Something that you’ll read a lot about in the websites and text books, and you’ll hear from your rheumatology team and other Ankylosaurs is the word flare. That’s not flair (which is how we live our lives anyway), and neither does it mean that you set off fireworks (although on days like today I feel that we deserve a parade)! No, it’s when one or more of your symptoms flares up and reminds you that your immune system is a big mean meanie.
The symptoms of a flare up varies between Ankylosaurs. Actually, it varies between flares as well. Sometimes it’s more back pain (when the normal dosages don’t work). Sometimes it’s pain down one or both legs, particularly in the buttocks. It could be an increase in fatigue, uveitis, or neck pain. One thing’s for sure – you’ll know it when you get it!
It’s Halloween today, one of my favourite days of the year. I’d planned out my Halloween costume to allow me to be able to work, as well as dress appropriately. But I’m currently on day 4 of what looks like a flare-up. I can usually spot my flares as they often follow one of a couple of patterns. Either buttock pain that shoots down the leg, or my personal favourite – around the chest. This one is a chest flare, with added bicep and armpit pain. Tiredness and muscle aches across the rest of my body clearly decided that I needed something to make things interesting!
I remember the first time I experienced this particular type of flare, I panicked. It was before my diagnosis and all that I knew was that I couldn’t breathe properly and there was a pain across my chest. I’ve had it a few times now and I don’t panic any more. It’s not any less painful, and because of the success of the treatment that I currently take (Humira, plus the anti-inflammatories, painkillers when required, etc…) the difference is a much starker contrast than usual. So much so that I’ve had to reach for the heavy duty painkillers. (Don’t worry – I opt for the non-opioid Nefopam rather than Tramadol and the like.)
Why am I writing about flare-ups now? Because, as I said earlier, I think I’m in the early stages of one. Flares can come on for various reasons, and sometimes for no reason at all! Thankfully the “no reason” flares seem to be being completely controlled by the Humira, the only times I’ve had flares recently have been because of mechanical causes (such as slipping, tripping or falling and jarring my back).
I think this one is my own fault too, I’ve been pushing myself for a while now, but didn’t listen to my body. I’ve been masking symptoms with tablets and ended up throwing my Humira calendar out of whack to try to to push myself a bit further and ended up losing my voice.
I’m listening to it now though. It’s shouting so loudly that I can’t even try to ignore it! I’m resting up until I can walk more than a flight of stairs and then I’m going to start moving again. Hopefully I’ll be able to keep on top of it and get it sorted as soon as possible
My advice to my fellow Ankylosaurs? Firstly – listen to your body, don’t push yourself too far. Secondly, when a flare starts, don’t panic. Just look after yourself and try to help it to pass as quickly as possibly. Yes – it’s painful – but you’ve got through worse and you’ll get through this.
And in the meantime, I might as well show you what my costume was going to be and ask you one question… “Are you my mummy?” #happywholloween