Brain Fog & Sleeping Brains in Fibromyalgia & Chronic Fatigue Syndrome

This totally sounds like me! Just recently, I was at a Bible study and someone was reading a portion of scripture. I thought I was listening and understanding just fine until people started discussing part of the story that I had absolutely no recollection of. I looked back over what we had just read, and sure enough, it was right there in front of me. Also, I wait tables for a living and there have been several times where I’ll be asking a customer a question about their order and I realize that I have no idea what I’m saying. It’s like my mouth becomes disconnected from my brain and I truly have no clue what I’m saying. I very often have trouble in everyday conversations because I’ll be talking and then mid-sentence, my thoughts evaporate and I have no idea what I was just talking about or where I was going with the conversation. Or I just can’t make sense of what the other person is saying to me. It’s so frustrating and, sadly, it has caused a few arguments with my family. Thankfully, I’m understanding what’s going on with my head better so if I don’t understand someone in my family I just apologize and tell them it’s CFS giving me grief.

Me too!! You describe my typical problems exactly!

This is my life, too. Very embarassed, and feel like I have lost my mind…Scared.

this is my life…I am very scared about this, and feel like I am losing my mind, which in turn..makes me nervous and irratable and I don’t mean to be that way.

Same here…very scary!!!

For me, this has got to be one of the worst symptom I have with my fibromyalgia. My family and friends are understanding. My father has trouble accepting or talking about my fibro. He knows it’s real, that’s not the problem. He just seems to believe that because I am “highly intelligent” (his words), I should somehow be able to change the way my brain operates. According to his perceptions, I have some ability to overcome fibrofog by just changing the way I do things, by using only positive words, by not discussing it, or by just denying it myself. There are many reasons why I have to deal with him on a daily basis. Talk about frustrating! I have cried many times over this. Fibrobog has nothing to do with a person’s intelligence. It is what it is and it is such a horrible thing to have to deal with daily. I hate explaining, apologizing, and feeling like an idiot sometimes.

I know how you feel Michelle! I’m not a brilliant person, but I’m fairly intellectual and love to learn and to write. Now with CFS, I am much slower with both things. I’m trying to learn to accept my new limits, but it isn’t easy. Especially when I go into remission for a while, the return of my symptoms usually depresses me for a week or two. My Dad has trouble believing that anything is really wrong with me. He frequently suggests that I take some vitamins or get more exercise, which is hard to take. Especially since I desperately miss cycling.

I also understand what you all are saying and my heart grieves for you.

I was on my way to church, which is close to where I use to live. I couldn’t remember where I was or where I was going. I called my brother-in-law, who came from another side of town to transport me home, which was almost two hours away.

Second, last week I was awaken by a call. The lady asked if an ambulance needed to be called, as she could tell I was confused. I instead asked her to phone inside the home to get someone to help me. My biggest concern was; did I hurt someone while I was banked out.

I pray each day there will be a cure discovered. Until then let’s stay string in spirit and heart.

I find it so sad that so many of us are afraid. I feel at times as though I can’t corral my thoughts and like a true fog is moving through my head. We are not alone and I appreciate this venue for sharing about those problems. I do notice that mild exercise is very helpful to clearing the fog, but sometimes, it just doesn’t go away and it seems to take an eternity to get something done.

One interesting variable is that many doctors prescribe medications for fibro and ME/CFS that enhance sleep yet the cognitive difficulties remain.

Interestingly another piece of the puzzle is that qEEG studies show such patients are “thinking” using not alpha and beta waves which is the norm, but rather low theta waves (associated with meditation) and delta waves (associated with deep sleep and comas).

Source please? I’m not claiming you’re wrong. But am interested in reading what research has shown that we may be thinking with theta and delta waves. I hadn’t heard that before.

No, I’m not wrong.

The father of qEEG testing is Dr. Frank Duffy Director, Developmental Neurophysiology, Dept of Neurology, Children’s Hospital Boston and Harvard Medical School and he is doing some huge studies with ME/CFS patients per his presentation at the IACFS conference in ‘09.

As well, Dr. Charles Lapp sends all his patient to Myra Preston in Charlotte N.C. It is particularly helpful to patients who are applying for disability.

Testing is most informative when patients wired for the qEEG are then given cognitive testing such as digits backwards or other objective testing that shows both fibromyalgia patients and patients with ME/CFS have cognitive dysfunction.

Some researchers believe the use of antidepressants can mask the brainwave activity so if you take any you need to ask if it will affect your testing.

I’ve wondered if I could have narcolepsy because it feels like I could be falling asleep for brief times…or losing consciousness.

So this rings true to me.

