Here’s her story.
I have had back pain and sciatic pain for 17 years or so. I went to the GP many times and was referred countless times for physiotherapy. At times, I paid for private physio when the wait for NHS physiotherapy was too long. During that time, I was pregnant and gave birth 3 times in just over three years. Thankfully, each time I was pregnant, I didn’t have much pain at all. Unfortunately, this meant that every time I went to the doctors after the pain came back, it was blamed on having been pregnant, given birth, carrying babies/toddlers, pushing pushchairs etc.
I was diagnosed with ulcerative colitis (UC) in 2014. Looking back, that should have been a clue to the GPs about what was causing my back pain. Axial SpA and UC can be linked (I didn’t realise that at the time). However, it was another 5 years before I was diagnosed. I think my lowest point before I got diagnosis was when I had awful chest pain for about 2 years. I was diagnosed with costochondritis and had a couple of steroid injections into my sternum (ouch!) which made a little bit of an improvement, but it was still there in the background along with my back pain.
“… every time I went to the doctors after the pain came back, it was blamed on having been pregnant, given birth, carrying babies/toddlers, pushing pushchairs etc.”
Eventually after appointment number 427 (not really, but it felt like that!) to discuss my back pain, the GP finally picked up on the fact that I had UC, and I was very sore first thing in the morning. She sent off for some bloods and to check if I had the HLA-B27 gene, which came back positive. At the end of 2019 I was finally diagnosed with axial SpA. I thought things would improve immediately. Unfortunately, my rheumatologist prescribed physiotherapy and swimming and sent me away. Then, a couple of months later, the Covid pandemic hit. Suddenly physiotherapy and swimming were not an option (not that I was a fan of swimming anyway)!
“Eventually after appointment number 427 (not really, but it felt like that!) to discuss my back pain, the GP finally picked up on the fact that I had UC, and I was very sore first thing in the morning.”
I felt like nothing had changed after my diagnosis, and I was still struggling with pain. At the end of July 2020, I had a rheumatology phone appointment and thankfully I was prescribed biologics! Within a week, I noticed the difference. For the first time in years, I was virtually pain free. It was literally life changing. I was able to enjoy moving freely and not having much pain during the day. Every so often, I might have a flare, but I would just take some non-steroidal anti-inflammatory drugs (NSAIDs), and it would settle down.
One thing I haven’t ever been very good at is exercise. I used to go on hikes with my parents as a child and I hated PE at school. As an adult, it was not something I enjoyed or did much of other than the odd walk here and there. A couple of months ago, I had a really bad flare up and the usual medications weren’t doing anything. I was finally driven to trying out walking each morning (sounds like some sort of torture!).
“One thing I haven’t ever been very good at is exercise. I used to go on hikes with my parents as a child and I hated PE at school.”
I am so glad I did. It has been about 6 weeks now and I am feeling so good – not just in my body but also clearer in my head. I feel a bit silly for having not done this sooner, but at least I have now. When I first started out walking, I was going so slowly because I was in so much pain. I remember a lady, much more advanced in years than me, overtaking me at speed.
But as the days went by, the pain decreased, and my speed increased! I now walk about 2 miles each morning, and I can’t believe how good it’s making me feel and that I’m actually doing it! Around the same time that I started doing a morning walk, I heard about Walk Your AS Off. So, at the beginning of May, I grabbed my husband’s Fitbit and started counting my steps. It feels so good to know that I’m walking with so many other people all round the world to raise money and awareness for axial SpA and NASS.
“… as the days went by, the pain decreased, and my speed increased! I now walk about 2 miles each morning, and I can’t believe how good it’s making me feel and that I’m actually doing it!”
If you are like me and have never been ‘into’ exercise and you struggle with pain, can I encourage you to just take one step at a time, even if that means just hobbling down the road, keep going, it will help in the end.
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Fiona has experienced pain in her legs, hips, elbows and wrists since she was a child. She has only recently been diagnosed with axial SpA and is still awaiting the treatment she needs. Walk Your AS Off has given her a target and something positive to aim for.
Read Fiona's story
It took Victoria 20 years to get diagnosed with axial SpA. Now, she has signed up for Walk Your AS Off to spread awareness of axial SpA, particularly in women and healthcare professionals, and raise vital funds for NASS.
Read Victoria's story
“This is my first year helping to raise funds for NASS and I am delighted with the support of my friends and family during such a difficult time. I’m so lucky to be so supported.”
Read Kevin's story