How to describe “Fibro fog” to Someone Who doesn’t understand

Fibro fog? It is a feeling that you are in a daze, can not remember the simplest things. You have memory loss and may not be able to speak the words you want to say. You have trouble concentrating, may forget small details and even plans you had made. You may have a feeling of confusion, like you just can not grasp what is being said to you. You have decreased concentration and even a lack of alertness and energy. It can be frustrating and even depressing. It is one of the main difficulties we face on a daily basis. It can range from mild issues, like forgetting the word “hairbrush” to severe, like the feeling of confusion as to why you are in the room in the first place.

Where did I leave my keys? Why did I walk in this room? What is that word? I forgot your birthday? I forget when that is….. We all have experienced these questions, at least once. On some days, this seems to be all we end up doing! It definetly seems there are days that we are asking ourselves many questions and walking around in a fog.

So, We have asked a question How would you describe “fibro fog” to someone who doesn’t understand? to our community “Living with Fibromyalgia and Chronic Illness”. More than 500 People have share their thoughts with us.

Here is what community shares with us:

1. Holly Blickensderfer Stringer Knowing what you want or want to say but not being able to make your mouth say it, the words just slip away….sometimes it’s like you see it then it’s gone. Everyone has that ‘it’s on the tip of my tongue’ moment sometimes but fibrofog happens a LOT more often, especially under stress. Ailsa Harper added to it I call that the ” slippery lil’ sucker ” stage. It’s like trying to hang onto to a live wet fish… the word is there, then it’s…. it’s just gone!

2. Julie Johnson : Fibro fog is kind of like an endless game of “Heads up” and/or guessing games where you are trying to constantly figure out or remember what you were just going to do using simple clues like 1. I opened the refrigerator door I must need something from in here. Or another time you might have your phone in hand and cannot remember who you were gonna call. Or those times you just sit and stare at your kid and think-ya, he looks like an Andy, that’s gotta be his name.

My favorite is when I try to describe things to my husband-like “you know that guy with the girl with the hair that gets in the car and they drive a long way to that cabin and it snowed so they had to stay there a long time and fell in love. His answer: any move on Hallmark. Going to the clinic help desk “I know I am supposed to be here but I can’t remember why-can you help me?” Starting out every conversation with a disclaimer-I’m sorry, I may not remember your name, I may not remember what we are talking about, I may forget mid sentence what I was saying, I may forget something I’m saying or doing and not be able to move forward on anything else until I remember it and if I can move forward don’t be surprised if I suddenly blurt out later in the day-the word or sentence I forgot.

I also inform everyone that anything I agree to, say I will do with them or for them-is likely out of my head within seconds after I said it so it is on them to consistently remind me about it and to engage my husband in the process if they want me a part of it. This isn’t about a lack of interest but a lack of brain ability. Fatigue and migraines etc just doesn’t allow my brain to work as it use to. I have lost friendships over this which means it should be easier because I have less info, dates etc to remember but that is just how poor brain fog gets.

3. Elizabeth Bennet : Its horrid .how can u remember something u forgot ? Then someone tells u and your not entirely sure if it was true or that they are playing on your forgetfulness .it makes me very uneasy and upsets my already shaken nerves .I never really know what is fa t and what is fiction

4. Trysha Danzey : Its like a dream where you can hear people talking but you can’t understand what is being said. It is having the knowledge but forgetting how to use it. It is remembering a face and forgetting the name. And then there is that squirrel. Katherine Eaton- Van Duinkerken  added that I call it my squirrel moments… I’m here then there then here … Squirrel moments lol.

5. Deb Kelly: Feels like having a stroke or dementia. Can’t think of names, words,what you were doing. Go shopping and forget where you went and how much you spent. Very frustrating,scary, and I always try to have someone with me when I leave the house to keep me straight.

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6. November Rain: It’s like sleepwalking… you don’t remember what you’ve done a few seconds ago. Like talking underwater, you think things, but can’t get it to come out your mouth the right way. Wiping the slate clean after you’ve said something, and not remembering it.. only to ask again and again.

