Melissa's Story

Even as s a child, I was unable to sit idle for long, always thinking, doing, or making, then crashing into bed at the end of a long day. No matter the pain or fatigue, I pushed through.

In my 20s, after several months of intermittent flu-like symptoms were followed by bone and muscle pain, I was (mis)diagnosed with rheumatic fever. Episodes of debilitating neck and back pain, fatigue, and brain fog continued over the years, all of which worsened with anything but gentle activity.

Still, I pushed through. I had no idea those symptoms were merely pressure. I trusted the doctor’s advice of keeping moving, working harder, toughing it out. In 2019, just before turning 43, I jumped down from the bed of my truck after loading folding chairs for an event. A strange jarring sensation went through my spine, but it was nothing that felt serious.

By the next afternoon, I couldn’t remember what I did for a living. When asked, the information and even the ability to communicate my own confusion about it vanished as I stood staring at a new acquaintance. It was only a blip, minutes long, but that evening, my physical symptoms began to reappear.

As I write this, the connection to a spinal injury from the jump seems obvious. But what followed was a torturous succession of doctors and specialists, tests and misdiagnoses, prescriptions for medications that never had a chance to work. Tickborne illness. Narcolepsy. Postural Orthostatic Tachycardia Syndrome. The list went on. The last doctor I saw before finding my cure, said grimly, “this looks like (ME)CFS, we don’t want to see you back.” I asked about who might help me and was told there was no one. I was on my own.

I was only mildly aware of cranial pressure (IH and CSF leaks), connective tissue disorders (EDS), and the entire world of radiology at that point, but I had been following chronic illness research at the Health Rising blog since the onset of my illness. It was with a brutal preciseness that I understood what his statement meant.

It turned out I was not on my own, because the resources at Health Rising and the many patients sharing their stories online, screaming to be heard, led me to eventually discover the underlying cause of my illness. I had several leaks--two of those large--in my lower lumbar area. I was patched. I recovered and am managing my underlying IH well. I've come to suspect that a fall down stairs a year earlier created the weak spot that would eventually become my leak. And now, after three and a half years barely functioning and a year bedbound, I’m determined to share as widely as possible in the hopes of preventing the same thing happening to others.