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.
Leavitt F, Katz RS. Distraction as a Key Determinant of Impaired Memory in Fibromyalgia. Journal of Rheumatology (In Press).
We know that FMS is a neurological disorder that causes hypersensitization. Everything is much more intense to a person with FMS—a noise, a change in lighting or airflow, the way fabric feels against the skin, a smell (pleasant, unpleasant, or neutral) that wafts in on the breeze—all of it can be BIG, whereas someone with FMS might not notice any of it. Even when we learn to consciously filter it all out, the distractions are there, taking away processing cycles.
The closest I can come to describing the effect is being a parent. If a child is present, whether or not you are responsible for that child, anybody who is a parent or has extensive childcare experience is automatically tuned in to “where’s the kid? what is she doing? is she okay? why don’t I hear anything? what was that?” You hear too much, things are suspiciously quiet—you know. Some part of you is on alert on a deep level. You are not able to go “off duty” because there is a primal awareness that adults are responsible for children. It doesn’t matter if the child is actually in the ROOM or not—she’s there, and you know it.
As much as I adore my girl, and as much as I love spending time with her, I’m not totally out of Mommy Mode, even now that she’s a very responsible teenager, if she’s in the building. If she’s elsewhere, in the care of someone in whom I have implicit trust, I can be Cynthia rather than Mommy.
Mommy is not able to be wholly focused on anything else in the world—not writing, studying, nothing. Maybe I’ll manage meditation when the girl is grown and gone (but I doubt it).
Fibro hypersensitivity is like that, so everything is distracting, even when we aren’t aware of the distraction. That leads to poor memory, poor concentration, slower memory, having more trouble learning new material, and generally poor cognitive processing compared to pre-fibro levels. People who were functioning at very high levels pre-FMS might not show it much. It’s obviously going to be far more noticeable on days when pain and fatigue are particularly bad — but there are definitely cognitive deficits.
I don’t think I’d qualify for Mensa again if it required a re-test. Not that I’m interested in rejoining at the moment, but I’m glad they don’t insist that I prove that I’m still qualified 🙂