“It took me 14 years to find out why I was in so much pain and get the right answer. Now I’ve got the right diagnosis I can run around with my children, I’m building a successful business and I can be the person I want to be again”
It took me 14 years to be diagnosed with axial spondyloarthritis. While I was waiting for the right answer, my life spiralled. I was constantly in pain, lived with extreme tiredness and felt like I was failing as a mother.
The doctors were on the right road, but they never quite found the right answer.
It started in 2005. I was 27 and had just got married. The first symptom was an incredibly swollen knee – it was the size of a football. I now know it’s unusual for AS to start with a swollen knee and the first the doctor believed it was the result of some sort of trauma. A year later, with both knees swollen, they thought it was rheumatoid arthritis.
When I was pregnant with my first child, my symptoms calmed down, but by 2011 my knees were swollen again, and I started experiencing debilitating back and neck pain. There were evenings when I’d not be able to move or sleep. The doctors didn’t know what was causing it, but my symptoms eased off again in my second pregnancy.
Things took a turn for the worse in 2013 when I stopped breastfeeding. I woke up one day and couldn’t move. Every single joint in my body ached. It was agony. I couldn’t even pick my baby up. It was the worst feeling in the world; I felt like a terrible mother. It was the first of many flares. I was put on steroids which gave temporary relief.
I saw a rheumatologist again, but they focused on my knees and didn’t make the connection with my back pain or neck pain. I was told I had seronegative inflammatory arthritis, but no one specifically mentioned axial SpA.
My life became one of pain and fatigue. I continued to work, but at 35 I was like an old woman hobbling downstairs after a day at my desk, sometimes crying with the pain. I started sulfasalazine in 2014, but I just kept getting worse.
I went into survival mode putting so much effort into getting through each day. I couldn’t do all the things you should be able to do with your kids, like family bike rides. We’d go out walking and my youngest would say, “Mummy, why can’t you run?”.
By 2018 I had lost so much weight. My family and friends were incredibly worried. I’m Australian and my Dad insisted I came to see a specialist there. I went in January 2019.
I was like a hunched old lady walking into that clinic, but I was only 41. The consultant said immediately he thought it was axial spondyloarthritis. That same day, I had an MRI and tested positive for the HLA B27 genetic marker, which is often found in people with axial SpA. The fact that I hadn’t been tested for the gene before blows my mind.
Back in the UK, I pushed to be seen at the NHS Nuffield Orthopaedic centre in Oxford. The team there are amazing. They put me on biologics in September 2019.
It’s given me my life back. I can jump out of bed, but more importantly, I can sleep. I never thought I’d be able to run again, but I run three times a week and do yoga. I even ran the couch to 5k with my eldest.
I’ve been left with a fixed flexion deformity of my knees which means they can’t fully bend or straighten, and I have osteopenia (weak bones) from the steroids I have had to take. Overall, I am so grateful to now have a diagnosis and be on medication that works. I feel happy my body is working again. It’s like I’m a different person.