I’ve Been Saying Fibro Fog Is Like Acquired ADD for HOW Many Years?

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.

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 🙂

Cur­rent Mood: 🙂sat­is­fied
Cyn is Rick's wife, Katie's Mom, and Esther & Oliver's Mémé. She's also a professional geek, avid reader, fledgling coder, enthusiastic gamer (TTRPGs), occasional singer, and devoted stitcher.
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