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When I Was Asked to Describe My Chronic Pain

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I have suffered from chronic fatigue syndrome for 26 years. I was sick for about a year before I received a diagnosis. About five years ago, I also developed fibromyalgia. I live my life always in pain at some level, and exhaustion is my constant companion.

A few days ago my dear mother – who, at 73 years old, runs circles around me – asked a simple question:

“Can you tell me how it hurts, where it hurts?”

Now that’s the question. For many of us who live with chronic pain conditions, describing our pain – not only the location, but the quality of the pain – is problematic. How does one describe seemingly infinite types of pain so that someone else can understand?

Years ago, when I worked as a paramedic, I asked people to describe their pain as though someone was doing something to them to cause the pain. Was that hypothetical person stabbing them, and if so, with what? A knife? A needle? Was that person pinching, poking, burning, or slicing them? Was that person standing on some part of their body? This gave us a common ground for communicating something as complex as one person’s perception of pain.

Chronic fatigue syndrome causes pain deep in my body. It’s an intense ache that gets worse with physical exertion and stress. Fibromyalgia causes nerve pain, which is a bit harder to corral. My skin often hurts, like when you’re getting the flu and have a fever. Even my hair hurts. I can’t stand anything that isn’t extremely soft touching my skin – even to the point of not wanting to lay down in my bed because more of my skin is pressing against something. At its most extreme, even air moving across my skin causes severe pain.

My muscles ache, and I feel like I have pain right down in my bones. But more interesting is the sudden, severe pains that strike in random locations throughout my body. These are the pains that change each time, not only in location, but in quality.

These sudden pains strike hard enough to make me call out and rob me of my breath. But they usually repeat only several times, then stop… for a while. These are the pains that might be stabbing (with a knife or a needle), burning, tearing, pricking, tingling, or any combination of these. On a good day I can expect this type of episode once or twice. On a bad day, a day in which my body is letting me know I did way too much, these episodes are nearly continual. I have a short break after one episode, only to grab a different part of my body, holding my breath in pain, a few moments later.

Nighttime is the worst, as my body deals with the activities of the day – even though I have cut back my activity to working a couple of hours a day from home, in a recliner, on my laptop computer. I write and edit, keeping odd hours as my foggy brain and pain level allow. I have to get ahead of the pain, remembering to take my pain medication before it becomes unbearable, even though my instinct is to put it off. Otherwise there is no catching up with it.

Can you tell me how it hurts?”

I’m grateful to those close to me who care enough to ask this difficult question. It’s not something I would want to attempt to describe to random people who are merely curious, as that simply takes too much energy.

Have you come up with a different way to describe be how it hurts? Perhaps you can share here.

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Thinkstock Image By: Hemera Technologies

Originally published: September 13, 2017
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