Reflections on FMS Treatment, Research, and Neurotherapy

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joints, bleed easily, and may have hernias. There is no fully effective ... Severe coccyx in- jury liom a fall onto ... tailbone that was responsible for continuing pain.

Reflectionson FMS Treatment,Research, andNeurotherapy: CautionaryTales Mary Lee Esty,PhD

SUMMARY. Treatncnt planning l'or a paticnt diagnosedwith t'ibromyalgia (FMS) rcquires n e u r o t h c r a p i s t os c o n s i d c ra w i d c r a n g co 1 ' p o t e n t i acla u s e sd u r i n g h i s t o r yt a k i n g .E l f c c t i v c t r e a t ment planningol'tcninvolves intcrventionsliom multiple specialistscoordinatingtreatments.Crea t i o n o f a t r c a t m c n tt c a m m a y i n v o l v e ,i n a d d i t i o nt o n e u r o t h e r a p ym , c d i c a l s p e c i a l t i c ss u c ha s inl'cctiousdiseasc,physical medicine,ncurology,nutrilion. and rhcumatology,as well as cranial s a c r a al n d m y o f a s c i atl r c a t n r c n t sa.n d s u r l ' a ccel e c t n l r n y o g r a p h(ys E M G ) .U n d e r s t a n d i n tgh c s i g n s of common cornplicationsin thosc diagnoscdwith FMS is vital to clfcctive treatment.doi:10.1300/ JlU.lvl0n02-05lArticle copie.sut'uiLubk.frtra.fle.lrcm The LlLttvorthDocumentDelivery Servtce: I 800-HAWORTH. A 2006h l-heltux,ortltPre.s.r, Inc.,\Llri.ghts reservetl.f

KEYWORDS. Ncr-rrothcrapy. f ibromyalgia,chronic l'atigucsyndromc,chronic pain, chronic inl'cction,rnyol'ascialpain

Lessons learned fiorn the experiencesof' subjectsin thc Rush-Presbyterian-St. Luke's Medical Center and NeurotherapyCenter of' Washingtonfibromyalgiastucly( Krar,'itz, Est1, Katz & Fawcett, 2006) provide a rich and evolving store of informationfor neurotherapiststreatinganyone diagnoscdwith ['ibromyalgia(FMS). The coexistingconditionsdescribedbelow are not provcn caLlses of FMS, eventhoughit is oftcntcmptingto makcthatassumption.However, rnaking such a link is a taskthatwill rcquiremore rescarch.Nonetheless,anappreciation of commoncomplications oftcn accornpanying thc FMS diagnosticlabel planning.This is essentialto good t.reatlnent

note is offered as supplementaryinformation that rnay be helpful to therapist and patient alike. Gctting clear and rcliable researchresults with peoplediagnosedwith FMS is very difficult. The ofllcial criteriafor thisdiagnosiswere cstablishcdfor rescarchpurposesin I 990 as a resultof a consensusconference(Wolfe et al., 1990).Two groups o1'doctorsevaluatedpatientswho had beendiagnosedby physicians consideredexpertson thecondition.The resulting consensusopinion, arrived at independently betweenthe two groups,wasthatall of the paticntsexpertlydiagnosedwith FMS exhibited I I of l8 tenderpointsin selectedsiteson

Mary Lcc Esty is al'filiatedwith the NcumtherapyCicntcrol'Washington.5.180Wisconsin Avenue, Suite 221, Chevy Chasc,MD 20ll I -5( E-nraiI: [email protected] ). lHaworth co-rndexingenlry notcl:

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the body. This work, which was originally intendedonlyforuse in asinglestudy,becamethe standardfor diagnosingFMS. Full discussionof the difficultieswith these criteriawould be lengthyandinconclusive.The importantpoint hereis that diagnosisof FMS is complicated.FMS is a conditionthatappearsto have multiple causations,a complex interplay and mix of psychophysiologicaldysfunctions, soft tissue damage, physical and emotional trauma,infectiousagents,toxic exposure,and genetic syndromes.Some of thc Rush study participants(Kravitz et al., 2006) had a combinationof theseproblems.The resultingvariety of symptomsthat can be presentin one person makestreatmentplanninga challenge.The res diff'erent mainder of this paper discusse etiologicfactorsthat may be involved with the varioussubtypesof FMS andthcirimpltcations for treatment.

