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Cognitive- Do you forget what you learn because of CFS?

Discussion in 'General ME/CFS Discussion' started by RedLineBoy, Aug 28, 2013.

  1. RedLineBoy

    RedLineBoy

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    I notice lately that anything I learned in the past I have forgotten. I feel cognitively I am stupid. I can not write or follow simple instruction without writing them down.

    My writing skills is no good anymore. My short term memory is no good, however my long term memory is great.

    Any ideas?

    Thank you
    beaker and Antares in NYC like this.
  2. RedLineBoy

    RedLineBoy

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    Is this normal for us to forget things that once we were good at? For example, I started memorizing vocabulary list few months ago to see how I will do in near future. After having it in my long term memory for a while I stopped practicing. Few months later I try to recall the words i barely feel like I even knew the words.

    Making connection in the brain is such a slow process. I learn very slow now..Cause of it CMV???
  3. Hi

    My name is Lisa I am new to this board so sorry i can not offer any helpful advice. i am currently going through the same thing I have trouble reading and I am 33 and resorting to hire a tutor o help me back on track. I would love to hear any advice also.

    Thanks
    Lisa x
  4. Antares in NYC

    Antares in NYC Senior Member

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    Hi RedLineBoy,

    I can totally relate, but unfortunately I have no advice. The bulk of my CFS symptoms are cognitive. Both my short term and long term memory are bad. Short term is basically non-existent at this point. My long term memory has become a bizarre jumble of scattered and faint memories. I have forgotten things I knew, things I learned, the people I once knew, or what I had for breakfast. If I learn something new today, I will forget it tomorrow. I forget people's names constantly, even people I see on a daily basis. If you ask me to tell you the names of my top 5 friends from college, I would be hard press to remember 3 names, even though I was quite social and had several circles of friends. Same goes for subjects I studied, disciplines, my thesis, professional techniques, etc...

    I've been dealing with CFS for over 15 years, and I feel that for the last 3, my cognitive issues have worsened completely. I would be more than interested in knowing if there's something, anything, that would decrease these awful cognitive issues. Two weeks ago I started taking extra B12 following some of the easier methylation methods listed in these forums, but I have not experienced any improvement yet. Some people seem to have benefited from it, but so far I have not noticed any benefit.

    I would be very interested in knowing if anything out there does really help with the cognitive issues.
  5. minkeygirl

    minkeygirl Senior Member

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    Redline Boy, it's just the nature of the beast. I can't remember squat. I just went to put a screw in lock on a door and had to read the instructions 10 times and still didn't get it.

    I haven't found much that helps sorry to say so I just live with it.

    Mins
    peggy-sue likes this.
  6. Tally

    Tally Senior Member

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    I forget things that happened long time ago, but mostly my biggest problem is short-term memory.

    I used to be able to memorize foreign language vocabulary with 2 repetitions of each word, but now even ten or twenty don't seem enough.
  7. RedLineBoy

    RedLineBoy

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    Basically, high demand career are forbidden to take on for CFS patient. I just can't imagine how many dreams have been shatter because of CFS.

    Can you imagine if your a lawyer or doctor put yourself through college and suddenly be diagnose with CFS. What a curve ball life throws at you.

    This what has happen to me. Wanting to pursue high demanding career while being held back by CFS.
    Antares in NYC likes this.
  8. Ian

    Ian Senior Member

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    Maybe you have some of these
    [​IMG]

    Nothing like some mercury in your dental fillings to screw up your brain.
  9. Antares in NYC

    Antares in NYC Senior Member

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    That's basically my personal tragedy with CFS. I have a bachelors degree with honors, a masters degree, a second postgraduate degree... and as I was applying to get my PhD, then ME/CFS happened to me. I could never pursue my doctorate after the onset. As a matter of fact, all my college learnings feel fuzzy, faint, and i have completely forgotten books I read, classes I took, etc. What makes me particularly sad about my fate is that I was the first in my family to ever go to college. I come from very a humble background, so all my college degrees I attained via academic scholarships, achieved with real hard work and discipline. Everyone was so proud of my accomplishments, and I was so looking forward a bright career... then it all fizzled out in a cloud of brain fog, crushing fatigue and memory lapses.

