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What I Mean When I Say I'm Having a Fibro Flare-Up

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Fibromyalgia is often described as an invisible illness.

For many of us it’s not actually that invisible to anyone who’s paying

I always wind up telling my coworkers and anyone else I see regularly in person about my fibro. Otherwise, there are a ton of questions on days when I’m hobbling around the office, obviously favoring one arm or leg, or my brain is just not working. #thanksfibrofog

When explaining my disability I try to keep it short and sweet. “I have a chronic pain condition that’s worse sometimes than others, so if you ever see me walking funny or anything please don’t worry about it. “I’m fine and don’t need anything,” is the general script I stick to.

I’ll answer any follow-up questions they might have, but don’t belabor the point. About 90% of people don’t ask for details, which is totally fine.

Once they have the baseline explanation I can use a breezy, “Oh, I’m just having a flare-up of the fibromyalgia I told you about – no biggie!” And I keep the conversation moving. But what they don’t know  is what the two little words “flare-up,” actually mean in my life.

Last night I texted my coworker that I would be working from home today (a lovely perk for someone with a chronic pain condition!), because I’m having a major flare-up. I don’t know what she thought that meant, but I know she really has no idea of the reality.

So…what does it mean when I say I’m having a fibro flare-up?

  • I’m in pain — a whole lot of it. My skin hurts. My back hurts. There’s a ferret trying to gnaw its way out of my left shoulder blade. I can’t even pinpoint all the places that hurt because it’s basically everywhere.
  • Random muscle spasms are coursing through me, so it feels like I’m hooked up to a live electrical wire administering shocks at the most inconvenient, uncomfortable times.
  • “My stomach is upset” doesn’t even begin to describe the gastrointestinal symptoms I’m experiencing. I won’t go into graphic detail, but trust me, it’s not pretty.
  • No thoughts; can’t brain. #thanksagainfibrofog
  • I’m beyond exhausted. I will sit at my desk dying of thirst because it’s way too taxing to walk the 25 feet to the refrigerator for a glass of water. Even sitting here feels like I’m running a marathon. I keep finding my head slumped to one shoulder because it weighs too much to hold upright.
  • I just want to crawl in a corner, wrap up in a soft blankie and sleep for 13 days.
  • If you’re nice to me I will cry. If you’re mean to me I will cry. I’m probably already crying, in fact. My emotions are a dumpster fire.
  • My hands are freezing and I can’t stop shivering. I’m also sweating; the fires of hell torment me. My body has lost all ability to regulate its temperature.
  • I know it shows in my eyes. There’s nothing I can do about that. While I appreciate your compassion, dwelling on how terrible I look isn’t going to make me feel better. I’ll probably cry again.

It’s all a very confusing mishmash of symptoms. I don’t even understand it myself and it’s impossible to communicate to anyone who hasn’t experienced it.

Also, every fibro patient has a different experience and each flare-up is its own unique hell. I can go to bed perfectly fine one night and wake up feeling like I’ve been hit by a particularly malicious truck. Conversely, I can go to bed in a world of pain and wake up feeling absolutely OK.

The unpredictability is one of the hardest parts.

Making social plans is almost impossible and my friend circle has been reduced to those I can trust to understand, if and when I have to cancel plans at the last minute, because I’m physically incapable of sitting on a bar stool for an hour while we catch up.

Will I explain all of this to the coworker I texted that I needed to work from home today because of a flare-up? Nah.

It would be really cool if she cared to ask, though. Feeling seen and understood makes everything easier.

Photo credit: fizkes/Getty Images

Originally published: July 12, 2019
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