Is my cognitive dysfunction the same as yours?

Discussion in 'Fibromyalgia Main Forum' started by DawnR, Feb 3, 2004.

  1. DawnR

    DawnR New Member

    Hello everyone. I write rough drafts for everything. This one is the result of several days—here goes. Two years ago I quit my well paying job of 12 years; a desperate attempt to regain my health. My physical pain is bearable; my cognitive dysfunction is not. Was it sleep aids (I’ve tried them all), the wrong type of sleep, stress…I needed to find out. First step, I weaned off my sleep aid. The result: endless insomnia, month upon month. Without sleep my mental function remained deteriorated; now with resuming sleep aids (Klonopin) my mental function remains deteriorated.

    I have lost ability to focus or concentrate, I cannot read, cannot comprehend, cannot follow instructions, etc. I even went to an anonymous depression screening but I could not fill out the questionnaire; read and re-read but couldn’t comprehend.

    On the outside I appear to be present but in my head I can see the people around me, I can hear them speaking but I cannot comprehend. It’s as if I see right through them. In my own terms, it feels like pressure changes in my head. To me inside my brain feels like the colored gunk inside a lava lamp as it floats around like sludge.

    I know some theories—seizure-like states/decreased blood flow/no stage 4 sleep/sleep aid side effects/ neurotransmitters, cytokines, hormones, etc.— but where to start? My two year quest has left me unemployed & unemployable as the outside world is too much for my brain to process.

    My unbelievably supportive husband tells me to tell the doctor but honestly I cannot put it into words. How do you explain your cognitive dysfunction to your doctor? Has anyone found anything that helps cognitive dysfunction? A mind really is a terrible thing to waste. Thanks for listening. I would really appreciate any suggestions. This is a great board with great folks.
    Dawn

  2. Knotty

    Knotty New Member

    Hi! - I agree with jeanski that you are quite eloquent in your post. Why not make a copy and take that into your Dr. Also - if your husband would accompany you - and confirm your problems to the Dr., it would likely carry considerable weight. Not fair - but true.

    I take notes in to the Dr. every time I go. It's much faster and I get to tell/ask what I want. Many Dr.'s appreciate this as it speeds things up for them as well.

    What you're feeling is indeed frustrating and debilitating - I've been there. I'm better than I was but not the way I once was - lol! I really thought I might have Alzheimers.

    Actually, my Dr. took me off the anti-depressant I was on and put me on Effexor XR which I took quite awhile to adapt to. But I now sleep better (sometimes have to take a sleeping pill for awhile, then wean myself off)but I "had" to get some sleep - and I believe the Effexor has helped my cognitive skills somewhat as well as decreased my pain level OR increased my tolerance. LOL!

    Please take your letter to you Dr. - you express it very well. Good Luck to you!
  3. suzbee

    suzbee New Member

    Yes, DawnR, what you describe is precisely what I battle. Apparently, it is this way for many of us, so know you are not alone.

    I am finally on a treatment protocol that is helping my fatigue and pain, but it has done very little for my cognitive ability. Maybe I need to order a new brain! LOL!

    Here's to better days -- I hope,
    suzbee
    [This Message was Edited on 02/03/2004]
  4. richmitch

    richmitch New Member


    Hi Dawn. God bless you.

    Cognitive Dysfunction is the most difficult thing I've ever had to deal with. My memory is so bad that I often can't remember what I just said or did. I often have to re-read each sentence three times to make sure that what I have written or read is completely understood and correct. It has caused me so much anxiety.

    It makes it hard to be around other people. Last year, I had days where I felt like I was losing my mind.

    I am sleeping better and that has helped, but cognitive dysfunction is still difficult. See my post "How I Improved My Sleep" for more info.

    Other things that I have found helpful are the following: using a planner to record appointments, daily to-do list, television shows and other information (I use a highlighter pen over the appointments, etc., when I have to leave home), I also take brief notes when I'm on the phone, put things back in their specific place at home and I try to keep my mind sharp by playing "Solitaire" and "Wheel of Fortune" on my computer.

