Feb 18, 2024

The gray days of chronic pain

Image from Sukhjinder | PixaHive
Image from Sukhjinder | PixaHive

This post is lightly edited and adapt from Sam Gittleman's Substack.

A minute into the opener’s set, a security guard approached me in the general admission section’s only row of seats and softly asked if I had reserved ADA accommodations. I didn’t know you could, nor realized that’s what this section was, nor had any pitch of why I needed one beyond that I had foam rolled my every muscle and muscle attachment before the show. That beneath my corduroys, two layers of athletic tape cupped my knees into place so I could at least stand in line nicely with my friends, get into the show before the pain made itself known, maybe prevent a night’s joy from reducing my walking range from three blocks down to one. I just found a chair and felt the tension gripping my mind and body release.

Alas, I ambled over to my crew and half-danced in angular movements that felt safer, more controlled, until even those hurt. Numbness crawled up my shins, weight shifted in search of relief, I tried not to think about the walk out of the venue. Moments of closing my eyes to sink into the show’s bliss, pain briefly fading. Moments glued in place watching everyone around me bob, dance, exist comfortably, reminding me of all I can’t do. Mostly stuck in the gray space between.

Five years ago, my left cleat lodged a small hole in a field in Gilroy, California, as I lunged after a frisbee. My knee collapsed, and kept collapsing. But nothing looked broken to the trainer, so it was play on… if you feel up to it. So I felt up to it. And with the help of a value-sized ibuprofen bottle I kept playing and the knee kept hurting and then both knees started hurting and it became clear it wasn’t just going to get better like these things seem to do for other people. For the next five years of my life, I would explore every avenue of recovery the medical field had to offer, only to discover cul-de-sac after cul-de-sac. 

The trainer had explained, or maybe hypothesized, that my left patella tendon had subluxated — popped out of place and then back in — so that’s what I parroted in my pinball between practitioners. One handed me a packet on the med diet and suggested my pain might be psychosomatic. One took some x-rays, shrugged, and sent me to physical therapy. That PT assigned me an hour of daily stretching and strengthening, which I woke up early nearly every day to complete, a big commitment for college me, each glute bridge and hip opener a step closer to recovery.

With a walking range smaller than my college’s campus and a biking range requiring a gentler slope than the uphill overpass to get there, I’d pedal to the parking lot at the base of the hill and squeeze my bike up its elevator. Swerve around passerby on odd paths to avoid stairways while intrusive thoughts asked if the whole thing was in my head. Tell myself that wouldn’t explain why the stairs hurt a little less when I stretched first and why I felt pain when I pushed that one spot on the inside of my knees… but the ruminations continued. 

On the rare nights I felt up to going out, I warmed up, wore a brace, and iced when I got home, no matter the hour. That or hate myself in the morning. Sometimes that and hate myself in the morning. As I pedaled my ride of shame up the overpass to campus, no time for the elevator, I’d hear my knees hiss that my hour of lamed movements on the dance floor and the three-snooze morning that followed just set me back a week and what was I thinking and maybe I’d never heal now.

Across graduations and pandemics, new cities and hobbies and friendships, I worked every joint and muscle my collage of PT’s could prescribe. I drove around walkable parts of town, fretted over finding proximate parking, rode electric scooters across the curb from my friends when we didn’t. Shoved my bike in the trunk when there was a park to navigate. Brought a book if others might want to hike. Attended parties but mostly relegated myself to the couch.

As my void of semi-ableness extended into the plural, it became clear that my daily PT routine wasn’t going to fix me. I felt bumps of short-term improvement — days, weeks of a little more comfort, but always a regression after I pushed my limits on the dance floor, reminding me through gritted teeth that nobody had ever really told me what was wrong. The cycles of regression would make sense if I had a secretly torn meniscus, but the scans continued to show nothing. So I broadened my search.

I shared three months with Ben “Knees Over Toes Guy” Patrick and his ATG (Athletic Truth Group) program. A former denizen of knee purgatory, he now dunked on basketball hoops and the medical establishment with his “2,494 knee success stories.” Six days a week, I propped my phone against the sides of elliptical machines to film my backwards treadmill walking, hamstring nordics, and ATG split squats, returning some version of “looks good!” a day later from the dude manning their portal. After those three months — their recommended trial length — my two-block walk to the gym remained full of stiffness. What worked for others hadn’t worked for me.

Then I received arthroscopic surgery in each knee, figuring if nobody could tell me what was wrong, maybe sticking a camera into my knees could. I wanted to believe the kindly surgeon who told me I was too young for this. His cautions around pain and recovery time weren’t considerations of mine, just content for phone calls with family members. I only cared about discovering the truth of my knees; only feared that we wouldn’t find anything.

