Cognitive Issues for FMS Patients Long but worth the read

Discussion in 'Fibromyalgia Main Forum' started by getfitat40, Apr 14, 2006.

  1. getfitat40

    getfitat40 New Member

    Today I went through cognitive testing with a Social Psychologist. It was a very long morning, but I feel normal - at least with other FMS sufferers. I have been having a lot of cognitive issues - from forgetting thoughts/words in the middle of a sentence, being unable to find a word, saying or typing the wrong words. People at work started noticing and while I have had these issues when I am tired, it has been a tough 5-6 months.

    The tests ranged from:
    Listening to a group of words and repeating back as many words as I could rememer

    Reading columns of the words red, green, blue - no pattern
    and then a new list of words in the three colors but the word red was in either green or blue and I had to say the word not the color

    The toughest tests involved thinking/reacting with distractions. He started with 3 letters and a number and I had to subtract the number by 3 and then he asked me the 3 letters - couldn't do it.

    It was very frustrated and I felt stupid. He was really nice and told me that my intellect was fine as well as my memory. He told me a study that he did my Rheumy about the link between FMS and cognitive difficulties and how they determined that there is a link but they don't know why.

    Here is the text from their research. I thought it was interesting and worth the read.

    DISTRACTION: Shedding Light on the Cognitive Underpinnings of Fibromyalgia Memory Loss.

    Frank Leavitt, Ph.D.

    Poor memory in fibromyalgia is probably one of its least recognized, but most disruptive forms of symptom expression. It profoundly affects the way people with fibromyalgia live their lives. It adds stress whether they are in a conversation, answering a phone, working on a project, making a bed, checking email, or traveling by car. Poor memory is often central to why the lives of people with FMS go out of control.

    Neuropsychological testing is frequently ordered to provide an accurate evaluation of the cognitive complaint; however, test results often land people painfully troubled by memory disruptions in a paradoxical quagmire. Too often, cognitive testing fails to affirm cognitive decline. Normality of cognitive findings is common place and often marshaled to brush aside patient symptoms, because it is taken to mean that their perceptions are in error. The logic is flawed because it does not account fully for the many ways memory failures arise and overlooks shortcomings in the testing process. The alleged normality on examination may be an artifact of neglected coverage because people with fibromyalgia bring to the examination process a particular type of deficit that is not taken into account by the neuropsychological testing.

    A clue to unraveling the discrepancy between patient conviction and neuropsychological findings may be to consider the flaw as residing outside the boundaries of patients' complaints. Instead, the flaw may be an artifact of the methods used. Perhaps, the standardized measures administered tap the wrong processes, thereby holding patients to the wrong standards. An inappropriately constituted test battery can produce results that misrepresent an individual's actual functional ability.

    Work on-going in patients with fibromyalgia has identified a very uneven memory profile in cases presenting with memory loss. They possess many areas of cognitive strength, and selected areas of cognitive weakness. Patients with fibromyalgia behave essentially normally on the highly structured neuropsychological tests of memory that eliminate distractions. By contrast, adding a source of distraction seriously reduces their ability to remember. The differences in impaired rate between the two types of measures are substantial, and reflect the importance of a source of distraction in assessing memory problems in fibromyalgia.

    Most tests at the disposal of neuropsychologists operate as attention-directed tasks free of distraction and are administered in distraction-reduced environments. A classic example of a test insensitive to distraction is the Wechsler Memory Scale (WMS). This task is generally viewed as the single best measure of memory functioning. Testing narrative verbal memory with Paragraphs from the Wechsler Memory Scale, we found 86% of patients with fibromyalgia behaved essentially normally on this measure of memory that is attention directed and free of distraction.

    By contrast, large size deficits in memory skills arose when a distracting source of information was added to simple measures of memory. For example, the Auditory Consonant Trigram (ACT) tracks memory for a small amount of information following distraction periods of either 9, 18 or 36 seconds. With no distraction on the ACT, a small file of information was fully remembered. However, following a distraction of 9 seconds, the loss of information was disproportionately large. The 9 second distraction erased almost 58% of the same information suggesting that even limited distraction harms recall of new information. In fact, people with fibromyalgia lost simple information at a rate that was almost three times greater than the normative sample.

