23 People With Fibromyalgia Describe What ‘Fibro Fog’ Feels Like

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 Edelmaier

A quote from Sarah Smith Edelmaier that says, "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."

2. “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 Piel

A quote from Jennifer Parrett Piel that says, "It's like having a brain full of cotton.”

7. “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 Ali

A quote from Violet Ali that says, “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.”

13. “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 Haynes

A quote from Janna Haynes that says, “Fibro fog is like living life underwater while trying to do your daily tasks. Everything is slower and harder to complete.”

19. “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

A quote from Tamela Walker that says, “Fibro fog is like a turtle trying to run in peanut butter.”

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.


5 Daily Reminders for Finding Happiness With Chronic Illness

There are lots of articles and lists out there about what we want people who don’t face chronic illness every day to know. Here are my ideas about what I want others who do have a chronic illness to remember.

1. You can live a full, happy life. It may not look like everybody else’s life that you’re seeing, and that’s OK. Figure out what works for you and makes you happy, and reevaluate regularly. Remember (or find) activities you enjoy and do them! If you were an athlete, you may not be able to play your sport of choice at the level you once could, but maybe you can help coach a children’s team, or get involved in a fantasy league. Or try a new hobby you hadn’t considered before. I got into adult coloring books (no, not nekkid pictures — just detailed designs meant for grown-ups!) and it’s very relaxing and not physically taxing (unless my hands are cramping that day). Try something you never thought you’d do — you don’t know what you’ll find that’s super fun.

2. You are worthy of, and can find, a rewarding romantic relationship. Dating isn’t easy when you’re dealing with a chronic illness. It’s easy to believe you’ll never find someone who can accept — and love! — you the way you are. But it is possible, and you deserve it. Be open with potential romantic partners about your condition and how it affects your life.

On my first date with my now-husband of almost 10 years, I mentioned that I have fibromyalgia and it affects me every day. (He asked me to spell it. Twice.) I told him that if we dated, it would affect him too, and I left it at that. By our second date he had Googled fibromyalgia and asked intelligent questions about my symptoms, treatments and activity levels that work for me. I answered honestly and he told me he could handle it and would support me however he could for as long as we saw each other. He has never broken that promise, though I’m sure it’s been tempting at times. Like when we had Astros baseball playoff tickets and I was flaring so bad I couldn’t get out of bed, and he refused to go with someone else and showed up with Starbucks and the Sunday paper and a funny movie to spend the day with me on the sofa.

Your dating pool is by necessity limited to strongly empathetic individuals, but the good news is that those people make great partners in every way. Don’t ever settle for someone who treats you as “less than” or acts like your limitations are an imposition. Move on until you’re treated like you deserve to be.

3. You can still contribute in a meaningful way. Your energy and pain levels may dictate how much you can do at any given moment. But that doesn’t take away the fact that you bring so much to the world — you have unique talents and gifts nobody else can offer. Don’t stop sharing who you are and what you have to give just because your body isn’t cooperating.

4. People aren’t always trying to act like assholes. When you have an invisible (or visible!) illness, it can be hard to relate to those who don’t. They may not believe you’re in pain because they can’t see an injury. They may not understand how exhausting it can be to just take a shower. They may make uneducated recommendations about treatments that worked for their uncle who has an entirely unrelated condition or say you’d feel better if you only exercised more, or lost weight, or cut out gluten. But in general, I believe they mean well and they’re trying to help. Try to accept their comments in the spirit in which they’re intended and absorb the positivity they’re trying to give you. (But when you find a truly mean-spirited bully who uses your disability to deliberately hurt you, you have my blessing to give them a verbal smack-down like they’ve never seen!)

5. Don’t take yourself — or your condition — too seriously. When you’re in pain all the time or dealing with countless other unpredictable and often miserable symptoms, it’s easy to look at the challenge almost as a job — the schedule adjustments, the medications throughout the day, figuring out how many spoons you have today. If you can laugh at yourself, your condition and other people, it’s much easier to bear. “Yeah, I gotta cancel happy hour today. That darn dragon is trying to scorch its way out of my lower back again!” is much more fun (for you and your friends!) than “I’m so sorry, I’m the worst friend ever, I just can’t make it, my life sucks so bad.”