    I subscribe to Immune Support's "Tip of the Day" (see the home page of this site). Below is one that I saved from their Jan. 5 tip. I have copied and pasted it below:

    Tip of the Day for January 05, 2004

    Here are some common-sense pointers that can help you clear the brain fog of CFS and FM:
    1. Repeat yourself. Repeat things to yourself over and over again. Repetition will keep thoughts fresh in your mind.

    2. Write it down. Whether you write in a calendar, in a notebook or on sticky notes, if you're afraid you won't remember something, putting pen to paper can help.

    3. Pick your best time. If there is something you need to do that requires concentration and memory, such as balancing your checkbook or following a recipe, pick your best time to do it. Many people with fibromyalgia say they perform best early in the day.

    4. Get treated. Depression, pain and sleep deprivation can influence your ability to concentrate and remember. Getting your medical problems treated may indirectly help your memory.

    5. Engage yourself. Reading a book, seeing a play, or working a complex crossword or jigsaw puzzle can stimulate your brain and your memory.

    6. Stay active. Physical activity, in moderation, can increase your energy and help lift your fibro fog. Speak to your doctor or physical therapist about an exercise program that is right for you.

    7. Explain yourself. Explain your memory difficulties to family members and close friends. Memory problems often result from stress. Getting a little understanding from the ones you love may help.

    8. Keep it quiet. A radio blasting from the next room, a TV competing for your attention, or background conversation can distract your attention from the task at hand. If possible, move to a quiet place and minimize distractions when you are trying to remember.

    9. Go slowly. Sometimes memory problems can result from trying to do too much in too short a period of time. Break up tasks, and don't take on more than you can handle at once. Stress and fatigue will only make the situation worse.

    (Source: The Arthritis Foundation at www.arthritis.org)

    This tip provided courtesy of ImmuneSupport.com
  5. JP

    JP New Member

    Hello Dawn,

    You do have a way with words. Are you a writer?

    I actually left my career based on my declineing cognitive abilities. I suddenly announced my resignation during a meeting. I stunned my peers and myself and my actions could not have been more accurate. I was due for a lofty promotion and it seemed next to crazy that I would give that up.

    So, I am with you on this one. If you find any magic or cures...please be sure to share.

    Take care,
    Jan
  6. DawnR

    DawnR New Member

    Thank you all for your replies, understanding, and suggestions. Indeed I did print out this thread to help me explain my symptoms to the doctor. I hadn't even thought of that - a great suggestion. Maybe I could mail it before my appointment in hopes she'll read it. She wouldn't have enough hands to read it at the actual appointment - one holds the chart and one is on the doorknob. Anyone ever try that route? Again, thanks for your kindness.
    Dawn
  7. ircst

    ircst New Member

    This whole thread touched a chord in me. I too, have a demanding job, and struggle to keep up mentally, now. And I don't want anyone to know. I do think that sleep is a key. I know just what you mean when you say that peope are talking around you and you can hear them but you are not comprehending what they say. I sit in meetings and it feels almost otherworldly. It's scary.

    I loved what RitchMitch had to say -- and the inclusion of the tips and strategies for keeping sharp. I need to use those strategies.

    But I also need to know there are others out there who are experiencig the same cognitive difficulties --- it's too scary to think I might be going through it alone.
  8. ircst

    ircst New Member

    I just wish there could be more discussion on this. It just seems so important -- Dawn -- You just said it so well -- It's just that it's happening to me, too.
  9. achy

    achy New Member


    I only read your post until the word sludge & I couldn't stop laughing....YES, it's the same.

    I've been telling ppl for months that I've gone beyond brain fog.

    "I HAVE BRAIN SLUDGE."

    I used to be an E.O. of a million $$ Corp. Now, cooking oatmeal is a challenge. Go figure.

