Coming from a family of fibromyalgia sufferers, Caitlyn Elf, 23, of New York City, was devastated when the symptoms—tender muscles, fatigue, stiff joints, and migraines—set in during her sophomore year of college. Falling first into a depression, she later found the strength to fight fibromyalgia and reclaim her life.
Caitlyn (right) and her mom both have fibromyalgia. For Caitlyn, developing the illness was a journey from depression to triumph.(CAITLYN ELF)
Sitting in the exam room clutching my fists in some misguided attempted to alleviate my aching muscles, I heard it: "You know, it is possible that this pain is just in your head."
There it was. The frustrating response that my sisters, my mother, my aunts and my mother's mother before them had received time and time again; the one simple statement that took years of endless pain and transformed it into nothing but an illusion. It was only then that I truly understood what it meant to live life with fibromyalgia.
Had I not been cautioned by those who preceded me in hearing this diagnosis, I would have been much more outraged. Despite the warning, I still found that it hurt to actually hear someone cleanly dismiss the entire disorder like that. Not because I felt irritated (though I did), but because it meant little hope for a pain-free future. If medical professionals refuse to recognize the reality of fibromyalgia, there is little chance of a true treatment ever being explored, let alone found.
How Patients Cope With Fibro
The first step is acceptance, the second is redefining and reclaiming your life Read moreMore about fibromyalgia
Whether someone else believes it or not, I am forced to deal with this pain daily. Some days my muscles are so inflamed that I can hardly bear the weight of clothes. Migraines often induce a toilet-hugging night, praying for the pain to somehow subside. Rather than trading beauty and fashion tips, my sisters and I exchange remedies and treatments. Family gatherings frequently devolve into commiserating about the myriad of sub-symptoms: the IBS, the anxiety, the fatigue.
The family inheritance I'd rather forego
As children, my sisters and I would sit and listen to these stories from grandmother, mother, and aunts. We were a captive audience to the tale of a seemingly far away journey. But soon, my sisters received their diagnoses and began to chime in, offering their own management tips. It wasn't until college that my symptoms really picked up, finally allowing me into the club. I quickly realized that this was one conversation I would have gladly sat out on.
Next Page: Falling into fibro and into despair
[ pagebreak ]Falling into fibro and into despair
The majority of my sophomore year in college was spent feeling odd. My list of symptomstender muscles, constant fatigue, morning stiffness, and migrainesgrew quickly, taking my body prisoner before I had time to process it.
At first I noticed it took me longer and longer to recover from a workout session at the gym; one new move that worked a previously dormant muscle would leave it sore for days. The tenderness in my feet, once an annoyance, was now so uncomfortable that I could often only manage to put on slippers or sneakers. One day, looking into my closet my eye caught a pile of formerly beloved shoes that had taken a permanent spot in the back corner. Morning workouts were done away with completely, if not due to the severe morning stiffness than because of the horrible chronic fatigue.
Soon, a dark cloud of depression took residence over my life, making it harder to see anything positively. By the end of the semester, sleep had become fitful, migraines more frequent and each day seemed to bring a newly discovered trigger point. The fibro had me tightly within its grasp. I was no longer running my life, it was.
Shutting out the world
I watched from the sidelines as my girlfriends gallivanted off to parties. I'd hang back knowing that the alcohol and late nights would only provoke migraines and intense fatigue (not to mention the trigger points the stilettos would set off in my feet). When rain was forecasted, my roommates complained about getting wet, but I dreaded the havoc it would wreak on my muscles. I experienced widespread anxiety that my friends often attributed to being a perfectionist, which, of course, I let them think. By the end of the year I was significantly heavier (the pain loves junk food) and I felt lost and depressed.
I spent the majority of that summer feeling sorry for myself. I was confused and frustrated and began to see my situation as hopeless. I traded my running shoes and free weights for Oreos and daytime TV. I hid from people, embarrassed of my weight gain. I spent my nights in fits of anxiety wondering how I would continue to maintain such an isolated life back at school. All the advice I had heard over the years, the tips to help stabilize and manage this disease seemed like faraway musings. Fibro had conquered me. I had let it.
Next Page: Finally taking charge
[ pagebreak ]Finally taking charge
Arriving back on campus my junior year, I decided enough was enough. I had never been a helpless person, and I was not going to allow myself to become one. I began slowly by taking steps to improve my diet. As the weight came off, I felt more motivated to move. I took the stairs to all my classes and walked to and from my off-campus apartment rather than opting for the bus. Gradually I began running and as the miles increased, I enrolled in a yoga class to balance out the tension the running was putting on my muscles. The months flew by in a blur. I had rekindled my old friendships, began going out (though never drinking, and always leaving by midnight), and had managed to steady my condition as much as possible.
Each fibro journey is different
It was during these years of actually experiencing the syndrome first hand, that I began to understand that no two cases of the condition are the same. While I could lean on my family for moral support and advice, none of them held the key to pain-free living. Each and every one of them had to go through their disease journey and find what worked best for them, just as I did. My aunt swears by yoga and a strict diet, my oldest sister runs distance while my middle sister and my mother hardly exercise at all. All of this is accompanied with wraps, heating pads, and my mother's famous tennis ball invention which, when rolled on at the exact right angle, can hit a trigger spot and provide some temporary relief.
Though I'm certainly not holding my breath in the hopes of a wholly pain-free future, I've learned that I'm in control of what I choose to do to manage it. A careful combination of faith, yoga, running, and eating right as well as a good eight hours of sleep each night have proved to be the best stabilizers for me. Along with that plan, simply deciding to change the way I looked at my situation helped immeasurably. I found peace in the realization that, as with any chronic pain, I'll have good days (which I can focus on and revel in) and bad days (which I now know how to handle).
Had I not had six of the strongest women I know to help guide me through this syndrome, I don't know how I would have survived. It is through them that I have been given the power to cope with both my realities and my "illusions."