Today, it's time for something more serious. I've thought for a while that, since it's one of my causes and so vastly misunderstood, I should share my story about living with fibromyalgia. I hope it will help more people understand what we fibromyalgics face. Keep in mind that the condition has a whole slew of symptoms and causes, which means that its sufferers have different experiences. This one is mine.
*Read the continuation of this post, written 13 October 2018, here.*
Fibromyalgia (FM) is a medical condition characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include fatigue, sleep problems, trouble with memory, digestive problems, and sensitivity to noise, lights or temperature.
-- via Wikipedia, the free encyclopedia
Even before I developed fibromyalgia, there were warning signs, what I call "pre-symptoms."
It's easy to dismiss how clumsy and ill at ease in my body I always was--that's true for many people. More significant is the weird way I learned to crawl: on my knees, but not using my hands. My mom called it "the Kira shuffle." I don't remember enough to know, but I imagine this choice of ambulation might have been caused by sensitivity in my hands and arms. Even after I learned to walk, I moved strangely, putting all my weight on the balls of my feet, because of walking in a regular fashion caused sharp pain in my heels. I walked on my toes all the way until sixth grade, when I retaught myself to walk normally.
Having my hair brushed or combed also caused severe pain all throughout my childhood. 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. Once I could brush my own hair, and thus better control what pain I experienced, things improved somewhat.
Nonetheless, I was an anxious, moody child. My first ballet teacher (a hobby my mom chose for me because of my toe-walking, not knowing the real cause) said that I was "the only three-year-old she knew who PMSed." After a particularly bad episode in fourth grade in which I developed a phobia of bees for a handful of months, a few new health issues cropped up. First, I started having near-constant tension headaches that, even to today, have not stopped. Second, I began to have problems with running. Trying to participate in active-type sports caused severe pain in my chest, throat, and side along with shortness of breath, sometimes leading to dizziness, confusion, and migraines. Despite a lack of diagnostic evidence, my doctor decided I had exercise-induced asthma and wrote a note excusing me from such activities. Needless to say, that, along with my toe-walking, did not do wonders for my popularity.
The next year or so went by without any new physical issue, but when my period started in sixth grade, I proved to have a lot of trouble with moodiness, digestive upset, and a continuously unpredictable schedule. Most notably, the cramps were severe, to the extent, perhaps a fourth of the time, that I ended up 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've never been diagnosed as such, but my theory is that I have PMDD, premenstrual dysmorphic disorder, which occurs in many fibromyalgia patients. Taking birth control pills has helped a lot.
That same year, as my youngest brother began the diagnostic process that would end with autism, my mom realized there might be something strange about me too. We thought then that it was Sensory Integration Disorder and that my brother and I had different versions of it. It would explain my moods, my clumsiness, my persistently awful handwriting, my strange walking habits, my headaches, and the fact that I couldn't stand to wear regular jeans. I accepted the self-diagnosis easily. For the rest of the year, I carried around with me a bag of calming sensory items, including a fragment of my baby blanket and sprigs of lavender--once again, very good for social acceptance.
Once I got to middle school, I realized I didn't want to live like that. I didn't want to be the weird kid, the clumsy kid, the awkward kid. I wanted to be normal. So I conformed. I started wearing regular clothes, keeping up with pop culture, trying to look pretty, keeping control of myself. I'm not one to say that you should conform away from who you are, but I do believe that, in all that, I found a better version of myself. It was a massive cultural expansion for me, introducing me to many of the things I love now, and it helped me to gain some greater faith in myself. Self-confidence is something I've always, and still do, struggle with, but I began to stand up for myself a little more strongly.
But I also ran into a new problem in seventh grade, in PE, where they required all asthmatics to use an inhaler and fully participate. The inhaler, in turned out, had no impact on my symptoms. I spent the first few months of school not only struggling through PE, but also through the migraines that inevitably cropped up during the next class period. Finally, although she had no idea what was going on, my doctor excused me from running again, and I was able to relax a little. Halfway through my eighth grade year, soon after my brother was diagnosed with autism, I got a new diagnosis too: VCD or vocal cord dysfunction, a little-known breathing disorder where the vocal chords constrict due to stress or exercise. Since my throat hurt when running, I figured it was a rational enough explanation.
In ninth grade PE, however, I was confused by the discovery that I could use a stationary bike without setting off those symptoms so badly. Exercise still wasn't fun for me, but I could do it without it becoming unbearable (and setting off migraines). Somehow, doing aerobic exercise while sitting down was easier for me. Ever since then, I've used an exercise bike to stay in shape, and nowadays, I think I probably didn't have VCD at all; instead, I suspect that this relates to my fibromyalgia.
Here's the thing about fibromyalgia: though its cause is complex, multifactorial, and not understood in full yet, it's usually set off by a specific trauma either to the body or the mind. Sometimes, it's a car wreck. Sometimes, a PTSD-triggering trauma also causes it.
Sometimes, fibromyalgia is set off by an illness.