CENTRAL NERVOUS SYSTEM FACTORS As a resultof following sorneof the subjccts in theRushstudyevcnalterthestudyendcd,the NeurotherapyCenterof Washingtontherapist\ cameto a deeperunderstandingof the liustrations of patientsand cliniciansalrke.Despite currentresearchestablishingthat peoplediagnoscd with FMS are suff'eringfrom a ccntral nervoussystem(CNS) problern,thereis still a perceptionamong somehealthcareproviders probletnattdthatpsythatit is a psychosornatic One leado1'choice. is the treatment chotherapy FMS is a distinct states that ing FMS researcher mediinformed deservingof clinicalsyndrome undercal careand continuedresearchto better pain (Russell,1999). standchronicwidespread (200 I ) reportthatpain ratinss Staud,Priceet al. in responseto a heat stintulusare greaterilt fibromyalgiasubjectsascomparedto controls, providingevidencefor centralabrtormalplin , a r i lc t a l . ( 2 0 0 1 ) m o d u l a t i o nc o n t r o l sS . taudC write that "FMS subjectsrequiredmuch lower mechanicalpressuresthan controls to elicit wind-up, indicating abnormal pain mechantay alsoplay nisms.Thesesamemechanisms an irnportantrolc in FMS pain" (p. 791.Wittrup e t a l . ( 2 0 0 1 )I o o k e da t m a r k e r so l ' C N S i nj u r i ' throughmeasuresof inflarnrnatorylnarkersill

cerebrospinalfluid and serum.They found an imrnuno-inflammatoryprocessin the CNS that supports"a model of immune-mediatedbrain injury leadingto abnormalsensoryprocessing allodyniain FMS" (Wittrupet and widespread a l . . 2 0 0 1 ;p . 8 l ) . T h e y a l s o s u g g e stth a t t h e i r findings supportsubgroupingFMS patientsby etiology. is reOf particularinterestto neurotherapists scanSPECT fiom brain scans. Using search ning, Mountz (2002) identified decreased bloodflow in thethalamusandcaudatenucleus. These are areasthat generally modulate pain groupconcludedthat". . . signals.The research specificpartsof the brain'slimbic system,the thalamusand caudatenucleus,have decreascd bloodIlow. Theseareasseemto modulatepain by inhibitingincomingpain signals.If they are not I'unctioning normally,thcy will not be able to inhibit pain signals.Fibromyalgiaseemsto 'turn of f' theseareas,whichallowspainsignals to continue uninhibited through the brain"

(p 38) overthelast Basedon my clinicalcxperience decadewith manyFMS patients,it is dif ficultto agreewith the suggestionthat fibromyalgiais of a changein brain function.Given the c:ause what is now known l'rornQEEG,imagingdata, and patienthistories, traumao1'sometypc has changedthe brain'slunctioningandthisis the birtnec'hemicalconrribLttionto the onset of fibromyalgiasymptoms.The thalamicareao1' the brain is especiallyvulnerableto physical damagefiom blunt and whiplashtrauma.The sellaturcica(Turkishsaddle)is thebonycavity The piin which the pituitaryglandis encased. tuitary stalk passesthrough a small opening This cozy little leadingto the hypothalamus. dwclling is highly protectivc ot' the mastcr gland,butthedesignhasa significantdrawback to overall functioning following any head or dcceleration. traurnainvolvingacccleration When any mornentumcausesthe headto be accelcrateclor dccclerated,the brain, suspended in fluid. bounccsin relationto the forcesinsuch volved,or is twisteclin anyrotationalevent ol'the strctching rcsult is a asa carspinning.The with hormone pituitary stalk anclinterf-erence pituitary is a key player tunctionsin which the responsible pitr"ritary is (Sil ventran,2002). The for regulatinghormonesthataffectmanyorgan svstems.Thvroid. sex and adrenalhormone

