Mysterious Chronic Pain Throughout My Teens

My name is Étáin, I am a 22-year-old woman from Ireland. I have been living with symptoms of AS for well over 10 years and was only diagnosed at the age of 21. My story is long and complicated but would like to share.

I can trace my first symptoms back to when I was 7/8 years old and having a random episode of upper back/neck pain which only lasted a few weeks. I had a CT scan which came up clear. As it came and went so quickly, my family, doctors and I never thought much of it.

You'll grow out of it. It's just growing pains

When I was 11 I was rushed to hospital with acute chest pains on my left side which had been coming and going for a few weeks. They couldn't figure out what it was, told me it was costochondritis brought on by my asthma and told me I would grow out of it in 6 months. (Of course, it has been 11 years now and I am still waiting to 'grow out of it'). Little did I know this was early-onset AS in my chest.

My main AS symptoms started at 14 when I woke up with crippling hip/pelvis pain that went down my leg (this was actual SI joint pain but of course I didn't know this at the time). I presumed I injured myself without realizing. This flare-up lasted a few weeks and went away. A month later my other side flared up for a couple of weeks. Doctors just threw paracetamol at me and told me it was 'growing pains'.

Just live with it

Over the next couple of years, I would get mysterious flare-ups in my shoulder, hips, knees, and ankles that would last a couple of weeks and then completely disappear. My 'hip' pain was the worst of this, leaving me limping around school. During this time I was diagnosed with mild scoliosis and was seeing an orthopedic doctor. He put my hip and other pains down to my (very mild) scoliosis. I had several blood-tests and x-rays over these years and an MRI scan which all came back completely clear. I also saw a pediatrician who simply had no idea what to do with all my clear test results and I was signed off.

Because of my clear test results, any doctor I saw just told me it was growing pains (despite having stopped growing years earlier), that it would go away and that because nothing showed up 'it was a good thing' and there was nothing wrong with me. I was told to just live with it.

At this point, I was like 17 or 18. I had seen so many doctors, physios, and nurses without one having an answer. The pain had continued in flare-ups lasting a few weeks, mainly in my hips but had also started in my neck. It was so bad there was a point where I could barely hold up my head. I had a little back pain throughout the years but nothing compared to my hips. My back pain only really got bad at around 18.

Learning about Fibromyalgia

I spent so many years googling things like 'severe hip pain in teenager' with nothing like AS ever coming up. At this point, I learned about Fibromyalgia and was convinced I had it, as nothing else seemed to explain my widespread pain.

I finally managed to convince my GP to refer me to a rheumatologist and they did. I knew I would be waiting for years. Due to the waiting list, they have a system where after a year or so waiting you get assessed by a specialist physio who sends you on to see the rheumatologist or signs you off if you no longer need it.

Being dismissed by a specialist

I went to this physio at 19, with 6 months worth of health tracking which I thought would help the doctor. Unluckily for me, this was a relatively pain-free day. Basically, because of this, the physio told me she couldn't really see the need for me to see a rheumatologist. She told me as my pain correlated with low moods I should see a psychologist and that as I had no proof it was inflammatory through scans and bloods I should just 'exercise' and it will go away. I left the hospital crying haven been taken off the waiting list.

She was very dismissive of me. When I described my pain as 'chronic' and said that I had done a lot of research she almost laughed in my face at the idea I 'googled my symptoms'. She then condescendingly described how what I had clearly wasn't 'chronic pain' as I wasn't in a huge amount of pain that day. I later got a hold of the notes she wrote to see she had written "she claimed" several times when describing my symptoms.

Two months later I found myself completely unable to walk, having collapsed on the ground in the middle of Covent Garden when I was on holiday in London with my friends. The shooting pain down both of my legs felt like my bones were splitting in two. The pain subsided slightly and from then on I had periods where I relied on a crutch for support. Don't think a psychologist would have helped much.

Getting the relief I needed

I went to an out-of-hours doctor who could not believe I had been signed off and told me that it could be some kind of seronegative arthritis. I didn't know this was a thing and apparently, neither did any of my other doctors. I was giving actual strong painkillers for the first time.

After one angry phone call from my mother I was back on the waiting list and fast-tracked passed the physio assessment. Of course, I didn't get an appointment for another year and a half.

A few months before my appointment, my dad got very sick and developed Reactive Arthritis. During his treatment, he discovered he had the HLA-B27 gene. He sent me some info about the gene and came across a condition called Ankylosing Spondylitis! At first, I didn't think I could possibly have this. Every bit of info on AS said 'back pain', 'men's arthritis', 'onset age 30'. I did have a lot of back pain but my hip pain was still the worst thing affecting me. I got a blood test and discovered I did indeed have the gene.

The finally believe me

I attended my appointment just after I turned 21 in September 2018. I was believed properly for the first time. They arranged further tests, including an MRI with a 1+year waiting list. My follow up appointment was scheduled for 6 months time. At this time my neck, back and SI pain was escalating to a point where it was affecting every aspect of my social life, work-life, and education.

Just days after this appointment, on my boyfriends birthday, my back pain got so bad that I could barely expand my chest. As I was unable to breathe properly, my boyfriend called an ambulance and I went. I had bloods done and an x-ray (first one in years). In the x-ray, they discovered significant damage around my SI joints which basically proved my AS. And I was giving strong anti-inflammatory meds which actually helped.

I had my next rheumy appointment earlier than planned and started on a course of naproxen, which I ended up having an asthmatic reaction to. To get a formal diagnosis they insisted on an MRI so I had to pay for a private one to start other medications.

I was officially diagnosed with AS on the 17th of October 2018.

Taking biologics

I was then put on Biologics (cosentyx) which have basically saved my life. They don't get rid of my pain but have given me my quality of life back. I still get mild flare ups and I think I have permanent nerve damage caused by SI damage but I am doing so much better.

I was let down by so many healthcare professionals simply because my condition didn't present conventionally or fit into a perfect box. I am in the process of formally complaining about the useless physio who delayed my diagnosis by over a year. I hope that no child, teenager or anyone with unexplained chronic pain is ever turned away like that again.