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Patient voice: ankylosing spondylitis

An inquiry by the All-Party Parliamentary Group on Axial Spondyloarthritis recently showed worrying gaps in the care of patients with ankylosing spondylitis, a painful, progressive form of inflammatory arthritis. In this blog, Becky talks to BJFM about how she tries to not let her condition interfere with her daily life.

I was diagnosed with ankylosing spondylitis (AS) in October 2019 aged 26. Although I had heard of AS before as a distant relative had the condition, I had little understanding of it. I have several symptoms of AS but they don’t impact my day to day life often.

The first symptom was jaw pain which started around the age of 20 years. At first, I convinced myself that it was a stress from writing my dissertation or an ear infection. Then I dismissed it as a dental issue. Never would I have thought it was due to inflammation or arthritis.

After several trips to the GP, I saw a dentist who suggested I was grinding my teeth at night. The jaw issue appeared to resolve itself in time with the help of a rubber mouth guard (which I eventually chewed through, so maybe the dentist was right!)
When I was 23, I moved into a new house to start a new job. Not long after I started to get a sore back, especially in the morning. I would wake up feeling stiff and pain would shoot up my leg and into my lower back as soon as I started walking, mostly on one side. Again, this would come and go, and my back usually felt better by the time I had come downstairs for coffee. I just assumed m mattress was culprit.

I’ve always been one of those people that only takes pain killers if I’m in a lot of pain and would only reach for the ibuprofen from time to time. Now I’m wiser and older, I know that ibuprofen being a non-steroidal anti-inflammatory was the reason it was so much more effective for my back than paracetamol.

I also remember feeling ever so tired, and I don’t just mean a bit groggy like after a bad night’s sleep. I would come home from work and feel completely drained. I thought my job was just ‘stressing’ me out, as I was always busy. I also dismissed my fatigue as low iron or perhaps needing to get to bed a bit earlier.

Then, at 25 I developed a red, sore eye. To make it worse, the symptoms developed on a Friday and deteriorated over the weekend. By Sunday, my eye was very painful in any light and very bloodshot. Come Monday, the eye clinic diagnosed iritis (uveitis). This is where I heard ‘ankylosing spondylitis’ being mentioned again.

Following a blood test, which indicated that I had the HLA-B27 gene (which is associated with AS), I was referred to a rheumatologist and diagnosed with AS following an X-ray and MRI scan. It has been a relief to finally have an answer for why I had these annoying physical symptoms (the jaw pain, fatigue and back pain) and felt as though the pieces of a jigsaw puzzle were falling into place, and the underlying cause was always AS.

Day to day with ankylosing spondylitis

Since being diagnosed with AS, I can honestly say my life has not changed a great deal. I remember getting the letter in the post explaining the results and I felt like my world has been turned upside down. However, after some reflection and support from my friends and family, I now know that I don’t have to let my diagnosis throw me. I also feel it is really important not to see myself differently, I am still the same person!

In some ways, I am also in a better position as I now know what was causing my lower back pain and fatigue. And, I know what to do to support myself with this, such as taking care to stretch gently in the morning following the exercise videos on National Axial Spondyloarthritis Society‘s (NASS) Instagram pages.

Living with AS is not easy and I have to accept that some days will be better than others and that I need to be kinder to myself on these days. This can be something like having a warm bath/shower in the morning or getting to bed a bit earlier to catch up on sleep.

For the most part, I’m aware that I have AS but it is not something that interferes with my daily life. I continue to go to the gym and love weight training. Initially, I was worried I would have to give this up but have since learned that, with the right medication and lifestyle, I should be able to carry on doing what I love, rather than changing what I love for AS.

I am currently taking a longer lasting anti-inflammatory (I’ve had to get over my pain killer avoidance, but maybe this is not a bad thing). In time, I may have to take something stronger, like an immunosuppressant, but I have accepted this and come to terms with the fact I will be taking medication for the rest of my life. I feel that this was initially the hardest thing to accept, as a lifetime of medication seems daunting. Yet, if this means I can carry on doing the things I enjoy then it is worth it.

Only a few people know I have AS (friends, family and a few colleagues). I find that many people have not really heard of AS, so I save myself from having to explain it to people over and over. I’ve also been told a few times that “you’re too young to get arthritis” and feel it is a bit of a shame that there is not more understanding around AS.

My future with ankylosing spondylitis

I wish I could predict the future, but no one can and AS is one of those things that can be hard to predict also. However, I am hopeful that with a healthy lifestyle and positive attitude, I will be able to live a perfectly happy and healthy life.

I refuse to identify with my AS. It is something I have not something I am. I am also grateful, in a weird way because without the iritis, I would never have been diagnosed with AS as early as I was. I am also grateful to AS for making me stronger and more motivated to live my best and most healthy life.

Further resources

National Axial Spondyloarthritis Society

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