Here’s what the community shared with us:
1. “I feel like [I’m] constantly wading through mud. Like my brain is clogged up. My limbs are heavy and every little action requires a great deal of effort. My muscles are tired and shaky. It’s just like pushing through a bog all the time.”
2. “It’s like having the flu all the time combined with feeling like someone physically beat you up. All the while being expected to function normally.”
3. “The brain fog is like the episodes of Charlie Brown when the adults talk. All you hear is the muffled megaphone when people talk. It gets all mixed up and makes no sense in your brain. When you talk to people on the phone you can’t think of the right words, you get your sentences all mixed up and you don’t make sense. People stare at you and you know they have no idea of what you are talking about.
4. “It’s like every part of your body is bruised but [the bruises] are invisible, and sometimes you wish they were visible because then people might take your pain seriously.”
5. “It’s always wondering if anyone got the tag of that truck that keeps running you over and over and over. Day in and day out.
6. “You’re a kite being tossed about by unseen forces floating far from reality on a tether that can break at any moment.
7. “My muscles are so weak they feel as though I’m trying to walk while waist deep in tar with several cinderblocks tied to my legs and arms.”
8. “Stay awake for three days then fill your rain boots with broken glass. While wearing your broken glass rain boots, run laps while being shot with paintballs.”
9. “It’s like someone has a voodoo doll of you they just can’t leave alone.”
10. “Imagine your iPhone is broken. Every time you recharge it, it may show a full battery but in reality it’s always sitting at 30 percent. Your phone has many functions, each requiring a different amount of power. It’s up to you how you use your battery. If you stick to small activities like texting your battery will last longer. If you watch a video or play a game then you will run out quicker. If you run out of battery your phone will switch off completely and take longer to charge. Fibro is the same. Your body has a very limited supply of energy. You have to think carefully about what you do every day so you don’t run out of battery and shut down.”
11. “[Fibromyalgia is] like wearing a lead apron after pulling an all-nighter a few days after being rear-ended.”
12. “[It’s] like my skeleton is two sizes too big for the rest of me, and each bone has been twisted in place.”
13. “It’s that feeling you get when you’ve worked out too hard at the gym, but it’s all the time and all you have to do is move to get it.”
14. “Imagine the worst pain you have ever felt. Now make it 10 times more intense and across your whole body. Now imagine that feeling never goes away because there is no cure.”
15. “[It’s] like an elephant is sitting on you – you feel like you spend the whole day trying to push it off. It’s exhausting and doesn’t work!”
16. “It’s like I am a ship anchored down and all I can feel is the weight of the anchor while also feeling severe burns, stabbing, electric shocks and like I’ve been beaten and run over [by] a bus throughout my body.”
17. “It’s like you are always on spring break – you’re tired, you’re hungover, you haven’t drunk enough water, your body hurts everywhere and you’re nauseated all the time; and you keep getting older and less able to deal with the symptoms.”
18. “It is like being on a merry-go-round. You spin around and around, dizzy, aching from holding onto the horse for so long, gut clenched painfully, headache looming, and you can’t remember the word for stop!”
19. “It’s like wearing an X-ray lead apron all the time while having the flu and a sunburn all over. Every once in a while, someone comes up and pours hot water over you, or sticks you with pins. You’re tired all the time, but when you lay down to sleep you cannot get comfortable, and you don’t sleep well (or for long). And this repeats like ‘Groundhog Day’ every day.”
20. “It’s like riding the world’s best, scariest, loopy, full of all kinds of twist and turns rollercoaster over and over again without having to actually get on it.
21. “Having fibromyalgia is like a balance beam. If you have too much rest for your left hand, you will fall off from lack of activity. If you have too much activity in your right hand, you will fall off the other side. You have to find the balance or you will fall off, and it’s really difficult to get back up.
22. “[It’s] like waking up with the flu every day, but it never runs its course. And you have to live with it forever, and pretend it’s not there.”