Author’s Note: Everyone’s experience with fibromyalgia is different. I do not by any means intend to speak on behalf of the FMS community as a whole.May is Fibromyalgia Awareness Month, and this is my story.
Being a teenager with chronic pain, fatigue, and the occasional brain fog is hard enough. What’s harder is not understanding why it’s happening to you. By the time I was diagnosed with fibromyalgia syndrome at 18 years old, I had gone through countless hours of desperate online research, months of attempted treatment, and years of feeling impossibly set apart from my youthful cohorts without knowing what made me hurt so much.
The problem with fibromyalgia is that no one is sure precisely what it is, hence the title of “syndrome.” Some believe it’s a type of autoimmune disorder, while others believe it’s a central nervous system disorder, and still others who speculate other causes entirely. On top of that, there are no visible symptoms other than inflammation and muscle tension, placing it in the category of “invisible illnesses.”
When I say inflammation and muscle tension, I don’t mean the occasional headache and the average tightness in the shoulders that people get from working hunched over at computers. When one knot appears in my back, it sends an overabundance of pain signals and slowly spreads all throughout my shoulders and neck, sending a greater overabundance of pain signals that creates a sort of vicious cycle. That’s the gist of it, anyway, or the gist of the theory that I am most inclined to believe.
Let me also explain the difference between tired and fatigued. We’ve all been tired. Your brain’s a little fuzzy, you’ve got bags under your eyes, and you would like to curl up in a ball and sleep. Fatigue is a whole new level. It pulls down on your every limb, making every step feel like you’re climbing a mountain and trudging through water at the same time. Caffeine doesn’t help, and it often comes suddenly and with little warning, usually when it is least welcome.Invisible illnesses are ravaged by stigma, but fibromyalgia especially takes a lot of the heat. Skeptics say that it doesn’t exist, and people just make up symptoms to get out of doing work, or that it’s purely psychological and not a physical illness. Part of the problem is that fibromyalgia mostly affects women, and the average age of onset is 45. Experimental drug treatments often include antidepressants. Moreover, it is a common misdiagnosis for outwardly-similar conditions, casting doubt on those who actually suffer from it. Looking at me, you wouldn’t think, oh, that girl has a chronic illness. I feel like I have to constantly explain myself to people when I tote a rolling backpack or have to go to my bi-weekly massage therapy, yet I’ve been conditioned to think that there’s something wrong with admitting, “I have fibromyalgia.”
I first remember experiencing symptoms when I was 14. They were pretty minor at the start. I never really thought that the occasional sore back muscle or irritated nerve was a problem. They were just things that happened, then went away. Until I got a headache that lasted three weeks straight.
Why is this still going on? What’s happening to me? Do I have a brain tumor or something? That sounds drastic, but keep in mind—I was 14. A freshman in high school. So, naturally, I didn’t suspect that the actual culprit was my back muscles getting so wound up that the tension traveled all the way up to behind my eyes. I also had no reason to suspect that the complete and utter exhaustion I felt on some of those days was anything more than sleep deprivation and working hard on my very first high school theatre production. Luckily, a couple of adjustments and some trigger point targeting from a chiropractor, who I’ve been seeing him ever since, fixed me up. According to him at the time, I was just “a little more prone” than the average person to back issues. Fine, I thought, I can live with that. The occasional tune-up and I’ll be fine.For a few years it went on like that. I went about my life as usual, getting the occasional adjustment when my spine started to feel off. I started getting acupuncture and cupping when the muscular problems got worse. I did a lot of stretches that I knew from years of dance and figure skating, and I got a supportive pillow for my neck. I did my best not to have to carry my backpack for too long, and if I did I would half-support it with my arms so my shoulders didn’t have to take as much strain. If I carried it for too long, I would feel like I was going to pass out. But with time, it got worse. I felt exhausted increasingly often, and sometimes I would get home and stare at all the work I had to get done, yet not be able to conceptualize in my mind exactly what had to be done and in what order. By senior year, the pain had gotten to the point where I would be standing in choir, and after too long my hips would be excruciatingly tight and achy. Sometimes it even hurt to sing, my neck muscles were so tight, and I couldn’t for the life of me unwind them. I used to think I was just stressed out and sleep-deprived like everyone else, but when I compared myself to all my friends, it was clear that there was something else going on with me.
I thought the problem may have been solved when x-rays revealed that there was a stress fracture in my fifth lumbar vertebra. Because it occurred on both sides, the bones had begun to slip. It’s actually a fairly common back injury, and mine fortunately wasn’t severe. We couldn’t pinpoint a cause other than repeated motion putting stress on the area until it cracked, and the doctor explained that the pain in my hips was probably because I’d been compensating with my stance. Still, after treatment including, but not limited to, a month in a back brace, the implementation of a rolling backpack, and physical therapy, my neck was still killing me, and apart from another MRI and some (not very helpful) supplemental exercises, my doctor had no explanation or idea of how to help.
