My Journey with Ankylosing Spondylitis (10-ye... - Pain Concern

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My Journey with Ankylosing Spondylitis (10-year journey)

Albatrossss profile image
11 Replies

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.

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Albatrossss
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11 Replies
Capergal70 profile image
Capergal70

Hello, I myself do not know a lot about this condition, but the Gene is in our family and I have a niece and nephew suffering from this. . My heart goes out to you knowing the pain and struggles you have endured.

Albatrossss profile image
Albatrossss in reply toCapergal70

I’m sorry to hear that your niece and nephew are dealing with the same condition. How is your niece & nephew doing now?

Capergal70 profile image
Capergal70 in reply toAlbatrossss

My niece is just starting her journey with this insidious disease, she is a nurse and is finding it very difficult. She is working with her doctors ,looking for ways to help. As for my nephew he is older and he does live in London. We are all from Canada I don’t know a lot except he is in great pain but able to hold down an office job and had at one point found a vegan diet helpful.

Albatrossss profile image
Albatrossss in reply toCapergal70

Has he been diagnosed with any specific illness? I am also in a lot of pain. Despite this, I wake up every day with the pain, endure it throughout the day, and go to sleep with it every night. However, the pain is much less intense during the day compared to mornings and nights.

Tim61 profile image
Tim61

Hi Albatrossss, You must be a really strong person to have been able to go through all of this , and still are going through it , I suffer from Chronic pain due to having had a Neuroblastoma at the age of Eight in 1969, and I feel exhausted after most days, from the Chronic Back condition I now have.

Albatrossss profile image
Albatrossss in reply toTim61

How is your health now, and what medications are you currently taking?

Defenders profile image
Defenders

Hello, I’m Isobel from the UK 🇬🇧. My journey started when I was prescribed the antibiotic Ciprofloxacin for sinusitis. Peripheral neuropathy was the first thing, 10 years later I still have it in my lower legs and feet, every day is the same, tinnitus, dizziness, tendon and muscle problems. Now, as if it couldn’t get any worse, I have been diagnosed by a Professor, one of only two consultants in the country who accept that a Fluoroquinolone antibiotic can harm, with Seronegative Spondyloaropathy. I guess this is similar to what has happened to you, but I’m not sure. It causes pain similar to Rheumatoid Arthritis. The pain in my joints is truly awful. What is different, is that doctors don’t want to know, so you are left on your own to find out what’s going on. At least I have 2 diagnoses, peripheral neuropathy due to Ciprofloxacin and Seronegative Spondyloaropathy triggered by Ciprofloxacin. Two horrendous types of pain I am meant to endure. Best wishes to you xx

Albatrossss profile image
Albatrossss in reply toDefenders

Thank you for sharing your thoughts. It sounds like you're going through a lot, and I truly hope you find relief soon & hows your condition NOW ?

I am dealing with Ankylosing Spondylitis (AS) can be incredibly difficult due to the constant pain, and I understand how exhausting it must be. As for me, my condition remains challenging, but I'm taking steps to manage the pain and improve my mobility, though it's never fully gone. I try to stay focused on the small victories, even on tough days. It's important to stay connected with others going through similar experiences, as it helps to know you're not alone.

Wishing you strength and better days ahead.

Defenders profile image
Defenders in reply toAlbatrossss

I wish the same for you. I have constant peripheral neuropathy which is similar to having pins and needles for 10 years with no let up, plus Seronegative Spondyloaropathy, which is Rheumatoid Arthritis, so it causes constant pain in the joints. But, I’m older than you, my husband passed 8 years ago today 12/12 and he was the love of my life so I’ve had a life prior to this torture. I’m in a group of similarly affected people. We are angry at Bayer the manufacturer and the MHRA, for allowing it to be sold to the NHS in this country but world wide to every other country and ultimately injuring possibly thousands, possibly millions of people. BW Isobel xx

Albatrossss profile image
Albatrossss in reply toDefenders

I'm so sorry for your struggles, Isobel, and for the loss of your husband, especially on this difficult day. Your resilience in facing both physical pain and advocating for justice against Bayer. It’s good you’ve found support in your group—sharing and connecting can be a powerful source of strength. Wishing you comfort and peace. 💛

Defenders profile image
Defenders

💛

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