"Attentional Blink" & Cognitive Dysfunction in Fibromyalgia

I definitely have times where kinda zone out and miss some of the details in the middle of a conversation. One thing that gets on my daughters nerves is when she’ll say something, I’ll say huh but then repeat to her what she just said. It’s like a delay in processing what she said and the amount of time it takes to say huh is enough to catch my up, sometimes.

Traci, Thanks so much for sharing your experience. That is exactly what I do and it drives my husband crazy. I keep telling him that I couldn’t initially process what he was saying. I’m sharing your comment with him so he’ll know I’m not the only one and that it’s just another symptom of fibro. Bless you.

I had to leave my nursing career, in large part d/t cognitive decline. Having once been a reasonably intelligent person, one whom the other nurses turned to for knowledge and information, this nearly destroyed me. I’m now on Vyvanse, having officially been diagnosed with ADD. Even with the med, there’s no way my fibro-fogged brain could cope with my former job. I can’t tell you how disheartening this is.

I know how you feel, I am a retired teacher and I am trying to keep all of my faculties, but multi-tasking has become an issue!!

I’m still learning, but I know the feeling of helplessness when it comes to cognitive decline.

Because of FMS, I too had to leave a highly knowledge oriented job. i was a math teacher. My Algebra brain stayed intact but my Geometry brain just shut down. I had to take a medical leave that became a permanent retirement. I also am taking Vyvanse and still struggling. Good luck

Scarol – I am so glad you posted! I, too, have been a math teacher and am struggling not being able to retain math concepts that have been ingrained in me for 30+ years! Math is my life. Math is my passion. Math is my quiet place to destress in the midst of chaos! And now I struggle so much with it. It has really been difficult for me as I did not know anyone else that could relate. It helps me a lot for you to have validated that this is fibro related – and it is not *me*. I am sorry that you have to go through this as well. I do not wish this on anyone. Most people do NOT understand the cognitive part of fibro.

I have taken that and it did help. Hard to sleep , tho. I think the key is to keep fighting, even tho…I know it is hard.

I had just sold my business and gone back to college (in my 40’s) and got sick my last sememster. My life was ’so bright I had to wear shades’ and now I mourn every day who I used to be. I have been lucky enough to find employment that allowed me medical benefits on reduced hours, some autonomy and flexibility so I can contibute what skills I have left and feel like I am still valuable is some way. And miraculously, when that job went, I just got another similar one!! I thought I was a ‘goner’ for sure this time. There is hope out there to use what you might have left. Even in volunteer positions. Just show up when you can. Even in my deepest despair I am blessed!

Thank you so much for posting. I’m feeling inspired because of you!!!

I too had to quit working due to “fibro fog” . Even had mania episode when my mom died. It was horrible. Too many meds, but am curious to see if med would help. I also had sleep studies done and dx with narcolepsy….Never had episode that we are aware of ??? Wanted me to take Provigil, but didn’t make sense to me to take something to sleep and turnaround and take something to wake up ! Ugh ! Hang in there. Peace 1

Cheryl, I also needed to leave my nursing career due to cognitive decline. I was considered to be highly skilled and a great unit resource, but I could no longer cope with the hectic pace on the job. I was told I was a burden on my coworkers and lacked the ability to be a productive member of the RN staff on the unit. I was unable to keep up physically, as well as the cognitive and processing issues. Adderall made me more sharp and alert, but did nothing for the mental or physical fatigue. It has been such a devastating blow to my ego and self confidence. My assessment skills and degree of expertise has not changed. I am simply not “fast enough” to be considered worthy to practice.

I had to leave my nursing career, in large part d/t cognitive decline. Having once been a reasonably intelligent person, one whom the other nurses turned to for knowledge and information, this nearly destroyed me. I’m now on Vyvanse, having officially been diagnosed with ADD. Even with the med, there’s no way my fibro-fogged brain could cope with my former job. I can’t tell you how disheartening this is.

Cheryl,
The source of pride and self-esteem has been my intelligence. I have had to deal with my inability to understand and be coherent at times. I know what a loss it is to no longer be able to be the person that you once were. I can’t multi-task. I forget important things. I am still a useful person, however. It has been spiritual journey to confront my pride and loss. I used to be a therapist. This is just to let you know that you are not alone. I do know how disheartening this is.

Cheryl and Margaret,
Just to let you know, yes there are many of us attempting to come to terms with these issues. The important thing is really to feed your self esteem with the things that are the most important; people in your life who love you, all the things you probably can and do, do for others, etc. Yes, Margaret, you’re so right and thank you for the support. Cheryl, I think in time you will come to terms with your loss and replace the things you’ve lost with new things.

Been there and done that. It is frustrating. I just know exercise and to continue to learn and the meds have made my life better.

