Rachel’s journey to diagnosis

“I am not sure how long I will be able to be this active, but while I can, I am embracing it!”

Rachel shares her 11-year journey to diagnosis, how she has adapted her lifestyle and why she is took on the 2023 London Marathon for NASS.

London Marathon 2023 Rachel Stone

My axial SpA journey started back in the summer of 2009. I had a spell of horrific pain in my lower back and hips that seemed to come from nowhere. I was fit and active and had always taken part in various forms of exercise, be it at the gym or a step class. I went along to the GP who referred me to the physiotherapy department at my local hospital. I was assessed and told that it could be a number of conditions and was given some advice on exercises to try.

Over the course of the next 10 years, I was referred to numerous healthcare professionals who all seemed to have a different reason for the symptoms I was experiencing, ranging from piriformis syndrome, sacroiliac joint dysfunction, weak core muscles, sciatica and weak glute muscles. I worked hard with all of the support I was given, took part in all of the exercises with little improvement and took a range of medication that I was prescribed.

I consider myself to be quite lucky in that I don’t suffer from so many of the other symptoms that are linked to axial SpA, but I was beginning to question if I was actually imagining my pain and maybe it wasn’t really there. This affected my mental well-being for quite a while as my symptoms would come and go, so at times I felt like a fraud, as people would see me in terrible pain one week and not the next.

At the end of 2020, I asked to be referred again and was lucky enough for this to be the breakthrough that I needed. I spoke with an extended scope physiotherapist whom I had seen a few years before and he looked over my medical history. He did an MRI scan and sent me for the HLA-B27 blood test, which came back positive. It all fell into place, and I was diagnosed with axial SpA.

Finally, I had an answer after 11 years of pain and fatigue. I knew what I was dealing with. In early 2022, I felt I was at a crossroads. I gave myself a year to see if I could improve my symptoms by taking more care of myself.

I embarked on a healthy lifestyle, added more sleep into my routine, started to return to running which I had always enjoyed and joined my local running club. Fast forward to 2023, I am medication free (for now) and training for the TCS London Marathon in April with support from my wonderful husband and raising funds for NASS. The support that they offer is amazing and this was my way to give a little back to a fabulous charity that has helped me so much. I am not sure how long I will be able to be this active, but while I can, I am embracing it!