Fibromyalgia: A First-Person Account

Kathryn Dillon

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“I’m in pain all the time…and if I gave into it then I’d do nothing.” — Bernard Cornwell, from The Empty Throne

My lower back muscles ache with an intensity that makes me sick to my stomach. The pain, centered there, radiates outward to the other parts of my body.

I’ve described it before as a punch in the gut combined with a stab in the back. Even my face hurts, for no apparent reason.

To raise my arms, I must combat an invisible force that seems to be pushing them downward. They feel heavy as if I am attempting to move them underwater.

My fingers are tingling and I’m afraid to lift my water glass to take a drink. I’m not convinced I’ll be able to maintain my grasp and I don’t have the energy to clean up broken glass today.

The loose clothing brushing against my overly-sensitive skin feels like tiny needles. My coordination is off — I stumble as I stand up to walk to the kitchen — and my energy levels are so low I can barely force myself to leave my chair at all.

My brain is fighting a dense fog and it’s difficult to remember something I was told five minutes ago, so I write everything down. EVERYTHING.

I’m on the verge of tears because trying to work under these circumstances is taking every minuscule bit of focus and will power I have today. But work I must.

I’m having a fibromyalgia flare-up. And yet, the world doesn’t stop turning.

According to the National Fibromyalgia & Chronic Pain Association, about 210 million people suffer from fibromyalgia worldwide, including 10 million in the United States.

While most of us likely know someone who has fibromyalgia, many people don’t realize that in addition to the chronic, widespread pain, major symptoms of the disorder include “moderate to severe fatigue, sleep disorders and disturbances and problems with cognitive functioning and memory”.

The phenomenon appropriately named “fibro fog” is all too real, and the worse the pain is, the denser the fog becomes.

Those of us with fibromyalgia may also experience anxiety, depression, sensitivity to light, sound, and smells, stiffness upon awakening, and overlapping conditions such as TMJ, IBS, and migraines.

We don’t know exactly what causes fibromyalgia, but contributing factors may include genetics, infections, or physical/emotional trauma.

The Mayo Clinic outlines a theory for why fibro sufferers experience such intense pain:

“Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain’s pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.”

Basically, my brain has betrayed me as a result of a yet-undetermined gene, or some form of trauma or psychological stress that occurred when I was essentially still a kid. Thanks, brain. Really. That’s fabulous.

Severe forms of this condition can be extremely debilitating. I consider myself fortunate that I don’t have flare-ups very often (though I’m never totally pain-free) because when I do, I see just how unbearable the symptoms can be.

Because I’m working today, I need to talk to people. I minimize this activity because I don’t want to sound like an idiot when the correct words flee my dazed mind. But I worry I’ll come across as sullen or stuck-up when I try to avoid the small talk that is near impossible in my current state.

I make up for it by pretending to be really busy, and I’ll be extra-friendly when the flare-up finally passes. Are my colleagues confused that I run so hot and cold?

I resent the fact that this condition periodically consumes days of my life and there’s not much I can do about it. I mourn the time lost both from flare-ups and from the constant vigilance (exercise, stretch, don’t get too stressed-out).

I’m frustrated that it’s such a struggle to speak or write when I’m in this much pain.

“If only I could explain how much I miss that precious moment when I was free from the shackles of chronic pain.” ― Jenni Johanna Toivonen

I was diagnosed with fibromyalgia in 1985 when I was 13 years old. I’ve been living with this condition for 35 years, so I honestly don’t remember what it was like to be consistently pain-free. I can, however, pinpoint one moment in my 20s when I briefly peered through the window into that existence.

My now-husband and I were at a large amusement park that required a lot of walking. His arthritic knee was bothering him and my fibro was starting to kick in, so we each popped a Percocet from a prescription I happened to have for a nasty burn I’d gotten at my restaurant job. I hadn’t actually taken any of the pills for that pain because it was bearable and I wanted to be able to monitor how the burn felt, without masking the symptoms.

Let’s stop and consider that for a moment. I’d managed to skip taking pain meds for a second-degree grease burn but was willing to take a pill for the fibro because it actually felt worse.

Oh my goodness.

As the meds kicked in, I looked at him, wide-eyed, and said “I think this is the first time in more than a decade that I haven’t felt any pain. ANY. It’s absolutely glorious.” He agreed.

I also didn’t experience fear. Normally hesitant about the tall coasters, I rode them repeatedly that day.

I caught a glimpse of what my life could be like without pain and without fear, two things that regularly try to drag me down and pull me under.

And you know what? It was terrifying.

I have an addictive personality. And I knew I could become hooked on that pain-free sensation. Over time, I would become tolerant to the drugs, and then I’d need larger doses, and then I’d be down in the abyss. Dependent. Doped up.

So I never took Percocet again. I don’t take any medication for the fibromyalgia except Aleve on the slightly bad days and a muscle relaxer before bed after the REALLY bad days.

I do my best to manage the symptoms through non-medicinal means such as exercise, stretching, the occasional massage, and physical therapy if it gets really bad.

“You just do it. You force yourself to get up. You force yourself to put one foot before the other and you refuse to let it get to you. You fight. You cry. Then you go about the business of living. That’s how I’ve done it. There’s no other way.” — Elizabeth Taylor

Most of the time, in my every-day existence, I don’t feel sorry for myself. Fibro doesn’t prevent me from living. Most of the time.

After several days of a flare-up, quite frankly I’m over it.

But, as Liz said, I’ll just do it. I’ll get on the treadmill for a few minutes and do some light exercise and some stretches. I’ll use the heating pad at my desk. I’ll do the best I can to get through the day. And one day soon, I’ll wake up and the flare-up will be gone.

And I’ll suddenly gloriously feel like I’m living again. Not just surviving.

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I live and write in Northeast Ohio, about everything from food to mental health, pets to relationships, music, art, and sports. My articles usually have a personal slant because I believe we as a society and as individuals grow stronger through truth-telling and connection.

Cleveland Heights, OH
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