25 Things People Without Fibromyalgia Should Know About People With Fibromyalgia

By:Puja Rios

“Me vs. Fibromyalgia” is a biweekly, one-of-a-kind series designed to give readers and warriors affected by Fibromyalgia a comprehensive look into the facts of the disease and the story of a driven, high-achieving business woman who wouldn’t take no for an answer. I’ve chronicled eight years of experience with Fibro including chronic pain and fatigue, low energy, doctor, relationships and more, and hope to offer answers and support to those who seek them.

To honor National Fibromyalgia Awareness Day, I’ve been thinking about what aspects of the condition I could bring awareness to. What don’t people already know? The reality of Fibromyalgia is not only that people don’t know much about it unless they have it, but there are many who don’t even believe the condition is real.

In this bonus edition of the Me vs. Fibromyalgia series, I’ll be taking my cue from the National Fibromyalgia & Chronic Pain Association’s theme this year, “Your Voice Matters.” I’m using this platform to voice a few opinions that are rarely spoken but need to be said.

It’s fake. It’s invisible. It’s a B.S. excuse for being lazy.

Imagine your body is on fire. Imagine every time you take a step, it feels like the ground beneath you is littered with Legos. LEGOS people! Imagine if the mere act of walking from your car to your desk caused such exhaustion, you could sleep for a day. Sounds pretty terrible, right?

Now add in that there’s no way to prove what you are feeling is real. Every single test has come back negative. (And you’ve taken hundreds of tests.) Imagine that amid the fatigue, chronic pain and hypersensitivity, as you try to convince yourself to press on, you overhear people talking about how they are “over your Fibro” and how much you complain about your pain. Imagine hearing that all of your suffering is something you made up in your head.

If you know someone with Fibro and want to understand them better, here are 25 Things People Without Fibromyalgia Should Know About People With Fibromyalgia. Are you a Fibro warrior? Share this post to spread awareness and understanding.

1. Give gentle hugs please — my skin hurts.

• I can sleep all day and still feel like I just ran a marathon.

• When i’m tired, let me sleep.

• If i cancel my plans with you, don’t be mad — I already feel bad.

• If I went out last night, I need a day to recover — its okay, it was worth it.

• When I’m in a flare, leave me alone in a dark room (but check in). It makes me feel good.

• Every morning is a tough morning.

• Your friend with Fibro who that has no pain doesn’t make me feel any better.

• “You should exercise.” My work day is my exercise.

• Certain foods make me flare up, i.e., peppers of any kind, sugar, caffeine.

• Yes, diet matters, but in flare mode, all bets are off.

• Because of Fibro, I get to spend more time with my husband.

• Bright lights, loud noise and too many smells overload my senses and make me nauseous.

• My day, week and month are carefully planned to accommodate my Fibro.

• Yes, my face is swollen. No, I didn’t gain 5 pounds overnight. (I’m flared!)

• I have 3 different sizes of clothes in my closet to accommodate flare vs. non-flare days.

• I play hide and go seek with the elements — too cold, too rainy, too hot, too much sun.

• To you, car rides are joy rides. To me, they’re a painful roller coaster ride.

• Going to the doctor makes me mad — it’s a reminder of my condition.


• Some days it’s OK to let my Fibro win. It reminds me that this is a marathon, not a sprint.


• I can get moody, you would be too if you were in pain all the time, be patient with me.


• I can tell your mood as soon you walk in the room because my Fibro/spidey-senses are tingling.


• There are no no-pain days, but my low-pain days are my happy days.


• Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful.


• Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.

 

To become part of a community that is making a real difference, join The National Fibromyalgia Association’s facebook page here.

For a wealth of information about Fibro, here are Healthline’s “Best Fibro Blogs of 2016.”

Still to come and next up: Me vs. Fibromyalgia: Part 4 — Flare Up, Now What??

Part of my mission is to bring the Fibromyalgia Survivor community together to offer real support and encouragement to one another. You can be part of this movement by sharing your story too. What do you want people to know most about how your Fibro affects you? Tell us in the conversation below.

Disclaimer: I am not a doctor. All information presented should be regarded as friendly advice and opinions based on my own experience and research. I am not making an attempt to prescribe any medical treatment and the information contained in this blog is not intended to replace a one-on-one relationship with a doctor or qualified health practitioner.