Hi Cheryl. Iam a LPN, used to do home care wish I enjoy, but like you I also gave up my position due to my difficulty remembering. Thanks God y find a job in a hospital as anesthesia tech wich is more repetitive everyday task, no pt responsability and I talk with my coworker about my condition. I been honest with her and requested her help in keep me in task, she has been very supportive. I like to joke around a lot and always tried to have a positive actitude and the willness to keep trying not matter what. Hang in there, dont give up, you will be surprise how many people are out there willing to help if you give them a chance, but you also
have to let them know how

Hi there!
I have had neurological testing over a 4 day stay in hospital to try and discover the cause of my “semi-blackouts”.
Twice I haven’t been able to sign my signature (didn’t know how) and another 2 times whilst driving my car and finding myself “lost” on the way home.
All they could say was that I do not have Epilepsy.
Thankfully just recently, I read some research that discovered those of us with FM have the capacity to shut down sections of our brain which to me makes sense considering my experiences.
I do not know how many times I shut down at home as there is no witness or event to mark it.

I have that, too. I have a wonderful husband and kids, but unless you have this…no real understanding. I am about to be 49…had this since 23 or so. It is in our family. I try to research. I am in Texas…I have a cousin from NC…my home state my age that is on disability. I just make sure I get sleep and exercise…so vital.

That’s an interestering term: “attentional blink”. It may not be a perfect description but it’s close enough. I’ve had fibromyalgia for 25 years. I’m almost 58 now. As a child, I was bright and did well in school even though the teachers thought I “daydreamed”. I often had difficulty following instructions and paying attention in school. Years later, they finally gave this a name: ADD. I’ve never specifically been on medication for this, although I am on an antidepressant to help my fibromyalgia and for a life-long problem with depression and anxiety.

As an adult, I’ve always had a problem with my attention span. I have difficulty watching TV programs with a lot of fast-paced dialogue — my brain is always in slow-motion, trying to catch up. It is good these days that you can put a program on pause, but that’s not really good enough. That’s why I’m not really into movies and prefer one-hour programs at most.

And, I know I’m losing most of you now! I can’t even read most comments this long — LOL! Happy Memorial Day!

Thank God the medical researchers are finally getting some answers for us and are finally taking us seriously. Yes, I mean that. Imagine how it was for me 25 years ago with this illness. I survived this — depression, isolation and all — and you can too! Hang in there, fibro friends! Lots of love, peace, and healing thoughts!

I don’t blank out on things, but I’ve never been able to read a text book or other books/long articles I find somewhat boring without having to read it over and over about five times. School was very time consuming, and I had to work harder than my intelligence should have let me, because my mind would just drift away. I haven’t read a book since the 1970’s! Classes and lectures, however, I loved and never had a problem with drifting off mentally.

I could have written this comment except that I am 63 years old, not 58. This is a perfect description of my life and I, too, miss being the intelligent woman I used to be. I retired earlier than I thought I ever would because I couldn’t stand the mistakes and forgetfulness anymore. I loved working and miss it but I felt that my wonderful boss didn’t deserve taking the heat for my mistakes. I am hanging in there but feel that my life has changed so much. I keep hoping that I will see a “cure” in my lifetime.

Me, too, girl,
I hate it, but have done well compared to others. I was acute when diagnosed. I never missed work …but the burning and walking on nails…it was not in my mind. I have had it as long as you. I work full-time with 3 teenagers going on 49. They are so good. I forget things. As a hygienist…I feel I still am opk, but fel my attention span is not there to learn new things. I choose to try. If I stay up all night to learn…I will. Dr. Drew the other day classified us as …or not a disease. I blew a or was furious. I have not worked so hard since 23 to have someone say it is not a disease. My son is type 1 diabetic. He does not have a disease…Cancer is not a disease. I could go on. I try to think positive. Yes, I have my down moments. Yes, I forget, and my boss gets after me…not knowing…but she is understanding. I am blessed. I wish this disease on no one.

I sure can relate to your comments about TV shows. They have to go slow and I have to get a grasp at the beginning or the whole show is out the window for me.

I used to be so detail oriented. Now the details whiz by as my brain disengages at too much information to handle. It’s very embarrassing to me. I had to quit a county govt job that I LOVED 11 yrs ago. It broke my heart, my self-worth and self-confidence went down the tubes.

My husband has to help me with simple words I can’t think of or finish my sentences when I get “stuck.” He knows my difficulties, and is usually good about it. But at times, my cognitive condition wears on him and he loses his patience. It’s not that he doesn’t understand, it’s just difficult for him to live with at times. I wish they could find a cure for this terrible problem.

The people who don’t believe in this disease… They don’t have it!! It’s a frustating condition, as some people would think we aren’t even sick.

No…my fibrofog isn’t like that. It’s not a “blink”. I can’t think…period. I can’t think through complex thoughts. I can’t think well through simple ones. I can’t multi-task. I do well to task at all! I can’t find words or whole sentences. Or, I saw things backwards like: “Would you healse pelp me” instead of “Would you please help me”. I cannot work with numbers. I’m not at all safe to drive. A crowd of any kind is overload for me. Everything and everyone around me just seems to move faster than I can think. Sometimes it comes with headaches, sometimes not. Sometimes it comes with exhaustion, sometimes not. My fog isn’t a “blink”…not even close!

My fibrofog is similar to Meshea’s, without the headaches. Finding words, working with numbers, not seeing things in front of me, having to triple check lists when shopping, not able to think straight. Fortunately it is intermittent. I am working on brain games through the Lumosity website and I am seeing an improvement in function, and confidence which is important as I had started to doubt my brain.

