Welcome to Inflammatory Comments!

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...because my Inflammatory Comments blog is not about being making outrageous political statements; it's about the ups and downs, privileges and pitfalls of living with Inflammatory Arthritis. Hence Inflammatory Comments! (I think I may have laboured this pun enough now).

I was diagnosed with undifferentiated spondyloarthritis (what a mouthful) about a month ago (March 2013). This was not, however, the beginning of the story, but felt like the end of a long journey battling to be taken seriously.

Before I go any further, this is not going to be a rant against all health professionals everywhere, or even specific people who have created various barriers along the road to diagnosis. I feel it's so easy to become bitter and angry about the way one is treated, which is very understandable, but at the end of the day, doctors, nurses, physios, SLTs, OTs and everyone else in the NHS are just people who make mistakes and miss things. So I want this blog to give frank details of the difficulties I've faced over the last few years, but without descending into bitter ranting.

My first experience of chronic illness began back in late 2006. I woke up one morning with a bit of a stiff neck. I thought I'd just slept awkwardly and shrugged it off. But weeks later all my large joints (hips, shoulders, knees, elbows, back and neck) felt painful and I felt very unwell. I was an undergraduate at the time, so struggled to the end of term, but was admitted to hospital that December.

After further testing and another hospital admission I was given a provisional diagnosis of Reactive Arthritis. I had infrequent physio but was basically left to deal with it and hope it got better. I took a year out of university, and as I gradually improved over the next few years I was able to return to university and eventually complete my degree in 2009.

I was pain-free for a while and thought I was rid of any arthritic problems (Reactive Arthritis is usually self-limiting; see here for further info:

http://www.arthritisresearchuk.org/arthritis-information/conditions/reactive-arthritis.aspx)

However, since November 2011 I have been experiencing gradually worsening back, hip and knee pain. The back pain has been my most significant problem. It has the following features:

• slow onset (I didn't wake up with a sprain one morning, I just noticed a gradually stiffened feeling in the morning over several weeks)
• relieved by exercise and made worse by rest. This was strange for me at first, because it was the reverse of how my reactive arthritis had behaved.
• pain at night (waking up at around 3am and not being able to get back to sleep).

It seems obvious when written like this that I meet all of the criteria for suspected inflammatory back pain, as opposed to mechanical problems (which is a much more common cause of chronic lower back pain). But these things are easy with hindsight, and even with such clear-cut symptoms, inflammatory back pain is notoriously difficult to diagnose (listen to this podcast for further discussion of diagnostic issues in spondylitis: http://nass.co.uk/about-as/getting-my-diagnosis/difficulties-in-diagnosising-as/)

I had various scans, but to no avail. It appears that in the early stages it often doesn't show up on x-rays or even MRIs. This leads to a mis-match between symptoms and scans. "Old-fashioned" doctors who were trained to diagnose based on clinical rather than radiographic criteria were happy enough to give me a label of suspected spondylitis, but others would dismiss my symptoms because there was no corroborating evidence.

Eventually, I asked my GP to refer me to specialist team at the Royal National Hospital for Rheumatic Diseases in Bath (known as "the Mineral Water Hospital" or "the Min" for short). There I was given a provisional diagnosis of undifferentiated spondyloarthritis and, most importantly, lots of effective treatment during an inpatient stay. I am now under their care and will continue to see the specialists regularly.

So, that's my story. If it reads more like a medical history than a blog post, apologies! The ongoing purpose of this blog will be to post (hopefully shorter!) brief comments on my day-to-day experiences of being a young person living with long-term pain and stiffness in my back. I hope it helps others in similar positions to feel less alone, and that it provides an insight into the difficulties that young disabled people face.