Hello, friend! Today, I’m reposting the story of how I developed and was diagnosed with fibromyalgia as a teenager. This was originally written in September 2012, and I’ve made some edits to improve the writing.
Even before I developed fibromyalgia, there were warning signs.
I have always been ill at ease in my body. I crawled using my knees alone, no hands, as soon as I was able to, and I preferred this method of travel long after I started walking. My mom calls it “the Kira shuffle.” When I did walk, I put all my weight on the balls of my feet. My mother had me start ballet when I was three because of my toe-walking, but I struggled there as in basically every physical area.
Starting in elementary school, I underwent occupational therapy because of my bad fine motor skills. Many teachers had me type (even during spelling tests!) so they wouldn’t have to deal with my handwriting. Having my hair brushed also caused significant pain. I wasn’t old enough to take care of my own hair for a while, of course, so Mom had to struggle through me fighting and kicking and screaming at the top of my lungs. On top of all that, I was picky about clothes, foods, and loud noises and cried at the slightest provocations.
After a bad episode of melissophobia in fourth grade, I started having a tension headache that has yet to stop. I came home from school every day and ate half a gallon of ice cream because it helped a little. I also began struggling with running, which caused severe pain in my chest, throat, and side along with shortness of breath and subsequent migraines. Despite a lack of diagnostic evidence, my doctor decided I had exercise-induced asthma and wrote a note excusing me from such activities. I was very affronted by my inability to help my class in the school running competitions.
In fifth grade, my mom theorized that my youngest brother and I both had sensory integration disorder (SID), which is now considered a part of the autism spectrum. It would explain my emotional instability, my physical ineptitude, and my general oversensitivity. I accepted the unofficial diagnosis easily. For a while, I carried around a bag of calming sensory items, including a fragment of my baby blanket and sprigs of lavender. And given the nature of fibromyalgia, it’s easy to imagine how SID might overlap with or lead to it in some way.
Eventually, though, I decided I didn’t want to be the weird kid, the clumsy kid, the awkward kid anymore. I didn’t want to be the kid who had meltdowns over bees. So I conformed. I set out on a mission to be more like “normal” kids. I threw out the sensory items, I taught myself to walk flatfooted, and I started wearing stretchy jeans instead of leggings. I fought to hide my emotions more. I also underwent a massive cultural expansion, introducing me to many of the things I love now. I was never entirely “normal,” but I did my best. The cultural expansion part was important, at least! So many of my modern story loves come from that effort.
Meanwhile, in seventh grade PE, I faced a new problem when those of us with asthma were required to use an inhaler to fully participate. The inhaler had no impact on my symptoms, so I spent the first few months of middle school suffering through PE and my post-exertional migraines in math class afterwards. Finally, my doctor gave me another medical excuse from running. Then, halfway through eighth grade, soon after my brother was officially diagnosed with autism, I was given a new diagnosis too: vocal cord dysfunction (VCD), a little-known breathing disorder where the vocal chords constrict due to stress or exercise. Since my throat hurt when running, I figured it fit. In ninth grade PE, however, I discovered that I could use a stationary bike without setting off those symptoms, which didn’t really make sense. I suspect now that I didn’t have VCD at all; it must have been something related to my fibromyalgia.
Also in ninth grade, I started having extreme abdominal cramps during my periods that left me on the floor screaming and throwing up. It’s the worst pain I’ve ever felt, the worst I can imagine, past the reach of rational thought. I’d struggled with my periods before that, with leakage and moodiness and irregularity, but all that was nothing compared to the growing pain.
Though fibromyalgia is complex, multifactorial, and not well understood, there seems to be a genetic element. All the above “pre-symptoms” likely hinted at this. But the full-on disorder doesn’t tend to develop until after a prolonged period of stress followed by an acute trauma, like a car accident or childbirth. Or, perhaps, a serious illness.
During my tenth-grade year, the 2009 H1N1 swine flu pandemic occurred. People had two reactions: either it was the end of the world, or it was a ridiculous thing to worry about. I leaned more to the latter side. Then I woke up on Halloween morning sick–my hips and head hurt badly, and I was coughing.
