Discussion in 'Fibromyalgia Main Forum' started by mindyandy420, May 27, 2008.

  1. mindyandy420

    mindyandy420 New Member


  2. mezombie

    mezombie Member

    This is one of my most difficult symptoms, and one of the main reasons I can't work.

    I think it's very much part of ME/CFS for many of us.

    There are times when it's better, and times when it's worse.

    When I am able to read and understand the written material, I usually can't remember it. That goes for some of the longer posts on here, as well.

    I wish I knew what the answer was! I can tell you that you are not alone.

    Hang in there!
  3. Missizzy

    Missizzy New Member

    I absolutely could not read for the life of me for at least two years after my onset. Books were by far the hardest for some reason. Just like you said, the words just swam together and made no sense. This crushed me as I've always been a voracious reader and here I was stuck in bed. I used to have three or four books going at once. I also couldn't listen to books on tape as they were too stimulating. It was not fair!!

    After about two years, I set up a program for myself. I chose Steinbeck as I love his writing and it is clear and concrete. I pushed myself to read a paragraph at first and just thought about it. After a month or so, I was up to 4 or 5 pages a day. I finished "The Wayward Bus" in a few months and I was so proud of myself. It was almost like the curse was lifted and I'd re-taught myself reading. Now, I read one book at a time, quite slowly. I have to stop often and reread but I enjoy it immensely.

    Interestingly enough, the same thing happened to me with handwriting. I've always had perfect penmanship. After the onset of my illness, I lost all ability to write cursive and printed just like a five year old. I could not sign my name on contracts or even my ballot. I was just floored. It was odd because I could still keyboard and knit, for heaven's sake. My husband bought me an older electric typewriter to fill out forms and to write simple notes. Once again, I secretly started working on re-teaching myself. Over the course of about 6 months, I was probably back to 75% of my former ability. What a relief. I still haven't regained my signature, though.

    My point is, don't give up. From what I've read here on the board, this is a common problem and it does wax and wane. So, don't sell your favorite books just yet. If your ability comes back, you'll be shocked at how wonderful it feels to read them.



  4. gapsych

    gapsych New Member

    I know exactly what you are talking about.

    I am almost a compulsive reader but there are times when it just makes me too dizzy.

    Fortunately, this does not happen all of the time. When I can read, I find that sometimes I space out and have to read a paragraph over again.

    What is strange is that I sometimes get names of the characters mixed up and I also have great difficult remembering someone's name when I see them. Wonder if that is related.

    I have learned to enjoy books on tape or I guess now on DVD if you do not get too much sensory overload from sounds.

    I also find if I am watching a DVD that sometimes I have to rewind a lot to understand what is going on.

    I can not listen when I go on long trips because of the motion of the car.

    But I like to lie down in a darkened room and listen.

    Like another poster said, because of the issues of sensory overload, I can not work. Well the pain and fatigue too.

  5. spacee

    spacee Member

    I used to could read some only if I was totally rested...like at my mother's house. And the book had to be pretty easy.

    There is a lot more I would like to know about this DD but I just cannot comprehend it.

    It makes the right front of my brain hurt too.

  6. Debra49659

    Debra49659 New Member

    I have re-read so many old books because i can't remember them from the first time round:). also, when alot of activity is going on around me i can't follow a conversation for anything. i get so distracted so much of the time.

  7. Rafiki

    Rafiki New Member

    You say that people "are not listening" but I think they/we are! Many, many people have pursued a Lyme diagnosis.

    You also say that "don't believe that so many people are coming down with some mysterious illness that has never been heard of before".

    Actually, there have been documented outbreaks of ME since, at least, the 1930s. They have been variously known as benign myalgic encephalomyelitis, Akureyri Disease, Iceland disease, Tapanui flu, Atypical poliomyelitis, Royal Free disease, Epidemic Neuromyasthenia (ENM), Epidemic Vasculitis, Raphe Nucleus Encephalopathy...

    There was an outbreak among the nursing students in the hospital where I was born which began a month to the day before my arrival in 1952. It's not new.

    I appreciate all of the information about Lyme. I have asked for more info in the past due to my positive response to antibiotics. Please don't think that people are not listening simply because they are considering what you have said or if they just don't agree. There are many theories put forth my many intelligent and informed people. We don't know which one (or more than one) will prove to be right.

    Finally, you wrote, "Some of you are so set on having this 'mysterious illness' and suffering for 10 or 20 years with it or maybe even for life." I would ask you, most respectfully, to refrain from accusing people of being "set on" having a disabling illness or being otherwise invested in staying sick. It is insulting, unkind and, forgive me for being a little bit blunt, uninformed.

    I would imagine you feel very frustrated as you seem to honestly believe that you could help many people if they would just listen. Please trust the people are listening. We may all react differently to what we hear but we have listened and continue to do so.

    Peace out,

  8. Rafiki

    Rafiki New Member

    I'm sure you didn't mean to be disrespectful.

    I never doubted that your heart is in the right place and that you really want to help people.

    I do think it is helpful to suggest all the possibilities to people: Lyme, Celiac, MS, Lupus and on and on. There are many possible suspects that must be ruled out or in.

    It's always a tricky business to make assumptions about other peoples motives and the inner workings of their hearts and minds.

    Let us all give each other the benefit of the doubt.

    Peace to you, Sutherngrl,
  9. frosty77

    frosty77 New Member

    I for one like to hear anything about Lyme Disease as I am pretty convinced that's what is causing this and other similar diseases!

    With regard to reading, I was once a voracious reader (I carried a book wherever I went, and read it as often as possible - while in cars, bars, wherever and whenever. Even as a child I would open my door after bedtime and read by the light filtering in).

    Now I rarely read due to all the afore-mentioned issues. But one good thing is that if/when I do read, I don't remember that I've read it before, so it's like a new book each time!

    Also, luckily for me, my penmanship was always horrible, so deteriorating penmanship is not noticed :)
  10. Rafiki

    Rafiki New Member

    I often look at all my books and consider that even if I never acquired another one I could happily reread what I have for the rest of my life. I hardly ever remember titles and I have been 100 pages into a book before realizing that I've read it before.

    I have the penmanship problem, too. I find that very disconcerting. It's like there's a glitch in the wiring between my brain and my hand when it's writing. What was once a fluid act, needing very little in the way of conscious thought, is now a very different experience.

    Sometimes my typing wiring begins to short circuit, too.

    It would be very freaky to be alone with these symptoms. I'm so glad that I'm not!

    Peace out,
  11. mollystwin

    mollystwin New Member

    You sound so much like me when I first got my diagnosis!! I suffered for over 15 years until I figured out it was lyme disease. Once I had my lyme diagnosis I was determined to tell everyone who had CFS/FM, MS, etc to get tested for lyme to rule it out. I agree that not all have it, but for those who did and didnt' know, I wanted them to get better too.

    We truely do not want others to suffer like we did. I just wish it was easier for all of us with lyme, cfs, fm, ms or whatever to get properly diagnosed and then recieve proper treatment, and respect!!

    [This Message was Edited on 05/28/2008]
  12. tialisa

    tialisa New Member

    Thank you to Rafiki and all those who wrote about the memory loss, loss of nice penmanship etc. I thought I was
    the only one like this. The few ME/FMS friends I have never can seem to relate to an cognitive difficulties or
    'new impairments' I haven't been able to work or finish college for about 25 years. I don't even remember my times tables and I've always read a great deal. My heart
    goes out to all who are experiencing these syptoms.

    Much love and appreciaton

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