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problemsareonly a few issuesthat can follow traumato this part of the brain. Donaldson,Donaldson,Mueller, and Sella (2003) identified sub-groupsin fibromyalgia basedupon quantitativeEEG (QEEG) brainwave patterns.This researchpointsto a signifiasthey cantCNS componentin FMS, Perhaps, in suggest,there is an EEG signature people with fibromyalgia.SchwartzandBegley(2002) provide a lively and well-documentedhistory of researchon themechanismsandapplications for treatmentsbased on neuroplasticityand give hopefulnewsaboutthe ability of the brain to changein responseto stimulation. An increasedunderstandingof the role of brainfunctionon pain and on chronicillnesses is appearingmore I'requentlyin pain rcsearch literature. Researchers(Tennant, 2003) presentingat the American Pain Society and the American Academy of Pain Medicine rcported, ". . . clear evidence that chronic pain produces cardiovascularand inimunologtc complications.Even more contpellingwas a study by Soraand Associatesliorn Northwestern Universitythat comparcdbrain nrasstn The chronicpainpatientswith normalcontrols. chronic pain patients'gray lnatterhad significantly lessdensity. . . Aithough ncrvoussystem-typepain,per se, is in early stagesof research,practitionersand paticntsnccd to bc keenly awarethat there is growing evidence painmay produccpathologic. thatuncontrolled n e u r o l o g i ci .m m u n o l o g i cc, a r d i o v a s c u l aarn d endocrinechanges"(p 8).

acceptthe challengeto As neurotherapists improve the CNS functioning of people diagnosedwith FMS, the body must not be forgotten.Soft tissueand structuralproblems,aswell as endocrinologicalissues caused by biomechanicalforcesof headtrauma,must be addresseddirectly. Infectiousagentsare often a constantdrainon energyandnutrition,andthey may have enteredthe CNS. All of theseproblems must be detectedand properly treatedto maximize clinical benefits.Some caseexamples illustratecommon problemspresentedby FMS patients.

INFECTION

D is a 5l -year-oldwoman who enteredthe Rush study at age 46. She was in the placebo but group first, anclhad no positiveresponse, had some significant,but not complete,relief from the activetreatntent.There was improvement,but shcstill hadsomesymptomsevenafter some post-studyFNS treatment.She returnedl'ormoretreatntentin late2005with pain all-over.aching,and cognitivefogginess.Surface EMG (sEMG) evaluationrevealed8 irnbalancesof l3 musclestestcd,many of them extreme imbalances.Responseto the EEG stimulationtreatmctltledto rapidimprovement in cognitivefunctioning.Three sEMG treatgaveher sometoolsthat diminment sessions ishedpaina bit,butnothlnghelpedwith theaching. She was recentlydiagnosedwith Lyme diseaseand hasjust beguntreatment.Her parlVeurotherapy tial responscto treatmentsis typical of those who havea chronicinfection. Even if theCNS dysfunctionfactorof FMS lrritablebowelsyndrome,ulcerativecolitis, etiology is accepted,does it follow that treatand infectionssuch as mycoplasmas,herpes, rnentto corrcctonly thcCNS contributionto the and Lyme diseaseare common in chlamydia for recovery?It is my besyndromeis sufl'icient with FMS diagnoscs.Theseconditions thosc ol'CNS dysfunctionis an csliel'thattreatment sentialcomponentof any trcatmentplan for re- will maketreatmentresponseguardedat best. (2003)wrote covery frornthesymptomsof FMS, but in most As anexarnple,DennisandBright will bc a paperon treatingfungal sinusitis.They had casesit is not sufficient.Neurotherapl, in thosewho weref'unctioning collecteddata on 624 patientstreatedover 14 mostsuccessful of fibromyalgia,chronic physically traumaticonsct.It will yearswith diagnoses prior to a well (CFS), arthritis, and other syndrome fatigue u'ith in those change produce significant not patients were treated These diseases. immune exposure, toxic inf'ection. signif-icant ongoing where indicatcd, and surgcry with nrcdicatiotts, psychologi Cottrplicated datnagc. or structural standards to specific cleanup environmental are as cal trauma is another cornplication. of funsal presence."Neurofeedbackwas atgeneticsyndromes.

