Kerry Chorley
My story began when i was 20. I had my first child and within a few weeks of the birth was in a lot of pain with my sacroiliac joint and the bottom of my back. I was struggling to walk, could only take tiny steps. Could not get up stairs for a time, had to have a bed downstairs. Was struggling to lift my son. I put it all down to the birth and visited an osteopath when my gp didn’t seem interested. The osteopath treated me which made the whole situation a lot worse. I had been told at school during a medical that i had a curvature of the spine and later that i had spina bifida occulta so i assumed that these were the reasons the pain carried on, doctors said that they should not account for the pain i was getting.
I had flare ups throughout my 20s. I was always in pain and had restricted movement but the degrees of pain varied a lot. I had 2 more children and if anything seemed to be slightly better when pregnant. Managing 3 children was difficult physically, and still is now that they are 12, 13 and 16! I visited physios, osteopaths and chiropractors but with no real success. I was also sent for an MRI scan but had no feedback other than there was nothing that could be done surgically to help me.
Last year, when i was 36, i started to experience a lot of pain and stiffness in my neck. I was used to various areas of pain up and down my spine and in my hips, but my neck was a new thing. It has made driving difficult as i have very limited movement in my neck. I was referred by my GP to a spinal specialist who sent me for another MRI and also referred me to a rheumatologist as he thought that i had the symptoms of AS. He said that my notes from previous hospital referral 10 years ago had mentioned that as a possibilty too but they never told me or referred me. AS has since been confirmed. The rheumatologist has been fantastic.
I have always managed to work, look after my children etc although this has all been difficult as i am now a single mother. I too diclofenac which made such a huge difference to me and allowed me to carry on. Last year however i developed a stomach ulcer due to the tablets and so stopped taking them for a while. I found it impossible to manage without them so started them again with a gastro restraint tablet to protect my stomach. I have found however that they upset my stomach very badly and have had no luck with any other nsaids, my stomach just will not tolerate them.
I am starting TNF blockers soon, my appointment is next month and i am very excited. I know that they aren’t without their downfalls but for some people they do seem to work wonders and i am hoping that i am one of those people! I know this is a long drawn out story, and there is still so much i have missed out, but it has taken me 16 years to get a diagnosis that makes sense. I want people to know that this is not something that the medical profession always pick up. Especially if like me there are other back issues. My rheumatologist said that once a doctor saw my curved spine they would stop looking for any other problems and assume that i was exaggerating the pain i was in. It made me doubt myself. I was told my one GP that ‘we all get a bit of back ache from time to time dear’. I went home and cried for the rest of the day thinking that nobody understood. Had i have had a diagnosis and known that i wasn’t the only person suffering like that it would have helped me so much.
United Kingdom
The Faces Of Ankylosing Spondylitis 
Dear Kerry,
Thank you so much for sharing your story with us.
Sincerely Cookie