as the weeks went on. I dug out a compression sleeve and resigned myself to a return trip to the orthopedist. Unlike the icy slide that sent me to his office the first time, I didn’t have a good story.
Doctors don’t like injuries where nothing out of the ordinary happens. When you walk into their office limping, they expect you to trot out a tale of a sports exploit, vacation shenanigan, or friendly dare gone awry. I saw disbelief in his expression when I shrugged and admitted, “I stood up.”
He ordered an MRI to determine the cause of my discomfort. I prepared myself to discuss fibro pain signals, followed by a suggestion to get some rest.
“You tore a tendon.” He pulled up the images on his computer screen, indicating a stark black line next to the white ankle bones. “We’ll schedule you for surgery.”
I stared at him. “What?”
He shook his head. “I’m impressed, too, considering you ‘only stood up.’ My guess is you shifted your foot wrong without realizing it. Walking around hasn’t helped. Sometimes pain means something.
“Don’t worry, though, this is an easy repair. We’ll follow it with physical therapy and get you back to normal.”
Law of Physical Therapy #2: Never say, “I want to go home,” because you’ll just stay longer.
My second round of abnormal pain proved distinctly unappealing, making me long for the days of my usual fibro nerve irritation.
And it started with the “easy repair” of my torn tendon.
My vision swirling in dizzy loops courtesy of the pre-med IV cocktail, I winced away from the scrape of a cheap felt tip marker across my ankle. The anesthesiologist looked up in alarm, his eyes wide over a paper mask. “You felt that?”
“Yes. It hurts.” I couldn’t string more than a few words together, but I could feel every finger prod along my calf.
He glanced over his shoulder at the OR nurse. “Tell them to delay another thirty minutes; her local didn’t work.”
Anesthesia protocols were designed for the average person. They don’t tend to work on fibromyalgia patients. Nerves in a heightened state of pain don’t process drugs properly, requiring higher amounts than usual. I sat in my detached delirium as a second—more significant—dose was prepared and administered. I didn’t get to move to the operating room for induction until I reassured everyone I couldn’t feel anything.
My failure to fit in with the “normal” orthopedic surgical patient crowds should have warned me that things wouldn’t proceed smoothly.
The double-dosed local nerve block catapulted me into the abnormal group of recovery, where patients fail to regain sensation after waking within the prescribed six hours. Or twelve hours. Or two days. As I fretted over my inability to register a touch on my toes, my orthopedic office assured me everything was normal.
For me.
“You needed extra blocks to get through the procedure. They’ll wear off in due time,” the nurse reassured me.
When my nerves consented to wake up, they brought an avalanche of overdue pain. I wondered why I hadn’t savored the enforced numbness more, why I’d been so hasty to resume routine.
Even worse, my procedure came with a bonus. My orthopedist had shown me the tendon, but he never mentioned the tear through the supporting ligament. The position of my ankle in the MRI obscured the damage. The surgery allowed a complete picture of the internal anatomy, and no respectable surgeon could leave an injury unaddressed. Ligaments, it turned out, supported ankles. (Who knew?)
He blamed the tears on my determination to walk while injured. I blamed my broken nervous system and its insistence on labeling everything painful. The result was the same regardless: Significant harm to a pivot point.
Ordinarily, another addition to my “abnormal” anatomy collection wouldn’t have bothered me. But ligaments were more delicate than tendons in the muscle hierarchy. The repair took my “easy” recovery of two months and added three more. Three more months in a weighty plastic boot that prevented me from driving and made me the office joke as I wheeled around on a bright red knee scooter.
“Are you here again?” Andrew—my primary therapist this time around—demanded as I navigated the hallway with my absurd grey boot. “Didn’t you get enough of us last time?”
“I missed you guys.” I collapsed onto a table, relieved to get the weight off my throbbing ankle.
Andrew flipped through my folder. “Decided to upgrade from a sprain?”
“Sprains are boring.” I removed the Velcro from my support boot, baring the bruised disaster of my foot. A three-inch scar arched across the swollen joint.
He shook his head. “You know, most people stick to tendons or ligaments.”
