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.
Written by
Albatrossss
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My story is very similar to yours, although I went 25yrs before being diagnosed. My gps always blamed my career as a trauma nurse for the pain. At 29 I was told there were changes in my sacroiliac joints that suggested, I would struggle with my back. I was gobsmacked and never asked more. At 46, I suffered horrendous muscle pains as well, and was diagnosed with polymyalgia. I developed GCA symptoms which my local rheumatologist ignored, saying I couldn’t be that unfortunate. I seen the countries 2 top experts, who diagnosed the GCA. One of them however, felt there was an overlap with another condition. She ordered X-rays of the sacroiliac joints, which were completely fused. She then referred me to her colleague who works with Nass, who confirmed ankylosing spondylitis, and mri confirmed the fusion of the sacroiliac joints, but ribs as well. My chest expansion is 0.8cm, I have pulmonary fibrosis from years of uncontrolled inflammation, and an enlarged heart for the same reason. I had steroids from the polymyalgia diagnosis, but when they confirmed AS, I tried to wean off the steroids, due to osteoporosis risk, I became very ill reducing. My gp referred me to an endocrinologist with suspected adrenal insufficiency. Unfortunately 3 weeks before my appointment with them, I had a severe stroke, due to an adrenal crisis. My adrenals have atrophied, I have Adrenal Insufficiency, and I produce zero cortisol. I now need steroids for life, have to preplan each day, and take extra steroids when I think my body should produce more. Unfortunately unlike cortisol they don’t work instantly, so your left feeling like death till they kick in, I also have to carry an intramuscular steroid injection, and family have been trained to inject if I can’t. So many issues, and the heart and lung problems I’m told, I probably wouldn’t have had I been diagnosed 25yr earlier. Although in those days biologics weren’t a thing, and it was only nsaids available. I’m told my AS is aggressive, you can be positive for the gene and not have AS. I’m an identical twin, I’m positive and have AS, my sister will be positive too, but doesn’t have AS. My AS affected literally every joint, both kneecaps are subluxed from the tendons stiffening. I’ve had surgery on two toes to correct tendons, which had dislocated my toes, but need to go in soon for further surgery, then they’ll start on the right foot. Thankfully I only have a mild weakness down my left side from the stroke, but it left me with memory issues. My work colleagues you to say I should write a book 😂. Anyway just wanted to say your not alone, I know of others with similar stories. It doesn’t help that so many see AS as a man’s disease. Hope you have a lovely Christmas 🎄
I'm sorry to hear that you're going through this as well. How is your condition affecting your daily routine now? Also, this illness isn't just limited to men; it affects women as well.
Your work colleagues are right, you should write a book because you've shared your story in such a great way. 😊
I’m extremely stiff, and rely on a walking stick with seat, and have to take frequent breaks. Inclines are extremely challenging due to having no chest expansion, I also have Atelectasis, pockets of collapsed lung, due to lungs unable to inflate fully. I push myself to do what I can, even though others would rather help than see me struggle. I was medically retired after the stroke, but I still miss my job. My hubby is one in a million, always tries to encourage me to leave tasks to him, and never grumbled at my 2mph pace 😂. He’s always fighting my corner, and researches all my conditions thoroughly, so he knows best how to support me. I’m extremely lucky. My glass is always half full, and I’m never defeated 😂🤗
You’re incredibly strong and resilient, and your positive attitude is inspiring. It’s amazing that your husband is so supportive and always has your back.
I too am in a lot of pain. Every day is a challenging day for me, filled with stiffness and pain. I am now 31, and I worry that as I get older, I might need support to walk as well.
You're absolutely right—gentle stretches can make a big difference. It's great that even your fused ribs benefit. Take care, and keep it up! 🤗
My doctor suggested the same—to maintain good posture and keep my bones moving daily with stretches and similar exercises.
Dear Albatrosssss,
Am so sorry you're going through much. When I advise anyone, I refer to my personal experience not just heresy.
After I had TAH+BSO in Feb 2019, everything changed. Talk of very severe headaches, lower back pain, frequent UTIs, cervical spine issues, lumbar spondylosis, stiff thumbs and painful big toe spasms, knee pain, extreme hotflushes, eye sight problems, buzzing ears, urine retention,,, etc. Then, I had an appendectomy. Life is never the same. I even got denied promotion in the capacity I had been working before zi had the surgeries.
But I decided no pain would put me down. I've created my own world. One of personal happiness no matter what. I got tired of doctoral referrals and medication. I only visit when there's total need for physio or related issues. I became my own doctor; from drinking freshly simmered Neem leaves juice to freshly blended aloe vera, to supplements, name it all. I stopped it after along while. Supplements were expensive.
I got tired. I decided to embrace the enormous CHANGES my body was experiencing. I accepted the new me. I went slow on supplements as well.
Q
1. I changed my lifestyle and diet. Please note that what worked for me is on a trial and era basis.
I reduced the intake of salt. No added sugar.
I also use sea salt only.
I use little to no oil (liquid oil).
I blanch my food as opposed to boiling.
All or say 99% of my food contains garlic, red onions, and ginger. I would want more herbs, but life.. Once in a while turmeric. Then I use cinnamon. Lemon is on and off on weekly basis.
I eat white meat (broiler chicken are no go zone for me). I eat more fish and the traditional local farm chicken in a while. Red meat is a once in a blue moon and usually boiled.
2. I've learnt the art of listening to my body intently. When it complains, I flash back on what I did or didn't do. That way I rule out the causes and take corrective action to avoid further damage Eg. too much bending.
3. I do research on whatever am feeling. I search the symptoms and related causes I presume might have led to it. When I feel overwhelmed, I talk to the doctors. I explain myself on phone without paying for it. But if they feel it warrants visiting their facility then I comply. I have retained 1 physiotherapist- a senior in the field who understands my body issues and what to do or not to.
4. Drink alot of water to flush out medication and other toxins. I don't consume alcohol and carbonated drinks. (That's me. Team natural)
5. I watch my weight so that I do not over burden my knees to carry what it can't handle.
6.Light exercising to flex the muscles is necessary. I walk alot but I rest along the way when I feel it's too much.
Understanding my body has helped me realize that my healing and survival starts with me and not the doctors. There are days when I feel some pain but positive living has kept me afloat. For healing is more internal (spiritual) than external (physical). I've set my mind at ease by not dwelling on the negative.
Be happy! Trust God for healing!
Disclaimer: Please note that we go through pain in different degrees. We handle it differently. The above is my way of reducing the intake of medication and having locus of control of my own body. I am not a medical practitioner.
Thank you for sharing your story and advice. Your resilience and proactive approach to managing pain through lifestyle changes, listening to your body, and staying positive are truly inspiring. It’s a reminder that healing starts from within, and maintaining hope is essential.
I deeply appreciate your encouragement and will take your advice to heart as I navigate my own journey. Wishing you continued strength and healing.
Thank you. It's not easy to live with pain, big or small. If only we could have total relief. May God help us. Stay encouraged.
Thank you for your kind words. You're absolutely right—living with pain is never easy, no matter its scale. Here's hoping for strength and better days for both of us.
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