My path to a diagnosis was a long one.
I seem to have had a few people in my life at the moment develop back issues. In all, or at least almost all cases they seem to have gone to their doctor, been sent for an MRI, been diagnosed and sent for treatment. That’s brilliant, exactly how the NHS should be.
That’s not how it’s been for me. Sorry to bore those who’ve heard this before, but 10 years ago I started to get a strange pain in the joint between my neck and spine (that one that’s a little bump.) It began to crack, and feel really stiff. The pain spread into my shoulders and upper back. It then went into my lower back – badly. I began to not be able to stand as long as I used to, or sit comfortably. I fidgeted constantly, and my joints all began to loudly crack all the time. I didn’t know what the hell was wrong with me. The first rheumatologist I saw said I’d grow out of it. The second said it wasn’t arthritis, but didn’t know what it was. The next said I had bad posture – ignoring the fact I was hunched over due to the pain.
In the years between 2002 and 2008, that pain spread into every joint, every muscle. The fatigue was getting worse. I could only walk for short periods of time. I saw rheumatologist after rheumatologist, and two different pain consultants. Each time I raised the possibility of an MRI, but it was dismissed.
I finally saw a third Pain consultant in 2008. He was an asshole. It was the first time I left a consultants room in tears. He told me there was nothing wrong with me, and he said he would prove it by sending me for an MRI.
I was pissed off, but also pleased. At least his bad attitude was getting me an MRI. When I returned I saw yet another pain consultant who told me the MRI “showed nothing.” I was very disappointed. It’s very hard to be in constant pain and have no idea why. You hope it does show something – because at least you know, and then you can look at possible treatment options.
I continued to see the spinal specialist physiotherapist at the hospital who was able to print a copy of the MRI off for me. The same physiotherapist who said, “You are hypermobile as hell. I can tell just by looking at you.” She didn’t help me physically, but she tried – and helped point me in the right direction of my final diagnosis.
Unfortunately, despite having a copy of the MRI, I didn’t understand a word of it. A few months later I sat, although I can’t say why it took me that long, I sat googled every single word of the MRI that ‘showed nothing’ and was surprised to find various disc bulges in my lower back and neck, quite bad facet disc degeneration and arthritis in my lower back. So there was something. It might not have been the worst MRI he’d seen, or not operable – but I believe I should have been told what it did say.
From 2008 my mobility continued to go downhill, first causing me to walk with a stick, and later needing a wheelchair more and more often. My lower back continued to decline; at best feeling like someone was gripping into it, crushing and aching. At it’s worse? Well, there aren’t really words. I was desperate to find out what was happening, but it took another four years to get that update.