That’s me, hoping I don’t kill someone while driving. Usually I get a little warning like literally nodding off and the jerk of head wakes me up in traffic or in front of computer at work. Like I am so tired I am easily hypnotised by roads, etc.? Sometimes a 1 hour drive takes me 2-3 hours because of all the naps I have to take in parking lots.

I can totally relate, I sometimes think I had a stroke that messed up my brain and how it works. I have been diagnosed with sleep apnea and on c-pap. I can’t understand why I am so tired all the time and like lots of others I fall asleep alot especially on the computer. I know the Fibro is an awful syndrome and I do pray one day soon they can crack this like they did with our dna.

I wanted to reply to this. I spent a year in brain fog. It was embarrassing and dangerous. I almost fell asleep driving several times. OK there was no almost. it would be a brief blank. I would fall asleep during meetings. I had to have a nap to get through the day. I don’t mean a 20 snooze but at least an hour.

I finally saw a dr. I have a vit, B deficiency. My body can not properly process or retain vit. B. I now take a shot every 2 weeks. Believe me I know when it is time for that next shot.

My brain was fuzzy. I couldn’t think. I was tired. I couldn’t concentrate. All because of one vit.

sounds about right to me, I have both CFS and fibro , and have been sleep deprived for over 20 years,which started when i started menopause. I now take a medication for the pain of fibro & sleeplessness, which helps me get more sleep, than before, . But, i still get those dah moments, usually when i am reacting to something, as i have environmental illness & MCS as well. which started in my mid 20’s, when i started with a headache from my husbands after shave, til now, when anything with smell, even natural smells like foods, grass, flowers, . It makes life very difficult, as i am sure you’s already know.

I’m highly sensitive to smells too. It causes me a lot of problems, one major one is that my husband smokes. He does it outside, but it’s not a lot of help. The smell is very nauseating. It’s hard to be close to someone who’s odor makes you sick to your stomach. Another example is my Mom’s perfume. I finally had to ask her to please not wear her perfume around me, at least sooo much of it. It was hard for me to do, to tell her in essence… Mom, I get sick when I’m around you. I didn’t want to have to say anything. But it was a real problem for me, Mom bathes in perfume.

This makes a lot of sense; that’s sure how it feels!

On a related note, are people familiar with the study: “The effects of sodium oxybate on clinical symptoms and sleep patterns in patients with fibromyalgia”? (J Rheumatol 2003 May). Fibro is associated with the sleep phenomenon of alpha intrusion and low growth hormone secretion. Sodium oxybate increases slow-wave sleep and GH secretion. Sodium oxybate is a DATE RAPE DRUG, and therefore EXTREMELY closely guarded by the FDA. Currently only approved for Narcolepsy (making it an orphan drug and wildly expensive (~$3k/mo)), it is dispensed by a national pharmacy. I was told the FDA failed to approve it for fibro (or to pursue other studies) because they don’t want it in general circulation to a larger population (and there are lots of us with fibro and cfs). This is a hugely serious drug, and I can see their concern. On the other hand, it’s been literally 20 years since I woke up and felt rested and my brain barely functions most of the time. The idea that this drug might allow a restful sleep is… well, it’s the holy grail for us, isn’t it?!

I have what I called “Brain Freezes” and “Mind Blanks”. I was in a complicated discussion and I was following (somehow, like the “rush-hour drive” mentioned above), without thoughts of my own, and somebody asks me something and I can’t think of anything. My mind is completely blank and I have trouble even acknowledging the question. This lead to some trouble for me, because nobody believed me, they thought I refused to answer on purpose.

As well, I sometimes can do nothing but stare. No thoughts, no nothing, just eyes defocused and staring. It takes a bit to focus myself, to concentrate, to do something then. My mind then feels like going through a city by car and all the roads are congested, everything is slow, I have to choose different routes, drive through unknown streets, and so on. I get through eventually, if I don’t give up, but I am used to the roads being free…

Tony, it’s as if you can read my mind. I have exactly the same things happening and find myself staring off into the distance, or unable to think or respond to questions. It’s worse if I’m in a situation like at a funeral or wedding or some other event with a lot of distraction and activities going on around me. I lose focus, can’t hear or speak, and feel as if I just became a mannequin or some kind of statue. It’s so embarrassing and when I can’t think of well-known words, I cringe. I used to have great verbal communication skills. Now I could cry when I think of how much I’ve lost.

I sure do relate to this, it’s me exactly! I could have typed these very symptoms, every single one. I hope they find a cure to help us.

I feel like an idiot most of the time. I go blank or can’t think of a word. A “friend” of my once said I can’t believe you have a graduate degree. Why do I remember that?