    Warm fuzzies
    Achy
  10. fmfriend

    fmfriend Member

    Im glad we all seem to be able to have some sense of humor about it or we would really go crazy.I laugh at myself all the time.Even my kids tell me now if they want me to do something for them "mom make sure you write it down" and they tell me over and over again until I remember to write it on a list.It cracks me up some times but, then there are times when it can be scarey when I cant remeber where I am when im driving.Embarasing when I cant remeber things when it comes to people that I have met and cant remember who they are where I met them,what we talked about the last time we talked and sometimes what I said I would do. That causes me great anxiety. Im thankful for you all here because i know im not alone and that alone helps my anxiety about it. I do take ginkoba & ginsing and it does seem to help. I notice when I dont take it anyway. PS ...question about remebering people on this board.Do you all realy remember each other from your posts? That would be a far streach for me,realy immposible for me.Okay I fesed up I take you all new one day at a time. i guess thats all I can do.
    ~~~ Sally
  11. jole

    jole Member

    I agree that this is even worse than the pain. I feel like my co-workers feel as though I am very stuck-up, when in fact I can't concentrate hard enough to do my job and carry on a conversation with them at the same time.

    And like others, I really was beginning to think I had Alzheimer's, especially when I hunted for my dishcloth and finally found it in the fridge on top of the butter. lol -

    Just had a MRI, and was soooo relieved to see my brain is still there!!!!!! This is all so scarey, isn't it?

    Yes, do take a copy of your post to your doc. It says it all, and best of luck to you.

    Friends - Jole
  12. gvmeabrk

    gvmeabrk New Member

    Mine is so aweful it gets really humiliating sometimes.Especially when I make mistakes on my paper work,at my job.The mistakes are so silly that even I cannot believe that I done it.

    I just recently purchased a digital voice recorder to give myself messages for the week so I do not forget to pay my bills,or anything else important.It helps greatly and is much easier than trying to hunt down a pen,and paper.

    I have never drank coffee,but the other day my dads coffee smelt so good and it was so cold I decided to have a cup.It made me feel really pretty good and I was thinking a little clearer.I was curious as to why it made me feel so relaxed and improved my ability to function.

    I tried another 2 cups the next day and got results as well.So I decided to do a search on coffee.I found that 100 mg.is the same as taking 5 mg of ritalin for add/adhd.I have wondered about me having add so I suppose it could be possible that this could be part of the picture.

    I also read where a new study was conducted at Harvard.Results proved that for people who drank 2-3 cups a day their chances for getting type 2 diabetes was decreased.women 30% men 50% they claim that there is something in coffee that helps regulate insulin.

    It also has some magnesium and trace minerals.They claim now that coffee is not so bad for your heart drank in moderation a few cups a day.But it was advised that it be filtered and not boiled as filted takes out some of the oils that it contains.

    So there is some food for thought.So far it seems to be helping me a little, and a little is getting me through my work day.Do a search on coffee and and Harverd and read the articles.
  13. CorgiMom

    CorgiMom New Member

    Dawn,

    I read your message, and all the other messages in this thread, and realized that I am not alone. I came home tonight feeling very scared. I have been feeling overwhelmed in the last few days with how little my brain is working. I am making stupid mistakes that I know better than. I was working on a speech that I have to give next week, and I had to go back and retype (several times) the word "now" because I kept spelling it "know". The words don't even sound alike! Arrggh!!!

    Even tonight, I have had to retype most of the words in this email, because I can't get my hands to type what I am thinking. I am afraid that I will lose my job (where I do analysis all day) because I can't function. I don't know whether to say something to a co-worker who can give me a heads up if they see I am making lots of errors (that I am not catching) or if I should just wait until it becomes a problem..