In 2009, the beginning of my tenth grade year, there was a swine flu pandemic. I remember people had two different reactions: either it was the end of the world or a ridiculous thing to worry about. I was more on the latter side. Then I woke up, 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 their illness, because normal teenagers aren't responsible. I wanted a moment as a normal teenager--and, like most teenagers doing stupid things, I had no idea what the consequences would be.
When my friends and I went outside to check out the decorations down the street, I went into a coughing fit. I almost choked, and my friends had to rush me back inside. I went home with an 101 degree fever. The next morning, Sunday, I stayed home from church, incredibly sore and ill and sleepy. When Mom came back and woke me up, I had a 103 degree fever.
For the next two weeks, I was in and out of school as my fever came and went. After one relapse, I went to Urgent Care, where I was diagnosed with the flu and bronchitis. After another, I went to the Emergency Room, where I was told that my flu had worsened again. A couple days later we went to my regular doctor, and she told me that, in fact, I now had strep throat.
Eventually, I stopped being sick, 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 my hip. I'd immediately flip over, and then lie there, shaking. It kept getting worse, even moving into my left knee by February. I was losing sleep and becoming more stressed during the day. Finally, in March, after an orchestra performance that landed me in tears, I told Mom we needed to see the doctor. Just after my sixteenth birthday, I was diagnosed with reactive arthritis, a temporary form of arthritis set off by a virus or bacteria. It was supposed to go away by June.
I'd dreamed since I was three years old about being sixteen: how I'd be popular, and powerful, and beautiful, and how guys and girls both would adore me. I'd have a boyfriend with whom I was madly in love. It seemed like the ultimate age to me. But instead of all that, I got sick.
The pain lasted through the summer, but I stayed hopeful. Then I started eleventh grade. On the first day, as the stress from a chaotic new school year hit me, I became very, very sick. The pain I had been suffering in my hips and knee expanded out across my torso and down my legs. That night, I couldn't sleep from the pain. I could only cry. And it didn't get better. To the contrary, through the week, the pain spread, up my face, through my fingers, into my chest.
It terrified me. This wasn't reactive arthritis. And if it was real arthritis, I might have to stop doing the things I loved: cello, even school--there was no way I could be a normal teenager at all with such a disabling condition.
But my symptoms were only getting worse. I hurt all over, all the time. I felt distant from everyone else. I was too tired to move. As a natural result, I was really emotional. That was the hardest part. No one understood how much pain and stress I was under. They thought I was freaking out for no good reason. But it was all I could do to make it through the day.
My doctor started what would end up being a half a year of blood tests and x-rays and potential diagnoses. In all honesty, I was lucky. The average fibromyalgic spends something like seven years trying to get diagnosed. Still, it was difficult waiting for the results to come back only to find nothing--I didn't have arthritis, after all, or any other autoimmune issue. My bones looked fine. We ruled out leukemia and Lyme's disease.
Meanwhile, the weather was getting colder, and, as it turned out, I was now extremely sensitive to that. The closer we got to winter, the worse my symptoms got. I felt like the cold cut me to the bone. I was having to go to bed at nine every night. I never had a moment without pain--and the kinds of pain! Truly, you don't understand how many kinds of pain there are until you've had a condition like this. The pain is everywhere and in all kinds of ways and at all kinds of levels. And, between the pain and the fatigue, my brain wasn't working right either. I became confused and lost much more easily than I ever had before. I kept forgetting things. It felt like I was like standing in a glass box: I couldn't quite reach out, no one else could quite get in, and in the meanwhile, I was suffering.
Negative result after negative result. My thyroid was fine. My heart was fine. Everything was fine. Except for, it clearly wasn't.
Finally, I chose to look at something my doctor had mentioned but passed by, because I told her at the time that my pain was only in my joints: this weird, scary word, "fibromyalgia." By now, it was clear that the pain wasn't just in my joints. I hurt in places with no joints, like my ribs or the middle of my shin.
As I researched fibromyalgia symptoms, things started to, horrifyingly, amazingly, click. Pain for more than six months, all over the body. Fatigue for more than six months. Sensitivity to cold. Digestive issues. Confusion. Emotional issues. Clumsiness. All of that, and no positive test results to show any physical damage.
I went to my doctor again, with a long document examining my symptoms and my experience so far. I was terrified that I was wrong. I was terrified that I was right. My doctor read it over, said, "Okay," and started the official diagnostic test used for fibromyalgia at the time.
Often in fibromyalgia, there are 18 "tender points," quarter-sized areas in specific places of the body, which hurt with only the slightest application of pressure. At the time of my diagnosis, you had to have 11 of these to be diagnosed, along with an appropriate combination of other symptoms. (Nowadays, diagnosis requires a specific combination of symptoms but no tender point test.) In the end, I had 15 of the tender points as well as all the necessary symptoms.
I had fibromyalgia.
(In addition, I was diagnosed with mixed irritable bowel syndrome, or IBS-M, which commonly co-occurs with fibromyalgia.)
It's hard to explain the mix of feelings that came with my diagnosis. At first, I was ecstatic, because finally I had a real answer, something I could tell people to explain my problem. But then came the shock and grief, leaving me a confused mess of laughter and tears that my mom found quite alarming.