    An entire academic life thrown away by this f***ing ME/CFS. Now I barely survive on sub-par jobs (yet still very demanding) that barely pay the rent and medical insurance.
    FML!
    Firestormm likes this.
  10. Valentijn

    Valentijn Activity Level: 3

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    I graduated from law school about 2 years before becoming ill. My condition rather quickly declined to the point that I am housebound, and even household chores are often too much. So I haven't been able to work at all, yet have about $150,000 in student loan debt.

    I think it can make some of my cognitive problems especially frustrating as well. I used to be very fast and clever, and could read novels at the rate of about 100 pages per hour. Now I'm lucky to make it through a simple novel that I've read many times before without getting a brain-crash. And forget about expressing myself easily or playing board games and such.

    I count myself lucky than I can read research and even write stuff from time to time, if I'm careful and patient. But it still catches me by surprise how it can take a full day to do something cognitive which would've taken me an hour or so, once upon a time.
    Beyond, GracieJ, Thinktank and 6 others like this.
  11. Antares in NYC

    Antares in NYC Senior Member

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    Thanks for your reply. It often feels like i'm the only one dealing with this awful bad luck, but I'm reminded that others are housebound. While some days I feel like I can barely function, I still have to work. My level is around 6/10, most times, which allows me for mobility, but my cognitive issues are tremendous. I can totally relate to your description of what it feels like reading books. I find myself drifting often, which forces me to re-read the same paragraph or page over and over again.
    [​IMG]
    So frustrating!

    Another thing: I completely forgot the rules of board games, poker, etc. I have to relearn the rules if a friend invites me to play. No fun! Sigh...

    Same thing over here. I recently had to write and submit a report for a current assignment, and it literally took me all day, when it should have been 2 hours, 3 hours max. I had to strain my brain to squeeze the words out of it. :mad: I often felt my attention drifting, missing the right words, having to perform mental somersaults to express what I needed to say. :thumbdown: Absolutely ridiculous and frustrating. This, from a guy that had a thesis and a research paper published in academic journals 15 years ago. :rolleyes:
    Ruthie24, Firestormm and Valentijn like this.
  12. RedLineBoy

    RedLineBoy

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    Life sucks. Why us? Literally, we've spent half of our life studying and building career path for nothing. I just don't understand how can medical society not figure out what is wrong with many of us. If CMV and EBV are cause of CFS then were is the treatment?

    As for now the only solution I can think of is to take stimulant. The sad part is we will never feel same in our lives again.

    Thank you
    Antares in NYC likes this.
  13. beaker

    beaker CFS/ME 1986

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    I try to push things from short term into long term memory via repetition. Repetition to the point of obsessing over whatever it is I am trying to be able to remember. Sometimes it works. Sometimes not so much. It takes a lot of work and developing habits to remember to repeat. I use massive quantities of post it notes.
    But yes, pretty much everything everyone is saying is true for me too.

    I have trouble reading books, it's a chore, so I rarely attempt it anymore.
    It can take me hours for one post on a board, b/c I mix up words and meanings and sentence structure and I forget what I am trying to say. I fall asleep while on the computer writing, and lose what I am doing. When I read what I write I don't understand what I have written, even if someone else tells me it makes sense, it doesn't make sense to me . Frustrating. The same thing happens while speaking. So I go over things again and again to try and catch things. ( Or when speaking I explain and explain and my friends are like yeah we got it the first time. IT's so hard to explain that I don't understand me, so I don't know how they can. )

    I'm smart I want to express myself that way, but it is exhausting and not the most productive use of my time. I need to let it go.I just can't seem to. I want to be me.
  14. Comet

    Comet

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    I'm sorry... what was the question again? I forgot... :rofl:
    GracieJ, madietodd, peggy-sue and 4 others like this.
  15. ukxmrv

    ukxmrv Senior Member

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    My spouse had written lists of instructions for me on simple things. My IQ pre-ME was in the top 3%. Now I need notebooks and these simple lists to survive. Every now and then I get flashes and better times but no where near as I was before. The brain problem can be bad for a year, then a little better for a year - but also can vary within a month or a week.

    Sometimes I can read medical journals and skim read (but not as well as I could pre-ME) but that could be a month followed by a 6 month period of complete incomprehension.