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temptedwithout successbeforeenvironmental cleanupwas accomplished"(p. 89).The conclusion was that wellnessand effective neurotherapy can be achieved only ufier appropriate interventionstargeting the inf'ectiousprocess are completed. Nicolsonet al. (2000)hasdoneextensiveresearchon the natureof Gulf War Illness,documenting the difficulty of differentiatingFMS from CFS and rheumatoidarthritis.Thev concluded:

Viral infectioncan even exist inside muscles.One recentreport (Douche-Aouriket al., 2003) concludedthat, "E,nterovirusRNA has beenfoundpreviouslyin specimens of muscle biopsy from patients with idiopathic dilated cardiomyopathy,chronic inflammatory muscle diseases,and fibromyalgia or chronic fatigue syndrome(libromyalgia/chronicfatigue syndrome).Theseresultssuggestthat skeletal muscle may host enteroviralpersistentinfect i o n " ( p .4 7 ) .

Bacterialand viral inf-ectionsare associPARASITES A|VD CHRONIC PAII\,i atedwith many chronicillnessesas causative agents,cofactorsor more likely as A parasiticgastrointestinalinfcction can opportunisticinfections in immune supcauseextremesofitissuepain.A clinicalexampressed individuals.Thc prevalence of inple was found in one 23-year-oldpatientwho vasive pathogenicMvcoplusma species hada parasiticin1'ection thatcausedinflammainfections (and possibly other bacterial tion of thedescending colonthatleadto inf-laminfections,such as Chlantydia,Borreliu, mationof the tissuesaroundthe left hip with etc.) in patientswith Chronic Fatrgue swellingand intensepain.Inflammationof the Syndrome,FibromyalgiaSyndrome,Gulf transverse colon lcadsto inflammationof surWar lllness, RheumatoidArthritis and roundingsofttissuessuchasthegenitof'emoral, otherchronic illnesseswas significantly lateralfemoralcutaneousand femoralnerves. higherthanin healthycontrols.When wc and thc fasciaconnectingthe diaphragmto the examined chronic illness patients for Tl2 areaof the spine.Inflammationol-these rnultipleM y coplusnta speciesi nf'ections. structuressetsup a cycle of nerve irritation, we foundthatalmostall natientshadrnul- swelling,compression, reducedrangeof mot i p l c i n t r a c e l l u l airn f c c i i o n s s. u g g e s t i n g tion. anclincreasecl nerveirritation.The efft'cts that rnultiple bacterialinfcctions conr- are widespreadcausingpain even with proper rnonlyoccurin certainchronicillnesspa- breathingand normal movement,resultingirr tients.Thesepatientsgenerallyrespondto morebracingagainstpain,leadingto moreconpanicularantibioticsi1'adrninrstcred long- strictionol' movement.incrcasecl irritationand part recovterm,but an important ol'their inllammation. Breaking this cyclc requires ery involves nutritional supplerncntation eliminationof the infectionlbllowed by myowith appropriatevitamins,minerals,irn- l'ascialreleaseand re-educationo1'body memuneenhancement andothersupplelnents. chanics.Detectionand diagnosisof some of Nutraceuticalsappearto be necessarytbr thesein1'ections can be a cornplicatedproccss recoveryandmaintenance of a strongirn- bLrtistheneccssary first stepof a trcatmentplan. munesystem.ln addition.patientsshould bc removedfrom potentiallyimrnune-clepressingdrugs,suchas someantidepresGEI,IETIC SYIVDROMES sants,to allow recoveryo1'theirirnmune systems.Other chronic infections(viral) Ehlers-DanlosSvndrome(EDS), a genetic may also be involved in variouschronrc condition,is sometimesfound in patientsdiagfatigueillnesseswith or without rnyco- noscdwith l-ibrornyalgia. EDS is a rareherecliplasmal and other bacterial inf'ections. tary connectivetissuedisordercharacterized andthesemultipleinl'ections couldbe rm- by unusuallyflexibiejoints, very elasticskin portantin causingpatierrtrnorbiclityand lundlragilcsofttissue.The skincanbestrctchcd resultingdifficultiesin treatingtheseill- sel'eralinchesand yet retainits originalshape ncsses.(p. 89) on release.Peoplewith this svndromebruise

