Ever since neuromyelitis optica spectrum disorder (NMOSD) introduced pain into my life, I’ve been trying to exorcise it from my body. I’ve become a formidable opponent to pain, but parts of it still frighten me. The spasms were the worst. They once felt like someone was pouring boiling water…
pain
People with neuromyelitis optica spectrum disorder (NMOSD) often experience severe fatigue, pain, anxiety, and depression that are not fully captured by standard physical disability tools used in the clinic, a study found. According to the researchers, “disability scores were weakly associated with symptom burden” on the Expanded Disability Status…
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…
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…
Nearly all adults with neuromyelitis optica spectrum disorder (NMOSD) experience headaches, especially migraines, a single-center study in Iran suggests. The presence of abnormalities in brain MRI scans and the use of the immunosuppressive therapy rituximab were each linked to an increased chance of new or worsening headaches after a…
Note: This column describes the author’s own experiences with acupuncture for pain management. Not everyone will have the same response to the practice. Consult your doctor before starting or stopping a therapy. It’d been 14 years since I lay on a table, acupuncture needles gently placed along meridians meant to…
There’s a lot of things that people don’t see about me. I deal with fatigue, pain, and other unpredictable symptoms that come with having neuromyelitis optica spectrum disorder (NMOSD). Even the simplest tasks can require monumental effort to complete. That’s why “bed rotting,” as it’s called, has become an…
Tonic spasms come on suddenly, last seconds to minutes, and feel like an eternity. They’re a painful and daily reality for many with neuromyelitis optica spectrum disorder (NMOSD). And since my recent transverse myelitis (TM) attack, I’ve been experiencing them multiple times a day. These spasms cause intense…
During my recent family vacation, I made sure to take several mental pictures of the beach, sunrise, and calming blue skies. Over the past 15 years of living with neuromyelitis optica spectrum disorder (NMOSD), I’ve found it important to incorporate complementary therapies such as visualization, which has gotten me…
Note: This column describes the author’s own perspectives on several potential treatments for pain. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve said it before, and I’ll say it a thousand times more: Living with pain is the worst.
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