Navigating the medical mystery of my lower back pain

“I feel like my body is gaslighting me,” I said to my dad in frustration after checking my MRI results. While I was hoping to get some answers, there in plain sight were the words “findings are unremarkable.”

Of course, this news was ultimately good. Unremarkable findings meant nothing serious was happening. Nevertheless, there was no explanation for the pain in my lower back, and I started to wonder if it were all in my head. Alas, what I’d hoped would finally shed light on a solution only left me with more uncertainty.

Having lived with spinal muscular atrophy (SMA) my whole life, I often joke that my body acts like an unruly child. Most of the time, it calls the shots. It rebels when I least expect it. It’s temperamental and hard to please. But at the end of the day, I love this body and will do whatever it takes to nurture it, even when it feels like I’m not winning.

That said, with all the health issues SMA complicates in my life, medical ambiguity hits me a little differently.

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My back pain had started a few months earlier, after a spinal tap. About 24 hours later, it went away, only to return with a vengeance a month later. I needed validation for this pain. I needed something to pinpoint that would allow me to identify the problem and take the next step toward relief.

Perhaps the MRI would show disk compression or inflammation. Maybe there was some nerve damage from the spinal tap. Whatever it was, I was desperate to put an end to all this uncertainty. But the universe had other plans.

Living in the unknown is part of the microscopically fine print of an SMA diagnosis, which I’ve learned the hard way. I’ve navigated through many uncharted waters and faced many mysterious symptoms that have made doctors scratch their heads in confusion. Even so, no matter how well I manage these symptoms and prioritize my health during these times, I still struggle to sit with the discomfort of not knowing.

As I’m writing this column, I feel my lower back throbbing. It’s not excruciating or overwhelming, but it’s enough to remind me that I don’t have answers, that I’m still in the dark with what is actually going on.

While the MRI didn’t show anything of grave concern, my amazing team of doctors came together with a plan to get to the bottom of the issue. Over the next few months, I’ll get a new wheelchair cushion, be fitted for a new TLSO brace (for the lower spine), and work with my physical therapist to learn some exercises. From there, we’ll reevaluate how I’m feeling and try to come to more concrete conclusions.

Until then, in the midst of all the swirling questions in my head, there is one truth that I know for sure: I’ve been in this place of not knowing before, and I’m stronger for it. I’ve still overcome every obstacle I’ve ever faced. I may not know why I’m experiencing back pain, but I’ve learned how to keep moving forward despite what tries to set me back.

Regardless of what SMA throws my way, my body is doing its best, and so am I.

Note: SMA News Today 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 provider 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.