I remember only the most humiliating of those experiences. Like the time I forgot how an elevator worked. Luckily I was with a very dear friend. The empty elevator arrived and I was perplexed and asked him “how did it know to come if there’s no one inside?” (yes I was the one who had pushed the button)… also on a 1st date and I forgot that Bob was short for Robert. So when Robert told me I could call him Bob, I (humiliatingly) asked him if it was his middle name. It only lasts until I see the incredulous look on their face and then my brain catches up – but not fast enough that I can pretend it was a joke. I forget whole conversations and all kinds of things, but I’m so panicked and horrified by the worst examples, that they are ironically now etched in my memory.
Unfortunately we can’t pick what we have ‘temporary amnesia” about — I think I’d want to blank-out any memories of that so-called “friend”! What a hurtful thing to say.

I lost contact today, in fact, in the middle of conversation. Sometimes, I think it is distraction. Other times, I just seem to go out-like I am shorted out and sometimes I can’t pick back up.
Then there is the coma-type sleep. Oh, it is frightening. When I wake or come to I don’t know what is going on and I feel panic sometime. I am in relapse or something right now and I sleep 14 to 16 hours a day. Don’t know whether to eat breakfast, lunch
or dinner or just snack when I have a wakeful time.
Does anyone know about cortisol levels and stomach fat?

@ Cindy-I think we tend to remember the stuff that is most disturbing or humiliating! I know I do!
I’m not sure whether to laugh or cry reading some of this stuff, as I’ve been afraid that I was getting Alzheimer’s (my mom has dementia, and is in care). I’ve had Panic Disorder, Depression, and ADD prior to being diagnosed with Fibromyalgia, and worked in Social Services full time until 2009, when my dad died. I’ve heard that a trauma can sometimes make Fibro symptoms worse. That seems to be true for me!
I feel so overwhelmed most of the time, and it’s embarrassing to forget what I’m saying, or forget a common word that’s on the tip of my tongue, or how to do a simple task! People look at you like you’re nuts! And I always had excellent verbal and writing skills, too! Even people that know you can be so insensitive. I’ve had no income in three years, and am looking at losing the house I’m living in. I’m applying for disability, but know how long that process can be, as I helped others get it as part of my former job. I’m single, so I have no one to rely on for security. It’s very scary.

Karen,
I know how hard it is. my Father just died a couple months ago had dementia and so did his sister. So, the fibo. fog freaks me out as well. I was a Social Worker, so I can relate to that too. I just couldn’t work any more. Do you have a lawyer? I had to get a lawyer to get disability.

I found this article in-line w/ what I’ve discovered myself. By keeping a record, I’ve found there is a direct correlation between my severe brain fog episodes & sleep deprivation. I function at my best w/ 8-9 hrs of sleep nightly. Sometimes a circumstance arises that shortens my night – e.g. last weekend I had a 2 hr sleep night. I pay for short nights for days, but the immediate result is an intense brain fog & severe memory lapses which begin upon awaking & lasts all day. I ‘m unable to carry on conversations because I can’t remember words. I continually lose things & spend hrs looking for them – I look right at the item & don’t recognize it. I lose the ability to plan & think ahead. When doing repetitious work, like driving, I can space out for miles, then “come to” & wonder how I got there. My judgment is clouded – makes it difficult to decide whether to pull out in front of a car or not. I totally lose track of time, often for 30 to 60 min. Once I left to go to the store while food was cooking on the stove. I returned an hr later to find my house full of smoke, dinner ruined, & my glass stovetop bonded to the pan. Fortunately it didn’t burn our house down. I consistently have similar types of experiences whenever I have a sleepless night, so I’ve proven to myself that sleep is a major factor. I still have milder less dangerous memory lapses, brain fog etc on a daily basis.

my brain is asleep much more often than awake. I forget where im going, when/if I remember, I forget why I was going there. that is just one.example. I feel like a complete idiot all the time

I have suffered from both of these ailments…along with sleep apnea. Unfortunately I feel that I have already paid a high price for the problems associated with these disorders. I have tried many things, including medication, but I feel like the life is slowly flowing from me. No energy, constant pain, and the inability to concentrate long enough to get through the newspaper. I am glad that attention is being paid to these things because I know some people do not believe in fibro or CFS…I say, “you are truly blessed if you have none of these issues.”

My biggest problem with brain fog is when I’m grocery shopping. My husband can tell when I get overwhelmed and confused about what to do next. Sometime’s he can snap me out of it just by talking to me, but other time’s he will finish what we are doing, and I tag along like I am cluless to why we are even there. trying to come up with idea’s for meal’s while shopping is a big problem, it is overload. If I stick to a list, I can handle it so much better……most of the time.

