Unpredictable Joint Pain Each and Every Day
I’m not new to axial spondyloarthritis. I’ve been living with an AS diagnosis for several years now, but living with the disease for far longer. And as much as I’m tempted to say I’ve been managing my AS for several years, that’s not the case.
AS manages me as much as I manage it. I can predict what’s in store for me on any given day just as sure as I can predict the future or the weather. What I find especially unpredictable is peripheral joint pain.
Example one: this pain
A few weeks ago I woke up feeling relatively good (I always wake with stiffness that’s eased away with a hot shower). I went about my day as normal: got ready, spent much of the day in my work-from-home office space, took the dogs for several short walks, cooked supper, and then settled into my recliner in the evening to relax.
Not long into my "relaxing" phase, both my left hip and left knee began to throb. I repositioned but the pain wouldn’t subside. I stood up and walked around, but that only exacerbated the pain and stiffness. I tried laying down, but no matter which way I turned, both my hip and knee were still shouting at me. What happened? Did I do something to cause this?
Example two: that pain
I can often trace foot pain to a few sources: hiking more than a few miles in my stiff hiking boots, wearing unsupportive footwear, standing in the kitchen for too long without shoes. The same for the pain and swelling I experience in my hand--any sustained motion with my right hand, from writing to chopping vegetables will cause joint pain to flare up.
One recent Sunday, I spent the first half of the day doing household chores, the second half of the day binge-watching some TV as fatigue set in. The next day, both my right hand and my right foot were sore and inflamed. Where’s the logical connection? What incident or injury contributed to these symptoms?
Unpredictability is frustrating
Unpredictability is just part of the game with autoimmune and immune-mediated diseases, from what I can tell. Yes, my peripheral joint pain is caused by enthesitis, and repetitive joint motions can cause inflammation in tendons and ligaments. The trouble is, the same repetitive motion will not lead to enthesitis and joint pain 100% of the time.
So we live in a state of limbo. We’re surprised over and over again with pain that we didn’t see coming. We make plans, knowing they’re always tentative. We get frustrated when we have to call in, reschedule, or check out. Our body is unpredictable, and so too seem our actions.
Accepting the uncertainty
I’ve learned that there are several approaches to living in a state of limbo, to the constant wondering if this activity or that activity will instigate joint pain and swelling. First, I can assume that most activities will cause pain, and therefore act with perpetual caution and avoidance. Second, I can shrug off the possible consequences, trading my future pain for present action. Third, I can accept unpredictability as a part of my life, do what I can to minimize actions that I know cause pain and prepare for what I cannot predict.
Most days, I choose approach number three--to accept the unknown but do what I can to mitigate. I purchase tools that help with the joint pain: an ergonomic mouse for my hand pain, a knee brace for when my knee acts up, comfortable and supportive shoes, ice packs and heat pads for large and small joints. I always keep pain cream handy, whether at work, at home, on a hike or in the car. I try not to over-exert myself too much (though I’m not always successful with this one).
This illness is difficult in so many ways, its volatility is only one. If you feel like you can’t always figure your AxSpA out, know that you’re not alone. There’s no guidebook to the cause and effects of axial spondyloarthritis, so we’re left following trend lines and drawing conclusions from mere suggestion.
Does reading AxSpA patient stories help you in your journey?