My name is Courtney, I’m 30 and I’m from Kent in the UK. I first experienced severe pain when I was 21, I immediately went to see a doctor and was prescribed some NSAIDS, the pain subsided but the uncomfortable feeling remained so I was referred to a consultant rheumatologist and after an MRI scan, AS was diagnosed. I was fortunate that from the first pain to diagnosis was only 2 months so I never had to suffer a long time of frustration and uncertainty. Luckily, since then, I would say that on average I have a flare-up of excruciating pain that lasts for about a week every 6 months, but between flare-ups I remain fairly pain free and do not need to take painkillers. Although I constantly feel ‘aware’ of my lower back and am very cautious to prevent inflaming the joints, and I know that pain is only a jolt, slip or twist away.
Just by reading other people’s stories, I can tell that I haven’t suffered nearly as much as some and I have nothing but admiration for those who suffer constantly yet still have a smile on their face and try to carry on as normal.
I don’t know how the disease will progress in me or how severe it will become, but I am determined to take it as it comes and try to keep calm and carry on. One thing that has occurred to me is that there may be many more people with AS who just do not know they have it, particularly if they have it to the extent that I currently have it. If I hadn’t seen a rheumatologist early on, I wouldn’t have had a diagnosis and I probably would have excused my bi-annual flare-ups as just lower back muscle pain or tendon/ligament injury. That’s why it’s important to raise awareness of AS as it may encourage others with symptoms of the disease to insist on the tests that will enable diagnosis. And not that I’d wish this disease on anyone, but the more people who have it officially diagnosed, the more will be done to find treatment or a cure. =