I’ve already covered what chronic pain is, so now to talk about what chronic pain feels like. Of course, everyone has very different pain issues to deal with, but chances are the overall experience is equally life-changing and depressingly miserable for all involved.
When it comes to that ‘Ouch to the Off The Chart’ pain spectrum I was talking about, for me, personally, it’s often at the upper end of the chart.
When I just had the Lupus to contend with the pain was easier to control, but now Fibromyalgia has joined the mix, my pain is now almost constantly ‘on the move’. A bit like the London Underground, it runs up and down each of my limbs, careering from fingertips to toes and back again. It rarely stays still for very long, just a brief pit stop in each area (giving it time to throb, burn, and ache) and then it’s changing direction and racing off to the next destination. Migratory pain, the doctors call it; makes me think of a herd of wildebeest stampeding across the dusty African plains.
As well as being nippy on its feet, this pain of mine is also rather brutal. It often feels as though someone has taken a mallet to me, and is smashing, shattering and crushing every bone along the way.
It’s not that dissimilar to when you whack your funny bone, and then have to stand completely still while the pain reverberates through your body.
As if feeling like a clubbed baby seal wasn’t stressful enough, there’s also a rather disturbing sensation of electricity and ice-cold water flowing through my veins. Clearly, that’s slightly freaky and unnerving, to say the least. We were all taught in science lessons that electricity and water really aren’t the best of friends. I’m not 100% sure what causes this arctic electric shock of mine. Something to do with the nerves, I think.
Some days the sheer intensity of all this combined pain is so severe it makes me feel nauseous. Just like morning sickness, it comes in waves out of the blue and makes me gag. The pain also makes me weep and wail. I’ve sat in the shower and sobbed, laid in bed and howled, and screamed while driving my car. Music was blaring and the windows were up at the time, so luckily no other road users were harmed or alarmed.
This chronic pain of mine has been going on for about eight years now – with the last six being the worst. Initially, it resided in my hips and legs; my bones would burn and ache every single day. Walking was difficult as my hips would seize up, even when shuffling along the road at snail’s pace. A particular low point for me was being overtaken by an 80 something-year-old man, who was out taking a leisurely Sunday afternoon stroll. With his cane.
There were days my joints hurt so much I couldn’t lift each leg to climb the stairs. I would resort to crawling up, step by step on my hands and knees. Sleeping also proved tricky, as laying on either hip was proving agony. I soon learnt to snooze on my back and keep a large stash of painkillers by the bed. Cortisone injections into each hip proved the only treatment that made a difference, but these were given out sparingly by the doctor and they only lasted 3 months tops.
Then a year or so ago I had a slight lull in the pain. Oh, the joys, what a difference that made – for about a week. Then, fresh from its mini-break, the pain returned and spread to my arms and hands too. Imagine my delight. Walking like an octogenarian is one thing, not being able to lift, pull or open a door is something entirely different.
It was at this stage, and after much moaning and groaning to my rheumatologist, that he agreed to try me on Aazathioprine. After the first couple of weeks of pills, the joint pain almost vanished straight away. Result! A few months when I was (wrongly) told to stop taking them, the pain came straight back. And with a vengeance, I might add. When I started back on Azathioprine for the second time it wasn’t quite so quick to take effect. I panicked that it wasn’t going to work. After a brief reminder of how good life without severe pain really was, I didn’t want to settle for anything less.
12 weeks on and, for the most part, the drugs seems to be doing their thing. As long as, that is, I don’t ‘overdo it’ or forget to get enough rest.