Of the many autoimmune diseases I’ve developed since my CRPS began almost four decades ago, the only one that rivals it is fibromyalgia. Not because of the muscle pain, but rather my nearly constant state of deep sleep deprivation.
In 2000, after having CRPS for 18 years, I met advocates with fibromyalgia and we exchanged our symptoms and experiences. While it was a comfort to talk to others with severe pain, I never understood their crushing fatigue. I wrongly assumed that they were tired, like me, due to their pain keeping them awake most nights. In fact, I used to confide to my partner how much I wished I’d gotten fibromyalgia rather than CRPS because the pain seemed so much more tolerable. WRONG!!
Shortly thereafter, I started having a new kind of pain. They were points in my body that ached rather than burned and when I pushed on them, the pain radiated. Troubled, I told my internist about my new symptom – and she advised that I was working too many hours sitting in front of a computer due to starting my nonprofit For Grace. Relieved, I made her recommended ergonomic adjustments. But rather than improving, my symptoms morphed into a debilitating fatigue that I could never have imagined possible.
At about 8:30 each evening, I’d be overwhelmed with the need to fall asleep. Never a napper and always a night person, I was perplexed when I realized that I hadn’t seen the end of a movie in months due to nodding off on the couch. In fact on my 40th birthday, John brought home Gladiator. And while I loved the film from the first frame, about 20 minutes into it I surrendered to the fatigue – and slept through my New Year’s Eve birthday.
Through my nights, I’d wake every hour starting at 1 am, and I began thinking of myself as a ghost. I didn’t feel human because I was so effing tired – and in such a fog. The morning brought anything but relief as I literally forced my body to sit up, exclaiming “I’ve just been through a war!” The work day was only and all about trying to hide my fatigue, which was nearly impossible when often chin in hand, my head would slump forward nearly striking the desk. As a spokesperson I couldn’t find my words which was scary and humiliating. Somehow when verbalizing colors and time, they always came out wrong and my sentences were jumbled.
After putting off an obvious diagnosis for months because I didn’t want to be labeled a “sickie”, I finally ran up the white flag and asked to be assessed by my integrative doctor. One catastrophic disease is enough for any lifetime, but I knew I couldn’t get help without the fibromyalgia tag. Trouble was, like so many autoimmune diseases, relief was elusive. Besides acupuncture, my doctor tried to get me sleeping restoratively with lavender oil, melatonin and valerian root, all to no avail. Then he dug deeper into his medicinal bag of tricks. After a “baby dose” antidepressant didn’t help, the muscle relaxant Flexeril DID, mercifully.
To this day I take a small dose of Flexeril three nights a week with some success. At best I’m semi-fatigued with an all-day hangover from the medication. When I don’t take it, like today, I’m in a fog with debilitating fatigue. Keeping my eyes open and body upright is an endless struggle. And though I get a lot done throughout my exercise and workday, I’m always afraid that tomorrow I won’t have the choice to force myself up and out. Pajamas are often my regular dress ware and I’m working more and more from a couch. On the days when I have to get out, I admittedly think of death as the only way out of this relentless torment.
Compounding this slog is that no one gets it. I rarely mention my fatigue because I’ll inevitably hear a response like “take a nap” or “I know, I know, I’m pooped too.” On one particularly bad day while impossibly doing my pool laps, I lamented about my fatigue with the lifeguard. I asked if he’d heard about fibromyalgia – and he responded with, “yeah, I know enough about it to know that it’s not real.” Ashamed in front of other swimmers, I corrected him by saying that it’s very real and debilitating. The confrontation exhausted me more.
I pride myself on keeping a stiff upper lip while pushing through my dozen-plus comorbidities. Like so many of us women in pain, I’m tough, goal-oriented and a doer. But this fatigue, right here, right now, is shaking me to my core. What if I give in and don’t get out of bed one day? What if, like being bedridden with CRPS for a decade, my life ends again due to a fatigue-driven stupor?
I am haunted by fog.
Cynthia Toussaint founded For Grace in 2002. It is a Los Angeles-based non-profit organization dedicated to bringing awareness to gender disparity in the treatment of pain. She is also a frequent contributor to the National Pain Report.