“I’m not most people.”
Normal nervous systems healed on schedule. But the tendon and ligament in my right foot—abused since my teen years—formed a pact with my nerves to stretch my recovery as long as possible. The “abnormal” diagnosis I found so novel dragged my physical therapy into the summer, six and then seven months after my January procedure.
“All you have to do is send a note authorizing me to drive,” I said, hands resting on the rails of the wooden training stairs.
“And all you have to do is stand on your right foot for thirty seconds,” Andrew replied with a shrug.
I stared at my nemesis: a chunk of two-inch-thick blue foam designed to strengthen my balance. My current record before needing to grab the rail for support was five seconds. The reattached muscles in my foot had gained strength over the months of gentle exercise and massage, but they balked at the foam’s unstable surface.
“Ten seconds.”
“Ten seconds,” Andrew said. I saw a familiar grin cross his lips. “But I won’t send the note to your doctor.”
“I hate it here.”
“Could have fooled me, considering this is your second trip.” He held up the digital timer. “You’re my last appointment of the night, so I’ve got plenty of time.”
“You’re a jerk, you know that?”
He shrugged. “I’ve been called worse.”
“I call you worse in my head.” Gritting my teeth, I stepped on the pad and let go of the rail.
My ankle wobbled through another six sessions before consenting to hold. I never asked Andrew if he mentioned needing to stand within arm’s reach to catch me in his notes. All I cared about was my orthopedist setting me free of restrictions and proclaiming me NORMAL once again.
I waved a cheerful farewell to the physical therapy office and promised I wouldn’t return.
Whether a person has fibromyalgia or not, they usually suffer from back pain. Poor ergonomics, endless hours spent standing, walking, and bending, and overambitious weight selections at the gym conspire to abuse the spinal column. After a spontaneous tweak of the back left me rolling on the floor during my senior year of college in 2001 (mid-term agony aside), I shifted the occasional electric shocks from my lower back to the “normal” pain column.
Everyone I knew complained of issues with their spine. Mine wasn’t out of the ordinary.
During the 2017 Christmas holidays, I shifted my legs during the night and woke from a sound sleep screaming.
Grasping the edge of my bed, I fumbled for the headboard, dragging my legs over the side. I tasted copper as I gritted my teeth, forcing my body upright. The pain lancing down the backs of my legs wasn’t the familiar “friend” I knew from my years with fibro.
But back pain wasn’t unusual. (Right?)
“Do you see the spaces between these vertebrae?” my orthopedist asked, pointing to the radiograph.
The gaps were hard to miss, particularly against the distinct absence in the column below. “How do those spaces get there?” I asked, trying to remember any falls.
He stared at me. “You’re supposed to have space between your vertebrae. That’s what allows your spine to move.” His finger drifted to the compacted bones. “It isn’t normal for them to sit on top of each other like this. You’re getting flashes of pain because your spinal cord keeps getting pinched between.” He tilted his head to the side, giving the computer screen a critical assessment. “You no longer have any cushion between the bones. And you have a lot of arthritis for someone your age. I’m amazed you can walk.”
I stared at the screen. Arthritis crept between my vertebrae as white streaks. It lit up my radiographs like a sinister Christmas display.
I’d begged the receptionist for an appointment. She’d tried to delay me until the new year, reminding me of the impending holidays. But taking more than two steps caused electricity to run down my legs. Collapsing into bed at night offered some relief but only lasted until my body made its first movement. Co-workers raised eyebrows as I clutched counters in a death grip, unable to bend more than a few degrees forward.
I forced a smile as my shoulders dropped in defeat. “I am pretty amazing.”
I had long since conceded myself to a life with back pain. When I mentioned this, my orthopedist asked if I’d lost my mind. While impressed at the state of my spine, the normal condition of dwindling back health in the human population had led to advanced treatments. Unless I was set on continuing in agony, he had a menu of options available.
I ran down the checklist, determined to best my squashed vertebrae. Unfortunately, the stacked bones in my lower vertebral column ignored every attempt at medical therapy.