Fibromyalgia has no cure. All you can do is manage the symptoms, and it's an incredibly complex process. To this day, no one really understands the disorder, although it's clear that the entire nervous system of a fibromyalgic is overactive due, at least in part, to a strange combination of chemical imbalances. 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. Pain is more pain. Even for those of us who are able to manage the disorder, an incredible amount of sacrifice is required. You have to prioritize everything you do and figure out, for you, what the cost of those actions are--and then sacrifice as many of the lesser priorities as is necessary for you to be able to keep doing the top ones on a regular basis.
Grieving isn't just for the death of a loved one. It's also for the death of possibility, and for the next few months, it felt like every possibility had died. Every day, I'd think of ten more things I'd never be able to do. Ski. Give birth. Play basketball. Rock climb. Ride a bike. Yes, maybe I could do those things once in a while if I was willing to cope with the cost, sacrificing everything else while I recover afterwards--but to me, that's too high of a cost to pay. And it wasn't just special events I was forced to give up on, either. Before I developed full-fledged fibromyalgia, I was a dancer, and I'd recently become interested in hip-hop dance. That was no longer an option. I had to limit my social engagements more than before (partly because I now needed to go to bed early in order to keep my symptoms under control). I had to be more careful about helping around the house and practicing cello. Every action I took, from then on, reduced my ability to do other important things, like school and writing and church.
Naturally, my relationships with others shifted dramatically. They say in relationships with fibromyalgics, there are three entities--the fibromyalgic, the other person, and the fibromyalgia itself. I've never been in a romantic relationship before, but I believe it. Most of the time, it feels like my body is a whole other person, weak and yet incredibly demanding, a parasite and a victim, whose needs I am constantly obligated to meet. Once I was diagnosed, I had to transition from my previous life into this one, in which I have to constantly consider my body. In which my body is constantly suffering.
The worst, and most important, question I faced was whether I was willing to deal with the added pain and exhaustion that would come from doing the things most important to me, or whether I'd rather sacrifice everything in exchange for not having to make the effort. (Either way, I was going experience my symptoms, at least to some degree--but the thought of having to do things anyway, of having to live my life, was a hard one to face. Even now, there are days where I think I'd just rather stay in bed.)
Finally, three people came, with the exact things I needed. The first was my best friend, who said the words I'd most wanted to hear: that my situation was really tough and I was really strong. Even now, what I appreciate most is when people are brave enough face up to the truth of my situation and recognize, quite simply, that it stinks. No suggestions, no false positivity, just recognition. (My friend also said she didn't know if she could live with fibromyalgia herself, but that isn't a good thing to say to disabled people. It evokes the ableist idea that those who are sick ought to die, because their lives aren't worth living. I didn't mind because I know her so well and everything else she said made me feel so much better, but PLEASE REMEMBER not to do that.) The second person who helped me was my Government teacher, when he told me that that he believed I'd eventually be able to figure out where my limits were and how to balance the things that mattered to me most. Then, in orchestra, I started crying because, in part, I didn't want to face the fact that I might be unable to play anymore, and my standpartner came over. He was the third person. He didn't say anything, he just gave me a hug. And that was enough.
After those three events, I knew that I couldn't give up. I had to do what it took to keep the things that mattered most to me, because I deserved it, because I was here, and because I was loved. That was the turning point that got me past the worst of my grieving: the moment when I decided to fight to make the best life I could with my fibromyalgia.
By the end of eleventh grade, I'd fallen into a routine I could manage, and things improved. I started forgetting what it was like to not be disabled. There were still struggles, though. One figure I saw once (though I have no idea how accurate it is) said that a third of fibromyalgics worsen over time, a third get better, and a third stay the same. I'm one of the unlucky third whose condition worsens over time. As such, when I came back senior year, twelfth grade, for registration, I realized that, despite all the lifestyle changes I'd made, I was no longer able to go to school.
So Mom let me take the leap and try a medication, namely, antidepressants, despite her major concerns about the dangers of antidepressant use in teens. They worked! Marvelously. It felt like a miracle. For the first time, I didn't feel sick. I was still tired and sore. I still had to take really good care of myself. But it was like waking up after two years of sleep and realizing I could be a part of the world again. The medication didn't have any adverse effects for me either, which is a huge bonus.
So in that way, I managed to get through high school, and now I'm in my first year of college.
It's still not easy. I'm still disabled, and I still have to take really good care of myself, and people still don't understand. But I'm stable for now. The fact is, when your body is your worst enemy, you can't do anything without first taking care of it--but you also have to be willing to make the effort to hold on to the things that matter to you most. I intend to keep doing that.
That's my story. I hope it means something to you and that it's educational, too! After all, one of the hardest parts of chronic illness is the social aspect. So few people understand. But maybe this will help you to. :)
Come back Wednesday for another post--a bit of humor to lighten things back up.
Images via krasgmu.net, Wikipedia, Leonard Smith on Pinterest, butyoudontlooksick.com, and The Huffington Post.
I'm an unpublished novelist, primarily of YA fantasy, and a freelance editor. I love psychology, cats, social justice, and love! I'm also a huge fangirl. Basically, stories are my life.
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