Like HelenSunshine, I too used brain games, of sorts. I took up free cell. At first, I nearly cried every time I sat down to it. Then I’d have a good day, and it would “click”…then bad days…but over time…like 2 years worth of time…I did improve my ability to multi-task ON GOOD DAYS.

The way I see it, the pain can be so bad you beg God to fix you or take you…but do one or the other. It can knock you off your feet, to your knees, and put you in bed…and it’s awful…undescribeably so. But the fog…the fog is humiliating. It takes you confidence…it takes trusting yourself to speak away, trusting what you see…trusting what you think…and others trusting you as well. The fog is by far the worst part for me…and I live with HORRIBLE pain…but it’s still the fog that I hate the most.

Meshea, did you write your words…. or did I? Perfect explanation of all my symptoms!! We are surely in the same boat adrift!

Well, I’m glad I “said it so well” for the both of us, but HATE that it’s how we both feel!!!!!! Blessings and Smooth Sailing!

I forgot to mention that I’ve been on Lyrica for 4 years now. I’m on the maximum dose that’s recommended for fibromyalgia (150 mg, 3 times a day). Lyrica works better for my pain that anything else I’ve tried, so I’m staying on it unless something much better comes around.

Unfortunately, this drug has worsened my fibro fog significantly. I’m no longer working — I’ve been on Social Security Disability for the past two years. I stopped working in 2006, before I started Lyrica, mainly due to my physical symptoms. Now, there’s absolutely no way I’d be able to work. I feel like an old lady — very forgetful and in a daze most of the time. No social life — my cat is my best friend. But, if I quit taking Lyrica my pain will be unbearable.

Oh, well, let me finish my lunch. Enjoy your Memorial Day!

I can relate to most all of these posts. The lyrica does make the fog worse; but i cant live w/o it. I miss being able to teach complex issues or pay attention to what iis taught for very long. My teenage son also accuses me of not listening and I constantly ask him to repeat himself. I miss having a job where intelligent thought was necessary. I hate being viewed as less intelligent by those ive just met. Humbling. My best to all of you sisters in the fight.

I was diagnosed with fibro three years ago. I am still pretty high-functioning, working a full time job and parenting two children. But I have definitely noticed what I call holes in my brain. I’ll have days where I’m in a meeting in the morning, and when I think about it in the afternoon, it’s a very vague and foggy recollection, like something from years ago. Or I’ll draw a complete blank on ever being in a particular meeting, but then see from the minutes that I was in fact present! That happens a lot. I just can’t keep as much in my brain anymore, and I seem to be having mini-blackouts where I’m present and functioning but have little to no memory of it later. I have an elaborate system of note-taking and reminders to compensate.

I can totally relate to the people who are struggling with losing their identity as a “smart” person. I do think I’ve gained a bit of wisdom over the years that helps me contribute even though the processing itself has slowed down. But I can foresee a time when I just can’t keep up anymore.

My experience is similar to other folk who have posted here… I get blanks in the middle of things and I also share the frustration & anxiety of having been a bright, intelligent person with a phenomenal memory (a necessity as I was born blind & sometimes memory & minduflness made up for lack of vision) and I am frightened by how “out of it” I can be. It’s interesting, my ex-spouse was an adult ADDer and I can see the similarities in the “attentional blink”…

I lose pieces of conversations, sometimes important ones, and listening to talking books is much more challenging now as I sometimes can’t follow the plot without memory aids or having to replay sections, sometimes several times cuz I couldn’t follow a plot detail… I’ve learned to break stuff down into smaller bits and to shift my attention between a sedentary task involving concentration and a “busy work” task that doesn’t require much attention, but has me moving. I seem to be able to do more in a day this way, though I am totally unable to work due to pain, fatigue and cognitive issues.

This definitely happens to me. My optician appts take ages because I am always saying ‘I’m not sure, can you do that again please!!’. Also, I often zone out of conversations, miss bits, have to ask for questions to be repeated, as I haven’t processed what’s been asked. Another thing is I often just gaze into space without realising it, as though I’m on a different planet, then I either snap out of it or someone will ask if I’m ok. Never tried or been offered any ADHD/ADD meds. Does this mean that we could have ADHD or ADD?

I just had a laugh, wanted to post something else, pressed the back button on my phone and a message came up that said ‘Whoops! You’ve already said that!’. Lol ! And that is what I was going to say, I sometimes forget I’ve asked a question & ask it again, lose my train of thought mid conversation, get words round the wrong way in a sentence or even the words in the setence start with the wrong letters – like mable tat instead of table mat, forget words & peoples names. I never used to forget things, it was always ‘ask Karen, she’ll remember’!. I also forget where I put things, the times I’ve lost my keys I can’t tell you!

