My journey with Axial Spondyloarthritis (axSpA) has been long and arduous. My fight to get an accurate diagnosis and treatment for my condition started 13 years ago but I was only given an official diagnosis of axSpA 3 years ago after 10 years of misdiagnosis and seeing different specialists.
Looking back, I started experiencing bouts of joint pain and stiffness in my fingers where my fingers used to go numb or even became immobile. However, being an investment banker and a workaholic, I hid my hand under the table so that my co-workers or family members wouldn’t notice it. I just ignored it or brushed it off, thinking it was just fatigue instead of a serious medical condition. Little did I know that it was actually much more. Over the years, my symptoms worsened with intensified joint pain and fatigue. I developed hematoma on my right thigh and had to be admitted to the hospital. They told me it could possibly be a tumor or cancer. I was then referred to the oncology orthopedic department where I was sent for further tests and prescribed with different medications for a while, but nothing worked. An orthopedic specialist I was referred to told me my hematoma could be rheumatoid arthritis (RA) and prescribed medication to treat RA, but the symptoms persisted.
It was only when I saw a rheumatologist later, I was officially diagnosed with axSpA. My rheumatologist did a thorough clinical examinations and had me to take an HLA-B27 gene test that came up positive. The HLA-B27 gene test determines if the person carries the gene related to axSpA1. I was so relieved to finally get a proper diagnosis, after living with pain for 9 years. One part of my fight was over, and I am grateful that I never gave up. However, my journey still continues as there is no cure for axSpA. But, my lifestyle modification and the medications have helped me live better. As an active person, I used to swim 75 laps a day, but I can’t even do 2 laps now. It takes me longer to get up in the morning with the pain and joint stiffness all over my body. I am also unable to climb or descend the stairs, nor sit on the floor. I have now learned to adapt to my new life so I can be more independent with the help of kitchen aids, support bars, and home modifications due to my limited mobility. To help keep my joints moving, I try to get some exercise and play the piano. Because axSpA is a condition that doesn’t manifest physically, most people including my parents, do not understand why I was unable to take them to their medical appointments. My bosses had very little empathy and would not accommodate my frequent medical leave or doctors’ appointments. As a result, I decided to retire early.
As a single mum with 2 grown children, my kids are more protective and constantly remind me to take care of myself better. They are also vigilant and help me on my bad days. My kids, a positive mindset, and a lot of faith have kept me going throughout my journey with axSpA.
My advice to fellow axSpA warriors is to have a bit of patience and faith, visit your rheumatologist regularly and let them know if you notice any progression or more symptoms so you can get an earlier treatment. If you have any back or joint pain, please do not ignore it, but visit a rheumatologist. As someone who has tried different treatments, always be patient and do not be afraid to go for treatment plans as prescribed by your rheumatologist. Don’t stop fighting for yourself! You will definitely get better soon!
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Reference:
1 https://nass.co.uk/about-as/as-facts-and-figures
