How NMOSD has quietly shaped my experience of pain
I'm learning to become more aware of the tension I carry
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Pain is received differently by everyone, but I believe most people with neuromyelitis optica spectrum disorder (NMOSD) develop an unusually high tolerance.
Once we adjust to a new normal, we find ways to exist inside it, ways of holding ourselves, bracing ourselves, and moving through the world that help us manage the pain we’re in. These habits become so ingrained that we stop noticing them altogether.
It wasn’t until a loved one pointed out how tightly I gripped the steering wheel that I realized how much tension I carry. I’m perfectly comfortable driving in Toronto’s downtown core, but the way my hands were wrapped around the wheel made it look like I was terrified. Long commutes mean long stretches of sitting, and that inevitably leads to discomfort, but I hadn’t realized how much my body was trying to compensate.
That moment made me start paying attention to other places where pain had quietly reshaped me.
Awareness of pain
One of the most surprising discoveries was how much tension I hold in my shoulders. They sit slightly raised, almost hovering, as if I’m bracing for impact even when nothing is happening.
That constant tightening has become so familiar that I don’t even notice my poor posture anymore. I catch myself leaning forward, shoulders rounded, neck strained, my body instinctively curling inward to protect itself. It’s only when I consciously try to relax that I realize how foreign “relaxed” feels. While back massages are meant to be enjoyable, I now find the release of tension almost too much, even bordering on painful sometimes.
This awareness has carried into other peak moments of pain, too. When I try to get comfortable in bed, shifting and repositioning often triggers pins and needles in my legs. I’m not a fan of pain medication, mostly because none are 100% effective, but when I’m desperate, I’ll take a medication my pain specialist prescribed. Unfortunately, no oral medication works instantly, so while I wait for relief, I’ve noticed I clench my jaw, almost grinding my teeth without realizing it.
When restlessness creeps in, I know it’s my body’s way of warning me that the pins and needles and heavy, lead-like feeling in my core are about to begin. Only recently have I noticed that I also clench my hands into fists during these moments, my nails pressing into my palms until they leave small crescent-shaped indentations. Most mornings, I wake up with my hands still curled into fists, as if I’ve spent the night preparing to fight my way through the day. In reality, it’s simply that lying in bed puts pressure on my spine, and I always wake with some degree of pain.
I’ve started journaling about the moments when I grind my teeth, ball my hands into fists, or excessively slouch, and I’m noticing just how often I move through my day holding myself in some form of tension.
I’m trying now to consciously tell myself to relax, reminding my body to breathe through whatever discomfort I’m in and to find gentler ways to calm myself, like getting up every 30 minutes to walk around my home. I’ve also begun practicing deeper body awareness, stretching from the top of my head all the way down to my toes, deliberately moving through each part, including my jaw. While nothing will take away the NMOSD pain I’m always in, I feel better giving some control back to myself with simple stretches like circling my wrists or rolling my shoulders.
Learning to notice these patterns, these small, instinctive ways my body tries to protect itself, hasn’t erased the pain, but it has given me a clearer understanding of how I move through the world.
NMOSD may have reshaped my body in ways I never asked for, but paying attention to these subtle signals of tension that are woven into muscle and memory gives me a gentler way to inhabit my body. And for now, that feels like its own quiet kind of progress.
Note: Neuromyelitis 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 providers 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 Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
Pauline R.
Jen, thank you for sharing this profound insight into the effects of NMO pain and disability. This is a relatable experience.
Much gratitude.