7. Leah Cromer : It’s like being on three different kinds of cold medicine. Unable to think clearly, remember or articulate. It’s like your mind is trying to walk through waist-deep water.

8. Samantha Wright : Trying to do a task you know back to front & have done a million times it’s like Your trying to do it for the first time with no help & the instructions are in a language you don’t recognize no matter how many times you try to understand it just doesn’t make sense

9. Gail Breeze: Its like your brain shuts down for a while and your not quite sure where u are it don’t last long though

10. Tina Miles : like a hangover without the pleasure of the night out lol

11. Beth Rankin : It’s like with me someone can tell me something and 10 minutes layer I’m asking them again and they get frustrated and say I just told u that. Plus can’t get out what I’m trying to say cause I can’t remember the simplest of things.

12. Kelley Gaffney : For me the worst is losing words. I could be talking about a chair & realize I don’t know the word so I will say something like, “You know, that thing you sit in that has four legs? What the hell is it called??” Lol!
Some Fibro Fog moments can be funny, but sometimes it can be very scary stuff. But we fight on

13. Kimberly Coleman : For me it’s like thinking in slow motion. The words are in your head but you are slow to grasp them and get them out of your mouth.

14. Frieda ScruggsStabler : It’s like your brain can’t catch up with what your body’s already doing…Then the brain just shuts down and in the middle of a conversation and you can’t remember the words or what you were doing…You are constantly having to stop and regroup…It’s mentally exhausting…

15. Dee Antoinette : To me fibro fog is when your pain is too intense to even focus on the simplest tasks. It’s a lack of focus and an inability to recall things. Sometimes it’s the pain, lack of sleep, medications or all of the above that contribute to fibro fog.

16. Kristi Johnson : It’s like your conscious thought, decisions and focus is happening behind the scenes. Your brain is operating through quicksand. Easily get lost in thought or drift in conversations, memory bank is on the fritz and recall and word finding is challenging.

17. Nancy Arrington:  It’s like when you are first waking up in the morning, you need your coffee to help get awake…. You are clumsy, forgetting your in a daze. However when you drink your coffee you respond wake up start your day….Well imagine having coffee but you don’t wake up your in that daze all day long….its best you stay home in the bed…. You cannot make rational decisions…Thats the only way I know how to try to explain it….

18. Dave Campbell : I tell them its like watching a movie one day and you can watch it again the next day as if its the first time you have seen it and you cannot remember family names birthday I cannot tell you when my mother farther and brother died don’t know most parts of my life like what school I went to or where I have work. lost count of the time I have got my date of birth…. the thing I miss most is not being able to read and wight properly anymore. like yesterday I was in court trying to get my disability payments reinstated the look on there faces said it all when I was struggling to get my words out

19. Sarah Gamble Going to the kitchen to make coffee, opening the fridge for coffee and realizing the coffee grounds are on the counter next to the pot and not the fridge or drawer you just opened and then realizing what you were initially doing and feeling dumb.

20. Emily Billimore :It’s just like trying to carry water with just your hands! The memory seems to just slip from your mind like water slipping through you fingers. But sometimes you cannot even think of any words as if your grasp isn’t tight enough and you cannot hold any water at all!! It’s debilitating and makes me very anxious when I’m with people I don’t know very well

21. Michelle Wootton-Rowley My analogy I use is like reaching for something in a store, you can see it, it’s what you need but hard as you try it’s back beyond your grasp, and it’s so frustrating but it’s there staring you in the face but you have no chance of clinching it, you need others to lift you up, like prompt, formyou to see it in your hands and bring it down x

22. Kasia Bennett : Feeling of being in a thick haze all the time. It’s hard for me to remember things or recall memories or focus on anything I’m doing. Puts me in kind of a dream-like state and/or I feel like I’m just on autopilot because nothing around me in sinking in

23. Kim Dorsett : Imagine that you’re brain is a filing cabinet. All your memories vocabulary etc is stored in that cabinet but for the life of you, you can never find the right word you need! Everything is muddled up, nothing is in order. There’s a big cloud around your cabinet and even when you can find what you’re looking for it’s difficult to see it clearly!!!

