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 t1o 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.”
8. “The worst thing about this illness is you can’t [imagine it]. There are way too many symptoms that I think people get lost after you list the first 10. That’s often why people with fibro feel so isolated and turn to the online community to find people who understand it.”
9. “Sometimes when I take off my clothes and look in the mirror I expect to see bruises everywhere because my body hurts and aches so badly. Then there are times where I wish I bruised all over because then people might take my pain seriously.”1
10. “Imagine being wrapped in a burrito by a blanket made out of those massage chairs with the balls in them. Except you never know how many are going to be pressing down on you or where. Some days its like the deepest muscles in my body are getting repeatedly punched, while others it feels like my skin is raw. All the while I can’t think straight, like my oxygen is running out from being crushed under the weight and pain.”
11. “My body either feels it’s been hit by a truck or other days somebody has a voodoo doll sticking pins in and twisting them.”
12. “Pain so extreme that you feel like vomiting. It’s hard to think, eat, sleep or do ‘normal’ things. Your sensors are off. It feels like noise sounds in a cave, everything echoes. Smells bother you. Lights hurt your eyes and you feel dizzy like a carnival ride.”
13. “It’s the ‘Princess and the Pea’ syndrome… every possible sensation is heightened. Being on a bridge or near an escalator feels like an earthquake. You smell things that no one else does. And you can’t tune out things like buzzing lights.”
14. “Like getting Charlie horses in muscles you didn’t even know existed. When you go out to eat, you constantly squirm because the seat hurts your back. You’re always tired, and even a full pot of dark roast coffee won’t fix that.
15. “It’s like the day after a strenuous workout, with the stiff, sore muscles. Add a sunburn and a headache, then the flu on top of that. The fatigue feels like your blood has turned to cement in your veins.”
16. “I sometimes have severe episodes that feel how it feels when you touch a battery to your tongue when someone dared you in your younger years. It’s feeling that for a constant hour or so before pain meds kick in.