I woke up this morning with a flare-up in my foot. Not too bad a flare as flares go, though I did have to come downstairs on my bottom. Thankfully it’s eased off a bit now – but flares sometimes have a tendency to be worse in the mornings and evenings, so I’m crossing my fingers it doesn’t come back with a vengeance tonight.
So I’ve decided to make today’s post about what it’s like to have Palindromic Rheumatism – not about what it is, you can google that for yourself!
Chances are you’ve probably never heard of Palindromic Rheumatism. Or you might hear the ‘R’ word and say, ‘Oh yeah, my granny has that,’ – which is one of the reasons why sufferers tend to avoid using its proper name. It’s also sometimes called ‘Palindromic Arthritis’, which again is a name sufferers try to avoid, for the same reason. Some suffers just say ‘Oh, I have dodgy joints,’ or ‘It’s an auto-immune thing,’ and leave it at that, because they know that if they go into more detail, a glazed look will start to appear on the listeners face, and you know that they’re filing it in the ‘What my granny has’ box.
Let me try and clear something up – it’s not what your granny gets. That’s probably osteoarthritis, a very different kettle of fish.
One of the things about Palindromic Rheumatism that people also have trouble understanding is that it affects random joints (or the tissue around joints) er, randomly. It can start with, say, a slight feeling of mild pain in your foot, and a few hours later can have totally disappeared, or can have progressed into the sort of agony that means you can’t walk. Or sleep. It may last a few hours, or a few days. Then you might go for a few days (or weeks) with no flare-ups at all. But suddenly it’ll be back – this time in your left wrist. And just when it’s easing off, it pops up in your right shoulder. Then your left index finger. Then your left hip. Sometimes you’ll get a fever with the flare-up. Sometimes the offending area will be swollen and feel hot to the touch. Often you can’t sleep, as every movement that affects the flared-up joint is agony. Sometimes you may find yourself lying on the floor in a little ball of pain, trying not to be sick because it hurts so much, seriously considering chopping the offending limb off.
Oh, and when I mentioned index finger just there, you might have thought, ‘A hurting finger, that’s not so bad.’ Well. Just to set things straight, a finger in full-flare can be so bad. It can be so swollen that it feels like it’s going to burst if you move it. Any movement of your other fingers, hand, wrist or arm can cause agonising pain. You’ll have difficulty sleeping with that little hurty finger. You probably won’t be able to use that arm at all. Buttoning up a shirt? Doing up a zip? Putting on or taking off a jumper? Doing up a bra? Forget it. Baggy tops and jogging pants, and get used to doing things one-handed for a while.
And then it’s gone. Weeks, or even months might go by, and you start thinking, ‘Maybe it’s gone away. The doctors say it can just stop, so maybe it has.’ Then a few days later you wake up in the middle of the night with your foot swollen and if you want to go to the bathroom you have to crawl.
Oh, I forgot to mention fatigue. Pain wears you out – anyone who suffers from a painful condition will tell you that. So when your flare-up(s) have gone, often you’ll be shattered and want to do nothing more than sleep, or take it easy. Relish in the luxury of being able to lift the kettle with one hand. Delight in being able to go up and downstairs without having to either hang on to the handrail for grim life, or go up and down the stairs on your bottom.
No, it’s not proven to be diet related. No, it’s not proven to be weather related. Just thought I’d throw those in before you ask.
Just as an aside – iPhone and iPads are great (other touchscreen devices are available!). No painful buttons to press, no books to support and pages to turn. Hurrah for touch-screens!
Sometimes it’s deliberately cheeky – it’ll pop up in your right foot, knee or hip, but you struggle on with a walking stick… and then your left wrist flares up too so you can’t use the stick…
Sometimes it gets you in the throat and you think you’re coming down with flu or tonsillitis or something – but then a few hours later your throat is back to normal and you think, ‘Oh. That’s what it was.’
When the flare-up – or flare-ups, because it often affects more than one place at the same time – subside, your joints are back to normal. No damage.
‘Just take a painkiller!’ I hear you cry! Well the problem with most strong painkillers (whether of-the-shelf or prescribed) is they take a few hours to kick in – or in some cases 24 hours or more, by which time your flare-up may have gone, or at least be starting to ease off. And anyway, most of them won’t even touch the pain.
Are you getting the picture? See why it’s a bit annoying for sufferers when they get the ‘My granny has that,’ comment? Also annoying is to be asked ‘How’s your hip/knee/wrist etc?’ when you bump into someone who last saw you hobbling about or unable to use one hand or arm. Because, generally, it’s fine…
…until the next flare-up…
Update 22/03/14: There’s a great Palindromic Rheumatism group on Facebook, and an excellent blog on the subject called “My Palindromic Life“. Also Arthritis Research UK did a recent survey of sufferers which makes very interesting reading.