    The problem seems to be learning new things in particular. Repetition really does help me (as Beaker said) but if it;'s a task that needs to be done each month then it's back to the written notes. Even if it is the same task done each month for 5 years.
  16. Firestormm

    Firestormm Senior Member

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    Hardest to handle aspect of this illness for me is that associated with cognition. I don't know if it affects everyone with ME, or to the same extent: but it was undoubtedly the source for my loss of self-confidence. I want to say more and will come back when able. Good thread - unfortunately.
    Ruthie24 and peggy-sue like this.
  17. PNR2008

    PNR2008 Senior Member

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    Your stories have affected me greatly. Such a waste of talent. I can't believe the governments around the world haven't recognized this great loss on a worldwide scale. It just blows my mind. When I was first ill in the acute state I couldn't remember my dog's name. I was working as an interior designer and was living in fear of quoting the wrong price for drapery or carpet installations, thousand dollar mistakes could be easily made with a working brain, without quoting estimates with a sick one. I became compulsive and anal going over and over job orders, measurements etc. Then I'd sleep an entire week-end resting my brain. I was exhausted and began to look it which doesn't inspire confidence in clients. My last year of work was my best (financially and being recognized) but it almost killed me. Still I'm grateful for the chance to feel success. When I left my place of employment, I said I'd be back in 3-6 months that was 25yrs ago. Had to go on disability, which is the only way I survived. You all should be commended for your survival too.
    Ruthie24, peggy-sue, beaker and 3 others like this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I would say cognitive issues seem to worsen over time with cfs even if fatigue stays the same or improves. I wonder if theres a way to improve this other then coping strategies etc
  19. Antares in NYC

    Antares in NYC Senior Member

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    Hi PNR2008,
    I think you bring a very important issue. At what point would governments start to be concerned about the effects of ME/CFS in society? I mean, aside from our broken personal lives, how about the of the loss of productivity? How about the loss of competitiveness? As the numbers of people affected increase, and a larger number of the population slowly becomes affected by this, when it's the time to worry about the collective impact of this illness?

    I don't have the answers to those questions, but I can only extrapolate to other patients the tremendous impact that ME/CFS had in me. I was extremely active, productive, creative, and on my path to a bright career, which I strived for with tremendous work and dedication; I'm a mess now, lost in a stain of brain-fog and unable to multitask on the most minimal things. All my work and efforts thrown away, completely wasted.

    At the larger scale, it's not just how ME/CFS destroyed our career prospects, but think about this: our society as a whole has been impacted by all those contributions we could not make. How many others in our society and our communities have lost because of our loss, because of our inability to contribute, produce or create?

    They estimate 1 million people are affected by this thing in the USA alone (17 worldwide). I think it's a very low estimate for two reasons:
    • My own experience: I've been dealing with this curse for over 15 years, only to be diagnosed this year! I wasted time with dozens of doctors and specialists through the years unable to figure what was wrong with me. I was undiagnosed for years thanks (in part) to mediocre if not incompetent doctors. I think there must be scores of people lost on that medical maze, going from doctor to doctor until the final diagnosis (if they are lucky to get a diagnosis). Also, how many patients are shamed into keeping it to themselves for fear of being labeled lazy or weak? The more I think about it, that 1 million figure seems way low.
    • Within my personal social circle I know of two people diagnosed with CFS this year, aside from myself (my girlfriend, and a former coworker). Since there seems to be an infectious trigger to this disease (although we are mostly in the dark about what the heck it is), wouldn't it be important to start looking deeper into the impact and growth of this medical puzzle?
    I mean, how many millions of people going into disability will be acceptable? At what point we start taking seriously the potential devastation to the productivity and intellectual functioning of a considerable swath of our population? How many professors, doctors, authors, lawyers, engineers, and other qualified professionals do we think is ok to lose to this disease? What's the point to get yourself into mountains of debt to attend college, only to become intellectually disabled after graduation? At what point does our society decides to invest in solving a medical puzzle with the potential to become a health crisis of certain magnitude? Is it ok to keep ignoring an illness that's slowly chipping away our intellectual acumen and productivity?

    These things may sound trivial for those unaware of ME/CFS. For those of us who had our lives broken by this illness, these are serious concerns.
    GracieJ, Ruthie24 and peggy-sue like this.
  20. PNR2008

    PNR2008 Senior Member

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    I agree with you wholeheartedly. I often wondered if our gov. knows and has known about this plague and has kept quiet for financial reasons (say like Gulf War Syndrome) but if people like me don't start dying off it seems the one to six million are going to bankrupt the disability system. I always thought Japan would come up with some answers because many of their population works into old age. Anyway it hurts my head to think like I'm playing chess, in 1988 I never thought I'd have this illness in 2013 and actually be worse.
    GracieJ likes this.

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