My orthopedist recommended spinal fusion. Spinal fusion required a surgeon to cut into the spine, restoring the natural spacing my non-existent cushioning should have provided. He would then install hardware as placeholders to prevent the bones from sliding back down.
In short, he’d take my vertebrae and create a single fused vertebra.
He rolled his eyes when I laughed that I’d finally achieved partial android status.
“We’ll fuse L4-S1,” he said, indicating my lower back on a frozen MRI image. “You’ll have titanium rods and screws and a matrix cage to hold everything in place.”
“How long is recovery?” I asked, envisioning years in traction.
“No stairs or driving for a month, but it’s an outpatient procedure.” He smiled. “We even get you into physical therapy the next day.”
I groaned. “Of course.”
Law of Physical Therapy #3: Never say you can’t because you’ll do it anyway.
Physical therapy for spinal procedures differed from standard physical therapy. I couldn’t go straight to my usual office and trainers. Two days out of surgery, navigating a metal walker around the halls of my parents’ house, therapists came to me and taught me to sit in a chair. Then watched me bend to pick up a deflated ball as I lamented my newfound invalid status.
I spent my days sitting on the couch, whining.
Getting approval to return to the familiar office felt like a monumental achievement. But, to my dismay, upgrading from a walker to a cane didn’t return my life to normal. Bending to climb into my car inflicted blinding paralysis; driving remained out of the question. And when Lisa—the latest therapist to handle my sessions—asked me to lift into a bridge pose at my consultation, my body locked.
Tears started in my eyes. “Why can’t I do it?” I grabbed the table’s edges, fighting to lift my torso into the air. “I know this pose!”
“Take it easy.” She rested a hand on my shoulder. “Your doctor cut your spine. You have to regrow that tissue, and that’s not a quick task. Now I know where we need to work to build your hip strength, take the pressure off your lower back.”
I slammed my fist down. “I hate this. My doctor said I’d go back to normal.”
“From what I see of everyone’s notes, you’ve never been normal.”
The laugh snorted out my nose. I turned my head to face her. “Does it really say that?”
“Underlined and everything.” She grinned, tapping my nose with her pen. “Now, let’s see how high you can lift your legs.”
It had been almost two years since my last visit, but everyone recognized me. I didn’t see any patients I knew, though.
I was the only person to return for repeated physical therapy.
I endured a fresh hell of exercises as they coaxed my back and legs to regain and build strength. Too often, my brain sent signals to a spine uninterested in responding.
“Why are we doing this?” I demanded, staring at the ceiling. My back brace sat in the chair beside me. The black monstrosity was a constant presence in my life, wrapping my middle like a corset. Now the Velcro straps sprawled over the arms like exhausted limbs, the rigid plastic that held my spine in place upright against the seatback. An oversized grey exercise ball perched under my calves, tilting my legs into a ninety-degree angle.
Lisa ignored the distinct whine in my voice, typing notes into her laptop. “Do you want to heal?”
“My back doesn’t want to do this exercise. That’s obvious.” I crossed my arms.
“Ten reps, let’s go.”
I peeked in her direction. She lifted her eyebrows. I stuck my tongue out, and she returned the favor. “This is patient abuse.”
“Twelve reps then.”
“Lisa!”
“Andria!”
“Fine!” I gritted my teeth and planted my arms on either side of my body. The ball wobbled beneath my heels, but I managed to lift my hips an inch off the table before collapsing.
Lisa grinned at me. “That’s one. Eleven to go.”
Spinal fusion required years to complete, especially as an adult. I wore an electrical impulse belt every night, the pulses designed to stimulate cartilage growth. And I took my daily calcium supplement without fail. But my orthopedist warned me my spine wouldn’t fully heal for at least three years. The polymer cage and hardware would hold my abused vertebrae in place while my body restored the tissues damaged by the procedure.
I only needed to endure physical therapy for a few months, though. Once I demonstrated an ability to hold that stubborn bridge pose—and a few other key milestones—Lisa freed me from my weekly torture sessions. With her final report, I gave up the cane and brace.
Pulses of pain continued to radiate from the site beneath the enormous scar on my back (attractive when paired with a bikini). But I wrote them off as fibromyalgia nerves.
