My story - the chronicle disease

I'm a young single woman, started my thirties recently, and live in a nice town in the Netherlands. 
Since I was 11 years old, I've had pains. They started off as muscle cramps in the middle of the night after playing tennis, but eventually grew to crazy pains forcing me to take multiple painkillers a day and still having no idea how to get to work in the morning. 

Two years later, I was diagnosed with fibromyalgia. After that, I didn't visit a doctor or hospital for nearly 10 years and lived with this crazy fibromyalgia, irregular pains and walking as a penguin. It was when I was 24 years old, that pains got extreme. By then, it had almost become impossible for me to get up, and walk to work without taking rests every 2 minutes. Pains had become ongoing and the daily amount of painkillers was skyrocketing. Early 2007, I ended up going to a GP again and x-rays were made, now in the UK. They found nothing on the x-rays, but the physiotherapist thought he saw a scoliosis in my back. 


Summer 2007, I went to a hospital in the Netherlands again. This time because of this scoliosis. The first orthopaedic surgeon found not only a hip dysplasia in both hips, but also lots of joint erosion. He couldn't do anything for me. I was too young for getting new hips and if so, the operation would be very complex. He advised me to go to a special orthopaedic hospital in the Netherlands for this operation and ask for a second opinion. 
On my birthday, I had my first appointment with my second orthopaedic surgeon. I desperately hoped for the best birthday present possible - a pain free life. It ended that I heard a hip operation was indeed no option yet. My hips were in a bad shape, the pelvis was very weak due to joint erosion, and because of the scoliosis, my back wasn't strong enough to compensate after hip surgery. He sent me to a rheumatologist for a double check on this fibromyalgia diagnosis. 
End 2007, a rheumatologist in the same hospital concluded that the chances were very little I would be suffering from a rheumatic disease. She sent me for blood tests and no two weeks later, I heard of a certain HLA-B27, and got a new diagnosis on top of the hip problems, Ankylosing Spondylitis. And this diagnosis ticked all the boxes. After four months of AS, including extreme pains, crazy amounts of painkillers, and worrying sick if I would be able to keep my job, I started with Humira, a TNF blocker, in spring 2008. The next day, I was able to walk around in sunny weather, and pretty much pain free. 

It's now 2013, 5 years after that diagnosis. I'm still working and enjoying a career job, despite battling shifting energy levels every day.
In the mean time, I'm fully aware that in the (near) future, challenges lie ahead. My health, social life, finances, medications and career are my personal growing concerns.


I'm sharing the highlights and worries of my life, health and work in my blog, which I started September 2010. It's a search after passion and my personal drives in life, but I hope to also meet other young people with Ankylosing Spondylitis. Let us learn from our daily battles, mistakes, lessons learned, successes and feelings and share these. 


In any case, I would be very happy to hear from you and appreciate your feedback! 


Send me an e-mail
Send a tweet @chroniclediseas