    Lori
  14. Dobber

    Dobber New Member

    I have this job that I am learning... started in September... and it's very detailed and scattered... I am getting a piece of direction here and a piece there. So with my fibro-fog, sometimes I just sit and look at her like "okay??!!??!!" She says "understand?" and I've learned to say "yeah" and go on because I never do understand... I just make my way through my day, and try to think what would be the "common sense" thing to do at that point. I'm so foggy that I can start a sentence and within the middle of it look up and say 'what was I saying'. I can sit in my Sunday school class and listen to our ministry leader talk and then my husband will ask me about something that he said and I'll not even remember he spoke about that particular subject that day... with all the interaction within the class I get lost in the noise. I think I'm going to get my anti-depressant changed as I'm on Celexa and I'm not sure it's working well, if others are helping folks with the fog and pain. Hope this fog lifts for all of us some day... permanently. I feel like my brain is like that commercial with the fried egg and the brain..when they say this is your brain on drugs, but it's just my brain, period!!! Keep us posted if you find some relief... I can see that we're all in this together and I'd love some help, myself! Prayers and Blessings to ya!!
  15. paintinglady

    paintinglady New Member

    Hi everyone,
    I have just joined you all not to long ago and I'm so happy to have found you. I can't begin to put into words how this has helped, knowing I'm not alone.

    I have just read this whole thread and with everyone's post, I was thinking...that's me. But, if I was asked what I just read I couldn't tell you except that everyone here has brain fog like me.

    I own a small craft business and other than a part timer who works only about 7 hours a week, it's just me. For over a year I feel my mind is going and it is becoming overwhelming. I can only accomplish what I absolutely have to and then I worry I've forgotten something important that I told a customer I'd do.

    It's so strange, I remember product numbers and colors and what to do with them but important things I need to do for the day. I've even make lists and then forget to look at them. Even when they are right in front of my computer where I go to quite often each day. I also just got one of those little recorders but I can't talk into it as I'm speaking with customers and forget to later.

    I can't find the words in the middle of sentences when I am speaking to them or I'll remember the first letter of the word but not the rest. I find myself saying, "oh what's that word it starts with a D" and usually it does but I sure do appear ditzy. Does anyone else do that?

    Customers, even kids are telling me now when they see my glasses laying somewhere so that I'll know, because they've seen me look for them so many times. And I too am always reminded to right things down, but again I have to remember to look at it.

    I have been diagnosed with FM, undifferentiated connective tissue desease (which I'm still not to sure what this means), and the neurophychiatrist who did the thourogh testing of my brain told me I have a good brain although I have major depression and some other form of depression that I can't remember what he called it.

    I'm really scared. Will I be able to continue my business? It's not my life, but close. I love it! If I do continue will my customers start to loose confidence in me? I luckily haven't forgotten any thing I have to remember about products, colors, techniques, & etc. but just talking and sounding like I do have a vocabulary has been an effort lately.

    I'm sorry I'm beginning to ramble. I've probably even lost the point of my post. Just getting scared.
  16. Dee50

    Dee50 New Member

    I think this is the Lyme part at least one part of the Lyme. Cognitive goes to -0 and memory -0. When not treated.

    The older I get the worse it gets.I know that when we get older we loss some cognitive and memory skills but this is nutts.lol

    Take care,
    Dee50
  17. Aberlaine

    Aberlaine Member

    I read what you all have said and you sound just like me. I've worried that I have ADD or Alzheimer's Disease. I've been keeping lists for years. Sometimes I lose my lists. My glasses hang around my neck; my keys get hung with all the other keys. If I start forgetting my routines, I'm done for!

    Seriously, this brain "sludge" scares me, even if I know what causes it. I'm used to the forgetting, what I can't seem to get used to is the fact that I can't think at all, or reason. I'm a member of two book discussion groups. Talk about a challenge - I look at a paragraph and can't even read it. And if I do, I don't understand or remember what I read.

    I have an underactive thyroid and take medication for it. My theory (and it may help some of you) is that I'm undermedicated. My tests come back normal, but my hypothyroid symptoms are still with me at the dosage my doctor prescribes for me. I did an experiment recently. I found a vial of Synthroid at a higher dosage than what I'm taking. I took them for 10 days - and felt wonderful! My mind cleared almost immediately. Now that I'm back on the lower dose, my brain is fogged again.

    I'm calling my doctor in the morning to ask for a new prescription at a higher dosage. I'm going to ask her to treat my symptoms, not the test results.