My vertebrae were back where they belonged.
There is no cure for fibromyalgia. It’s the most unfair part of the condition (aside from constant, endless pain, I mean). After running from doctor’s office to doctor’s office, collecting specialists in a bizarre game of PhysiciansGo, and getting a diagnosis of “abnormal in the absence of normal conditions,” I face no options for relief. But, as with every other chronic illness, everyone has ideas to treat symptoms. They run the gauntlet from rational to insane. And depending on how I feel on a given day, I pull from different ends of that list.
Exercise releases oxytocin. Most people recognize it as the “feel good” hormone associated with orgasm. But oxytocin is also the body’s natural pain reliever. Hence why a regular exercise routine is recommended for anyone with chronic pain. The logic gets fuzzy for those of us carrying around busted nervous systems, but the alternative is downing dangerous amounts of ibuprofen and acetaminophen—not so hot for the liver.
Once I received reassurance the movements wouldn’t irritate my healed spine, I joined the local kickboxing gym.
I’d had my fill of abnormal; it was time to embrace a life of normal.
Considering the potential for injury involved with vigorous exercise—to say nothing of partner drills, competitions, and weighted bags—I did surprisingly well. The first warning signs of a new abnormal pain didn’t appear until a year into my membership. But the dull pressure in my thigh was easy to dismiss as a sore hamstring, requiring nothing more than extra stretching.
Until the pain intruded on my ability to sit or lay down.
In a NORMAL year, I would have called my orthopedist and admitted the possibility of a foolish injury. But this was 2020: the height of the first wave of COVID. Calls to any doctor were no longer normal, requiring wait times of weeks and deferrals to telehealth appointments (palpate my rear end on camera? No thanks). Masks became prominent, followed by gym closures. I gritted my teeth and continued to work with stretches and a heating pad.
My fiancé, Tim, and I adapted our kickboxing routines to Zoom. Which is when he spotted me limping out of the room.
“Is your pain that bad?” he asked.
“I just need to stretch.”
“We did stretch.”
“It’ll stop in a few minutes.”
He grabbed my hand. “You need to call the doctor.”
“I don’t want to go to a doctor and risk getting COVID in the waiting room.”
His fingers twisted the garnet on my left hand, catching the light so it changed from blue to purple. “Do you want to hobble down the aisle on crutches?”
I raised an eyebrow. “Really? You’re playing the wedding card?”
He smirked. “Will you call the doctor?”
“Fine. I’ll call the doctor in the morning.”
Appointments moved slowly in COVID. I shuffled to my primary care provider for radiographs that revealed nothing. The orthopedist retook the images after watching me limp down the hallway, staring at them long enough to make me squirm. “Everything looks normal,” he said. “We’ll do an MRI.”
The electric shocks pulsed from my lower back, down my right leg, and even into my ankle became part of my life. I wasn’t ready to accept it as permanent, but I was prepared to hear the usual, “Nothing’s out of the ordinary, it’s your fibro” report.
“This is interesting,” my orthopedist told me. “At first glance, your imaging looks fine. But when I combine it with your medical history, we find a condition called ischeofemoral impingement.”
“Gesundheit.” I arched my eyebrows.
“You have a muscle trapped in the socket of your hip. Every time you move, it pulls and pinches the nerves, causing the pulses you’re experiencing. It’s not common and easy to overlook.” His eyes crinkled at the corners, suggesting a smile under his mask. “I’ll order physical therapy. If that doesn’t work, you’ll need to go upstate for an arthroscopic procedure to shift the muscle back in place.”
“My wedding is in November.”
He shrugged. “COVID will probably be gone before then if you need surgery.”
Law of Physical Therapy #4: Never complain because we never listen.
“Andria! Long time no see. We thought you forgot about us,” Zach said, adjusting his mask. This time, he’d drawn the short straw, running point on my therapy.
I crossed my arms. “I tried to.”
He flipped through the pages of my folder. “How long’s it been?”
“Three years,” I mumbled. I debated asking if I had the record for most visits to the practice but decided I didn’t want to know.