Love and light to you all, my brothers and sisters. Remember that you have a condition, but it doesn’t have to own you.

two women drinking tropical cocktails
Kittie (left) and a friend.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

When I Took Control of My Fibromyalgia Treatment

You are in control of how you deal with your pain! Yep, that’s it! It’s not complicated to write, but so hard to learn.

I took every medication and trusted the doctors when they said to up my dosage, even though it wasn’t helping. My fibromyalgia got worse and worse and we just kept adding more. I did what others said was best and didn’t listen to my body.

Then my husband told me I was worse than when I started! This broke my heart. But it got me thinking. I was in pain and not happy. Before, I was in pain but happier.

So I sat down with my doctor and told him I was stopping the medications with or without his help. He was surprised. But helped me stop them one by one until I started feeling better again. This took a year to do. It was very slow, but in the end I’m down to just one pain medication and it does help.

I learned to trust myself and take control of my treatment. Now I try only one medication at a time and set time limits with the doctor if I’m not seeing improvement.

Treatment can be what you’re comfortable with, not a commercial or what your Aunt Emma’s son’s friend did. You don’t get to control when you get a flare or what new thing will hurt next. But at least you can have a say in how you deal with these things.

Sometimes you have to think out of the box. The hardest part of living with something that will never get better or go away is learning how to keep the things you enjoy. You may have to change how you do them and when. But when you give them up entirely, you may have an even harder time getting them back. For example, you don’t have to lose a love of camping. But you may need to upgrade your air mattress and stay someplace you can get a good hot shower to ease sore muscles.

It is very easy to lose how you see yourself and to get depressed when you can’t be the person you were. You can’t get back what you had. It’s gone and your life is changed. It is not, however, over! I still need more rest and have to take pain meds. I have flares and get angry over the pain sometimes. But I’m happy again. I am finding the joy in the things I can do, not pain from the things I can’t.

Editor’s Note: This is based off an individual’s experience. Please see a doctor for medical advice.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Why I No Longer Wish for Perfect Health in My Life With Fibromyalgia

I can’t remember the last time I wished for something other than “my health.” You see, I’ve had health issues and the last thing I wanted was to have them again.

But this year, I didn’t wish for my health. This is the year I developed a chronic health condition. One minute I was fine, the next minute, I felt intense neck pain. Over the next few weeks, it spread to my whole body. My doctor had no idea what was happening. None of the doctors at the practice did.

After much persistence, I got a National Health Service (NHS) appointment with the spinal unit. Their verdict? Everything’s fine. Which was good, in some ways. In other ways, it was a bit of an “Oh. Well, what do I do now?” moment. It had been going on for three months now, so it could definitely be classified as chronic pain.

It was only when I was researching someone else’s condition that I suddenly had an idea what it was. One of my Twitter followers has fibromyalgia, and when I looked to see what this was, I suddenly had a revelation. These were my symptoms. I have not yet received a diagnosis, as NHS waiting lists are normally eight months long.

So I went on the Internet. I’m grateful to a blogger named Sam Cleasby who has posted information on living with invisible disability. I also found a lot of fibromyalgia-specific information on Julie Ryan’s website Counting My Spoons. I read so many accounts of people’s fibromyalgia experiences, such as it takes forever to diagnose and older doctors may not have heard of it.

I also read many articles on disability on this website and found these accounts to be extremely useful. The more I read, the more information I gathered about how to live with a chronic health condition. I happen to follow spoonies on Twitter anyway, so I reached out to them for advice and help. This, too, has been invaluable. As I read during one of my many chronic condition/disability research sessions, the only people who can truly understand chronic health are people who are chronically ill and disabled.

It has taken me a full year to come to terms with my situation. There have been many dark moments, and there will be many more, but like every “fibromyalgia warrior,” I’ve learned I am a strong person who is more than capable of coping with my new situation, or with any situation. I’ve learned not to feel bad if I have to spend the day just watching TV. There are some days I can do things almost like I used to, and some days I can’t.

Most importantly of all, I’ve learned that perfect health isn’t the be-all, end-all. You can live a good life with mediocre or even poor health. And that is the reason I didn’t wish for my health. I’ve learned to cope with my varied health.

I would tell others in my situation to stay strong. Doctor’s appointments are not easy to get in the U.K., so my primary support, advice and information came almost entirely from the Internet. If you have no local support, the Internet has a whole world of information. Remember to be very careful using it, though, because it’s a world of information and also a world of misinformation, too.