    In the aggregate, psychometric based evidence of memory abnormality was found in 82.6% of the cases employing the ACT, providing robust cognitive documentation of psychometric based cognitive loss in a large majority of fibromyalgia patients. Inability to filter the effects of distraction may be one reason why new information erodes so quickly in real life situations. These findings might be taken to indicate that the ability to handle the distractions of daily living may be weakened in FMS. Deficits of this magnitude can translate into large adverse effects on the ability to function in daily living.

    Distractions are more than a nuisance variable that cause the mind to wander. They are a vital part of life and central to an understanding of the cognitive underpinning of why people with fibromyalgia do not remember, and why neuropsychologists must take distractions from competing tasks into account in their examination. Tests batteries, if not appropriately constituted, may miss the processes that cause memory to falter in fibromyalgia.

    A close examination of test usage among neuropsychologists in the U.S documents the neglect of distraction in neuropsychological measures of memory. In two recent surveys, not a single neuropsychological test listed in the top 50 measures popularly employed by neuropsychologists measures the interplay between memory and a source of distraction that diverts attention away from the primary task for a period of time. The Auditory Consonant Trigram was not ranked in the top 50 in either survey. In both surveys, the Wechsler Memory Scale was the measure most widely used by neuropsychologists to assess memory functioning in fibromyalgia. Unfortunately, it is also a measure with serious shortcomings for assessing memory complaints in fibromyalgia. It entirely eliminates sources of distraction, which are so prominent in daily recall of information. Instead, it taps cognitive skills in FMS that are largely working adequately, thereby obscuring the very cognitive deficiencies that are salient to their complaints. People can have excellent memory when isolated in a distraction free environment, and extremely poor memory when they must address a source of distraction that divides attention.

    Our on-going research shows that cognitive tests free of distraction do not paint a full picture of memory functioning and helps to dispel doubts about memory complaints in fibromyalgia patients. It suggests that the typical neuropsychological battery does not involve a fair measure of the ability to remember in fibromyalgia. When appropriate cognitive tests are administered, FMS patients with memory problems display substantial psychometric based evidence of impairment. Rather than being at odds with FMS complaints, the findings compliment self-reports and show FMS appreciation of failing memory has a legitimate basis. When measures focus on “real life” memory skills, memory complaints and psychometric based evidence align nicely. It is only by employing measures that assess more representative obstacles to remembering that we can hope to fairly address the cognitive complaints of fibromyalgia patients.
  2. ephemera

    ephemera New Member

    It's not what I do that is so hard, but the interruptions which could be sensory problems of light, noise, smells, etc. or it could be pains in my own body.

    lately I've been trying to understand why it now takes me 20-30 minutes to do a task involving observing & evaluating then writing when I used to be able to do the same task in 5 minutes without a struggle or second thought. Now I have to double check myself when I've created something & return to it to be sure that it's correct. i feel like I'm creating a culture of doubting myself just so I know I've done something right.

    this happens even when I'm having a so-called good day & don't have much fibro fog or pain.
  3. Jeanette62

    Jeanette62 New Member

    Thanks for posting this information about cognitive function and appropriate testing methods for fibromlagia.

  4. getfitat40

    getfitat40 New Member

  5. ephemera

    ephemera New Member

  6. Lolo500

    Lolo500 New Member

    Hi Jeanette,

    Sent a short note the other day to CAAnnie. I've noticed the group of Dr. Powell patients have stopped chatting. What's the latest with the group?

  7. julieisfree05

    julieisfree05 New Member

    One test to beware of is the MMPI. It's a test designed to look for depression, and it asks questions like:

    "Do you no longer enjoy activities that you used to?"

    WELL, DUH!

    I CAN'T do what I used to, so NO!

    I've been tested by two neurophychs that understand the illness, and the tests can be interpreted correctly IF the person scoring it takes the symptoms and physical limitations of ANY illness into account when evaluating the answers.

    The first time I was tested, I had a DOCUMENTED 49 point drop in my IQ, but the idiot who did it didn't understand ANYTHING about FM/CFIDS or the physical symptoms that made me answer honestly to questions like the one above.

    I know a GREAT neuropsych in LA if anyone wants to have this testing done. Any competent psychologist should be able to do this, but if they aren't familiar with FM/CFIDS, they can really screw it up.

    julie (is free!)

    There's no cure for stupid! - Ron White

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