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What’s It Like to Live with Fibromyalgia

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What Is Fibromyalgia?

For those who don’t know, fibromyalgia (FM) is a disorder that causes chronic pain, fatigue, memory issues, and heightened pain response, among other things. Not everybody has the same symptoms and could be in conjunction with other diseases. The causes for FM could be from a variety of things, such as physical trauma, emotional stress, or an accumulation of events with no single triggering point. FM symptoms can always fluctuate in degrees of severity, and can also be aggravated by outside causes. Thankfully it isn’t fatal, but there is no definite cure. Depending on its severity, it can also be chronic or episodic.

Events Leading Up to Seeking Help

Before my diagnosis, I was under the impression that my symptoms were because my diet was lacking potassium. After all, potassium deficiency symptoms are quite similar to the FM symptoms I have – numbness, fatigue, muscle cramps, and so on.

For months after that, I increased my potassium intake but nothing changed. I still had the mysterious body pains, but I was assumed it to be because I was unathletic. I blamed my fatigue on lack of sleep, which was a much better excuse than the one aforementioned. To say the least, I was definitely in denial that there might be something wrong. Little did I know, my mother was keeping tabs.

The last straw occurred in mid 2016, when I was complaining about being stupid. I was studying for this academic competition and was trying to memorise the material. I was so frustrated to the point of tears because I felt like I wasn’t smart enough. For the life of me, I couldn’t memorise anything no matter how many hours of work I put in. That’s when my mom put her foot down and said something was not normal and ordered me to see a doctor.

Diagnosis Journey

We first had to get a referral from a physician to see a specialist. The most worrying symptoms were the body pains and memory loss, which involved the nervous system and the brain. Thus, I was referred to a neurologist. During the consultation, I was first advised to do a blood test, nerve conduction velocity (NCV) test, and electromyography (EMG) test to try and determine what was causing the pain. Once that was done, we moved on to find the cause of my memory issues. Everything came out fine. For the first time in my life I had a perfect score on something, but I was absolutely crushed.

I felt like an imposter and a liar. It was like my brain had taken sides: one side was a ruthless interrogator and the other was an innocent suspect. I started doubting that my physical pains were even real. I mean if it was real, it would show in the results, right? One part of me that knew it was real, and another part tried calling my bluff. Thankfully in this story, the neurologist played the good cop who believed the tearful suspect. She believed that I wasn’t faking it and referred me to a rheumatologist who officially diagnosed me with fibromyalgia.

Life with Fibromyalgia

I was in high school when I got diagnosed and as my condition was pretty moderate, there was no medication and supplements I needed. I was good to go with the occasional use of Deep Heat Rub to sooth the pain and some Panadol for the migraines. As for the cognitive issues, I just sucked it up and doubled down. What I was learning in class wasn’t easy but was still manageable. This was the tactic I’ve always used and my grades were still okay.

My friends were supportive about the whole situation, albeit some were a little confused. I didn’t explicitly tell my teachers because I didn’t think there was a need to. I was such a master in disguise and things weren’t so bad that most of the people I told forgot about it and my high school career ended decently unscathed. I even had the audacity to think, “Hey, maybe this isn’t so bad.”

Sh*t hit the fan when I went to college. During my first and most of second year, my typical FM symptoms got worse but nothing I couldn’t handle. I never told any of my professors or most of my friends, and there was never a reason to. It was at the end of my second year where things turned from bad to worse. Stress was at its peak at that time, and I neglected taking care of myself.

Consequently, my body pain became more frequent, more painful, and lasted longer; my brain fog got so bad there were days where I forgot to brush my teeth; migraines were basically the norm; I was so fatigued no matter how long I slept. I also gained new symptoms such as dry and blurry eyes, nonrestorative sleep and sleep deprivation, and an attention span shorter than a Vine. Things weren’t going well, and I needed help.

So that’s what I did. When I transferred to my current university, I got the required documents needed for exam accommodations. Furthermore, I started taking some OTC medication and built some healthier lifestyle habits. I started being more forgiving to myself too and I cut myself some slack if I don’t achieve everything I planned. Although my FM is at its worst right now, I’m actively taking steps to be less affected.

Final Thoughts

Personally, having fibromyalgia has not profoundly changed me yet. I suppose it taught me that health should always be a priority. There’s still a long way for me to go though, as I need to learn to be more transparent and to seek help. But as for now, there are no final thoughts to say since it’s still an ongoing journey. As a disclaimer, this is my own experience living with fibromyalgia. Not everybody with FM goes through the same things I did, and I acknowledge that I am incredibly lucky to have people who supported me and medical professionals who believed me. With that said, I do hope that this article helps bring awareness to FM and give insight to how it might impact someone’s life. 

Daphne Chen

UWindsor '23

Daphne is majoring in International Relations and Development Studies with an Economics minor in UWindsor. Her hobbies include painting, reading, writing, and learning about niche topics among other things. She hopes to one day be able to make a small difference in this world, but she doesn’t know when, what, and how.
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