As us “Supernatural” fans say to each other, always keep fighting — for medical professionals to listen to you, for people to understand and to find answers or a diagnosis.

lisa wilkinson

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

36 Texts People With Fibromyalgia Would Love to Get From Their Best Friends

In the midst of a tough moment, you don’t always want to hear advice, however well-meaning. Sometimes what you need the most is your best friend saying, in so many words, “I’m here for you.” Knowing you’re cared for and supported — even if it’s through a random, middle-of-the-day, just-thinking-about-you text — can make all the difference.

We asked members of the National Fibromyalgia Association community what text messages they’d love to receive from their best friends. Their answers are so powerful — and so needed. We’ve included some of them below.

*Sign up for our Fibromyalgia Newsletter*

Here’s hoping everyone receives a text like this today, no matter what they’re going through.


“I'm spending the entire day with you doing anything you'd like to to get your mind off your pain.”
Submitted by Amy Paris


"Are you OK? I know physically you're hurt, but emotionally are you OK?”
Submitted by Samantha Emmons Popowitch


"Just wanted to let you know that even when you are a woman down for the moment, you run circles around everyone else when it comes to loving me and contributing to my life.”
Submitted by Kristen Chazaud


“No matter what you are going through, I love and care about you! I will always be your friend.”
Submitted by Deb Henderson Blanchard


“I'm bringing you some food. What would you like?”
Submitted by RoyandAlaina Douglass


“Let's do nothing together.”
Submitted by Nicole Michelle


"Hey, how are you feeling?”
Submitted by Kylie-Sky Lindsey


“Do you think I would bail if things get tough? No, it’s tough luck on your part, as I am here to stay. When you need support, I am here. And when you can no longer support yourself, I will carry you.”
Submitted by Siobhan Bernadin


“You're not alone, and you're not invisible.”
Submitted by Judith Phillips


"I'm so sorry you're hurting so bad. What do you need? Company? Peace and quiet? Booze and chick flick? Just say the word, and I'll be there!”
Submitted by Pamela List Myhree


I have a big shoulder if you need one to lean on.
Submitted by Cheri O’Dell


      “You are the Chuck Norris of fibro!”


“I know you don't feel well, and I want to do something to help you or make you happy. Tell me what you need today, and I'll do it. You don't have to do anything you don't feel up to.”
Submitted by Cheryl Lynn Gray- McCann


“I know you're in pain, but you are truly a warrior in my eyes. You struggle every day with pain, work and taking care of the house. So today I'm going to take care of the housework and dinner for you while you relax with a professional massage and a pampering day.”
Submitted by Tammy Akers


“I know you’re not OK, even when you say you are. I'm here for you to lean on when you need it most. I'll help give you the strength you need to get through this.”
Submitted by Stacie Reeves


“I would love to hug you, but that may not be possible today. I still love you and try to understand how you feel.”
Submitted by Anne Palethorpe


“I will stick with you through thick and thin. I will never leave you, no matter how bad things get for you. Your pain is not only real, but I see the devastating effects it's having on your body. Just know I love you always.”
Submitted by Donna C LeBlanc


"I'm here."
“I believe you, I believe in you. Let me help you carry your load for a while ’til you're able to again.”
Submitted by Becki Wolf Williams


“When I don’t understand, explain it. I want to know. When I don't understand what you need, tell me. I want to help. When you just need me to love you, remind me that the other stuff can wait. I love you, I’m with you and I always will be.”
Submitted by Faith Anne


"I wish I had a magic wand to make all of your pain go away.”
Submitted by Linda Groome Vincent


“I love you, I'm sorry you're not feeling well today. Is there anything I can do to make your day better?”
Submitted by Angela Worsley


“If you're hurting, please tell me. I don't know what it feels like, but I want to be here for you. I want to understand what you're going through. I'm on your side. You are not in this alone.”
Submitted by Paula Medina Park Lane


"You're doing a good job!”
Submitted by Grace Edwards


“Make room on the bed because I'm coming to sit with you, and I'm bringing coffee. I'm not going to look at your house, so don't you dare worry about cleaning anything. I just want to chat, or watch a movie, or whatever you need. I can even take the kids so you can nap if that helps.”
Submitted by Melinda Charlton Cassel


