My name is Stephen and I’m originally from Derbyshire in the UK, but now live in Norwich on the East coast.
I’ve been living with AS for almost 30 years.
My symptoms began in 1986 whilst I was in year 7/8 at school. There was a sharp, shooting pain that stated in my legs and lower back and it became increasingly difficult to walk. I was just about to start a new school year when I woke up one morning and just could not even get out of bed.
After seeing the Doctors and having numerous tests they decided that I had ‘ Shermans Disease ‘. This meant that until I became 17 I was constantly wearing a full back brace to keep my spine s rigid as possible as the misdiagnosis suggested that would help me. I know now that was the worst thing they could have done with AS.
Turning 17, I developed Iritis in both eyes and was given injections in my eye socket to quickly reduce the inflammation.
From that moment on, with more tests, xrays etc and the blood tests confirming the HLA B27, I was finally diagnosed as suffering from AS.
I’ve always been told that it can ‘burn itself out’ and to a certain degree it’s true. My symptoms have fluctuated a lot over the years with several bouts of Iritis, lighting bolt pain and stiffness in pretty much all my joints but especially the neck and lower back / hips. Ive also ended up with a lot of restricted movement in my neck, back, shoulders and hips.
However, there has always been that constant dull ache and pain that you eventually learn to ignore so that you can get on with life without being restricted, for a while anyway.
Now that I’ve turned 41 I’m back under the care of a specialist doctor as , along with a more serious health condition the AS seems to have flared up again with pain and stiffness in almost all of my joints. I can’t take anti-inflammatorys any more so Im having to rely on exercise and pain killers to get through the day and make sure I can achieve something every day. Tiredness can also be an issue … and the temptation of coffee throughout the day works to a point .. until you want to sleep that is.
It’s never completely stopped me from doing the things I’ve wanted to do in life …. college, uni, job, wife and children, it’s just made some of those things a little bit harder to do.
I believe the worst part of AS is that you are never sure of what to expect on a daily basis … is it going to be a good day or a bad day.
What you do know for sure is that it’s allways there, somewhere.
England, United Kingdom