Hello, My name is Eve and I was diagnosed with AS 3 days ago. It has been a long journey to reach this point. I first went to the Doctors at 17, promptly given some ibruprofen and told I was doing too much sport, I went as I was wondering why I ached every time I came to get up from sitting and felt so tired all the time. At 23 I next visited the Doctors complaining of bad back pain, I had just started my first job after Uni. I walked with a limp for a year as the pains would travel down my legs, I could not raise my arms to write on the board at work. I was told it was general back pain and sent to a consultant Oesto, who took x-rays and declared nothing wrong. The next 9 years were spent working with little sleep due to the pain, doctors refusing to give me any painkiller other than off the counter stuff and implying that I was making it up and that I was depressed. It made me doubt myself!
Eventually this year they sent me for x-rays again, however they decided this was normal and sent me to the pain clinic. It was a physio there that noticed the condition and requested a Rheumatology referral. The x-ray showed lots of damage in the SI joints (spine is perfectly clear) During this time I also got uveitis which has helped getting the diagnosis. On my second appointment they said I have AS. Sounds odd but was a relief to know I’m not making the pain up. One of my major problems has been that my bloods never show increased levels of inflammation, this has been a massive problem in getting referrals. I would be interested to speak to others than have normal inflammation levels but have been diagnosed with AS.
I am a massive sports fan, I play netball 4 times a week at club level and live in the gym when the pain is not too bad, I think that this has helped me greatly, I am hyper-flexible which is great as the loss of movement in my back is offset my my extra bendy hips and shoulders so I still have great movement. I used to be able to put my forearms flat on the floor when reaching my toes, now I can just get my finger tips there and in the mornings I’m lucky if I reach my knees! My Nanna has AS, people have always commented on how she was odd how she could be doing cartwheels one day then stuck rigid the next, now I understand how she feels. For me the worst parts are the not sleeping or being able to lie in, the fatigue and the fact that people don’t understand that I’m like an old person in the morning but can run around a netball court by the evening! I am 33 now, I hope to still be playing netball well into my 40’s 🙂