The Chronic Fatigue Syndrome and Fibromyalgia Brain Fog Poll

[Cort]

[fright]

[/fright]Brain fog is one of the most troubling symptoms of ME/CFS and FM but the situations it can put us in have their humor as well.

This poll is inspired by Laura Chamberlain's striking and often hilarious (at least in retrospect) accounts of the brain fog she's experienced in 18 Types of Brain Fog That Have Happened to Me.

My favorite is Laura's advice regarding "Forgetting what you were talking about halfway through saying it": "Never ever go off on a tangent. You will get lost. When you go to return to what you were saying mere seconds before, you will have no idea."

Some of them include

The break in my automatic memory (aka the “what the f**k am I doing?”).

You know when you move into a new home and at first it takes you a little while to automatically open the correct cupboard when you want a glass? This is a bit like that. Except you’ve lived there for years and instead of going, “Whoops, wrong cupboard,” you stare into it like if you can just understand this cupboard, you’ll have solved the answer to life, the universe and everything. Then you shake your head, think, “What the f**k am I doing?” and try and remember what it was you were actually trying to achieve. “A glass!” You exclaim to the surprise of your cat/dog/partner/fish. Then finally open the correct cupboard.

just forgetting what you did two minutes ago.

I’ve had a few times lately when I’ve turned to my partner and said, “Did I just do *insert action*?” because something in my memory has just remembered that I intended to do said action but it appears, as if by magic, that it has already been done. The water jug is now full, the plant has wet soil, the towel I had on the sofa has been put away (or possibly in the dining room, see above) but I have zero memory of doing so. It’s almost as if a little fairy came along and read my mind and did it for me

“Yes,” he replies. “You literally just did that.”

• Read more of Laura's hilarious blog here

And tell us what kinds of brain fog you've experienced.

 

[Lissa]

My favorite is inserting completely improbable words so what I was trying to say is nearly incomprehensible.

In some oddball conversation, I couldn't "find" the word "confessional", and in my extended bout of frustration I said, "you know, the little Catholic hotdog stand!"

My husband and I have been writing these phrases down because they really are pretty funny.

 

[Lissa]

"Nunk nunk, widge widge" is another brain fog quote. For any of you Monty Python fans....

 

[Upgrayedd]

Those items on the list are all things we may do or experience with brain fog, but for me, I think the issue is not what I do, but how I feel.

Brain fog makes me feel removed from my surroundings, like I'm stuck inside a movie set. It's a kind of depersonalization experience, and it can be frightening, although over time, you learn to recognize it and deal with it.

Sometimes I think I feel like I'm drunk or stoned, even though I haven't had a drink or hallucinogenic drug in years. I can go from fine and focused one minute, to head in a bubble the next. And the hypersensitivity kicks in and voices in a restaurant or other public place can overwhelm my senses.

Forgetting where I put my keys, or fumbling a few words isn't brain for me; brain fog is when my brain short circuits and I feel like I'm detached and lost in a world of strangers...

 

[Cort]

Those items on the list are all things we may do or experience with brain fog, but for me, I think the issue is not what I do, but how I feel.

Brain fog makes me feel removed from my surroundings, like I'm stuck inside a movie set. It's a kind of depersonalization experience, and it can be frightening, although over time, you learn to recognize it and deal with it.

Sometimes I think I feel like I'm drunk or stoned, even though I haven't had a drink or hallucinogenic drug in years. I can go from fine and focused one minute, to head in a bubble the next. And the hypersensitivity kicks in and voices in a restaurant or other public place can overwhelm my senses.

Forgetting where I put my keys, or fumbling a few words isn't brain for me; brain fog is when my brain short circuits and I feel like I'm detached and lost in a world of strangers...

I recognize the inability to kind of touch the world or be involved in the world - which is where the richness in life really lies...

 

[bobby]

wow that was depressing! I ticked off pretty much every box in that list... except for the one about not being able to find your way back home, cause I never leave the house

seriously though, brainfog is a horrible thing. it hasn't left me for a single second since I got sick. I'd say it's one of my most debilitating symptoms.

 

[Veet]

@Lissa thank you!

 

[sharonklb]

I ticked them all!
I can be told something and then immediately have to ask the question again
I sort things into what i think are easily found places...and then spend hours/days looking for the easy to find items
Noise intolerance spaces me out completely...it is like entering into an old psychedelic movie...i get completely disorientated
Word finding is a daily occurence...as is looking blank when i am informed that people have told me about certain events....and the list goes on and on

 

[Cort]

I ticked them all!
I can be told something and then immediately have to ask the question again
I sort things into what i think are easily found places...and then spend hours/days looking for the easy to find items
Noise intolerance spaces me out completely...it is like entering into an old psychedelic movie...i get completely disorientated
Word finding is a daily occurence...as is looking blank when i am informed that people have told me about certain events....and the list goes on and on

Well you should win some sort of prize - not the kind that anyone would want of course. That's pretty rough.

