It all began subtly during my college years—symptoms that seemed trivial at the time but would soon change my life forever. Fatigue weighed heavily on me, along with a persistent low back pain that I tried to ignore. I also noticed an odd swelling near my sternum, where my first rib meets the bone. I consulted several doctors, but they found nothing conclusive. Despite running tests, no diagnosis was made. With no answers, I convinced myself it was nothing serious. Over time, even the fatigue seemed to fade.
But the lower back pain never went away.
As time passed, the stiffness became worse. I started waking up in the night, unable to move, convinced that my old mattress was to blame. I replaced it, hoping for relief, but nothing changed. My mornings were filled with stiffness and pain. As a university student staying in a hostel, my daily life turned into a constant battle—juggling the demands of my studies with the growing discomfort that plagued my body.
The breaking point came on the last day of my final exams. My back and hips were in so much pain that I couldn’t sit through the exam. I had no choice but to leave early, feeling defeated. Back home, I visited the Haripur DHQ hospital, many private doctors, and even the CMH in Abbottabad, yet nothing improved. I even tried physiotherapy, but the relief was fleeting at best.
I lost count of how many times I had blood tests done, only to hear the same frustrating response: nothing is wrong. But I knew something was deeply wrong. The pain intensified, spreading throughout my body. My right arm became stuck in place, unable to move, making even the simplest tasks impossible. I developed a fever, and the pain seemed to worsen every day.
Soon, the pain reached my jaw, making it so stiff I could barely open my mouth to eat. Headaches were constant, and I felt trapped inside a body that seemed to be shutting down. Then my knees began to swell—so badly that walking became a challenge. Desperate for answers, I consulted another doctor who found fluid in my knees and performed surgery to drain it. But the pain lingered, still a mystery to all the doctors I saw.
At this stage, I was bedridden. I couldn’t move without using a stick and could barely take a few steps without extreme effort. The pain and disability had taken over my life.
That was when my younger brother’s friend discussed my condition with his cousin, a doctor. He invited me to his home to review my reports and examine my joints. After assessing me, he suggested I visit the KRL hospital in Islamabad, where he worked. There, a team of doctors took a closer look at my case. They ordered new tests, including X-rays of my hip bones, an ESR test, and the crucial HLA-B27 blood test.
The results finally provided some clarity. The HLA-B27 test came back positive, and my ESR levels were alarmingly high. I was referred to a rheumatologist, who carefully examined my condition and confirmed the diagnosis of ankylosing spondylitis—a painful, chronic disease that affects the joints, especially in the spine and hips. They explained that while the disease wouldn’t kill me, it was permanent and there was no cure. I would have to manage the pain and symptoms for the rest of my life. Even they didn’t know what triggered it.
I started treatment immediately, taking anti-inflammatory drugs, painkillers and steroids to relieve the pain. Slowly, I began to regain my mobility. After weeks of treatment, I was finally able to walk without a stick. However, the pain persisted, never fully leaving me.
Eventually, I found a job and started working again, which became an essential part of my journey. Having work to focus on helped distract me from the ongoing pain. But even after nearly ten years, the pain hasn’t gone away. It has left a permanent mark on my posture and has changed the way I walk.
Despite treatment, I am still living with this disease. The pain continues to affect my body daily. Even though I can walk without assistance now, the pain is a constant companion, reminding me that ankylosing spondylitis is something I will always have to endure.
Despite everything, I continue to push forward, living each day with determination and hope.
Not sure what to do next
Pelvic pain, body pain, anxiety
Levator muscle syndrome; Levator ani syndrome