RIGHT!! Grocery shopping is so hard now. Everything is different. Showering is more confusing. I forget to wash my hair at times. Cooking is harder, I have been burning things. I never used to have that problem. It’s hard to fry an egg without burning it. I think I’ve turned the flame down, but instead I have turned it up. With my boyfriend’s electric stove, I keep turning on the wrong burners. When I need to buy clothes, I am so overwhelmed that I just walk aimlessly around the store in a daze. I avoid doing things because I just feel like I’ll screw it up. Oh what happened to my life??? I was never this way before…

I feel like a little kid again, my boyfriend has basically had to take over the whole household because if not I might do something silly. I can’t pay the bills or do the shopping or housework because I cannot concentrate on any tasks any more. My fibro Fog keeps me in a constant daze. I wander around the house now like my 2and a half year old son. I cannot work any longer and my language skillsare so bad that when I speak most of my words get jumbled up or I repeat myself.
I feel hopeless most of the time and in pain. My mother has Fibromyalgia too but we live at different parts of the country so we both do not have any support. It is a lonely world when you have Fibro and not even your Doctors completely understand you.
At least we have this place ladies, take care. I will be sending out good thoughts for all of you,April

Brain frog makes it really hard to compose my thoughts in writing, an activity that I used to be really good at. Now, I have a hard time organizing my thoughts, and then having the concentration & energy to get them written/typed before they’re gone!

There a recall element that I noted on bad days too. I can lose entire days in my memory if I was having “one of the those days”. When a family members tries to prompt my memory with events, it is as if I am reaching into a void that never happened. It is very frustrating not only for me but for those sharing life with me (at 32).

It’s so very true! It just sound like me (I have fibromyalgia) I was worried that I might have alzheimer desease. What a relief.

Someone out there could tell me if ever experience intolerance to heat. I have a bad problem with that I once read that this is another symptom fibromyalgia.

Rita
Heat and humidity especially the later are huge triggers for me, and many of my friends. Extreme cold, of course, but humidity, ugh…immediate pain, and brain fog.

Yes, I am also having problems with any warm to hot temps. I will wake up sweating even in a cool room if I have too many clothes on. Also, when I am outside when the temps are above 75, I get so hot that my hair gets wet and I feel as if I’ve been exerting myself. It drains any energy I might have had.

Hi Rita, I have an intolerance to heat. Im in Australia so we are heading towards our winter – thank goodness.

I hate summer as I cant do very much. Not only do I “overheat” but if I spend any time out in the hot weather or in the summer sun, I either have a fibro flare or certain muscles ache for days.

Ditto with the staring-sometimes it freaks people out. One person said it was like I was staring a hole through her, but my brain was just asleep and I wasn’t even aware of the locked stare.

When the brain fog lifts for a little bit, it’s so incredible and when it returns it’s so disheartening. Forgetting the most basic things is embarrassing or people think I’m an airhead if they don’t understand it.

I totally relate to the embarrassment of having people think I’m an airhead or just stupid. I’ve been unable to work for 14 years now. Before that I was an International Project Manager at a major software company where I made my living juggling many balls at once and using written and verbal communication skills with the management team and engineers, etc. — now I am lucky if I can get a simple sentence out without loosing my train of thought (such as it is) and without stuttering (it’s like I’m never sure of what’s going to come out of my mouth). I can’t imagine my old life any more or how I managed it. Now I *am* slow-witted and terribly inarticulate. It makes me really sad that most my friends didn’t know the ‘real’ me who existed before this illness. I treasure the old friends who know I wasn’t born a moron, even if I sound like one now.

Re: grocery shopping — I am very grateful for online grocery shopping w/ delivery (Peapod.com) because I can’t physically do a shopping (in addition to the brainfog overwhelm of stores). I buy everything I can over the web. I’m mostly housebound and live alone. I can’t imagine how horrible it would be to be this disabled pre-internet. I depend on it!

I started to type my comment here when my dog barked, distracting me and I have forgotten what I wanted to say!!!

I had to leave my job as an assistant manager of a store when I could no longer remember how to do the routine paperwork, bookkeeping reports and even on some days how to work the cash register! I was not sleeping well at the time. I do have better sleep more of the time now but only if I take sleep meds.

I recently had a QEEG done, also called brain mapping,in able to start neurofeedback treatments. The Dr. commented that he was surprised I could sleep at all with my brain running at the mghz recorded.

Has anyone else tried neurofeedback for their fibro?

Yes, I had neurofeedback for 18 treatments and would do more if the money was there. I also have a friend with CFS who does this and it helps her also. It is not a cure. The woman I took treatments from has fibromyalgia and is able to work on her own schedule now but does do tune-ups periodically. It is the one treatment I would recommend to everyone dealing with the problems we all have. I am not able to work but, depending on the severity of your symptons, there could be hope there.

