The pain of NMOSD nerve sensitivity means more than just a cold shoulder
Sudden temperature changes aren’t just uncomfortable, they’re painful
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It’s unusual for Toronto to be hit by two massive snowfalls in one week, shutting down the city and giving kids rare snow days.
As a lifelong Canadian, I’m no stranger to snow, although I’m usually fortunate enough to avoid anything major. The downtown skyscrapers in Toronto usually shield us from the worst storms, except this time. With more than a foot of snowfall, I’m thankful that my husband handles the shoveling at our home.
After one of his trips outside, he came inside and jokingly placed his icy hands on my arm while I was relaxing on the sofa. He thought I was just reacting to the cold, but I cried out in pain. Living with neuromyelitis optica spectrum disorder (NMOSD) means my nerves respond differently now.
For most people, cold weather is an inconvenience, something to be endured with extra layers, hot drinks, and the hope that spring will arrive soon. But for those of us living with NMOSD, the challenges go far beyond discomfort. Having NMOSD means my body’s response to temperature is unpredictable and often painful.
First encounters of the cold kind
I still remember my first real encounter with extreme cold while on a girls’ trip to an outdoor spa with several plunge pools. When I finally found the courage to try the cold plunge, it left me gasping, not just from the shock but from the way my nerves seemed to fire off alarms. While most people might find a cold plunge invigorating, for me it was a lesson in how my body now interprets temperature as a threat. Even a cold shower requires careful planning and mental preparation; I can only handle it if I ease into it. The sensation of cold water on my skin isn’t just uncomfortable; it can trigger sharp, shooting pains that linger long after I’ve dried off.
Going outside is another ordeal. With the thermometer dipping to -21 C, or -6 F, this week in Toronto, I’ve needed to bundle up like I’m heading to the Arctic. Layers upon layers, heated socks, gloves, scarves — each piece is essential, not just for warmth, but for protection against the unpredictable reactions of my nervous system. The cold doesn’t just make me shiver; it can set off spasms, numbness, and a deep ache that’s hard to describe to anyone who hasn’t experienced it.
Solve for x — extreme cold
These challenges aren’t just physical; they’re emotional and social, too. There’s a sense of isolation that comes with knowing your body can’t handle what others consider normal. Every time my daughter asks us to play in the snow, build forts, and enjoy the winter wonderland, a little voice in my head panics because I hate having to explain that I can only stay out for so long before it becomes painful and uncomfortable. Calculating how long I can safely be outside before the pain sets in is an equation I’ll never figure out.
Temperature change is a constant negotiation. I’ve learned to adapt, to listen to my body’s warnings, and to advocate for myself when others don’t understand. My husband’s cold hands were a harmless joke, but for me, they were a reminder of how differently I experience the world now. NMOSD has rewired my body’s thermostat, and every season brings new lessons in patience and resilience.
As Toronto digs out from its latest snowstorm, I’m reminded that living with NMOSD means facing the elements with courage and creativity. The cold may be relentless, but so am I. Each day is a balancing act, a test of endurance, and a chance to find warmth in unexpected places, whether it’s a cozy blanket, a supportive family, or the simple joy of a snow day spent indoors.
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.
Nancy Gaide
It's a beautiful post about neuromyelitis. My daughter's been suffering with neurosarcoidosis and it sounds the same she's always freezing she can't regulate her body temperature. Along with severe pain. I understand how she feels and I will pray for her and wish her well. I don't understand how she can work with that condition my daughter can't hardly do anything. These neurological conditions are debilitating.