Working with a pain management clinic feels like a new world of possibility

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 over my body for a full minute, so I’m thankful they’re mostly gone. But the memory lingers, and sometimes that alone is enough to trigger anxiety.

In their place are brief whispers or flickers of those same spasms, and I’ll do just about anything to quiet them. But they are there and are just enough to hurt. Just enough to plant dread.

That’s why I was genuinely thrilled when I was accepted recently into a pain management clinic led by a world-renowned specialist.

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First appointment

Before the visit, I had to complete a 17-page intake form, which included assessments like the Widespread Pain Index, the Patient Health Questionnaire, the S-LANSS pain score, and the Central Sensitization Inventory. While many questions felt repetitive, I understood their value. Sometimes it is difficult to describe pain, especially when it is neurological.

NMOSD pain can be all-consuming on some days, but it also has a way of showing up at the most inconvenient moments. It’s the kind of pain that reshapes your world. Physically, it feels relentless. There’s no comfortable position, no true rest. Even stillness aches. Even sleep, when it comes, feels thin and temporary, like a pause you can’t quite trust. This is how I described my pain at my first appointment at the clinic.

For that appointment, I spent more than an hour with a kinesiologist and a student who shadowed her. The clinic operates within a teaching hospital. These two lovely women were incredibly patient as they reviewed my intake forms and guided me through a series of exercises to assess my body’s range and limitations. Their thorough note-taking will be reviewed by the specialist before my next appointment.

The possibility of something new

When my physiatrist suggested this clinic, I held back my enthusiasm as this specialist doesn’t accept every referred patient. It was only when I received my appointments that I allowed myself to possibly see some relief.

I’ve spent years experimenting and adjusting, hoping each new approach might be the thing that finally quiets the noise. I’ve already tried changing my pharmaceutical medications, such as increasing my gabapentin to the maximum dosage, and adding holistic solutions like acupuncture and meditation. Some things have helped in small ways, others not at all, but none have fully taken the pain away. That reality is frustrating, and at times, deeply discouraging.

That’s what makes this clinic feel different.

What I’m hoping for here isn’t a miracle cure. I let go of that expectation a long time ago. Instead, I’m looking for a more strategic, personalized approach to managing pain, one that considers the neurological complexity of NMOSD, rather than one that tries to force a one-size-fits-all solution. I’m hoping to better understand how my body responds to pain, to learn techniques that go beyond medication, and to regain a sense of control over something that has felt for so long uncontrollable.

I’m also hoping for validation from someone who truly understands the kind of pain NMOSD brings, because sometimes the hardest part isn’t even the pain; it’s trying to explain it to people who haven’t experienced anything like it. It’s especially frustrating because NMOSD pain doesn’t show up on my body like a rash or on a CT scan.

Walking into that first appointment, I carried both cautious optimism and quiet fear. But leaving it, I felt something I haven’t felt in a while: possibility.

If you’re living with NMOSD like me and your pain feels unmanageable, or even just unpredictable, it may be worth exploring a pain management clinic.

I don’t feel like I’ve run out of options. Instead, I’m trying to expand them. Sometimes that shift alone can be the first step toward finding a little more relief, and a little more peace, in a body that has endured so much.

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.