CFS & memory loss/confusion/fog??

Discussion in 'Fibromyalgia Main Forum' started by KirstyE, Feb 16, 2014.

  1. KirstyE

    KirstyE Member

    Hiya all,

    I am just wondering if anyone else has a terrible time with their memory? Over the past couple of years mine just continues to get worse and worse and we really have no answers as to what may be the underlying issue. I am 31yrs old, so my doctor is rather concerned at how quickly things are getting worse.

    We do not have a formal CFS dx yet, but I thought I might ask around in the mean time to try settle my nerves a little.

    Thanks for reading!
  2. KirstyE

    KirstyE Member

    Thank you so much! I will look into that for sure <3
  3. IanH

    IanH Active Member

    Kirsty, as you do not have a diagnosis of ME/CFS it is hard to say if there are any underlying explanations to your poor memory function. Are you being considered as having ME/CFS? Technically you can never be diagnosed with ME/CFS that is why it takes so long to end up with "You probably have ME/CFS". Memory dysfunction is a defining symptom of ME/CFS.

    The problem usually manifasts as:
    unable to recall well known and well versed events and names (of things and people)
    unable to remember what you read about only minutes ago
    unable to understand what someone says to you even though others think it is perfectly clear (rarely: sounds garbled)
    rarely: unable to speak sense, garbled speech
    unable to string sentences together for a coherent "story/explanation"
    Confusion when doing a job and not doing things in correct order
    become very fatigued or nauseous when trying hard to do any of the above
    foxyking likes this.
  4. Soul*

    Soul* Well-Known Member

    Kirsty sounds very familiar, that where the first symptoms for me too and around that same age (27 back then).

    Not able to recall the names of children I worked with for three years.
    Constantly forgetting what I was going to get or do. Misplacing things like trash in the oven etc...
    Not able to turn around to write it down before forgetting what I wanted to write down.
    Switching a screen on the computer and having no idea why I switched to that screen etc etc.

    And years before it got real serious when I was I think 19 or so I do recall starting to have more and more problems with processing more then one thing at the time. When someone would ask me do this this and this I would be lost at the second this.
    Whilst normally I would be very sharp and have very clear memory.

    An interesting talk of a researcher I heard not long ago was explaining that in people with ME CFS the bloodflow to the brain when sitting or standing up is way less then in normal people. So our brain just doesn't get the amount of blood it needs to have everything function allright and there are no medicine yet to regulate that. So it does make sense we have to lie down more then others to simply feed our brain and not wear out too much.

    This one talks about dizziness which is pretty common too but also explains how the bloodflow is less for people with ME CFS.
    Last edited: Feb 17, 2014
  5. Mikie

    Mikie Moderator

    There are many conditions which can affect memory, especially short-term memory. I have found that with my CFIDS/ME/FMS, my memory correlates to how well I'm feeling at the moment. I am not sure CFIDS memory problems are permanent as in other types of memory problems. I have found that studying a foreign language, doing puzzles, and singing and playing the keyboard help. If it's any comfort, all the other old ladies I hang out with share the same thing as I. We play "Charades" trying to help one another find words and names.

    Stressing over it seems to make it worse. I've found if I can't remember something, I stop thinking about it and, eventually, it comes to mind. I also try to use the usual tricks when I'm introduced to someone new. I associate their names with something I know and I repeat their names in my mind. I recently met Andrea and Lou. I think of her playing "Skip to My Lou" along the San Andreas fault. Just the map of CA in my mind now brings forth their names. The funnier or more shocking the visual, the better and just thinking about it brings a nice smile to your face as you talk to them.

    Love, Mikie
  6. Soul*

    Soul* Well-Known Member

    That is great that you can still learn a new language and play keyboard Mikie!

    I was learning Hindi in the time I got diagnosed and could not keep up with it anymore. I was also studying for my degree in engineering but wasn't able to proces the information anymore.

    Later on I sang in a choir but trying to remember the words of new songs was draining me so much I couldn't even sit anymore without being in teribble pain and crying from exhaustions so had to stop that too.

    I tried to learn to play keyboard too because that was something I could do from bed but find that too is so exhausting that I can not manage. Both the processing where to put the hands and the putting of the hands itself is to draining.

    I do do the braintraining and such and play Candy Crush and that I can do. Though in Candy Crush I make a LOT of silly mistakes and constantly forget to check all the different aspects to be aware of not to crash the game. It is a good training though I guess though I don't seem to improve and keep overlooking the same things constantly. It is wonderous sometimes how some things we still can do real well and others have become impossible. I guess that too could have to do with what parts of the small bloodvessels of the brain and rest of body have become inactive considering what still functions well and where we experience problems. And that is probably very personal too for every indidvidual.

    I use all kinds of memory tools too. I have a weekchart next to my bed on a magnetic whiteboard where I keep track of what day it is with a magnet and what happens when like trash and such. And I use the voicerecorder on my phone to read things aloud so that I can listen to them over and over again and they can sink in better. I also have a pantry app where I list what I used or what should be next to use and where I can sent a list to my caddy app for groceries and have developed methods of where I put the shampoo bottle to remember whether I already washed my hair or not :p I also have a log app on which I can tag of when I ate something or did something or had specific symptoms so I can look back to see if things are related.

    Memory problems where the first symptoms for me that started around '89 I think. It does get worse when I am really exhausted but it hasn't gone away untill now.
    Last edited: Feb 21, 2014
  7. KirstyE

    KirstyE Member

    Thank-you everyone. At the moment we're at "suspected CFS". I am off to see my doctor again today and work out when I have to see the neurosurgeon and I guess only time will tell.

    I most certainly relate to almost all of the above, everything is just becoming such a struggle lately that I'm becoming increasingly fed up :( Even my kids are asking why mummy has such a bad memory and is it because she's getting old? When your young kids pick up on it too, you know something just isn't right "somewhere". It's just a matter of finding what exactly is going on :)

    Thanks again!
  8. Darrae

    Darrae Member


    Early on, my FM was suspected to be CFS. The symptoms are similar. And, I still suspect there could be more going on than FM. Doctors here are not so great at "digging" deeper. Once FM was diagnosed, all were happy to treat that and look no further. I can most certainly identify with your description of symptoms. I have them. Memory is an issue. Fog is common place for me. Cognitive thinking is an issue.

    Jam's right, supplements can and do help. I've also found that using my mind as much as possible and pushing it to go further daily helps. Even something as inane as a search and find video game can help stimulate your brain to force it to remember better. Puzzles. Crosswords. Trivia. Anything that makes you think hard. I find some sort of activity like that every single day to help, hopefully, re-build my mind and make it function maximally.

    I've found other coping measures that work for me at work. My job is a never ending pile of minutia to remember. I've had to find ways to compensate. (I'm the post-it queen LOL). Just try a few things and see what works for you whether it be supplements, or different ways to remember, or a combination. A good combination is my recommendation. Writing things down is a major help as well. Also, repeating something you want to remember over and over in your head 8-10 times helps, oddly.