Jane’s story

“I collapsed with severe back spasms, and could no longer walk. It was pain that I had never imagined being possible.”

It took Jane 5 years to get diagnosed with axial SpA. During lockdown in 2020, she collapsed with severe back spasms, and could no longer walk, experiencing pain she had never even imagined possible. Being diagnosed by a rheumatologist she was recommended brought her to tears – relief that the pain she was in was not all in her head. Having started biologic treatment, Jane feels ready to get back to exercise. She and her friend, Lara, are going Orange for AS by meeting in Lee Valley Park to walk 8 miles to raise vital funds for NASS.

Here is her story. 

“I had to cancel and stop doing so many things that I always loved”

I started to notice infrequent back pain in my twenties. It would come and go and sometimes intensify so that my pelvis would twist, and I could not stand. Later in my forties, the symptoms changed drastically and became significantly more debilitating, to the point where I could not go more than a few weeks without my lower back giving way, and the constant stabbing feeling became very hard to manage both physically and mentally.

I had to cancel and stop doing so many things that I always loved to do like walking, seeing friends and normal everyday activities. I was fortunate to have very supportive family and friends and an amazing husband who helped me through some awful personal circumstances that you would never imagine your partner having to experience.

“I spent 5 years trying to find answers, and I had reached a dark place in my life.”

Having grown up with parents who have back issues and a brother who severely suffers from disc problems, I spent 5 years trying to find answers, and I had reached a dark place in my life. The endless MRI scans continued along with a long list of seeing endless orthopaedic surgeons who simply shrug and tell you they cannot see anything mechanically wrong with you.

In 2020, during lockdown, I collapsed with severe back spasms, and could no longer walk. It was pain that I had never imagined being possible. So, my journey of investigation continued with greater worry about what this meant, and why it was happening. I had reached the point of giving up; feeling like it was all in my head and that I somehow must be putting it on.

“I cried when the consultant confirmed that I had axial SpA.”

I finally got recommended (as a last resort) to see a rheumatologist, and I was very fortunate to have chosen the right consultant, who it then became clear was an expert in his field. Shortly after having the right MRI and blood tests, I was quickly diagnosed with axial SpA and tested positive for the HLA B27 gene. My relief to finally be told that I wasn’t imagining the pain and that it was real hit me pretty hard; I cried when the consultant confirmed that I had axial SpA. The reality of knowing that this was here to stay took some getting used to, and it is a mental journey that has not been easy.

“Since starting on Biologics over the past year I feel like life is so much better”

I consider myself very fortunate to have been diagnosed within a statistically short time. Since starting on Biologics over the past year I feel like life is so much better, but it is a new journey, and I have to keep reminding myself that I must do things differently and not try to overload myself.

It is scary when you have a diagnosis and have so many questions and need to find the right support. I was lucky to be referred to NASS, and what an amazing charity it is supporting those with axial SpA. I stumbled across a blog on the website and reached out to the person, who has also been incredibly kind and welcoming in sharing her network with me, which has been one of the best support groups for asking questions, receiving abundant kindness, and a care to share experiences. Simply having a connection with someone who “gets it” because they are living it too really helps.

“I now want to help NASS by fundraising”

Swimming really helps me with calming my thoughts and head space, as well as working my joints and muscles and especially expanding the chest, as I also suffer with costochondritis. I enjoy Pilates and yoga, but it’s about getting the balance right and setting realistic goals; not putting too much pressure to always do more if it can set you back. The lack of knowledge of the condition, especially amongst orthopaedic surgeons, is very hard to fathom. I now want to help NASS by fundraising, and I have joined a focus group to help build the knowledge pathway to help others. I’ve decided to walk 8 miles in Lee Valley Park with my friend Lara to raise vital funds for NASS.

Feel inspired by Jane’s story?

Go Orange for AS today! From quiz nights to coffee mornings and bake sales, organising a step challenge or a dress down day at work or school, there’s no limit to what you can do to raise vital funds for NASS!