“Be honest. Did you miss us?”
“No.”
The treatment area looked the same. And ID badges clipped to belts or shirts carried the same faces and names. But the pandemic meant a shift to masks, plastic face shields, and the constant presence of antiseptic in the air. A receptionist intercepted me before the door, taking my temperature and running through the familiar litany of pre-screening questions. It was and wasn’t my usual place to retreat when my body decided to fall apart.
And I craved normality more than ever with a world skewed on its axis.
The orthopedist reinforced Tim’s refusal to let me exercise. My one outlet to the outside world (through Zoom, but still, people other than the two of us) vanished overnight. I even lost my battle for walks around the neighborhood. Any additional movement of the hip socket irritated the trapped muscle.
“You hate me enough to put me on the rack?” I asked, skeptical as we walked to a giant contraption.
Zach laughed, adjusting color-coded springs. “This is a Pilates machine.”
I scrutinized the gliders, the triangular handholds, and the padded headrest. “Pretty sure I’ve seen this on Medieval torture movies.”
“Well, you do get to extend your leg over your head.” I couldn’t see his grin, but I heard it in his voice.
I crossed my arms. “That is not going to happen.”
“If you want to avoid surgery, it is.”
My impingement proved challenging to work. Standard massage failed to coax the muscles to relax. For the first time in my physical therapy journey, I experienced the Graston technique.
The Graston tool looked harmless—little more than a stainless-steel tongue depressor. But as Zach moved it over the contours of my hip, the blunt edges communicated immediate, intense agony.
Graston was designed to break down traumatized tissue, provoking new inflammation so the body increased blood flow to the area to promote healing. The thin metal found narrow spaces along human anatomy, reaching irritated places even delicate human fingers couldn’t touch. Such as the thin line between the ball and socket of the hip. It was reportedly uncomfortable. To someone with a chronic pain condition, it proved sheer torture.
“This is against the Geneva Convention.” Lying on my side, I clenched my hands into fists and squeezed my eyes shut. I refused to cry. And, for once, I appreciated my mask’s ability to hide my face.
“Do you want surgery?” Zach asked.
“Slicing a person open with a knife is inhumane!”
“You know this isn’t a knife. It isn’t even touching your skin.”
I knew the Graston tool worked through three layers of clothing: tank top, shorts, and underwear. But my fibro nerves sent DEFCON-1 signals to my brain. “You enjoy torturing me, don’t you?”
“Highlight of my day.”
Normal brides spend the final months before their wedding fretting over last-minute details. I donned a face mask twice weekly to brave the torment of a Pilates machine and a Graston tool. Despite my constant reminders of the approaching nuptials, Zach refused to clear me for exercise.
“Are you honestly expecting to lose any extra pounds at this point?”
I turned a weighted pole around in my hands. “Do you know how much I want to hit you with this?”
Eventually, my hip joint relinquished its hold on the trapped muscle and released the nerve. Zach granted me permission for light routines, giving me an escape to online barre classes.
As the orthopedist reviewed my repeat scans, I held my breath, a monstrous hourglass trickling grains of sand in my head.
“Your hip looks better. If the pain returns, though, I’m recommending surgery,” he said, shaking a finger.
Tim and I married two weeks later—masks, hand sanitizer, social distancing, and all.
Fibromyalgia isn’t defined by any one symptom. Pain tops the list, of course, but nerve malfunction leads to a domino cascade of other issues. Dysesthesia is one of the more fun coconspirators on the list. Rather than pain, nerves report other sensations (cold, heat, tingling, stinging, or itching) for no good reason besides the weather, the angle of the stars, or the fact it’s Tuesday. The very definition of dysesthesia is “abnormal sensation,” and it’s a plague to chronic pain patients.
One of the NORMAL aspects of life with damaged nerves.
Like other fibro patients, I knew the input from my body wasn’t reliable. But in early 2022, my hands started going numb. I woke in the middle of the night with dead arms. I lost additional sleep flopping the limbs around like useless flippers.