I relate to so many of these comments. Especially not watching long movies. It is comforting to know I am not alone. There was a time when I was unable to remember my phone number, play games with my kids etc. because I could not focus well enough. Then I started detoxing and at first I was frightened when I suddenly I could not remember that I had left food cooking on the stove. The detox nutrients were bringing out so many toxins so fast that my brain was fogged. When I began using Dr. Sherry Roger’s detox cocktail (Recancostat/glutathione, vitamin c, and lipoic acid) my brain began to clear and many of the brain fog and “gapping out” cleared. My naturopath doctor said that lipoic acid “pulls the toxins out of the brain”. Amazing the difference the detox made for me in helping with cognitive dysfunction.

Thanks for this info Debbie! I am going to look into the “brain detox” that you spoke of. I also use Camu Gold. The micro-nutrients, Vitamin C, potassium, etc… have greatly helped me increase my concentration level.

These comments are so helpful to me. I’m 70 now and sometimes think it’s more the age than the illness. If I can’t trust myself, I become too vulnerable in this complicated world. My self-esteem suffers mightily.

When I take pro-vigil, I’m a little big smarter, but this last month I’ve been too early for some appointments and missed a few others. Not like myself at all. I get good sleep now with Xyrem and my cpap machine. Been using these for five years and they’ve helped me a great deal. Still, the cognitive changes are so very hard to explain to oneself and to anyone else.

My sister thinks my illness IS my full time job. I think so, too. Just managing it, the chemicals and their relationships, it’s enormously difficult. The other day I thought I’d taken twice the Diovan and got really panicked. Turned out not to be, but the balance of 8 meds in the morning and 9 at night, well, it’s a lot to remember.

I am so grateful to these meds that help me have a little life, and to the Drs. who support me in my struggles. My Dad had this illness with no help at all. He suffered greatly. Without Xyrem I was a zombi, too.

abotbensussen,

I found it interesting that your dad also had “this”! I will be 65 in Aug. & have lived with CFIDS/FMS since childhood. I remember my dad never having an oz. of energy. I will be thrilled when a real cause & cure is finally found. I have suffered for way too long trying to handle such a misunderstood condition.

Thank you all for your input. I have never had luck with anything I’ve tried, giving me any real comfort. Ambien helps to sleep, but I am still constantly exhausted & a sleep study suggested I don’t go into two stages of sleep. I have apnea & sleep with a c-pap & oxygen, since when I lay down, my oxygen drops. I’m taking Tramadol for pain, & I know that also adds to my fatigue, but at least it gives me some comfort from the horrible pain.

I remember when I knew nobody with “this” & felt so alone. Now I know too many people with it & seems so prevalent nowadays. Really makes me wonder what in the world causes it. Gentle hugs to all.

Dale: thanks for your comments. Everything takes time and energy. I appreciate your recognition. I would hope that you could find a Dr. to prescribe Xyrem, from Jazz Pharmaceuticals, because that is what gives me the two stages of sleep we all seem to be missing, stage 3 and stage 4, restorative sleep.

Wishing you luck in finding a sleep Dr., or a psychiatrist, who can get this drug for you. It is a life saver!!

I would like to kindly invite all of the readers to try the new CogniFit brain training software, which significantly slows the cognitive decline.

CogniFit is a leading developer of software to measure and train the different cognitive abilities. It is a scientifically validated technology, and it is now available for free, totally online, easy to use, and touch-screen friendly.

You can try it at http://www.cognifit.com/. It takes around 15m to do your own cognitive assessment. You will instantly know how fit your brain is and what can be done to boost it.

If you like it, feel free to share it with anyone you want to. It’s free!

Thank you very much.

Wow. Thank you all so much for sharing your experiences and for this thread. It really helps!

And I thought I was losing it (literally).
Yes….
Have always had some fog moments, it’s like trying to wade through vanilla custard. I’ve been on Lyrica for several years, makes me able to function, but it never occurred to me that the cognitive stuff might be worse as a result.

But lately? Sometimes in the middle of a lecture, without warning, I completely lose track of what I was saying. Suddenly. “Blink” does describe it. At this point I desparately try to rewind to something i can remember and get back there before the class starts looking confused!

Another thing that happens is an inability, especially when I’m really tired or stressed by loud noise, etc, to talk at all. I don’t just lose a word, I have thoughts but it feels like I have to break through a membrane to get them out. So when I do speak, it comes out sounding a bit harsh and desparate to begin with.

I’m still teaching (and will as long as my students continue to learn), but the loss of my cognitive abilities and becoming so inarticulate really threatens my self-esteem.
Never realized just how much of my self-esteem came from working hard and being smart. (Guess I’ll have to fall back on being nice or something. (-: )

I have had a great decrease in Fibro-Fog when eating well and getting the micro-nutrients that my brain requires to work more properly. CAMU GOLD is the one product that really made a difference, since it is extremely nutrient dense.

You can get a bottle of Camu Gold at http://amazinghealth.amazonherb.net

Bless all my fibro friends!
Anna French

I have gotten to the point that I have to watch Movies with subtitles. If I dont, I miss a lot and am always asking people, “what just happened?” and “What did I miss?”

I started using the close captioning function on my tv a couple of years ago, but never realized till I read your post Darlene, that it has also helped me so much dealing with the overload I experience watching tv/movies. As soon as I read your comment, I realized how ’stressful’ watching tv can be for people like us, and how the subtitles take away the stress and allow us to process more easily. Thank you for mentioning it.