24. Alice Monego Saddler : It is like a cell phone with too many apps open. The pain is taking up all of the bandwidth in your brain. You want to process other thoughts, participate, contribute; but, when you look for an outgoing channel, they are blocked.

25. Susan Hayes Smith It’s like loosing a small track in time. You know that you are in the present time but your mind can’t seem to find where you are. Almost like your mind wonders off can’t find its way back!

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26. Karianne Loscheider : Like having a computer that has been overloaded and freezes up

27. Christine Froggatt : My fibro fog got so serious that I could not sleep for more than 30 minutes. My tiredness made me cry, made me forget everything to do with online banking, payments, I wrote all my passwords down only to forget where I had written them down. I became depressed and sometimes really wished I could just lay down and sleep never to wake up again to face yet another pain day. It’s very serious for us who have to endure the pain days

28. Ailsa Harper : Like being inebriated, and despite learning to read and converse in 10 languages simple English words disappear as if I have Alzheimer’s. I have even known myself to look across the room at my kettle but not connecting how to get from looking at the kettle to actually drinking a cup of tea. Hard to believe I still have friends who say I have a brain like Einstein ( hyperbole they use too often)

When going through what I describe as Fibro fog I have to rest my head on a pillow or lay in bed to get relief from the muddy dizziness. I’m prone to deeper depression and negative thinking when Fibro fogs hit. I jokingly cal them Fibro frogs as they jump up unexpectedly and even rob my tongue of its dexterity and correct pronunciation. It turns into a slippery little sucker that makes me sound like I’m drunk. … And yes people have thought I had an ill controlled drinking habit until they get to know it’s actually my illnesses. 

All this and we still have to endure advice that this illness is all about attitude, or mind over matter and other such platitudes.

29. Cindy Lutz : Telling someone something or asking something and doing it again a minute later only to be told you just said that but you honestly didn’t remember you did. Drawing a blank when your in the middle of doing things and feeling so frustrated because you can’t remember. Scatter brain, being in a conversation with others and not even focusing or knowing what they are saying

30. Mary N. Santiago : For me, the fibro fog is worst that the pain itself, sometimes I don’t even notice it’s there until somebody says “What? Are you ok?”. I can compare it to when you take an unexpected nap out of exhaustion and you wake up disoriented, without knowing if you slept for 3 days in a row, who you are, or if you are in this world or not. 

After being so active and productive, not being able to remember easy things, getting confused easily and not having the capacity to follow my plans step by step is one of the hardest things I’ve ever experienced. It’s not a matter of forgetting a word or a thing, it’s like it disappeared from you life; like that word or thing never existed, when you just had it so vivid in your mind a few seconds before. The frustration is indescribable, there’s no way to understand that feeling unless you experience it.

31. Wendy Lattner: It’s like being in LaLa Land…..you forget who you are where you are going and what you are or should be doing. Your body moves in a trance like state after what has been or seems like hours. You can be playing a game on your phone and next thing you know the day has passed you by. Words are few or hard to come by and memory lapses are common. 
I could go on ………

32. Renee Goodwin Voodoo doll Syndrome!
As I am having a conversation, my words disappear like a magic wand was waved over my head, & the performance failed. The end.

33. Sarah Rose Betteridge Fibro fog. Is like trying to swim in a pool of setting jelly you know how to swim but its to thick to swim in but you keep putting your arms outs to push but all you get is mixed up jelly. So you are just left there feeling silly and confused.Feeling silly and confused. Because we can’t remember or muddlering up words and sentences or forgetting every thing we were going to say or going to do.it is so frustrating .

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Acknowledgment : Concept/Idea/Question Courtesy “The Mighty”