Check out this blog - http://www.healthrising.org/blog/2016/07/25/chronic-fatigue-syndrome-brain-under-functioning/ - for reasons why you and other people are having so much trouble.

 

[sharonklb]

Well you should win some sort of prize - not the kind that anyone would want of course. That's pretty rough.

Check out this blog - http://www.healthrising.org/blog/2016/07/25/chronic-fatigue-syndrome-brain-under-functioning/ - for reasons why you and other people are having so much trouble.

Thanks Cort, i looked at that and in some ways, after being told by most health care professionals in the UK, that i am just suffering from stress...including a neuro psychiatrist, it is a relief that i am not going bat shit crazy....it makes sense that we are wired in a different way now! I got a little bit giddy and thought maybe the Lancet may have caught up a little bit with the US etc, until you read they are so far behind still.
There seems to be no empathy at all...i have actually asked them how they would feel, if their lives could not be governed by any routine, not knowing what the next day is going to be like and how they would feel if they were so fatigued, they fall asleep in public places and then lose their way when going on a famailiar route....strangely, silence prevailed!

 

[Cort]

Thanks Cort, i looked at that and in some ways, after being told by most health care professionals in the UK, that i am just suffering from stress...including a neuro psychiatrist, it is a relief that i am not going bat shit crazy....it makes sense that we are wired in a different way now! I got a little bit giddy and thought maybe the Lancet may have caught up a little bit with the US etc, until you read they are so far behind still.
There seems to be no empathy at all...i have actually asked them how they would feel, if their lives could not be governed by any routine, not knowing what the next day is going to be like and how they would feel if they were so fatigued, they fall asleep in public places and then lose their way when going on a famailiar route....strangely, silence prevailed!

Don't worry about Lancet. They have a history of publishing mostly CBT type stuff on ME/CFS and they are going to be the last straw to fall. Ultimately they're going to look behind the times and out of date. Other journals will come to the fore...There are plenty of other journals out there.

 

[Sarah R.]

I would tell you, but I can't remember....

 

[Justarose123]

I've always had learning disabilities from a young age. ADD was extreme along with Dyslexia but I often had a really hard time recognizing faces, and if I did I couldn't put a name to them. It was so embarrassing.

All my life I would head to the store and forget where I was going? Went to appointments on wrong days or right day wrong time.

This has always effected my self esteem but yet somehow I managed to do well in life after my late 20's....I still had the same disabilities as most of my family but I actually became a secretary "how ironic" is that. I learned to laugh at my mistakes and play them off as cute, but when I was in the car accident that started my disability .things became so much worse. 1-because of sleep disorder caused from horrible pain...(whiplash) that kept spreading (CMT -neurological genetic defect) I was diagnosed with Fibromyalgia but I'm more inclined to think it's a combination or symptom of other disorders /Defects.

Now it's been 11 years later and I forget what I'm saying in a middle of saying it. I was basically asked to step down in 2006 a yr after car accident ...because of memory defects. I feel like I'm getting Alzheimer's , it's effecting my ability to socialize. I see my family rolling thier eyes when it happens which is a lot. Even on Add medicine which helps incredibly I still do it. I know I had a undiagnosed concussion from the accident and it wasn't my first one...so I wonder if this is part of it too.

All I knowbis I go on this site almost daily and find a promising treatment or news each time but it never seems to lead anywhere. I read it's because there's not enough volunteers for the study's but then I've been rejected for every study I've applied for...the guidelines for them are so strict! Where are you going to find someone with these illnesses not on any medicines? Let's be real? And because these deseases or conditions are left untreated I've grown many more co existant illnesses? Which makes me unqualified again.

I went though Epigenetics for the blood test for Fibromyalgia and can't find any of my paperwork to have blood work done. I feel like I can no longer be responsible for taking care of myself. I'm ashamed of what I've become. Because I'm just a shell of who I once was. A witty, engaging, intelligent woman....who can't remember how to follow though with anything anymore.

My daughter was once diagnosed as mildly retarded because of her learning disabilitys when young.she has been able to improve herself with age like me but now I feel like I'm mildly or severely mentally handicapped. I have hypopituitism, peri neurothaphy, CMT, Serious sleep disorder with narcoleptic symptoms. Chronic fatigue. Pain but it's in remission, except back and arthritis which is nothing compared to nerve pain. I have been possible diagnosed as Als which runs in family, and would explain bowel and orgasmic problems suddenly appearing.