My wife’s experience with “Fog” was she was no longer able to play the piano. She was a classical piano student and completely forgot how to play. This lasted for 5 years. She can now play a little. Lots of forgetfullnes continues. She has been disabled for 18 years.

I was diagnosed with fibro in 2000 and later chronic fatigue. By accident, I found a nearby clinic that operates on the theory that in some cases, fibro and fatigue are the adult expression of untreated and undiagnosed ADHD, inattentive type. I was evaluated and found to have ADHD. I have been on adderall for two weeks and have noticed an easing up of my symptoms. Interestingly, I started taking the medicine in the worst time of my monthly cycle. I am looking forward to see what happens when I am on the better side of that cycle!

Check out information written by Dr. Joel Young and Judith Redmann. Dr. Young has published a couple of books on adult ADHD and they are very good.

I was given ADHD drugs for my Fibrofog by a neuropsychologist, but they didn’t help and the side effects were intolerable. They gave me a very dry mouth and made food taste bad.

This is making itself very prevalent in my work life, which is also making my work life quite difficult. My coworkers either cannot or will not appreciate how fibro has made my life difficult in the cognitive arena – it’s always just written off to incompetence or lack of dedication. That is simply not true, so I feel very devalued here.

I definitely have this. I had a sleep study done about 8 years ago to try and find out what was causing my insomnia. During the day part of the test it was discovered I have narcolepsy which causes the brain to wink out for brief periods. Interestingly the drugs used to treat ADD and ADHD and the same as those for narcolepsy. I have to wonder if these two things are related. I don’t think I had this before my car accident.

On a side note here is a link to a very interesting TED talk about allodynia and chronic pain as a feedback loop by a doctor in Stanford (I think). It’s well worth listening too.

http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic_pain.html

I read your comments and sounded so much like my life. My GP todl me about 25 yrs ago that I had Fibro and I said “what is it” I am a RN and had never heard of it. It worsened over yrs with Increased stress, MVA , etc. So what do you take ??? I am on disablity now !

I don’t take anything for the narcolepsy. The stimulants (Aderall and such) ended up keeping me awake at night even if I took them at 6am!

Chronic stress over decades has taken its toll. The last three years or so have gotten worse with pain levels especially around my neck and shoulders. Trial and error over years has led me to many lifestyle changes that overall have helped with sleep.

Right now I am taking Celexa, synthroid, and clonazapam at bedtime and occasionally during the day for panic attacks.

Delere, Thank you for replying . I am trying to figure out how to copy and paste so many of these responses in hope of helping my loved ones understand. Sometimes I feel like just not talking. I will listen to your recommendation as well.
good luck with your health, Prayers sent your way.

To copy just left click and hold where you want to start copying then drag the mouse to where you want to stop. That selects the text. Then hover over what you just highlighted, right click and select copy in the box that pops up. Sometimes you have to start at the bottom of what you want and go up – weird. Anyway, you can paste it into Word or Notepad or an email.

You can also copy and paste the url in the address bar. That’s the thing at the top of your browser window that usually starts with “http://” or something similar. That way you get the entire page and whoever you send it to can just go to the whole page. That might be more effective because it will show this is a real website where they can even see other topics Adrienne has posted.

Take care.

See if you can spot the”R” or “C” in this Youtube Attention Blink test. I didn’t see either.

http://www.youtube.com/watch?v=MH6ZSfhdIuM

Holy Cow! I tried this test and didn’t see the R or the C.
Second time I barely caught the R.
Third time I saw the R.
Fourth time I watched only for the C and barely caught it.

Are you sure there was a C in there, I watched it 4 times and tried to avoid the R and still couldn’t see a C, dang.

Caught the R only after I squinted after the 5th or 6th time. Finally caught the C after cheating. Just confirms the issues I have been having with not only memory but blanking out in the middle of a sentence, or talking, or reading. I was a technical writer. However, maybe I won’t remember the knee replacement surgery I be having in July. Ha!!!!

Interesting. When I was looking for the R I did not see the C. When I did it again and looked for the C I saw the R before it like there was a brain buffer or something. Cool.
My roommate saw both the R and C the first go around.

I also am a nurse. I lost my management position due to my fibro.Mostly they didn’t understand my fog. I had trouble remembering names and had some expressive aphasia. Combine that with always looking tired it was assumed I was on drugs. I was lyrica, it made me 100 times worse.I am now a staff nurse at the age of 54.It is a daily struggle.

I’m still working a full-time job as an executive assistant and there are days when I go to do something that I literally have to stop and remember how to do it. It’s so frustrating and upsetting to think I can’t remember a job I’ve been doing for many years. I’ve made stupid mistakes but have been lucky enough to catch them before someone else did. I’m getting close to retirement but because of financial reasons, thanks to a cheating husband, I will have to keep working as long as I am able. I worry that my Fibro-fog, or whatever it is, doesn’t get so bad I have to stop working before I’m ready to. I also have times when I’m at home that I have to just stop what I’m doing and sit down. I don’t do anything but just sit and stare at nothing and then I get up and continue what I was doing. So weird!