Thanks for the info. I have had 11 treatments and I think it is helping. The Dr. has suggested I have 5 more and then tune-ups if needed. I have recently stopped taking Cymbalta and My Dr. and I are hoping that I have improved enough from the neuro treatments that I won’t need to take an antidepressent. I have what is called antidepressent poop-out, they help for a while and then stop working. Also suffer from some pretty bad side effects from the SNRI’s which has affected my health. I have had fibro since I was 20, I’m 60 now and I think neuro has been the best treatment for me.

Neurofeedback, done with a competent neurofeedback therapist, can be very helpful for fibro. Getting the right brain frequencies to respond appropriately to various situations (slower frequencies for resting, meditation and sleep; faster frequencies for concentration, decision-making, conversations, etc) is the key. It can take a while to get the brain re-trained, but once you can do it, it can make a lot of difference in how you feel and function.

Good for you in pursuing this avenue, and best of luck!

Momentary brain freeze happened to me last week when I was taking part in a trivia contest. I missed an easy translation of two words from English into a foreign language because I know one word and automatically put in a second unrelated word. I also repeated part of the question instead of giving the correct answer, which I knew perfectly well. Anxiety + sleep deprivation = brain problems for sure.

Here’s an interesting thought: Yesterday I went with some friends to a Mexican restaurant to celebrate Cinco de Maio. I knew that most of the food on the menu was on the avoid list my doctor recently gave me after running a specialized allergy test. This was the first time I had strayed from his recommendations. Halfway through the meal, I lost all mental sharpness and concentration. It lasted several hours after the meal and will probably not clear up for a day or two. I drove home slowly and carefully and stayed in the rest of the day. This was quite different from the previous week’s momentary “brain freeze.” I am blessed to have this doctor who uses cutting edge tests and treatments and who has gotten me up off the sofa to be able to function when I am not sleeping the extended hours I need to recover from my daily activities. I know I spent years in that fuzzy-headed state wishing I could find a way to feel better. But the test is not accepted by mainstream doctors, is not covered by insurance and is very, very restrictive. So it goes…

I have had Fibromyalgia and CFS for 10 years, and definitely have had periods of brain fog–even causing a car accident once. It really does help to hear other stories of people’s experiences.

I have fibro, cfs, AND narcolepsy. Blanking out for periods of time while doing monotonous activities only to “wake up” and realize that your body kept functioning while your mind was asleep is called automatic behavior. It is common in narcolepsy. I teach first grade and would find myself reading a story only to suddenly realize that I didn’t know what I was saying. I know that sounds weird…but I’d look at the kids and they’d be looking back at me like everything I was saying made perfect sense. It is the strangest thing to feel that way. A sleep study may give you another explanation. I feel the “fog” at times too but it’s different than the complete realization that you don’t even know what you’re doing.

Lori, if you haven’t seen it already, you might be interested in the study “The effects of sodium oxybate on clinical symptoms and sleep patterns in patients with fibromyalgia”? (J Rheumatol 2003 May) which I mentioned in the 3rd comment above.

It’s hugely expensive *unless* insurance covers it. And insurance would only cover it for its FDA-approved purpose, which is Narcolepsy.

Are parts of our brains falling asleep or is it the loss of grey matter and premature aging of the brain? It is more comforting to believe that it is the former.

I can empathize with much of what Rachelle writes. It’s just beginning to reach these proportions for me-losing track in the middle of a sentence, not recognizing people I know, etc. I’ve had insomnia for 30 years and now mostly “skim” sleep. Almost always, for 30 years, I sleep from 3 or 4 to 5 and on rare nights 6 hours a night. I”m really tired! The nights I get 6 hours I feel almost normal. So I’m sure all this is related to sleep and sleep quality. I can be awakened at any time and relate all the crazy dreaming I’m doing. And I remember the wild dreams for days.

I don’t have apnea but do have the usual FM sinus problems and must get propped up in bed to sleep without post nasal throat closing up. Xyrem would be a dream come true to make me sleep soundly,but I’m afraid I would have one of those can’t breathe episodes when ny sinuses fill and not wake up. (I’ve had several hospital sleep studies and the neurologist head of university clinic tells me I only need to organize my sleep hours properly. He apparently doesn’t understand FM/sinus/poor restorative sleep .)

I’m also in the small FM population that doesn’t tolerate sleeping medication (natural or chemical) or antidepressants.

I welcome anyone’s ideas!! (Boy did I go on. Sorry.)