I decided that a “normal” teenager would go to their friend’s party despite being sick because “normal” teenagers are irresponsible. I had no idea what the consequences of that choice would be. When my friends and I went to check out the decorations down the street, I had a horrific coughing fit. I almost choked, and my friends had to rush me back inside. I went home with a 101-degree fever. The next day, I stayed home from church, incredibly sick and sleepy. When Mom came back and woke me up, I had a 103-degree fever.
I spent the next two weeks in and out of school as fever and cough and dizziness and pain came and went. After one relapse, I went to Urgent Care, where I was diagnosed with a Type A influenza and bronchitis. After another relapse, I went to the Emergency Room, where I was told that my flu had worsened. A couple days later, we went to my regular doctor, who told me that, in fact, I now had strep throat–an illness I’m particularly susceptible to and had multiple times in a row when I was little.
Eventually, I recovered, except for one thing: my hips wouldn’t stop hurting. I’d wake up in the middle of the night, in too much pain to even scream, feeling as if a burning sword had been thrust into the side of my hip. I’d flip over and then lie there, shaking. It kept getting worse, even moving into my left knee in February. I was losing sleep and becoming more and more stressed. Finally, in March, after an orchestra performance that ended with me in tears, I told Mom I needed to see the doctor. Just after my sixteenth birthday–which I’d been dreaming about my whole life–I was diagnosed with a temporary form of arthritis set off by a pathogen. It was supposed to go away by the summer.
The pain lasted through the summer, but I stayed hopeful. Then, on the first day of eleventh grade, as the stress from a chaotic new school year hit me, my symptoms exploded. The pain I had been suffering in my hips and knee expanded across my torso and down my legs. That night, I couldn’t sleep from the pain. I could only cry. As the week continued, the pain spread up my face, through my fingers, into my chest. I hurt all over, all the time. Not only that, but I felt unfocused and distant, like there was a box of glass separating me from everyone else. Sometimes, the energy evaporated from my muscles, leaving them heavy and useless. As a natural result, I became very emotional. No one understood how much of a burden I was carrying. Some people thought I was freaking out for no reason. But it was all I could do to make it through each day.
This wasn’t reactive arthritis. This was something more serious. Rheumatoid arthritis, lupus, ankylosing spondylitis, Lyme disease, leukemia–the possibilities horrified me. I might have to stop doing the things I loved: orchestra, church activities, even school. My doctor started what would end up being a half a year of testing. I hit disappointment after disappointment as each result came back normal, offering me no answers. (The average fibromyalgia sufferer spends something like seven years trying to find a diagnosis, so I was actually quite lucky.)
Meanwhile, as the weather grew colder, I found myself struggling even more. The low temperatures bit through me, yanking my muscles taut and scraping against my bones, and all my symptoms continued to worsen. I learned to hate the snow. I had to go to bed at nine every night to be able to function the next day. I never had a moment without pain–and the kinds of pain! You don’t understand how many kinds of pain there are until you’ve had a condition like this. Between that and the fatigue, my memory and focus were failing.
I needed extra help in math class. I kept forgetting to do basic tasks. I began doing things like putting the ibuprofen in the refrigerator and the milk carton in the sink. When I got my influenza vaccine for the year, my symptoms went into a flare so severe I even developed temporary aphasia. (Luckily, I haven’t had any reaction that bad to a vaccine since then.) I was also having digestive issues, swinging back and forth between diarrhea and constipation with period-level cramps at times.
In mid-October, I decided to research something my doctor had mentioned but that I’d rejected mostly out of fear of the strange word. “Fibromyalgia.” I had told her that my pain was only in my joints, but by now, it was clear that wasn’t true. As I read about the condition, everything started to, horrifyingly, amazingly, click. Symptoms I had that I’d not even given thought to matched with the description.
I wrote a long document about all my symptoms and how they’d appeared, making the argument for fibromyalgia. (My pediatrician is the only doctor I’ve had who actually read my extensive explanations.) I was terrified that I was wrong. I was terrified that I was right. After reading all those pages, my doctor just said, “Okay,” and started the official diagnostic test used for fibromyalgia at the time. Most fibromyalgics have at least 11 of 18 “tender points,” quarter-sized areas in specific places on the body that hurt with only the slightest application of pressure. At the time of my diagnosis, you had to have these along with an appropriate combination of other symptoms.