Sitting on the couch one night, I experimented with different positions. If I held my arms straight, the tingling sensation in my fingertips calmed. Bent at the elbow, my fingers went numb in under a minute. And the more severe the angle, the faster the loss of feeling.
That wasn’t how dysesthesia worked.
“It’s probably nothing,” my neurologist told me. He handled my fibromyalgia, documenting changes in the condition. “But just to be sure, we’ll run an EMG. I’d rather not miss something simple like carpal tunnel.”
As far as testing options went, I ranked EMGs at the bottom. Getting electrified needles inserted into my muscles pissed off already friable nerves. The electrical current remained low, barely enough to cause a jump in the tested limb, but my body retaliated with deep aches for three days.
“You’ve got dropout at C7-C8. That could represent a pinched nerve. I can send you for an MRI and refer you to an orthopedist for a workup, or we can try physical therapy.” He raised his eyebrows.
My brain tried recalling anatomical sketches and determining where the cervical vertebrae ended. But my mind also shrieked alarm klaxons at the thought of another venture into the world of spinal fusion—this time near my neck. I sighed. “Physical therapy.”
Law of Physical Therapy #5: Never scream or cry because it only encourages us.
“You know, most people only have one issue with their thoracic inlet. You have the trifecta: your scalene muscles, first ribs, and shoulders.” Jonathan shook his head. Somehow, I’d managed to draw his name in the therapist pool again.
I lowered my hands from the doorway, shaking my arms to return feeling to my fingertips. “Go big or go home.”
Not only was my spine compromised, but so were my shoulders and elbows. Every hinge proved a point of contention for the nerves running from my neck to my arms. He pressed each joint during my consultation, watching as I nodded to indicate tingling.
“This should be interesting,” he said, jotting notes on my evaluation page.
“Aren’t you guys tired of saying that?”
He laughed. “Aren’t you tired of physical therapy?”
Physical therapy for nerves proved different than bones and muscles. I needed to build strength, but I also needed to protect my flexibility. Everything landed on my routine: Stretching, weights, massage, and the dreaded Graston technique. I bounced around the treatment area from one form of torture to the next, all to the glee of my therapists.
“Why do I even need that?” I demanded, clutching the arms of my chair.
“Your scalene muscle is part of the pectoral girdle,” Jonathan replied, Graston tool digging into the side of my neck. My scalene muscle—a stubborn bridge of tissue between my neck and shoulder—resisted every attempt at massage. He blamed it for most of my finger numbness and the overall tightness of my upper back and chest; the famous pectoral girdle responsible for moving the upper limbs (in the average person).
“Don’t think I need a pectoral girdle, either.” I gritted my teeth. Every press of the metal sent an electric pulse down my arm and over the top of my head. The breadth of the pain signal reinforced his words, but I wasn’t feeling charitable enough to admit my finding.
“I’ll put a note in your chart for your doctor.”
The strength in my arms improved. From the “limp noodles” of my evaluation, I moved up to resisting pressure from both directions. But the numbness persisted, particularly in my right hand. I fought to find a comfortable position when relaxing on the couch in the evenings. Icy fingertips worked on my keyboard during the day.
“Breathe in for me,” Jonathan said, his finger pressed against my collarbone.
I inhaled, confident the instruction was to ease the discomfort of the Graston tool against my knotted muscle. Instead, I felt an immediate stab through my chest. I yelped. “What the hell?”
“Nice work. That moved your first rib into position.”
I wheezed, debating whether or not to smack him. “I thought you were telling me to breathe in so it wouldn’t hurt!”
He laughed. “No, it’ll hurt like hell. But I needed the rib to shift to get the tool under the scalene.”
“Why do I even need a first rib?” I muttered. The first rib “floats” within the chest cavity, unattached to the sternum. Hence its ability to move around for the express purpose of therapist torture.
“Muscles attach to it.” He tapped my shoulder. “Okay, breathe in again.”
“Hate, hate, hate, hate you.”
My scalene muscles wouldn’t release their tension. They pulled on my first rib and shoulder, creating a nightmare for my posture. My spinal alignment kept shifting, applying additional pressure through my back and chest.
Everything conspired to leave me regretting mentioning any problems with numbness to my neurologist.