Kathe, OMG I can’t imagine facing the horrible sleep with no sleep meds, you poor thing! I need varying amount of meds depending on what I do each day (i.e. effort/stimulation levels) and when I get it wrong, I ’skim-sleep’ as you so accurately put it.

I’m just starting out with a sleep neurologist, and she insisted I get a “Late” sleep study (they don’t kick out out at 7am), because (due to not working and being sick) I’m on a late sleep schedule, and cutting my natural sleep time off to fit the lab’s schedule wouldn’t allow her to see my deepest sleep. I mention this because a friend who’s been going to sleep doctors for years (and also struggles with late schedules and weird sleep hours) has never found a doc who would order a late study… and they end up blaming his ’sleep hygiene’ instead of acknowledging a complex health problem and studying his actual (late morning) sleep patterns. I mention this just in case it might help.

I have allergies and sinus congestion and voluminous post nasal drip. In the last year or so I started 2 nose sprays – Fluticasone Propionate (Flonase) to clear swelling of sinus/nasal membranes, and Ipatropium Bromide (Atrovent) to stop/cut down the PND. It’s been a miracle for me, because it used to be like having a cold and having trouble breathing and now I breathe fine as long as I remember to take them. I sometimes use Benedryl to augment my sleep meds on a really bad day, and that also helps me, but I’m guessing you probably can’t take that if you can’t take sleep meds…? I hope you find something that helps!!

Rachelle–thanks for your response. I use Flonase on occasion (doesn’t it taste and smell yucky?) and nasonex every night (it’s getting quite expensive) and the neti pot after dinner every night (too close to bedtime and the sinuses/ears don’t clear enough).Maybe it’s time to change to your sprays. I really appreciate your comments about a late study. I did do a day time study for narcolepsy, but it was a disaster with too much noise in the next bedroom, and after an unusual but not unheard of sinus blocking wake up for breath one night recently, I was afraid to try for Xyrem again. After so many years of insomnia, I now don’t go to bed until I”m exhausted–between 2-3:30 am and sleep fitfully untii around 9 if I”m lucky. It’s the least traumatic insomnia I’ve had in years but not enough restorative rest.

I’m still chairing and running a lot of events and committees, but it’s getting more and more difficult with increasing brain fog..Thank you again for your supportive note.

I find the less sleep I have, the more brain fog and the faster I talk, like my brain moniter has gone to sleep. Do you fine that?

I take a Xanax at night and a 3 mg Melatonin. Usually it helps me sleep somewhat better but not always. There are some nights that I don’t sleep at all. Then my body reacts to fatigue or crashes with terrible nausea. When I’m exhausted, whether mentally or physically, it literally makes me sick. I’ve never had much luck with any antidepressents, either they don’t work or the side effects are bad.

I’ve gone blank often for as long as I’ve had CFS, for 15 years. I tried neurofeedback years ago. EEGs were taken and the therapist thought my results were very unusual. She said I was having Delta waves coming up from the back of the brain to the front when I was supposedly awake. The brain is supposed to inhibit those. I wondered if that accounted for the “potholes” of consciousness I would have, like blackouts, only minus any alcohol or drugs. One of the troubling ways these would manifest was while driving. I would come to, maybe 10 mins or even a half hour down the road, past my exit. I gather my automatic driving was okay, but I couldn’t deal with any change in the route requiring thought.

I don’t think I could have described it better. The way I explain it to people who inquire as to what it feels like, I say it’s like my brain slows down and shuts off. I also add, it’s like that moment when you wake up in the middle of the night and you can’t think or focus on what’s going on and where you are. I truly think Chronic Fatigue Syndrome is a neurological issue.

It’s very interesting to read these comments because I “see” myself in so many ways. Do very many of you have the “luxury” of sleeping 10-12 hrs. a day? If so, do others ridicule you? I find it very difficult to try to keep up with a “normal” person in a relationship ~ it’s fatiguing. I get “chastised” for not getting a lot done in a day’s time (not at work ~ I don’t work anymore). I have the fibro fog, forgetting simple words and needing help with what I’m trying to say.

It feels so good to know that I’m not alone with these issues! How wonderful it is to have other people that understand that we are not just “crazy and lazy”.

One of the things I’ve noticed about my brain fog is that it gets much worse with anxiety. So anything that that helps my fears and anxieties can also reduce some the fog.

Best wishes to you all.