As I emerged from the haze of anesthesia, the surgeon approached me with the answer I so sought — a vastly overgrown plica and some built-up scar tissue. He’d removed both from the same holes the camera went down, holes that left scars I grounded myself in on the hardest days of recovery. The knee pain was real. My body hadn’t been making it up. I was willing to do any amount of rehab for this certainty.

The surgeon referred me to a nearby PT group. The therapist skimmed my intake sheet, manipulated my resistant leg around, and then set me on a light circuit. I turned to ask him how my form looked and met a Dell laptop. Tried again and found him with a second patient. I quickly estimated that purchasing all the necessary equipment for the exercises he had assigned me would be less expensive than a single session. Then he strapped me to a table and electro-stimmed my left quad into firing on its own again. Set me on intervals of exogenous twisting flexes I grew to enjoy like a caffeine binge for my muscles.

For six months I measured time in visits to that PT office. At the peak of my post-surgery wave, I danced, walked my family’s dog without having to turn around halfway, and felt summer course through me. But after my helmetless crown met the ground on a bike ride back from a PCR test, a serious concussion triggered an inevitable regression that ended in the familiar void of my physical therapist out of ideas, and my surgeon telling me there’s no way the plica could have regrown that fast — more experts telling me they didn’t know why I was back in everpresent pain. I kept looking.

I discovered a regenerative medicine center that put an ultrasound machine to my knee to identify hyper-specific problem areas in real time. Why had my surgeon not done this? Too cutting-edge for mainstream healthcare, they explained to me in front of a wall of signed thank-you posters from professional athletes. In those problem areas, they performed prolotherapy, injecting a dextrose-based solution to artificially induce inflammation, triggering the body to heal itself. It felt nice to have a new hopeful thing to share, but the weeks of minimal mobility set me back more than any benefit from the two rounds of injections.

I received acupuncture, dry needling, cupping, circumin pills, and bloodwork. I visited the Cleveland Clinic’s National Consultation Service. Little changed. I found a Rolfer, a lovely gray-haired, soft-spoken former hippie who taught me about fascia and mycelium. I learned from him that the body’s an integrated system in which everything affects everything. So just fixing my knees, as my surgeon had, might not fix my knees. Barring a tear, knee pain often comes from problems in the feet or hips. The hips connect to the back. My back had hurt at some point every day for the past few years. I had mentioned this to most of my prior practitioners — why had no one investigated?

I felt great after each Rolfing session, invigorated by the intensity of the bodywork and by being told my hips looked more aligned now. But, familiarly, the soreness would return, even as we zoomed past the suggested allotment of sessions.

I learned from a podcast with a pain psychologist that, on its way to becoming our experience of pain in the brain’s processing centers, sensory information travels through the amygdala (our primary emotional region, among other things). Explaining why I could walk further with friends and less far when stressing over how many more blocks I had to go. Why hadn’t anybody recommended a pain psychologist?

Friends asked for status updates. I said that I started seeing this great new physical therapist. She works with a lot of dancers. Thinks holistically and logically explains problems. Actually watches my form. We laugh a lot.

Like this, I explained my way into numbness. When asked how I felt, the answer was the same as I always felt — stuck. But I didn’t want to say that. So I said what the practitioner said. The more I did this, the more I felt like my own doctor, distant from my inner sense of experience. Rarely did I sink into the pain that dulled colors and turned blue skies overcast. The pain of my pain.

Every month, my physical therapist developed a new hypothesis for why I was hurting. Every month, I’d think this is the time and get a little better, then plateau, then lose a little more hope. I’d find thin strips of grass in gas stations for mid-roadtrip pelvic floor workouts and wonder why. Did my knees hurt in the parallel universe where some animal dug their hole in the ground a few feet further east on that ultimate frisbee field? Did the hole in the ground just trigger the rebound effect of a childhood dedicated to over-exerting a misshapen body? A pigeon-toed, bow-legged, who-knows-what-else bag of bones crackling with stiffness, who played three sports a year at 110% and occasionally tried to prove something on the squat rack to the C4-huffing blender bottle protein shake crowd.

I never said this out loud, but, deep down, I felt I would always be this way and I would never understand why. 

Four years in and out of other sources of hope, I signed up for a month-long Yoga Teacher Training in the Berkshires, figuring dedicating my days to alignment, mobility, and mindfulness might unveil some answers. Even if I didn’t discover the source of my ailment, I would grow my capacity to help people avoid a similar fate.

