Autoimmune Stories:

Anthony's Story: Waging a War Within

A Journey Through Ankylosing Spondylitis

Anthony Simpson January 10, 2024

Anthony describes the daily agony, numerous medical consultations, and misdiagnoses before finally receiving the diagnosis he suspected: ankylosing spondylitis. The revelation brought a mix of emotions, but armed with knowledge, a more personalized treatment plan, a focus on fitness, and a positive mindset, he now feels prepared to face the difficult journey ahead. His story explores the transformative power of pain, presenting it as a teacher shaping resilience and identity. Despite the ongoing battle, he embraces a path forward, using the affliction as a catalyst for personal growth and enhancement.

Anthony's Story

In the blackness of the early morning, before the day had begun to shape itself, a suffocating grip abruptly awakened me, as if an unseen python had coiled its presence tightly around me, each breath becoming a laborious struggle against its constricting embrace.

The pain started as a sinister whisper in my lower back, then surged up my spine like a bolt of electricity, enveloping my chest in a wave of misery.

My ribs creaked under this imagined grasp, each breath a fight against an unseen foe. Each morning’s struggle wasn’t an anomaly but a recurring testament to the reality of living with Ankylosing Spondylitis (AS). This rare, chronic condition stealthily wages war within, inflaming major joints and entwining my body in a web of pain and stiffness, threatening the very essence of mobility. Lying there, consumed by agony, I reflected on the constant battle my body waged against me, a ferocious adversary within. In those quiet, painful moments, I would close my eyes, searching memories for a time when this morning ritual did not exist.

I have been at war with my body for the last ten years. Each battle is a fight with chronic pain.

These clashes have led me to encounter numerous orthopedic surgeons, pain management doctors, and physical therapists, while relying on a wide range of medications, from over-the-counter anti-inflammatories to potent opioid painkillers, typically intended for cancer patients. Throughout the years, the diagnoses exposed a torn labrum in my left hip, a lumbar disc rupture, and two more herniations in my neck, while arthritis and stenosis wreaked havoc on my spine. Despite enduring multiple surgeries, countless cortisone injections, and rigorous physical therapy, the pain remained undefeated, unyielding to any attempts at relief.

Chronic pain had become a familiar opponent, a daily clash fought in silence.

Two years ago, my battle took a new turn. I awoke to a searing pain that reverberated through my chest and ribs, amplifying the already tumultuous eight-year-long struggle. The overbearing torture became my morning alarm, a fiery sensation burning inside my chest, radiating through my ribcage and encircling the thoracic region of my back. Even the gentlest inhale or shift was unbearable. For the next hour, I would focus on taking slow, deliberate breaths, gradually increasing my body’s range of motion until I could muster the strength to emerge from my bed. Embracing movement proved to be a powerful antidote. Unlike past maladies, the pain in my torso melted away as the day matured. Only a faint trace of discomfort remained by lunchtime. 

The intensity of my pain mirrored my frustration. Trips to the orthopedist and pain specialists seemed to be unproductive. Imaging of the thoracic area yielded unremarkable findings.

My complaints of discomfort fell on deaf ears.

The doctors attributed the pain to my past surgeries while confronting me with skepticism as if I were a hypochondriac. Despite presenting extensive research I had meticulously collected on my symptoms, the doctors swiftly brushed aside any consideration of a possible Ankylosing Spondylitis diagnosis. Hope was quickly fading away. During each appointment, the doctors would propose a different treatment option, dismiss the possibility of AS, and provide no respite from my recurring pain. The predictability of each appointment signaled the need for a change.

The impression that the physicians were downplaying the significant correlation between my recent string of orthopedic injuries and the ongoing chronic pain lingered in my mind. My doctors, akin to sailors who merely patch the cracks of a vessel without seeing the entire boat, concentrated on treating symptoms rather than revealing the underlying cause.

Guided by my intuition and armed with thorough research, I found myself in the office of a specialized rheumatologist who dedicated her practice to autoimmune diseases such as Ankylosing Spondylitis.

Her comforting bedside manner, her insightful questions, and the depth of her knowledge left me feeling assured of my choice of care. My treatment evolved from a one-size-fits-all perspective to a bespoke approach that assessed all my symptoms, listened attentively, and delivered a holistic solution.

Prior to that rheumatologist appointment, each battle with my body ended in a losing effort. For an arduous nine-year period, I found myself locked in an uphill fight against an elusive antagonist, with no set rules of engagement. The battlefield tilted in my favor inside the rheumatologist’s office. A vial of blood and an MRI confirmed my nagging suspicion – I had Ankylosing Spondylitis.

Upon hearing my diagnosis, a tumultuous sea of emotions engulfed me, each wave a surge of disbelief, fear, and then an unexpected sense of liberation.

The question of identity — ‘Am I now Tony, forever defined by Ankylosing Spondylitis?’ — echoed briefly in my mind, only to be washed away by a sense of relief. This newfound clarity, though shadowed by the reality of a lifelong journey, illuminated the path forward. Armed with knowledge, we were no longer fighting an invisible foe. My enemy now had a name, and with that, a newfound strength coursed through me.

In the relentless quest for the perfect combination, my doctor and I have spent the last year testing numerous medications. Through extensive drug experimentation, we ultimately discovered the most effective treatment for my AS. A monthly injectable biologic, coupled with a renewed emphasis on fitness and a positive mindset, has proven to be the most successful treatment for pain and inflammation. Although I have maintained an intimate 30-year-long relationship with weightlifting and conditioning, my primary motivation has regularly been on the aesthetics of my body.

Incorporating extra rest and recovery into my workout routine, as well as being mindful of my body’s needs, has played a vital role in treating my AS. 

Sarah Anne Shockley, in her insightful book ‘The Pain Companion,’ suggests that healing from chronic pain is less about subduing the physical sensation and more about redefining our relationship with pain, ourselves, and life itself. Her words resonate deeply with my own experience. Throughout this decade-long odyssey with Ankylosing Spondylitis, pain has not just been a physical presence; it has been a relentless teacher. Its lessons have pushed me into uncharted emotional depths, challenging me to either be consumed by its darkness or to rise above it. This journey has sculpted my identity, my resilience, and my perception of life. While often unbearable, the pain has unwittingly bestowed upon me a profound choice: to let this affliction weaken me or to harness it as a catalyst for growth and resilience. In the face of persistent adversity, my choice is clear – a path forward to the unwavering enhancement of my mind, body, and soul.

Global Autoimmune Institute Mini LogoThe views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.

Interested in sharing your story of autoimmune disease or chronic illness? Head over to How to Tell Your Chronic Illness Story for prompts and tips!

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