Bacon or a hacksaw? Describing what sacroiliac pain feels like
Explaining chronic pain to others isn't as easy as you think
“So what does it feel like, your back problem?” my friend asked, as she tucked her hair behind her ears and picked up a steaming mug of coffee from the table between us. By “back problem” I knew she was referring to my ankylosing spondylitis (AS).
“Well,” I said slowly as I thought. “Back pain doesn’t really explain it.”
Her question made me pause, because explaining what AS feels like to me is hard to convey. Many medical descriptions of AS use the terms “pain” and “stiffness,” but that doesn’t describe what it actually feels like in your own body, or the varying degrees from aches to pain. I want to explain my experience of one particular symptom of AS, which is sacroiliac (SI) pain.
I’ll start with how it feels when my AS is at a fairly low level of discomfort in my SI joints, which are twin joints that link the pelvis and the spine. I can describe the feeling in a way that many of us are familiar with, but it might sound crazy: I relate it to cooking crispy bacon.
Imagine for a minute how it looks and sounds when you’re cooking tasty strips of bacon in a frying pan. As the pan heats up, the fatty edges of the bacon start to slowly sizzle, quivering up and down as the flesh hits the searing metal. Soon the bacon is crackling and popping, and the meat bunches up as the bacon gets crispy and constricts.
That bacon crisping up is a way to describe what my lower back feels like some days when my disease activity is at a lower level. Right above my buttocks, where my pelvis turns into my lower back, I can feel two tight lines of burning and sizzling. Above, the back muscles on either side of my spine and around my shoulder blades stiffen up and constrict as the discomfort simmers away.
At bacon-level discomfort, I’m aware of the burning ache, but I can ignore it and get on with life as long as I don’t overdo it. However, when my AS is flaring up, my SI joints hurt more intensely.
A few days ago, I forgot to take my nonsteroidal anti-inflammatory drugs with breakfast, because we were busy rushing out the door to my 5-year-old’s Sunday football practice. As soon as we started walking across the enormous grassy field, I could feel my SI joints grating and burning with every step.
As we stood in Australia’s freezing wintery air and shouted encouragement, I was distracted and disheartened by the searingly deep pain in my lower back. I could imagine one of those small fine-tooth hacksaws — the kind you might use if you were cutting through a small metal pipe — was being dragged slowly but unrelentingly across the top of my pelvis. (I’ve learned this area is called the ilium.)
“Mum, will you come and kick the ball to me?” my son called, endearingly. I knew I couldn’t swing my leg to kick a football with my AS flaring up, so I made do by throwing it, but even reaching down to grab the ball off the grass was a painfully slow maneuver.
Hacksaw-level SI soreness is more than a distraction, it makes me consider every movement carefully to avoid an electric jolt of pain. Which shoes will be the easiest to put on without bending over? Will I be able to lean forward over my plate while eating dinner? What can I brace myself against while I bend to unload the dishwasher? How long can I sit folded behind the wheel of the car before I can’t bear it anymore?
My own personal levels of SI pain can range from almost pain-free (which is wonderful) to the searing flare-up I’ve related to a hacksaw. Where my AS disease activity falls on this ranging scale seems to be based on many things, from adhering to the no-starch diet for AS, limiting alcohol, keeping hormones balanced, reducing stress, getting plenty of movement and good sleep, and Saturn aligning with Mars.
I have no doubt that other people would describe their own AS pain and stiffness differently, and I’d be interested to hear any thoughts in the comments below.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.