Are those mystery aches and pains due to NMOSD or regular life?

Living with neuromyelitis optica spectrum disorder (NMOSD) means I’ve become something of a detective. I’m not the glamorous kind with a trench coat and a magnifying glass like Sherlock Holmes, but more like a tired, slightly bewildered Inspector Gadget who wakes up every morning trying to figure out what’s going on with my body. Lately, I’ve been finding it hard to determine whether my aches and pains are neurological symptoms or simply aging challenges.

A week ago, I woke up with a sharp pain in the middle of my back, exactly where lesions appeared on a recent MRI. Naturally, I worried it was an indication of a bigger NMOSD problem, but it could also be self-inflicted. I fell asleep reading with my night-light still attached to a mystery novel. Waking in the same seated position probably wasn’t the smartest idea. Since the sharp pain hasn’t eased in over a week now, I wonder if a professional back massage will make a difference or if I should alert my neurologist.

Then there is my left knee. When I was 14, I was accidentally dropped during a dance competition, and it took a year of physiotherapy to rehabilitate my knee so that I could walk again without pain. As an aging adult, it’s tough for me now to determine if it’s a flare from that, which happens from time to time, or if my bone density is starting to falter, a concern my doctors have flagged due to my steroid treatments.

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My elbow has also joined the fun with a constant pain that screams at me when I’m doing basic tasks like chopping vegetables. It’s probably tennis elbow, but it could also be related to NMOSD. For example, it might be more bone density problems or poor vein health.

And then there are the cold spells, where I’ll be fine one minute and then get so cold that I’m unable to move. Temperature regulation issues can happen with both NMOSD and perimenopause. (I also live in Ontario, Canada, where temperatures can vary by 10 degrees in a single day.)

The strangest thing I experience is random itching. I know it’s a common NMOSD symptom, but I also have seasonal allergies. Plus, I’m a germaphobe who likes to take long showers, so perhaps the itching occurs because of dry skin.

The truth is that NMOSD makes every small thing seem suspicious. A normal ache becomes a question mark. A minor discomfort becomes a puzzle. I try to respond with curiosity instead of fear, and if it’s something persistent, unusual, or concerning, I’ll bring it up with a healthcare professional.

Mind vs. body

Dealing with these daily aches and pains has me wrestling with a bigger question, though: Is my mind tougher than my body? Mentally, I’m resilient, and I’ve learned to navigate uncertainty, advocate for myself, and push through moments that once terrified me. My mind has become a warrior. My body, on the other hand, is complicated. It’s strong in some ways, fragile in others, and unpredictable in ways I wish it weren’t.

So what should I do with these little aches and pains? Should I push through them at the gym, building muscle to support the parts of me that need reinforcement? Or do I mention every new thing to my functional health specialist? I think the answer is a little of both.

Strength training helps me. Building muscle makes me feel capable, grounded, and connected to my body in a way that NMOSD sometimes tries to thwart. But I also listen to my body and don’t push through pain blindly. I’ll check in with a professional who can help me understand what’s normal and what’s not.

Living with NMOSD means accepting that my body has its own language, and it isn’t always clear. I’m learning to interpret it with patience. Some days, the aches are just part of life. Other days, they’re reminders to slow down.

I remind myself that my mind and body are on the same team. While my preference is that they both be strong, it’s OK if one is stronger than the other on some days. The aches and pains may be mysteries, but they don’t define me.

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.