Betrayed by my own body

Migraine has had a destructive hold on my entire life for as long as I can remember. I’ve spent the better part of my life trying to find ways to loosen is iron grip. Almost three years ago, I finally discovered a path that led me on that long-awaited journey. Today I enjoy better migraine management than ever before.

Sixteen years ago I was also diagnosed with cluster headaches. The excruciating pain complicated my already tenuous migraine management, drove me into a deep depression, and caused me to question nearly everything I ever believed. Over time I learned to cope, but never really experienced good control until three years ago. The same series of events that led to better migraine management also tamed the cluster headaches.

Four years ago I started experiencing new symptoms that made me feel as if I were twice my age. Every move I made was painful. Resting was even worse. I couldn’t find a single body position or movement that did not trigger pain. I felt as though all my muscles had locked up and migraine has spread throughout my body. I struggled for two years before finally getting a diagnosis…fibromyalgia.

I should have been relieved to finally have my suspicions confirmed. Yet the victory was hollow. Preventive treatments were only moderately successful. Even exercise proved to be both helpful and harmful. All of a sudden I could not sleep, despite regular use of my CPAP which had been working for years.

I felt betrayed. All those new migraine-free days were still being wasted because the pain had spread all over. The trade-off was not fair. Despite improvement in one area, I still had poor quality of life. I wasn’t the only one frustrated by this turn of events. My husband routinely complained that I was no better off. He began to resent my reports of reduced migraine attacks because the lack of migraine really made no difference. In many ways I was much worse off — more isolated, irritable, and incurable.

It has taken me quite awhile to come to terms with this new challenge and even longer to figure out how best to deal with it. It would be nice if I could tell you that I am feeling better with fewer symptoms, but that would be a lie. It’s been three days since I was functional enough to leave the house. Now that the rest of my body has been lowered to a dull roar, a migraine has appeared to slow down my day.

I’ve been betrayed by my body.

This post is in honor of Fibromyalgia Awareness Day, May 12, 2016.