“Why did I ever want to be abnormal?” I asked Tim, curled up with a heating pad.
“You have to figure that answer out on your own.” He kissed the top of my head. “But I like that you’re not normal.”
“You realize I’m referring to my health and not my personality, right?”
He grinned in response.
Gradually, Jonathan increased the weights during my training, encouraging me to higher reps. My scalene muscles grudgingly consented to release, easing the tension on my shoulders. “Now, we just need to build up the strength in your upper back to support your posture,” he said.
My neurology recheck loomed on the horizon, so he cut back my sessions to once a week. He increased my “homework” and encouraged me to stretch as often as possible to keep my muscles from reverting to their previous tension.
This time, the return to my usual pain state would happen outside of physical therapy.
There’s a universal truth to all invisible illnesses: As soon as you make peace with one symptom, another arrives. Damage wrought on the body builds up. Then you make a few more frustrating trips to the doctor, and there’s either a new diagnosis or another shrug as they scratch their heads and attempt to puzzle out what your body has decided to do this time.
When the first twinges down my left arm announced their presence in August 2022, I assumed I’d slept wrong. My muscles were complaining about a lack of proper rest. (As if I’ve ever achieved a reasonable “rest and recovery” period)
I massaged the limb and expected recovery within a couple of days.
But things worsened. Suddenly common tasks such as washing my hair, getting dressed, and even stroking the cat’s head became pure agony. My arm rejected any movement, sending sharp, piercing signals from my elbow up through my neck. Even doing nothing seemed to offend the tissue (a state of affairs I found particularly offensive).
I guiltily restarted my stretching exercises (I could hear Jonathan lecturing me in the back of my mind), thinking the aches were a scalene muscle protesting my lapse in routine. My shoulders responded sluggishly, but the choreographed movements refused to touch the source of the pain, the hinge itself.
“You need to call the doctor.” Tim was riding high on previous successful wins with that argument.
“It’s just a sore muscle.” I’d endured two recent trips to the doctor for other conditions on his request. Now I was enduring a protracted battle with a gastroenterologist who couldn’t figure out the cause of my gastroparesis. And I had a new somnologist who wanted me back on the vile CPAP machine. (Nothing good ever seemed to come of making a trip to the doctor; I was ready to get back to hearing, “Everything’s normal.”)
He crossed his arms over his chest. “You can’t put on a bra by yourself.”
I lost my ability to protest. Twisting my arm behind my back had become an act of torture. And while it was amusing to watch him fumble with the simple catch (men, it seemed, have no dexterity for bras), my embarrassment over needing assistance for a basic chore kept growing. Giving a dramatic sigh, I collapsed back in my chair. “Fine. I’ll call in the morning.”
My primary care doctor probed the shoulder with gentle fingers, and she apologized for every wince her ministrations caused. “You might have a torn rotator cuff. I’m going to send a referral to an orthopedic surgeon. They’ll decide if you need surgery or if you can get away with physical therapy.”
I started laughing.
Law of Physical Therapy #6: Never lose count because you’ll start at one again.
“Ms. Kennedy? We received a referral for your shoulder. Would you like to schedule your consult?” the receptionist said over the phone.
“Sure.” I flipped my planner open.
I heard her pause. “This is the third time you’ve had physical therapy here this year. We’ve seen you for your neck, for vertigo, and now for a rotator cuff.” I heard a muffled laugh. “This doesn’t normally happen.”
I smiled. “Yeah, I’d imagine it doesn’t.”
“You really like it here, don’t you?”
“Planning to move in.”
I never envisioned spending so much time in physical therapy. It isn’t a normal part of fibromyalgia. Of course, none of my various injuries or issues have been strictly NORMAL, either—as my therapists enjoy reminding me.
For a condition defined by an abundance of “normal,” I’ve found myself thriving in the abnormal. Even if I don’t always appreciate the pain or therapy that comes with it.
The treatment area, therapists, and reception staff have become touchstones in my life. Every time my body breaks, they step in to get me back in working order.
Or at least as close as I’m likely to come.
Then we start the cycle over again with something else.