I tend to keep pretty quiet about the fact that I have fibromyalgia. It is likely due to my stubborn sense of bravado (nothing to see here!), that it’s just something to suck up and deal with, but lately I’ve found that sharing my experience has helped me to find new resources with which to manage what has become more than a nuisance.
The disease itself can be quite insidious. Things first appeared to go awry when I was in college, when I slept through most of my first winter break. I found it odd, but chalked it up to depression from losing my dad and mental fatigue from my first semester in a competitive business school. Upon returning to classes, my body seemed to readjust, and any fatigue was taken in stride as part of the life of a college student.
But god, did I hate getting up in the morning. Worse yet, I would “sleep-talk” and have full conversations with no recollection, so if I woke up and found my car missing, I’d later find out I gave my brother permission to borrow it (confirmed by my mother). Who knows how much money I lent out. I dreaded having a corporate life, because my body just did not seem to like that whole 9-to-5 thing, so I knew I needed to find a lifestyle with some flexibility. As it turned out, I was an entrepreneur at heart anyway, so yay for the universe aligning.
I did go the corporate route for a short time, however, which ultimately led to the disease appearing in full bloom. Circa spring 2001, my office was located right in the heart of midtown Manhattan, and it was the happiest time in my life. I was traveling to Paris for business, eating in the best restaurants, and having a grand old time with some of the biggest food superstars in the world. Then the world changed.
Obviously, post-9/11 New York was a tough climate in which to work — stress levels were unbelievably high, and those of us traveling in and out of Grand Central had the joy of an occasional evacuation to go with the evening commute. I found that my thinking was a little foggy, and I was feeling achy, so I went to the doctor to see if it was the flu. He told me I was too stressed out, and that it was all in my head. Undaunted, I made him test me for everything from lupus to thyroid disease. Nada.
Around Christmas time I noticed that I was feeling unwell most of the time, and one evening as I shopped for gifts, my legs suddenly gave out. I managed to get myself home, but spent the entirety of Christmas Eve on my mother’s couch, unable to move. Feeling terrified, I rested up and proceeded to ignore the problem, hoping it would just go away.
But when my brain began to fail me, alarm bells started going off. My brain was the one thing I had always counted on, and suddenly I couldn’t remember the simplest of tasks. Like a critical conference call with the international division heads of my company — of which I was one. Oops. Realizing I could no longer ignore said problem, and riddled with physical pain, I called an orthopedist.
On September 11, 2002, this orthopedist listened to my symptoms. She was particularly intrigued by the sleep-talking, and mentioned that I probably had a number of sleep disorders. Awesome. After touching some very tender points on my upper body, she looked me in the eye and said, “This is easy. You have fibromyalgia.”
I felt simultaneous elation and depression. At last, this damn thing had a name — but no cure. And I had…a disease. One with barely any history of medical research, placed in the seemingly “random” category of illnesses that can’t be fully defined. The doctor started me on a tricyclic anti-depressant (Elavil) to regulate my sleep cycle, and it was as if my life were transformed overnight. No pain, clear head — all good. I struggled with the idea of being medicated this way, however. I’m not a pill-popper, and the idea of being on an anti-depressant made my skin crawl.
I soon found that if I worked out regularly, I could wean myself off the pills and take the natural route, which was preferable, and it worked well for a few years — until I started what is now the Culinary Media Network. Working out was replaced by hundreds of hours at my desk, and the pain set in. Sometimes I would wake up unable to stand, and would crawl to the kitchen to pop a few Aleve and get back to my desk, body screaming for mercy. I knew this could not go on, and once again returned to the medicine — only now, it didn’t work so well. Eff.
For the past few years I’ve been doing a lot of international travel, and keeping the insane hours of the entrepreneur, and every once in a while I pay dearly for it. I try to keep the stress at bay, as it is the biggest trigger, but sometimes I lose that game of chess. The fluctuations in the economy over the past year have not helped, so I once again tried returning to the medication to get the symptoms under control. It set off six months of insomnia. Six. Months.
And though much work has been accomplished thanks to said insomnia, I cannot begin to describe what it feels like to have my entire spine in a vice grip, where even a bra strap is a source of agony, and where it perpetually feels like I’m coming down with the flu. Where hugs hurt. And I really, really like hugs. Poor Chef Mark has had to experience it in real-time, where I can forget things from one minute to the next, and become a raving bitch at the drop of a hat.
So now I’m committed to finding a natural solution, because I could go on playing through the pain, but to me that is not an optimal existence — for me or those around me. The symptoms tend to appear in cycles, and sometimes I can go for months with no problems, but there has got to be a better way. I’ve resumed yoga, am heading back to the gym this week, and have made significant changes to my diet, but I don’t want to leave any stone unturned. I will make myself better…or die trying. No matter what the result, I will continue to live my life at full-throttle, but it would be great if I could do that with a bit more physical comfort and mental acuity. And no way in hell am I giving up the hugs.
If you are a fibromyalgia sufferer (or play one on TV), what natural methods have worked for you?