It took me 16 years to find out why I was in constant pain and exhausted

It took me 16 years to find out why I was in constant pain and exhausted

“I dreamt of a career in the performing arts but been diagnosed with axial SpA took that away from me. Today, with the right treatment, my life is very different and I’ve rediscovered my love of singing.” 

As a teenager I loved playing football. My friends loved playing football but I was in so much pain, I had to give it up before I was 16.  

I first noticed I had persistent back pain and pain in my hamstrings around the age of 14. Me and my parents put it down to sports injuries, but these sports injuries kept coming back and weren’t going away.  

I went to my GP who referred me to a physiotherapist. They looked at how I walked, they even filmed me walking and told me I need to wear inner soles in my shoes because my legs were out of alignment.  

At one point, I was told it could be more serious. There was even a discussion about whether I had multiple sclerosis, but that diagnosis was never really explored. In the meantime, the pain in my back was getting worse. I had to stop playing football, in my mid-teens. I could no longer play the sport I loved and was felt cut off from my friends.  

Fast forward a few years, and I was at University doing a performing arts degree. My lower back became quite painful and one day I simply couldn’t get out of bed. My girlfriend at the time thought I was trying to get out of going to a family party, but quickly realised it was something more serious. I was in agony.  

My then GP referred me to a neurosurgeon. This was in 2011 and I was aged 24. I wanted to stay at University and complete my course. I was given injections into my spine and this was followed by three operations on my discs and then a disc replacement.   

I went on to study for an MA in Theatre Performance. I was in so much pain that the course took two years, instead of one. I wouldn’t have been able to complete the course without the support of my girlfriend, who is now my wife.  

My mental health was not in a good place. I had to move back in with my parents, I felt completely isolated and gave up all hope of a career in the performing arts.  

It got to the point where I was completely isolated and couldn’t go out. At one point I was under a pain management team, who gave me a spinal stimulator, similar to a TENS machine. I had been on crutches but this treatment allowed me to walk unaided. But it didn’t get to the root of the problem. 

Things started to change when I was referred to a rheumatologist in 2016, who recognised that I had axial SpA straight away. I had x-rays, and MRI scan and a blood test.   

Today I’m on biologics and life couldn’t be any more different. I’ve got a two-year-old son and I’m back on track. I haven’t been able to pursue my dream of a career in the performing arts but getting the right treatment means that I’m now able to sing semi-professionally alongside my day job. 

Symptoms starting slowly

Pain in the lower back

Improves with movement

Night time waking

Early onset (under 40)