I presented as having 15 of the tender points. I was officially diagnosed with fibromyalgia. (My doctor also diagnosed me with mixed irritable bowel syndrome, or IBS-M, which commonly occurs alongside fibromyalgia. At the time, I had additional thyroid and vitamin D decencies that were easily corrected with little practical result.)
I left the doctor’s office swinging back and forth between laughter and tears, which alarmed my mom–I was ecstatic because finally I had an answer I could give people to explain my symptoms; I was also grieved by the stark reality of my now forever-changed future. The combination of the two was hard to explain.
Fibromyalgia is one of many chronic illnesses that currently have no cure. All that can be done is symptom management. To this day, medical science doesn’t really understand fibromyalgia and the various conditions that often appear with it, although it’s clear that the entire nervous system of a fibromyalgia patient is overactive due to various chemical imbalances and low-level inflammation. Essentially, our bodies process everything as pain. Movement is pain. Touch is pain. Cold is pain. Light is pain. Food is pain. Gravity is pain. Even for those of us who are able to manage the disorder well, an incredible amount of sacrifice is necessary.
My diagnosis set off a natural grieving period. Every day, I’d think of ten more things I’d never be able to do without an excess of struggle and suffering that could push me straight into a severe flare: skiing, playing basketball, rock climbing, riding a real bike, hip-hop dancing, giving birth.
Having children had always been a big goal of mine, so that last one hurt badly. I had a breakdown crying in my child development class that year after watching a birth video because it hit me then how impossible that was for me now. I had to give up so many dreams and goals and hobbies, most everything physical, for the sake of my highest priorities. I had to limit my social engagements and leave events early. I had to be more careful about chores and practicing cello. Every single little action had a cost that reduced my ability to attend school and go to church and write my books.
Basically, with my diagnosis, I had to transition from my previous life into one in which I constantly considered my physical self. Sometimes, the thought of having to keep living my life in a body that’s broken seemed impossible to face. Even now, there are days where I’d rather just stay in bed.
But three people said things back then that I desperately needed to hear. The first was my best friend, who offered what I’d most wanted: the simple recognition that my situation was crappy. Even now, what I appreciate most is when people are brave enough face the truth of my situation and acknowledge its ugliness without trying to squirm their way out through health advice or false positivity. The second person who helped me was my government teacher, who told me that that he believed I’d eventually figure out where my limits were and how to balance my priorities. The third person was my orchestra standpartner, who, when I started crying in class one day, came over and hugged me. He didn’t say a word, but the gesture was worth a thousand of them.
Those three events, occurring right in a row, made me determined to find a way to make the best of this new situation. I had to do whatever it took to hold on to the things that mattered most to me, because I deserved them, because I was here, and because I was loved. So by the end of eleventh grade, I found my way into a manageable routine. I started forgetting what it was like to not be disabled.
There were still struggles, however. One statistic I’ve seen says that about a third of fibromyalgics worsen over time, a third get better, and a third stay the same. I’m part of the first group. When I came back in twelfth grade for school registration, I realized that, despite all the changes I’d made, I was no longer able to handle a full school day. As a result, my mother let me try an antidepressant, despite her major and valid concerns about the dangers of antidepressant use in teenagers.
The result? It was marvelous, a true miracle. One of my favorite memories even today is waking up in the middle of the night, a couple days after starting the medication, and realizing that I felt much better. For the first time in a year, there was a brief moment where I wasn’t tired and I didn’t hurt.
I was so thrilled, I went and immediately woke Mom up to tell her the good news. She was scared that the antidepressant was making me crazy, but if she’d been in my body, she’d have understood why I was so eager to celebrate that with her, no matter the time of night. The symptoms continued, of course, but my overall level of illness improved. Through the magic of medication, I was able to graduate high school on a normal schedule–with a 4.13 GPA, no less!