Introduction

Hi. I'm Another Invisible. As in, another person with an invisible illness. Another person who looks just fine a lot of the time, but isn't. Another person who can walk a straight line in a doctor's office but can hardly make it to my car after I've spent an hour at the mall looking for a birthday present.

I was just diagnosed with something called cramp fasciculation syndrome (CFS). It took me 13 years to get this diagnosis. That's because I was just another member of the working poor when my symptoms first began, doing the best I could to feed my family - working full time but unable to afford health insurance. When I began seeing a doctor regularly, I was clearly, to her, just another patient with the aches and pains of aging. I was even told, "You're too young to feel this old!" (I knew that; it was the reason I was mentioning my symptoms to a doctor.) When I finally pushed for testing, I was just another patient with negative antinuclear antibodies (ANA) panels. I was another person getting another shrug. No; I was another person getting the same shrug. The same shrug, over and over.

I was another patient who "might" have fibromyalgia (except for the fact that so many of the symptoms didn't fit). Another person who "might" have chronic fatigue syndrome.

That wasn't good enough for me. Chronic fatigue syndrome might, according to researchers, be several different disorders. And it's often treated with pain-suppressing medications like Lyrica. I wanted the pain to stop, sure, but I didn't want it simply covered up - I wanted to know what was causing it, and I wanted that process stopped in its tracks.

Eventually I found a wonderful primary care physician. One who believed what I said, who believed I had a muscular disorder of some sort. At the same time, I became just another mentally unbalanced woman to specialists, one who either wanted attention or one whose anxiety was so extreme it was manifesting itself physically.

One such specialist told me I didn't need the electromyograhic study (EMG) that my doctor had requested. Instead, I needed a neuropsychiatric evaluation. We bartered: I would have the neuropsych if he would order the EMG.

The neuropsychiatric exam was normal.

The EMG, though nonspecific, was not.

I first brought my complaints to a doctor roughly eight years ago. It's taken eight years to get a diagnosis, and I only got one because I pushed so, so hard for one.

You might be in the same situation. If so, or if you're interested in this condition for any reason, I welcome you to read on. I'll talk a little bit about my symptoms and experiences, I'll voice my opinions about some of the issues CFS patients face, and I'll post as many links as I can find to medical studies about this disorder.