When you tell someone you have fibromyalgia, you may be met with a confused look. “What’s that like?” It’s actually a tough question to answer — it’s not easy describing what fibromyalgia feels like to someone who has never experienced that level of pain or the challenges that can come with it.
To help give people an idea of what fibromyalgia feels like, we asked our Mighty community to share how they would describe it to someone who hasn’t felt it. Their answers put the reality of fibromyalgia into words healthy people can hopefully understand — and empathize with.
Here’s what our community told us:
1. “Imagine the worst sickness, fatigue and pain and your head is in a deep fog where it made you think to go to the hospital. Now imagine feeling like that every day and knowing if you go to the hospital they will likely find nothing wrong and send you home and tell you to see your family doctor. That is fibromyalgia.”
2. “Imagine waking up in the morning feeling exhausted, as if you hadn’t slept in days. As you lie in bed, trying to rustle up the energy to get up and make your way to the bathroom, you wrestle with the thought: ‘Can I make it through another day?’ Then imagine that everything you do, even the smallest tasks, feels like you are walking through waist-high wet concrete.”
3. “Picture a phone. There’s something wrong with the charger. No matter how much you try to charge it it never charges past 50 percent, if you’re lucky. You close all the apps so you can to try to preserve battery, but it’s no use. It quickly drops back down to zero percent in no time. Now imagine you’ve been hit by a bus, and you are the phone.”
4. “I tell people, ‘Do you know how you feel when you have the flu? Body aches all over, everything hurts even your hair and nails? Yea, those are my good days.’”
5. “Think of the worst flu you’ve ever experienced, and pair that with falling down three flights of stairs, straight into a beehive. That’s fibromyalgia.”
6. “For me fibromyalgia is fuzzy and foggy thinking and on a bad day moving feels like I am trying to walk through thick Jell-O. Doing normal things causes pain. Total exhaustion without the benefit of restful sleep.”
7. “It’s like your body was in a car accident while you had the flu and you never quite got over either one of them.”