“It's not your fault you hurt and are exhausted. You're not imagining it, nor are you being lazy. Take the day off, stay in bed and read or sleep as your energy allows. Take care of yourself the same way you would take care of the person you love most in the world.”
Submitted by Harriet Levy


“I want you to know I've done some research on your condition, and although I can't possibly know what you're going through, I believe you, and I love you. We'll get through this together.”
Submitted by Sherry VerWey Sweeney


“Please let me stop by and bring you and your family dinner. I don't care what your house looks like — just lie down with your heating pad and rest. What else can I do to help?”
Submitted by Suzanne Shaft


“Honey, I know you did what you could handle today. Don't worry about dinner, I'm taking you out. How about a nice back rub when we get home? No strings attached!”
Submitted by Mary Jo Snyders Duffy


“Thinking of you.”
Submitted by Kristin Sciarappa


“Hey girl, I was just driving past the Dairy Queen, and I could just hear that Butterfinger Blizzard calling your name, so I'm bringing it to you now!”
Submitted by Sandra Wyatt-Casey


“Don't worry about meeting me out for drinks. I'm on my way with a bottle of wine and takeout. And I'm wearing my PJs, so no need to change!”
Submitted by Tamara Joy Smith


“Fibromyalgia does not define you. Do not let it think it does.”
Submitted by Kimberly Jones


“I know your needs change from flare to flare. Tell me what you need this time and I’m on my over with it.”
Submitted by Sheri Fitzgerald


You are the strongest person I know.
Submitted by Linda Warner


"You've got this, and I've got you.”
Submitted by Debi Johnson

Editor’s note: Some answers have been edited for brevity and clarity.

What’s a text message you’d love to receive from your best friend? Share your answer in the comments section below.

4 Lessons I Learned When I Began Exercising With Fibromyalgia

In my experience, one of the first things it seems doctors tell people with chronic pain/fatigue issues is, “Exercise will help!”

And as someone with fibromyalgia, I’m sure my reaction was like many: How on Earth am I supposed to exercise when I don’t have the energy to get out of bed?!

Then I tried. I gave it an honest effort. I jumped into some workout that I had been able to do several years ago, and obviously it didn’t work out so well. In fact, I ended up in one of the worst flares I’ve ever had.

So I didn’t exercise again. For five years. I figured chasing around two little kids was more than enough activity. The problem with that plan was that it wasn’t the right kind of activity, and it wasn’t doing anything to help me.

When I finally started making some changes in my life, I figured I needed to overhaul my fitness and nutrition. Being inactive and eating whatever I wanted was making me have even more pain and less energy.  My problem was that I tend to be an all-or-nothing type of person. If I was going to work out, I wanted to be perfect, get all the way through the challenge, and see results.

I am a very patient person… with other people. With myself, though? Patience and understanding are not my strong suits. If I wanted to feel better, I had to figure out some important lessons!

First, I needed to start small. I couldn’t do a push-up, make it through a 30-minute workout, or go for a three-mile walk. My starting point was around five to seven minutes of a home workout. That was the point — I felt a little challenged but didn’t pay for it horribly the next day!

My second lesson was to change my mindset. Instead of being defeated and thinking, “Man, I can’t even get through a single workout,” I had to celebrate each victory. I had to tell myself, “You’re awesome! You just pushed through something that was difficult for you! Tomorrow is another day to try again!”

My third lesson was to listen to my body. One of my favorite fitness mantras is “Stronger every day!” But when you have a chronic illness that limits you physically, sometimes you may not feel stronger every day. Sometimes you may have days when you really struggle. On those days, I gave myself a break. I still tried to do something, but if it wasn’t the same intensity as the day before, it was OK! I was learning to listen to what my body was telling me, instead of ignoring it and trying to push through. I was becoming stronger every day, but some days it was more mental toughness than physical.

ashley hay

And finally, I had to accept that I’m human and I am making choices. There will be times I choose the ice cream and sit on the couch. The important thing is to get up the next day and move — not to feel guilty for the choices I had made the day before, but to try to make better choices today.

If you are struggling right now, I encourage you to make just one better choice today. Make it a small one. And celebrate it! Then make another better choice tomorrow! Celebrate that one, too! Even little steps in the right direction can make a big difference in your quality of life.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

Follow this journey on Happiness Through the Fog.

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