A few days in, I meandered down the yoga center’s big slope in search of a community bonfire. Reaching the bottom of the largest hill I’d risked traversing in years, I realized the pit lay on the opposite side of the campus. With no option but to immediately hike back up, I clenched my hiking poles and broadened the angle of my feet. A similar broadening had felt good in my deep squat earlier in the day — perhaps it might aid my walking form. Growing more confident with each pain-free step, I made it to the top with minimal stiffness, stunned and brimming with cautious excitement.

The next morning, I asked our anatomy specialist for his perspective on why this might have worked. He suggested that I might have just felt the benefit of walking without my usual pigeon-toed gait. He then watched me stand and noticed my flat feet pulling my ankles inward, which caved my knees in with them. Knee cave puts undue stress on the medial parts of the knee joint, which is where I felt most of my pain. And it turns out that flat footedness is something I can change. By brightening up my arches, I can train my foot muscles, fascia, tendons, and ligaments to arch. Just like good posture, it takes a long time to change, longer with each year out of alignment. So I began brightening up my arches each time I sat or stood. In the mornings as I brushed my teeth, I set a lacrosse ball underneath my feet to release my tight tight fascia and enable the brightening, understanding that I wouldn’t see much change for months.

At our follow-up meeting, rather than just observing my static posture, the anatomist watched me move. He noticed that my pelvis tended to jut forward, forming a hammock of my back, and, crucially, leading to me pushing off from my heels instead of the balls of my toes as I walked. This heel push smashed my femur and tibia into each other right at the knee joint, over and over. Especially when combined with the inward cave of my knees, of course this would cause knee pain! So I began re-learning to walk, stand, sit, and move. Instead of just a list of instructions, he explained the connective chain of why behind each adjustment’s impact and invited me to feel the differences in my body. To build a proprioceptive and mechanical awareness of what alignment feels like. Turning inwards instead of relying on some outside force to fix me.

At yoga teacher training, I picked up the phrase “motion is lotion” — a reference to the secretion of joint-lubricating synovial fluid when we move. I thought back to an old physical therapist who had suggested that I take laps around my block to break up the long periods of sitting remote work had demanded. I hadn’t consistently listened to this advice because it hurt and I only carried a loose grasp of why it would help me. Now, with each piece of understanding I gained around the reasons for my pain, I emerged a little more from the clouds of confused anxiety, out of the gray void of chronic pain. And out of that void, I could start to heal.

As the world began to open up to me, my initial feeling was not relief, it was anger at a siloed medical system full of narrow minds and incentives to keep patients coming back. Caregivers who only care for the physical. Surgeons who forget patients have other body parts besides the ones in pain. Doctors who don’t watch their patients’ walking form. Physical therapists who don’t watch their patients at all.

But as my initial wave of feelings receded, I grew to believe the practitioners of false hope and static specialization did their best. I choose not to believe that my kindly surgeon saw my outcomes in terms of expected value; that my physical therapists knew the longer I took to heal, the more I’d continue to pay them. Instead, I blame the system that just teaches knee surgeons knee surgery things. That forces physical therapists to schedule simultaneous appointments to retain their in-network prices. That treats its disembodied analyses as whole truths and skims over any existing pre-conditions that might perpetuate the problems.

I’ve grown to believe that in my state of chronic pain, nothing someone could do to me was ever going to fix me; lasting change needed to come from within. I completed my regimen of lower-body strengthening and mobility obsessively, but sometimes while looking at my phone. I received all manner of interventions to release the impacts of my problematic movement patterns and then just resumed those problematic movement patterns. Feel better, regress, wallow in fear and sadness until my next $150 appointment.

So I warm up my muscles and muscle attachments, then go about my days. If I hurt, that doesn’t mean I messed something up, undid months of effort. It just means my knee hurts — I see now that my fear of messing something up motivated a sedentary lifestyle that did mess things up. Instead, I can pause, mobilize some sore areas, then keep going.

Five years in, I’m finally starting to understand a lot of what has caused my knee pain. I feel myself unlocking with each layer of misalignment peeled back. Yet I’ve regressed before and accept that I might again. I imagine there will always be parts of me to fix. For now I’m still riding e-bikes to the subway station, still finding thin strips of gas station grass for mid-roadtrip mobility work. But as I lie in that grass, I no longer stare up at a grayscale sky, stuck in the pain of my pain. I no longer wonder how long it will be like this, or if it will always be like this.

Sam is a yoga teacher, coffeeshop dweller, and high school humanities educator currently living in Brooklyn, New York. Originally from Minneapolis, he attended WashU in St. Louis and spent last year teaching in Johannesburg, South Africa.

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