Yes…I have a Master’s Degree among other pieces of paper that affirm that indeed I have brain cells somewhere in my noggin…and it’s completely distressing when I’m trying to make an academic point about something I’m supposed to be an expert on and the listener looks at me like, ‘um, shouldn’t you know this’ in a moment of a fibro blank.

Shhhhh…….I’ve just managed to convince my hubby he was forgetting to tell me things! I don’t want him to find out about this!

Hi, I’ve recently been diagnosed with fibro in 2010. I can’t tell you how it helps to read all these comments that almost mirror my fibro fog. Now it all makes sense how on some days when I was working I started having such a hard time concentrating. I am now coming to terms that I can no longer work. Even when I try to cook it takes me a minute to remember each little step. I’m very happy that fibro is really starting to get recognized. Since I found out that I have fibro, it seems that so many people know a person with fibro. It’s like every time I tell someone that I have fibro they know someone with fibro. My ENT doctor’s wife has fibro, my last job one of the employee’s wife has fibro, and so on.

My fibro fog comes and goes and is very much like what you all have posted. I’ve forgotten where I was driving to, remembered where, and moments later forgot again and had to remind myself again. I’ve taken the wrong turn going home. I lose my train of thought, or can’t find a word or even can’t start a sentence at times. I had a rheumy give me Provigil and when I tried it, I just felt like I couldn’t think of the right word faster. My brain still didn’t work. I get sensory overload a lot and sometimes that shuts me down. When it’s really bad, I have to lay down.

I’m still working part-time as a bookkeeper. I do simple books and can’t do any complicated accounting anymore. I was denied disability-I was told that I can’t be an accountant anymore, but I could be a cashier. Like I could stand at a register for any amount of time with my pain levels -Sorry just had to vent.
God bless!

I take adderall for ADD, but even with taking it I still blank out. I have episodes where I just totally blank out and get so frustrated I’ll hit myself in the head. I stutter or just will ummm, ummm. and that’s on adderall. I’ve had to stop taking Lyrica because I am working and my work is suffering. I’m still taking Topamax however because of severe migraines. Where does it end???

I have taken Dextroamphet (ADD) medication for my brain fog and felt it really did help me. Then I switched doctors and she weaned me off of a lot of medication including this one. I didn’t realize how much it was helping me until I got off of it. However, she said it could be hard on the heart and different family members, hate to see me taking more medications. At least I think I remember that it helped me remember… lol

Yes, definitely. This is partly why I’m so convinced neurology is probably a cause of Chronic Fatigue Syndrome. Some days even when I’m not pushing myself it feels like my brain and heart become very tired and slow down and my brain just stops. It’s like my brain can’t keep up and this is when I have days when I can’t even read, concentrate, remember (short term), process information I can process at other times, etc. My body also slows right down during these times, which makes sense because the brain controls the body. Again, I emphasize this is why I logically think neurology plays a key role and is probably the cause. During these times it can feel like I’m about to have a sezuire because my hands may tremble, my speech slows, etc. and I get dizzy spells, etc. This aspect of symptoms however, has improved as long as I’m not taking medications that cause myoclonus, seizures, etc. Therefore, I am so very convinced this is NOT a psychological disorder.

My biggest problem with the “fog”, is that I’m always tongue tied! The wrong words always come out and I feel silly sometimes. Usually I catch myself and then correct it, but sometimes not. What is interesting is that my sister and a close friend who both have fibro also, they are both the same way as me. Boy is it fun trying to have a serious conversation between us….glad we can still laugh about it. I think some people think we do it on purpose…NOT!

Yes – I often say completely the wrong word when under stress – and I know I’ve done it straight away. We’re trying to sell our house at the moment, and I find myself talking complete nonsense – not a good thing! I’ve learnt it is better to maintain a mysterious silence.

And I often can’t retrieve a word at all, so resort to describing it instead .. ‘thing that takes you from A to B, makes a loud noise, lives on petrol, … CAR!’. However, you can’t really try that technique on strangers.

Hi Dee, I thing it is wonderfull that disregard you condition you still have a good sense of humor, hold on to it as long as you can, it helps to deal with our hardships more easy..

My husband calls this “Michelle’s world”. I blank out and don’t hear a word he or anyone is saying. Unfortunately, I had to give up driving, which I love, because of this symptom of my Fibro.

I also gave up driving for 10 yrs. Trying to concentrate on where I should be going (sometimes forgot) and not hitting the car in front of me. I’d freak out with stop lights, wonder if it was really red, or really green. All the motion of the traffic going with me, coming from the other way, or the movement of the cross traffic had me in a dangerous daze. I would STAND on the brake pedal, felt like I would hit the car in front of me if I didn’t. I finally realized what a hazard I was to myself and those poor souls in the other vehicles!

After all these years, I have now tried driving again just to short places. I can do it, but it still doesn’t feel like a natural ability with safeness. I don’t like having to depend on other people to drive me places, it really takes away a feeling of INdependence.

This illness never ceases to amze me at it’s complexities. You think there’s nothing more I can lose… but there always is.

When I got sick, a very long time ago, one of the main differences between fibro and CFS were that cognitive problems were found with CFS while joint and muscle problems were found with suffers of fibro. Included in cognitive problems was brain fog.

