Life after diagnosis : my reality of living with chronic pain

Mark was 23, when he was diagnosed with axial spondyloarthritis in 2019, after years of experiencing excruciating and recurring groin and back pain. In 2019, he shared his journey to diagnosis and how his life had changed since. He shares an update on the physical and psychological challenges he has been facing since his diagnosis and how the NASS community has been helpful.

The last 18 months have been very hard. It started at the end of 2020 with a burning sensation in the soles of my feet, which my rheumatologist diagnosed as plantar fasciitis. But the pain gradually got worse and moved around my body and by March 2021, I had regressed into a man struggling to walk and breaking down almost daily. The pain wasn’t getting better with exercise, like normal axial SpA pain, and because of COVID19, I struggled to get an appointment with my rheumatologist.

When I finally got an MRI scan, I was told I had chronic widespread pain/fibromyalgia (which is when a long-standing inflammation, leaves pain that spreads to other parts of the body). Despite going on various medication, the pain relief was only temporary. During this time, I found a new job; one where I didn’t have to choose between my career and my health.

I am fortunate enough to have kind friends, two of whom arranged a charity cricket game for NASS between my old university teammates and Bromley Cricket Club in August 2021. I am eternally grateful for the effort they put in, the money that was raised and the effort of all those who attended. I did manage to participate a bit and it gave me a sense of hope that I would one day feel well enough to do this regularly, although that hasn’t been the case.

In the winter of 2021, I got the opportunity to take a nine-session course at the Optimise Pain Clinic Oxford and I started to feel much better. I gained some useful pain management tips, and at the start of this year, I was doing relatively well. I had even started to go to the gym three times a week with a detailed plan of what to do on bad days and better days. Unfortunately, I caught COVID-19 in February, which resulted in a flare that I have been struggling to recover from since.

I have been struggling with walking more than five minutes without support and I haven’t been able to take part in activities that I enjoy. This has been debilitating not only for my physical health but psychological health too.  I don’t always want to burden my friends and family with my thoughts and feelings and how I am coping, so I usually keep this to myself.  The toll that pain takes on a person should never be underestimated.

Although I’ve had some bad luck, the tips, support and hope offered by other NASS community members have been really helpful. I am proud of myself for picking myself up and facing every day, regardless of how I am feeling.

Read Mark’s full blog story