And I can't see specialists with out dr's referral and with Medicare/Medicaid I can't find primary doctor in RI....in my own opinion Besides known genetic causes I think sleep disorder is number 1 cause to brain lack of function.

 

[HardBoiledBlonde]

My favorite is inserting completely improbable words so what I was trying to say is nearly incomprehensible.

In some oddball conversation, I couldn't "find" the word "confessional", and in my extended bout of frustration I said, "you know, the little Catholic hotdog stand!"

My husband and I have been writing these phrases down because they really are pretty funny.

Excellent positive reframing - finding the humor in a situation!

 

[IrisRV]

My favorite is inserting completely improbable words so what I was trying to say is nearly incomprehensible.

In some oddball conversation, I couldn't "find" the word "confessional", and in my extended bout of frustration I said, "you know, the little Catholic hotdog stand!"

My husband and I have been writing these phrases down because they really are pretty funny.

Excellent positive reframing - finding the humor in a situation!

My daughter (she also has ME) and I used to have conversations in that manner all the time. It got so we didn't even notice we were doing it some of the time. When we did notice, we had to laugh about it, because they really were funny conversations. The other choice is to cry. We decided that we preferred to laugh.

One day we were watching Olympic ice skating...
"Oh! I like that one!"
"Which one?"
"The... the... the going up one."
"Jumps?"
"No... no.... He does it."
"Oh, like he's holding her and she goes in the air?"
"Yeah, that one! What's it called?"
"....... I dunno."
"Me neither..... Oh well, I like them"
"Me, too"

Then 10 minutes later we will have a perfectly normal discussion about jumps, throws, and lifts using all the right words. Weird how word-finding would come and go.

Another day...
"Would you pass me that... that... thing?"
"Which thing?"
".... sigh... The one.. the one you eat with"
"This?" [holding up a spoon]
".... No, not the roundy one. The pokey one."
"This one?" [Holding up knife]
"No, the other one. The one with a bunch of pokey things."
"The fork?"
"Yeah! That's it! The fork!"

It makes this miserable disease better (if such a thing is possible) if you can laugh about some of the craziness. Again, you have to laugh or you cry.

Ask me sometime to tell you the story of when my daughter and I found ourselves (yes, both of us) lying on the cold bathroom floor in the middle of the night.

 

[Lissa]

My daughter (she also has ME) and I used to have conversations in that manner all the time. It got so we didn't even notice we were doing it some of the time. When we did notice, we had to laugh about it, because they really were funny conversations. The other choice is to cry. We decided that we preferred to laugh.

One day we were watching Olympic ice skating...
"Oh! I like that one!"
"Which one?"
"The... the... the going up one."
"Jumps?"
"No... no.... He does it."
"Oh, like he's holding her and she goes in the air?"
"Yeah, that one! What's it called?"
"....... I dunno."
"Me neither..... Oh well, I like them"
"Me, too"

Then 10 minutes later we will have a perfectly normal discussion about jumps, throws, and lifts using all the right words. Weird how word-finding would come and go.

Another day...
"Would you pass me that... that... thing?"
"Which thing?"
".... sigh... The one.. the one you eat with"
"This?" [holding up a spoon]
".... No, not the roundy one. The pokey one."
"This one?" [Holding up knife]
"No, the other one. The one with a bunch of pokey things."
"The fork?"
"Yeah! That's it! The fork!"

It makes this miserable disease better (if such a thing is possible) if you can laugh about some of the craziness. Again, you have to laugh or you cry.

Ask me sometime to tell you the story of when my daughter and I found ourselves (yes, both of us) lying on the cold bathroom floor in the middle of the night.

HA!!! That conversation sounds oh so familiar! My husband has learned to speak my language... and now that he's gotten sick too, he's had the same thing happen with words. We are quite the pair, as are you and your daughter! (Dare I ask about the bathroom floor in the night?)

Can I just say that its beyond frustrating when people say -- "oh I forget words all the time -- you're just getting old!" I was only in my early 40's when this started.... there is no way this neurological symptom is NORMAL. It makes you just want to smack people, doesn't it?!

Oh and I'd also add -- the other day I was in a store and the clerk started pelting me with questions. Before I knew it my eyes glazed over and my brain was toast. I couldn't remember my zip code! (I hate when they ask that... I just want to buy my stuff and get out ASAP!)

All that came to mind was my childhood zip which was from a whole 'nother state. She had to coach me into the right one by starting with the first couple common digits. And even then it took a minute and I had to confess I was struggling. Which of course -- politely so --- she countered with "We all do that these days", covering for the fact that I was probably like 15 years younger!