I call my “brain fog” “JUNIOR MOMENTS” since I am 40 years old. The elderly call theirs “senior moments” which we totally can relate!! As we all know, “BRAIN FOG” is one of the worst symptoms of Fibro & CFS!! We need our brain to be working top notch 16 hours of the day to deal with life these days. Unfortunately, dysfunction in our brain makes everyday activities very, very difficult!! It is our computer chip and very vital to us physically, mentally, emotionally, and also financially! With it working some of the time all areas of life is very, very, complicated to manage and control!!! I, too, feel incompetent, unwise, a slow learner, and sometimes downright “stupid”, etc. Before “fibro” I had no problems with my cognition and climbing up the corporate ladder. Now I don’t even think I can handle working @ McDonald’s, Burger King, etc. I wish the CDC would speed up the research so we can finally have the 1st medication or medications to treat “Chronic Fatigue Syndrome”!!! There are medications to treat “Fibromyalgia” which mask the “real problem” and do not manage the ugly, monsterous disease…. We have other medications for other diseases why not CFS????

OMG its so nice to hear other folk with ME are haveing the same problems as me, not nice you have them though!! Ditto to all of the above except the sinus’s. I’ve had ME for over 4 yrs now not long as many of you, I was a staff nurse and competed horses so felt fairly capable but now…………I don’t see hardly anyone, my choice as I never know how I’m going to feel from one day to the next so making plans is a no no, my funniest “episode” was going to a Russian Circus and my husband wanted to buy me a russian doll, they were beautiful but I said I only wanted one and was very emphatic about it as it would be too much dusting, the lady selling them kept saying you have to buy them all, so I pointed to one behind her and said I’ll have that one, where she proceeded to open it up to 5 other dolls DOH!! I’d totally forgotten they fitted inside them selves. My way of coping is to just let it be and tell folk I can’t talk, walk out of shops no answering phones etc till I know I can manage it. I have 4 dogs and we all doss on the settee together, I just have to accept that I will muck up recording programmes, spoil the cooking, drive with a flat tyre etc, I thought I was getting Alzheimers but then have the occasional good day, when I’ve managed some decent sleep. I wish you all better days and keep praying for a solution for all of us

I have a terrible time with my memory, esp short-term, it’s just non-existent so often. My communication is getting worse, worse, worse… I would rather crawl in a hole anymore than try to talk. My husband helps me remember what I was starting to say and helps me with words that are blanked out that I can’t for the life of me get out. But when I try to talk to people I don’t know, it’s just so embarrassing as I stumble around with my dysfunctional brain. I watch people and they look at me with a baffled look as I try to talk, it sounds pretty unintelligible at times.

My husband is mostly understanding of my brain fog but at times it tries his patience, and his frustration with it tumbles out. It’s then that I… have to be patient with HIM, knowing what he has to deal with in me, it really is a 2-way street in the fog patience.

I’ve had this for 13 yrs, my fatigue and brain fog are my hardest issues to deal with. I used to feel competent and intelligent, now I’d rather hide. I’d love to find out the answer to my biggest question… Really, Really, What DID happen to my brain?? It’s hard to accept this condition, it is discouraging, even after 13 yrs. People who don’t believe in this illness… have never experienced it. No one would “choose” these struggles.

well,my terrible problem with brain fog appers during driving the car,i feel that i can’t determine the directions of the other cars drived around me,i can’t also keep my brain alert for anyone passes suddenly in front of me,i feel that i’m sleeping while my eyes are still opening but a sudden shut down of my brain occurs…if anyone recommends me a useful method to limit this terrible prblem i’ll be appreciated.

Sounds just like what I do.

About 8-9 years ago I had a sleep study (all night and all day) done to try and figure out why I couldn’t get any decent sleep. Unexpectedly the doctor discovered I had narcolepsy. This was a total surprise, but it fits. All those symptoms can be attributed to narcolepsy.

I really don’t think I had it before the car accident and fibro even though the doctor said it’s something you’re born with (I’m sure that’s what he was taught in school). I functioned just fine before.

There is so much we don’t understand about the brain. I think many things can change in the brain due to trauma or chronic stress. The brain is not stagnant as was once believed not long ago.

Interestingly it was the day part of the study that showed narcolepsy. The over night part turned up nothing.

This sounds just like what I go through frequently. It is so upsetting. . . . .however, now I am learning to make a joke of it to whoever it is I’m talking with when it happens. Common these days for me to say. . .”Whoops, Brain Fog just set in, sorry.” Luckily my friends know what I am talking about when I say this and accept that if I can I’ll finish the thought later. If I don’t they understand that too.

Note about Melatonin: Before, I NEVER felt sleepy before my bedtime drugs kicked in. My doc has had me taking 6mg melatonin at bedtime for years. Recently the sleep neurologist said to move the Melatonin to dinner or 8PM – hours before bed because it doesn’t kick in right away. When I remember to take it at the earlier time, I actually start feeling sleepy between 11-12 – a totally new sensation for me! It helps me get to sleep earlier (with all the other sleep meds of course) and I think I’m somewhat more alert in the morning. That was such a revelation for me, I wanted to pass it on for those who might benefit.

