If you have fibromyalgia, you’re likely familiar with the term “fibro fog.” But those outside of the community might not truly get what that means. Most people know what it’s like to have a word on the tip of your tongue but not be able to say it, or how it feels to walk into a room with a purpose but quickly forget what you meant to do in the first place. Fibro fog, depending on the person experiencing it, can go beyond this.
We asked members of the National Fibromyalgia Association‘s Facebook community how they would describe fibro fog to someone who doesn’t understand. After receiving more than 1,000 responses, it’s clear the experience can differ for everyone — but the frustration and fear is often shared.
Here are just some of the community’s answers:
1. “Everyone forgets words sometimes. But usually when you do you are able to give a definition or a synonym. With the fibro fog, the word is gone — completely and utterly gone. You sit and stutter, ‘The thing, you know, the thing. The thing.’ And you have no way to explain what you are saying. That’s when you can remember that you had a point at all. There are times when you are talking, and mid-sentence you forget what you were talking about. Nothing makes sense. It can creep up on you or hit you full steam out of nowhere. It’s one of the most frustrating parts of FMS for me.” — Sarah Smith Edelmaier2. “It’s called ‘fog’ for a reason. Fog can move in slowly or quickly, and without warning. Fog is very disorientating. It messes with sound perception, what and how much you see, it confuses your senses. You can lose direction and your way in fog. You may not be able to function properly, navigate well or at all until it clears. Imagine that. That feeling, and now place it in your head. In your brain.” — Angelique Figueroa
3. “Fibro fog is thinking in a manner that would equal trying to see clearly through waxed paper.” — Kayla Moen
4. “You know what you need to do, but you never get to it, not because you’re procrastinating, but because you can’t remember. You stand up and walk towards your goal, then the pain in your body overrules your thoughts, and you just can’t accomplish what you set out to do. It’s beyond the occasional forgetfulness because you can’t laugh it off. It’s not funny, it’s frustrating and demoralizing.” — Tina Blakeman
5. “Fibro fog is as if you’re getting startled awake in the middle of the night to find you’re on stage with a live audience and have to recite a song/poem/grocery list with duct tape on your mouth, and if no one can tell what you’re saying, you lose. And repeat all day.” — Cee Ruda
6. “Fibro fog is like being temporarily disoriented. You cannot connect your thoughts. They come in and are not processed properly. It’s like having a brain full of cotton.” — Jennifer Parrett Piel7. “Fibro fog is really, honestly forgetting to brush my teeth in the morning. Fibro fog is not being able to remember words that I use every day. Fibro fog is making a list of things I need at the store, driving to the store and forgetting I have a list. Fibro fog is not remembering how to turn on the car. Fibro fog is having to set alarms on my phone for every… single… thing.” — Ashley Garza
8. “For me fibro fog is being right in the middle of a conversation, and all of a sudden I stop talking, look at my husband and say, ‘What was we talking about?’ Because I can’t remember to save my life!” — Angel Moore
9. “Fibro fog is like your body is awake, but your mind is in a deep sleep. It takes forever to get something done because your concentration is not working.” — Geraldine Molloy
10. “As you can see from the many comments here, ‘fibro fog’ can vary considerably from person to person, just as the other symptoms we suffer through vary from each individual with fibromyalgia.” — Beth Stokes
11. “I know what an apple is, but to tell you that I see an apple in front of me is quite scary when the words won’t come. It is real. It isn’t fake or faked.” — Beth Wilcoxen
12. “Fibro fog is like a jigsaw puzzle floating around in your head. You know where the pieces go, but when you try putting it together, the pieces disappear.” — Violet Ali13. “Fibro fog is a blanket of mist on the mind. Your brain is no longer your own. You’re more of a visitor to a place you’ve been before, but it was a very long time ago. Thoughts, names, dates and plans are all things you should remember, but you just vaguely have this feeling you’ve forgotten to remember something.” — Stephen Miskell
14. “If I can carry on a conversation, that is a great day. If I say a sentence that doesn’t have all the right words, this is why. It’s like a fumbling football. If I say, ‘thingy,’ it’s because the words and ability to think of it is totally gone. So when disciplining or trying to tell kids what to do, I may just make noises to get their attention.” — Tara Parmenter
15. “Fibro fog is when someone asks you a question, but you have to solve complicated math in your head before you can think of the answer.” — Anje Ravenda-Sauer
16. “Fibro fog for me comes in different ways. It can be where my mind goes blank completely, and I can’t even remember what I was doing/saying and it doesn’t come back. It can be where I can see the word in my head, but it’s covered in fog and I cant quite make it out. It can be where I can’t think of words and have to describe them. It can be where I can see the word but can’t get my mouth and brain to connect and make sense of it and say it out loud.” — Jodie Sparks
17. “Fibro fog feels like being lost (lost in words or thought or action), and you can’t remember where you are, where you came from or where you’re going. It’s disorienting, confusing, lonely and scary. It’s that cloudy-head feeling like when you have a cold, but worse. You feel like a drone.” — Melissa Michaud
18. “Fibro fog is like living life underwater while trying to do your daily tasks. Everything is slower and harder to complete.” — Janna Haynes19. “Fibro fog is frightening. You have lived a lifetime being organized, remembering names, dates, appointments. You have college degrees. Yet you are reduced to being forgetful, not being able to articulate your ideas and not being able to follow a conversation. Your life is in chaos. And you feel very, very lost.” — Monica Hawkins Pflugh
20. “Finding thoughts during fibro fog is like wading through quicksand. You get sucked under and feel helpless when you can’t grasp what you were looking for.” — Whitney Flewwellin
21. “Fibro fog is like having a door between your thoughts. Sometimes the wind slams that door shut, other times it closes slowly, while most times the door remains open, allowing full thought flow process to happen. But when the door closes, it keeps you from living and being the person you are. And it hurts.” — Christine Bloomfield-Reinke
22. “The worst part of fibro fog for me is not having any creative ideas. I was a practicing artist and art teacher, and I used to come up with so many creative concepts for artwork, but now it’s always a blank canvas. My multicolored world has turned sadly grey.” — Meg Kenny
23. “Fibro fog is like a turtle trying to run in peanut butter.” — Tamela Walker
Editor’s note: Some of these responses have been edited for brevity and clarity. These responses are also based on personal experiences. Please consult a medical professional for any health questions you have.
What would you add to this list? Share with us in the comments section below.