Something you notice by having strange health complaints is that some hospitals react better than others to anything that doesn’t have a neat-and-tidy answer. It was rather obvious that the doctor I was seeing for my lumbar fracture wasn’t interested in further discussion. He barely gave me proper attention for the primary problem we were treating until I brought in my game face and a legal pad full of questions. When I told him there were still problems, he just looked confused and more or less waved me off. By the time I finally got diagnosed that summer, I had been poked, prodded, crunched, stretched, and twisted. I’d had 2 MRI’s, 3 x-rays, 8 vials of blood drawn, and countless hours of physical therapy, all yielding essentially nothing. I was beyond frustrated. I wanted to scream, I SWEAR MY PAIN IS REAL. The problem is that a diagnosis of fibromyalgia is essentially ruling everything else out, since there’s no way to test for an illness with an unknown cause, other than the set of symptoms.
We ended up at the OSU Center for Integrative Medicine, which specializes in combining alternative treatments with Western medical practices, which is perfect for me, since I didn’t want to see a doctor whose first instinct would be to shove antidepressants down my throat. The doctor asked me a lot of questions, looked at the records of my MRI’s, x-rays, and blood tests, and diagnosed me with fibromyalgia. He assured us that it was a legitimate condition, and that I wasn’t crazy—there was a reason that I was exhausted, sometimes foggy, and always in pain, even if science hadn’t fully determined what it was. It was somewhat heartbreaking to know that the pain would never fully leave, that there was no way to “fix” me, but for the first time, I felt validated. And more importantly, I had found someone who could help make it more bearable.
I was “prescribed” a new anti-inflammatory diet and nutritional supplements in addition to yoga and the regular acupuncture, massage, and chiropractic adjustment I was already getting. We discussed what was happening in my body that caused different kinds of pain, and what lifestyle changes I could make to manage it. I already liked to eat fairly healthy and had experimented with eliminating certain food groups based on online research from others with chronic pain. But now I had a solid outline on which to base my food choices, also listing the effects of certain food categories on the body. On top of all of this, he pointed out that getting enough sleep and not overtaxing myself were important, more so for me than for the average person. Strengthening and stretching the muscles would help, but not if I paced myself too quickly with exercises. Heat packs and rooibos tea are golden when they get sore. I wish every day that my pain would leave and never return. However, my dealings with it have made me wiser and taught me some important lessons. First and foremost, I have learned how to take care of myself and my overall well-being, as it’s important to do everything I can to prevent my symptoms from flaring up. I was not granted the luxury of living an unhealthy lifestyle, even if I am a college student immersed in a weekend party atmosphere and an endless supply of fro-yo.
Furthermore, I have had to learn to be my own advocate, especially when it comes to my body. Because there’s such a stigma surrounding fibromyalgia and related conditions, and because many doctors sometimes refuse to acknowledge an answer that’s not a neat and tidy, I have needed to stand up for myself a lot and be prepared to explain exactly what I’m experiencing and push for more options or possible causes. When I hear, “Oh, you’re too young for all that,” or when people ask me about the KT tape on my neck or why I have to go get a massage, I have to remind myself that there’s no shame in saying what I have, and do my best to succinctly explain what it is. Sometimes I can feel the judgment of people assuming my slightly-complicated diet is a nutritional fad, or that I get massaged out of luxury, when in fact they’re essential to preventing myself from being in significant pain. I generally try to convey that when it happens, but if it doesn’t work, I just let it go.
Nowadays, I do what I can, and it usually works. I still have flare days. I still get exhausted without warning, but power through as best I can until I can rest. I still never know when one side of my body is going to cinch in on me, or when I will or will not be able to bend myself the way I usually do. I still have nights when it’s hard to fall asleep because there’s no comfortable way to lay down. I still have days when the list of tasks in front of me seems like the most daunting thing in the world, and I can hardly remember how to start. I feel some degree of pain almost constantly, but I try to wear it as a reminder to always take good care of myself, not as a burden. That often means making sacrifices, like staying home with a cup of rooibos and a heat pack rather than going out and getting drunk or skipping the macaroni and cheese in favor of veggies and tofu. It’s not perfect, but it’s manageable, and that’s the best I can ask for.
I’m not asking for pity or even for people to be able to fully grasp what my life is like. All I ask is that people listen and understand that there is a reason for the things I do, and what having a chronic condition means for me. Above all, I ask for people to be aware that regardless of its “invisibility” and any stigma surrounding it, fibromyalgia is real, and it affects millions of people, myself included. My hope is that through sharing and understanding, we can erase that stigma and come closer to the possibility of a cure.
Image Credit: Annmarie Morrison