I am a nurse and had to leave my job because of Fibro. Dr Carol Beals, in Lansing, MI put me on Namenda for the Fibro Fog. It is an Alzheimer’s drug. It does seem to help, although, I still am very foggy somedays.

Prior to fibromyalgia, I had a perfectly functioning brain, a long attention span and a photographic memory. But having fibromyalgia is like trying to walk through mental quicksand. I have lost at least 15 IQ points, can no longer do ANY math in my head, have trouble recognizing faces, and have episodes where my speech resembles a person who has had a stroke. Between the severe fibro fog and exhaustion, I had to stop working in 2005.

Yes, I experience this often. Missing things and short term memory, concentration problems. Even focusing my eyes is an issue. I use to read a lot and multitask, etc. and I can no longer do what I use to. I use to be able to read all day and now I can read on average 10 minutes at a time. Some times I can’t read at all. I find this incredibly disheartening at times. When I’m used to functioning at a certain level and now at times I can barely think. It’s like an invisible disability so people don’t understand. I’ve had people treat me like I’m stupid or worse like I’m faking an illness. I do find pacing myself and continually changing from one type of activity to the other to be helping. I’ll read a bit or do brain work and then I’ll switch to something like dishes or something physical and then rest in between. I’m able to be and feel more productive this way. This has boosted my confidence regardless of what people think or how much they understand. We need to take care of ourselves and do what works. Thanks for posting this article. I’m glad so many others shared because it reminds me I’m not alone.

My foggy brain and my lack of energy are my worst problems. I have pain too, but I can deal with the pain more than the fog or energy.

It’s gotten to the place that when I try to talk, it appears to others that I have no intelligence. It makes me question if that is a correct assumption?? I know it’s there somewhere, or used to be… where did it go? Is it completely gone or just hidden up there in a maze and all tied up with some invisible twine?

At times, I will talk nonstop, ramble on and on and on. Afterwards, I think… wow, that must have sounded like a big mess to them.

The fog is a horrible, horrible thing to deal with. I try to laugh at myself… otherwise I’ll cry…

Wow! thanks for all the input. I have resorted to the describing technigue and it does help! It’s funny that we can descibe the object but can’t remember the name. Lately I feel like I am foggy most of the time. thanks for the tip on closed-captioning, I usually miss half the dialog on tv and I am getting hard of hearing. What a combo-loss of hearing and brain fog. I gave up my car when I started having trouble with the “fog”. I drive occasionaly but it is only in the neighborhood.

I,too, prided myself on my knowlege and abilities to write and remember “stuff”, but not any more. Seems like my brain jumbles up when I try to put things on paper. But I make a gazillion notes and then forget where I put them.

I have changed my diet with a new doc, and there are times I revel in remembering. Added more protein to my diet.
I am so sad by these losses. Luckliy I can still read books and watch the nature programs on TV. I told my husband that I only need 10 books because after I read them I forget the entire story, so I could read them all over again.

Thanks again for the input and a place to vent.

Amen about reading books. Reading is my PASSION! I’ve always, always been an avid reader. Now though, (always having been a night owl and my best attention is then) I read at night and reread parts because I can’t process what I read. After the book is finished, I can’t retain hardly any of it. I’ve read the same books several times when I knew they were good and I could learn things from them if I could only remember, so I try over and over. I wish I had my old capabilities.

If something is processed in my brain, and gets into my LONG TERM memory, then I can remember it, usually very well. My short term memory though is just absolutely the PITS!! It’s frustrating at times to my husband. He repeats stuff, asks me if I can remember to do things, asks me to repeat things back to him at times to make sure I heard what he said, I feel like a little child being scolded. He tells me, “Well, I never know if you’ve heard me or not.” Mostly he is very good about dealing with the things this illness has changed within me. It’s stressful for me and likewise, it’s stressful for him too. We’ve been married 38 yrs so he knows what I used to be like before I came down with this condition. I’d like to have the old me back again…

Yes, I have felt that way for years. I have tried the Add med and it does help . I do not take it , because it slows me down at work. However, to take a class or study, it really helped when I took Masssage therapy. I tend to look away from my dental patients…which is part of ADD. I have had to really focus on looking at my patient’s face. There are times when I know what to do , but jtransverse or it is like I am dyslexic.LOL! My Boss got with me the other day. I wrote a card upside down. I checked before I wrote , but still. She is wonderful and understands…yet, so embarassing.

Last week I had a complete loss of awareness that I have never had before. I have had fibro for about 10 years. On the day I am talking about I had taken my son to school and then remember very little about the rest of the day. My husband picked our son up from after school and when he came home I was “out of it” as if I were high or very drunk. He took me to the ER and after running all kinds of tests they had no answers for us. I was foggy for a couple of days and then back to normal. I am curious if anyone else has had something like this happen to them. I was recently put on Effexor and I believe that this was a reaction to that medication. Again I would love to hear if anyone else has had an experience like this.
Thanks!
Renae

No experience like that. I was on Effexor ER though, it lifted me out of my depression fairly quick but my doctor at that time made me stay on it, and he had me the maximum dose. It had a lot of side effects for me. I gained almost 50 pounds! I CHANGED DOCTORS!! Lost the weight, now after 12 yrs, I’m battling my Thyroid dosage, I need to stay on the very high end of normal and an Endocryologist made a change to lower my dose. Since then, in 15 months, I’ve gained 20 lbs and my system has been turned topsy turvy. Finally thyroid test funcion and ME saying I KNOW MY BODY, please listen to me… has gotten my Rhuemy and Primary to take back over and increase my Levoxyl. I’m seeing a little more energy, the reduction zapped the limited strength that I did have.

