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Spondylo-what? My journey to spondyloarthritis diagnosis
Part 1 of 2 My body has hurt for as long as I can remember. At first it hurt from the thousands of hours I spent each year training as a high-level competitive gymnast. From ages 6 to 17, I spent my days pushing my body to the limit and defying gravity. My muscles ached, my hands ripped, and occasionally my bones broke. And that was a given of the sport. When I stopped gymnastics, my body continued to hurt. While my calloused hands became smooth, and my broken bones became strong, my body continued to flare in cycles of pain that left me frustrated. I put off joining the track team for a year because running made my back feel like flames were spreading across my low back. Laying on my stomach caused searing pain in my hips. And I figured this was the penance owed by a body that spent thousands of hours pushing to the limit. I learned to live around the pain and hoped it would disappear. I found a new love for running when I started college. I loved the slap of my feet against pavement as the beauty of the world raced by me. I loved blasting music and losing myself in my thoughts. As my runs became longer, I experienced aches and pains that I attributed to pushing myself too hard. My ankles and hips would ache with such ferocity that I assumed I must be injured. And on occasion, I would wake up with so much sacroiliac (SI) joint pain—the joint connecting the pelvis to the spine—that I would need to stay in bed for the day. I began to realize that my experience was abnormal when I learned that my friends from gymnastics did not experience debilitating pain. I began reporting joint pain to every doctor I saw—several gynecologists, primary care doctors, physical therapists, and a hematologist—and every single one of them told me my pain was from my years in gymnastics. I was never given a referral to rheumatology, and was never asked follow-up questions about joint pain, and never had inflammatory panels (often used to detect autoimmune diseases) done. Fast forward 10 years, and I am 27 years old. The pain has become more intense and more frequent. I have to stop running altogether, and finally have a team of physical therapists who take my pain seriously. But none of us understands why my body seems to flare. A year into physical therapy, everything comes to a head. I return home late from work, my SI joints hurting so intensely that I can barely walk. When I wake up the next morning, I cannot move. Sitting up and rolling over result in waves of pain so intense, I feel nauseous. It takes me an hour to sit up. I have to drag myself to the bathroom, and it takes another hour to get into the shower. I send a panicked email to my physical therapists, book a virtual urgent care appointment, and Instacart myself crutches. I lay on the floor in my room sobbing in pain and despair. I will spare you the gruesome details of the 72 hours from the time I woke up, to the time my physical therapist diagnosed and adjusted my dislocated SI joint. But in those hours, something important happened—a physician finally listened. Of all the years I spent begging doctors to take me seriously, a virtual urgent care doctor listened to me cry in pain and tell my story with a look of astonishment. I told her that a mere 24 hours before, I had sat in a gynecologist office complaining of joint pain, and had labs done. “She did not check your inflammatory panels?” the urgent care doctor asked in shock, “Let me check those for you.” Those labs confirmed elevated CRP (indicating inflammation) and the presence of the HLA-B27 gene (highly associated with autoimmune diseases and arthritis). MRI imaging plus those results confirmed my official diagnosis: non-radiographic axial spondylarthritis—arthritis of the spine, pelvis, and sacroiliac joints. After over a decade of advocating for myself, I finally had proof. I did not make this up. And I did not do it to myself. As I write this, I still marvel that in all the years I spent informing doctors of my joint point, not a single one believed me enough to run a simple lab. A lab that gave me answers. A lab that could have saved me years of pain. The months of healing have not been easy. I’ve spent countless hours under the care of my physical therapists, K and E. I cannot tell my story without thanking them. K did research on my diagnosis from the moment it was received and has not stopped since. And E tenderly listened as I cried tears on the PT table, never missing a chance to make me feel supported and affirmed. My story is not unique. The average time to diagnosis for spondyloarthritis is between 7-10 years. Women are more likely to experience longer delays to diagnosis, or never be diagnosed at all. Today, 5 months later, I went on my first hike since diagnosis. I received my first dose of cimzia, the biologic to treat my arthritis, a few weeks ago.. Pain twinges briefly from time to time as I hike, but ove