    Good luck everyone.
  18. zerped

    zerped New Member

    Thank you for your post. I have spent most of the last six months not worried about my physical abilities, but afraid that my family will think I'm demented and start treating me like an invalid. I'm sure part of the panic is due to the fact that five years ago, my father died after 8 years of Parkinson's Disease. The last 3-4 years he was in the advanced "dementia" stage.

    All of the suggestions have been great. All I can add to them is...

    1.----I have stopped worrying about "keeping my space clean" Now, "clean" to me means "out of sight, out of mind." If my cell phone needs to be recharged, I stick it on top of the keyboard on my computer, so I can't miss it. I'll tape notes on the back of my bedroom door, so that I see them whenever I leave the room. I'll take things out that I'll need for dinner and leave them on the kitchen counter, so I don't have to think about what to cook.

    2.----I've noticed a big difference after taking some herbal/natural supplements. When I'm taking my Wellbutrin for my depression and ADD, I'm sharper, but I can really improve things with some ginko biloba, ginseng, and anything else that can boost my serotonin level. ProHealth and Oasis are just two of the companies that have products like this.

    3.----No matter how much later it is, get what you wanted to say out! (lol) Instead of saying "Oh, I'll remember," I just tell the person that although its too late to do any good, here's what I was trying to say. You'll get either laughter or sympathy...or both.


  19. kalaya

    kalaya New Member

    Ok so lets see if we can chip away at your brain haze even if we can only upgrade it by 25% this will still be improvement.So to start with B-12 lozenges and allow me to explain.The cfids docs have found that a large percentage of people with cfids/fibro have no B-12 in there brain.Although if they have blood work done the results will come back that they are perfectly fine and not deficient in B-12.
    This is a false reading because it is not measuring the B-12 level in the brain,only in the blood.To rectify this they suggest either getting B-12 shots or you can go to a health food store and purchase B-12 lozenges but you must make sure that they have magnesium sterate and sorbitol in with the B-12 lozenges[most do].
    You need the magnesium sterate and sorbitol to draw the B-12 into the intestines so it can then make it's way to the brain.The symptoms of b-12 deficiency is neurological disorders.Try taking a dose of 3,000 to 4,000 mcgs every other day.This potentialy can be a great help.
    Now the meds Provigil or Adderall can also help brain function.Provigil is not as strong as Adderall,and the dillema of these meds is that you cannot use them every day or there effectiveness will diminish quite possibly by a very large percentage.But if you were to use them 4 days a week you very well may feel a major upgrade in brain function and clarity on those days.
    Another med along these lines is Ritalin which I will strongly advise against due to it's potential to cause confusion and depression when the drug is wearing off and there is already plenty of this so no need to add more.Someone suggested to you to use caffeine but I doubt this will work or work for very long because you will need as time goes on to drink more and more and more coffee to get the same results.
    I understand only to well the drain of being daily up against a brain that is betraying you and how difficult the most basic elements of life can become.Good luck and God bless.
    [This Message was Edited on 12/19/2005]
  20. sofy

    sofy New Member

    Im alone and ran my own business. Wasnt able to pay one bill for 4 months. Knew what the bills were, knew what the checks were. Could not put them together.

    Had to turn over all my personal finances to someone else and close my business. They gave me SSDI right away thanks to the sleep doc who said I had Idiopathic Hypersomnia and was drug resistant. Just one in a long line of diagnosis until Lyme came along/

    I could read one page of a novel. Knew all the words but at the end of one page had no idea what I read.

    Sleep was impossible and yet was sleepy all the time. The two day sleep test was torture cuz the second day they make you stay awake for 2 hrs and then nap 20 min. The 2 hrs were torture to stay awake.

    Finally got diagnoses with chronic lyme and after 20 months of treatment have read 4 books. Am taking lunesta for sleep and its working. The sleep doc said I didnt need sleep meds. I dont think those sleep test measurements are reliable for deep sleep

    I now see hope at the end of the tunnel.