The doctors need to listen to us, we have to have input into our healthcare. We live in our bodies, nobody knows them like we do.

One one the most difficult things for each of us, it seems, is relenquishing a career we were (and still are) so passionate about and one that in some ways defined us.
God bless and keep us all. Never give up.

I have been a RN for 11yrs in various full time fast pasted environments. I was dx with fibro at the age of 30. Now, 4yrs later, I am struggling with my 24+hr night shift job on a busy hospital unit. The 12 hr shifts end up be 14hr and I rarely get more then 3hrs sleep with meds. I am running off the road on the way home and in so much pain a few hours into my shift. I take a bottle of Aleeve to work with me and it does no good. I am worried that I am at the end of this part of my nursing career. I have a housefull of energetic young boys to run after and I can barely walk or get OOB. I am working on seeing a local rheumatolgist to confirm that I also have lupus..and OA which runs in my family. I am sad that I am no longer that young, energetic happy person. I hold it all in and pray that each shift I work will be over quickly without any mistakes. My OCD may be my only saving grace that help cancel out the fibrofog. But I know I am on borrowed time. I struggle a whole lot more than I used to, but only I can see it….Any advice out there??

So what is the difference between ADD “zoning out” and FM/CFS “blinking”? I have both and no matter what you call it, the work required to stay focused and be able to work is overwhelming.

My doctor calls this “stress amnesia”. I have lots of blanks in my memory.

I am a dental hygienist and was a dental assistant for 20 yrs. and was diagnosed with osteoarthritis and fibromyalgia in 2011. I’m looking for other dental professionals dealing with similar challenges!
Thanks!

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I’ve sat down to write a comment twice now and went totally blank…go figure. Reading these comments has made me emotionally confused. On one hand, I’m happy to know I’m not alone with my cognitive problems and I’m disheartened that so many have lost their careers over it as I have. I was an insurance professional but the mistakes I was making went from minor to major leaving big gaps in peoples coverages. I’ve lost two good jobs because of FM and I don’t know what I’m supposed to do now.
The only person I even discuss my condition with is my best friend but she does not (or will not) even try to understand the neurological problems I’m having. She keeps telling me I’m just getting older and it’s normal….I’m only 47, I don’t think it’s normal to suddenly not know where you are or where you are going!
I find myself being overly proud when I complete tasks that would be considered “everyday” for most people.
When I”m in a situation with multiple people talking, I get overloaded and end up blurting out something that makes little or no sense, it’s so frustrating!
My best friend also doesn’t understand the books and movies thing. She keeps pushing me to read, she just loaned me Stephen Kings’ latest book which is over 700 pages long. It will take me a year to finish it and then I probably won’t know what the heck I read.
I feel so lost, I don’t know where to turn for help anymore since I lost my insurance when I lost my last job. The pain keeps me from sleeping well and while Lyrica helps, I can’t afford to take my full dose.
Has anyone tried the generic subsitute called gabapentin? I will have to switch over soon when I totally run out of Lyrica

Firstly, In response to DanaW, I take 300 mg Gabapentin 3 X daily and it helps to control the excruciating pain that I experience. I too used to be on Lyrica, but because I am a poor college student, my doctor switched me to Gabapentin. Lyrica seemed to be more effective in symptom control and it had far fewer side effects. The Gabapentin causes tiredness in me, but it’s better than suffering through the pain.

I’m a 22 Y/O college student pursuing a Bachelor’s degree in Rhetoric & Professional Writing and Sociology. I was diagnosed 2 years ago with FM. Strangely, since the diagnosis I have started to decline cognitively at an alarming rate. It is so disheartening because nobody in my life understands what it is like to forget what they are saying in the middle of a sentence. Fatigue is also a HUGE problem for me, I’ve had to drop 2 courses this quarter because I surpassed the allowed number of abscences and I had missed too much (That was almost $2,000 completely wasted).

I have been on Methelphenidate ER (Ritalin) 20mg 3 X a day, the highest recommended dose. It helps a little bit with my concentration but overall it just isn’t working very well for my overall cognitive dysfunction.

Has anyone been prescribed Ritalin and if so, did it help you? What is a good alternative?

Lastly, I was wondering if anyone here has been tested for MS. I know the symptoms of FM can mimic MS, I know I would need comprehensive testing to determine the diagnosis, but would I know if I had MS? Sometimes I feel like there is something extremely serious wrong with me.

I am actually VERY scared. I’m so glad everyone here has shared their experiences, it helps relieve the stress and anxiety of lonely suffering that is FM. Best to all!