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.