I have tried a couple of times to sit down and write my end of the month reviews, but each time I’ve hit a wall. Quite simply, I haven’t been thinking much about the goals I set myself at the beginning of the year – I haven’t had time. For the past year now, I’ve been going back and forth with my doctor about some long-term chronic fatigue and pain I’ve been experiencing, and in the past few months, I’ve finally been getting seen, while the symptoms have still been worsening.
Honestly, this has been a part of my life for at least eleven years now, but at the beginning of Summer 2017, it started to feel a bit different. Obviously, my depression and anxiety cause an amount of fatigue, and many years ago I was diagnosed with ‘borderline’ Hypermobility Syndrome after chronic pain in my hips. It took three trips to my GP before they would even begin to consider other causes, referring me to see a rheumatologist, and even then it was a fight. But at least they did finally refer me.
Thanks to Royal Mail’s sterling service, I never actually received my referral letter. It was only when I received a reminder to make my rheumatology appointment that I even knew my doctor had done what they said they would. So when I first saw my rheumatologist in July, I had no idea what the doctor had finally referred me for. It turned out mentioning my dad’s Ankylosing Spondylitis (inflammatory arthritis that primarily affects the lower back) had been what convinced my doctor to refer me, and now they were looking for the same thing in me.
It was something that I had considered before. When my dad was first diagnosed many years ago, I was having lower back pain and headed to the GP then concerned. They sent me for an X-Ray, which came back clear, so just sent me for three sessions of physiotherapy. But they also did a blood test, which confirmed I do carry the HLA-B27 antigen, which is seen in 90% of Ankylosing Spondylitis (AS) sufferers, and other inflammatory diseases. Now, it’s not guaranteed if you have the genes that you’ll get AS, but they certainly think it increases your chances. But I’d been told I was clear, so I went to the doctor thinking ‘It won’t be that!’
‘It won’t be that’ echoed through my head as the doctor looked at all my joints, took some measurements, asked the usual questions. It felt like it was all going pretty well really, except for the crunching in my right knee (the fact it does that all the time doesn’t make it normal, apparently). Then came the time to measure my mobility. I passed chest expansion with flying colours (AS can also affect your ribs, impacting your ability to breathe), and then came the back movements.
Now, thanks to the hypermobile joints I had when I was younger, I could touch my toes pretty easily for quite some time. I could even briefly lay my hands flat on the ground when I bent forward. So I really tried to show off for this doctor. Except I couldn’t. I haven’t been able to touch the floor without bending my knees for a while now. I stretched as far as I could, but the pain in my lower back stopped me from getting very far. Still, the result, I was told, was borderline normal. All good. All that was left was bending to the sides. Easy!
I don’t know if you’ve ever been at a doctor’s appointment where the doctor has turned to you and said ‘Well, that’s not good’, so I’ll let you know how it feels – Not great.
I got redressed and sat back down, waiting for some kind of signal that would hint about what he was writing. After waiting for what felt like forever, he explained the next steps.
Sixteen-week pathway to arthritis diagnosis. Blood tests, X-Ray, MRI Scan, Ultrasound, and then back in four months.
It’s been a long few months since then. I’m still waiting for my final appointment, but results have started trickling through. Letters and referral forms with mention of ‘clinical evidence of osteoarthritis and AS’, but also no evidence in any scans. This limbo is the worst. ‘Healthy’ people underestimate the importance of a diagnosis. When I had my ultrasound done on my hands, looking for damage in my joints, the gentleman conducting the scan turned to me all happy and said ‘Well, good news! I can’t see anything wrong’. I left the room holding back tears because no visible evidence = less difficult to diagnose.
So at the moment, I’m still in the limbo, waiting for my next appointment, hoping they find something and can actually help me. In the meantime, I’ve been accepting this isn’t something that will be easily fixed, and considering what changes I’m going to need to make to stop wearing myself out (for example, the 5KM inflatable fun run I did last weekend was not a good idea, and I’m still suffering physically for that). It’s going to take a little while to work through it, especially with an amount of uncertainty around it all, but I’m sure I can do it. I’m going to be opening up about my journey as it continues, so be sure to come back soon and see how I’m doing.
And for anyone else going through something similar, know that you’re not alone.