I tried SodiumOxybate and felt much more alert the next day. Anything can be abused, IMO. I would assume more innocent people are killed by drunk drivers than those hurt with prescribed Socium Oxybate….

I initiallly thought I had a form of narcolepsy. It is no surprise to me that if the brain is disrupted during so-called sleep, that sleep itself within the brain is also disordred.

Perhaps drugs used for narcolepsy like Provigil will be approved for our disorder.

I forgot that CFS/Fibro used to be called atypical MS.

I was recently diagnosed with fibromylagia and am so glad to know I’m not alone in my foggy moments. I suspect I’ve had this for about 5 years….. Of all the ’symptoms’ of fibro, this is the hardest to deal with. I just want my brain back!

This is me too! In fact, I almost forgot what I wanted to write after I hit the “leave a comment” button! I recently went for a neuropsychological evaluation due to my fibro-fog. It seems like it’s getting worse. Still waiting for the results, but maybe we can get a clue as to what’s going on. A sleep study would be helpful too I think.

Thanks for the article…and I enjoyed reading all the replies too. So informative and good food for thought.

I could relate to your story…almost completely. I went on to read all the posts here, ssing that a lot of them could relate. Thank you for the article.

Lately I have been having double vision. Im not sure if this is another part of FM or brain fog, but it is really scaring me!! I also suffer from severe migraines, and am wondering if there is a connection?? Any one having or have had double vision, please respond!

Do you take Lyrica for fibro pain? I have CFS and was on Lyrica for years until recently. During that time I have had increased vision disturbance (like neurological ‘noise’ in my vision which got worse as all my other neuro symptoms got worse). No eye docs could explain. Then I realized that possible side effect of Lyrica is Blurry Vision. I’ve been off for a month and my particular vision problem is not improved (but I think mine is more neurological than Lyrica-caused). Anyway, worth considering if any meds could be causing it.

I still believe that my Fibromyalgia and CFS were caused from the anaethesia I received during surgery I had in 1996. I have said that a part of my brain shut down during the surgery and never woke back up. Then in 2005 I had a procedure that required anaethesia to be used and the doctor was unable to complete the procedure, as he said he had given me three times the normal amount of anaethesia and I was still not out and he was afraid to give me anymore, as he was afraid I would not wake back up. He said he had never seen anything like it, before in his career as a doctor. After that failed procedure my brain was even worse. I thought I was suffering from either dementia or alzheimers, early on, but after years of research I learned of the connection to my fibro & CFS, which was a relief in one way, but still annoying. Before all of this started I was known as the human telephone book and calculator, didn’t hardly ever use either one of them, everything was in my head…but I am lucky now to remember my own phone number. My longtime friends and family know who I was before this maddening dibilitating disorder, but people who are newer acquaintances think I’m a bit loopy, I’m sure, when I space out. Thank God for a wonderful husband who is there to watch over me. I have quit driving, as I am worried about my blank times and my depth perception is totally shot, it’s okay when I bump into walls and doors when I’m walking, but I sure don’t want to run into anything when I am behind the wheel of a car. Like Tammy I experience double vision and migraines, but my migraines are not as bad as they were before I started using Ultram. That is one thing I can be thankful for, as I had sick migraines. God Bless. My prayers are with all of you all, as I know how you feel.

Ive had that over and over and I was told they were small seziures

Bless you Adrienne for this fantastically helpful and reassuring site. I can relate to all the stuff people are writing about: forgetting the thread of what I or someone else is saying, having to read things over and over to register the meaning, not recognising people and staring zombie like trying to say something and unable to speak. Of course people think you are rude, unfriendly or plain stupid. Add the physical weakness, not just “fatigue” which stops me from driving and doing anything much else. But things are much better since starting DHEA (in the morning and afternoon) plus pregnenolone for refreshing sleep and anti-anxiety. Sublingual works best. Am up to 100mg per dose but started with 25mg. Avoiding dairy has improved sinus and breathing problems as well as getting rid of the daily nagging headaches. Tyrosine and acetyl carnitine are also very useful for increased alertness as is fucoidan (seaweed extract: Fucoxanthin) which is great for clearer thinking and energy presumably by regulating blood sugar levels as it stops craving for sweets when taken on empty stomach. Hope this helps. All best.

I’m an engineer, and I’m going to lose my 3rd job in 3 years because I can’t get my symptoms under control enough to do my job properly.

I have had to work massive amounts of overtime to approach the same productivity level of my 40-50 hour work week peers because sleep does not regenerate my brain correctly anymore.
Shifts of 3pm-6am on sundays is fun.