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easily,have a lot of sprainsand dislocationof joints, bleed easily, and may have hernias. Thereis no fully effectivetreatment,but some physicaltherapycan strengthentendonsiuound thejoints.A mistakendiagnosisof FMS is unfor peoplewith EDS becausethe derstandable natureof the tissuescreatesa vulnerability to injunesfrom manyof life's ordinaryactivities. Another geneticcondition that can compliof FMS is von Willebrand'sDiscatetreatment ease(vWD). It involvesa deficiencyof a protein that affects platelet function, resulting in slowed cessationof bleeding.Plateletsthat shouldform the first stepin repairinga cut are not active,so bleedingdoes not stop quickly. Peoplewith vWD bruiseeasily,and bleedexcessivelyaficr a cut or from dental work. Rccovery from any invasive procedure is prolonged, and even a colonoscopy can be physically traumatic.Fatigue fionr iron deflciencybecomesa problem.

risk for chronic painful complicationssuch as fi bromyalgia" (Pellegrino, 2O02:p. 14). Brown (2001) documentedG forces to the brain resultingliom low-speedrear-endcollisions.In the first 100 millisecondsaftercollision,thecar movesfiom underthebody andthe torso rises.The forces involved are compression, torsion, and shear.lt is the compression and shearthatcausebig problems.In 200 millisecondstheheadstartsback andrises.Between 200 to 300 millisecondslater, the body starts forward--evenf asterthan it went backward-but the head always lags behind, and then whips forward. One hundredmillisecondsafter a 20 mph impact,the accelerationinsidethe skull reacheslSGs. "The most important factor regarclingmotorvehiclecollisionsandiniuriesis how much(or how little) of thecollisionforceis absorbedby the occupants"(Pellegrino,2002; p.3)

VESTIBUIAR DAMAGE STRUCTTJRAL IIVJURIES

Scriousvestibularproblemscanresultliottt Accelerationand decelcrationforceswreak headtraumaandbe coexistentwith theFMS diexquisitedamageon the brain's internalstruc- agnosis.Thesemustbe takenvery seriouslybetures leading to cognitive dysfunctionsof cause the condition affects all treatment of as well as sEMG. memoryiindattentionaswellas to theinability thesepatients.neurotherapy theneedfor careillustrates exarnplc r\ clinical stirnuli, noxitlus of thebrainto properlyhandle undueuse of avoid planning to ful trcatment includingvestibularproblems.Structuraldamageresultlngliorn physicaltraumais ofien in- resources. Onc paticntrcspondcdwellto FNS with imvolvedin theonsctof FMS. Severecoccyxinjury liom a fall onto thc tailbonc ofien occurs provementin the cognitive area.Treatmentof or fiom sportsacti\'- thc muscleimbalanceswas temporarilyhelpduringstairwayaccidcnts. ities.This can bc a causeol chronichcadache. lul, but would not hold.ShehadinnereardamWhiplashcancausea reversalof normalcurva- age that intcrpretcd an off-center posture as This keptthemusclesin chrontureol'thespine(cen'icallordosis).Thiscauscs beingbalanced. thatreinforcedmuscle positrons stre ssful ically physical skilled rcquires pain and extreme pain. This conditionmustberes and imbalance therapy. people requiretreatment o1'these Many paired. lnost comthe are vehicle acciclcnts Motor vertigo. positional paroxysmal whipfor benign and injury. mon causeof traurnaticbrain result frorn can that clysfunction Another prccipitating lashis a cournronlyreportedas a fisperilymphatic ts a trauma causeof FMS. The cffcctsof whiplashcxtend biornechanical sethat causes ear tnner in the opening far beyond the muscle damage that causes tula,an repaired be sometimes lt can headacheand the neck/backspasnlsthat can vere dizziness. with imlcadto chronicpain.Damageto theccntralner- surgically.Anotherpatientresponded but the functioning, voussystemresultsfrom physicalforceson the provement in cognitive on the fall serious brain insidethe skull. "Whercverthereis mo- pain persisted.She had a mentum,thereis a potentialfor tissueinjury. tailbone that was responsiblefor continuing Whenevera whiplashinjury occurs,therets a pain. Appropriatc rnyofascial treatment has

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beenhelpfulin reducingpain.Suchfalls are oftena factorin chronicheadache.

thresholdlevels. In M. Pclligrino (Ed.T,Whiptushto Jibromt'algict(p.141.Norrh Canton,OH: ORC publicahons. Nicolson.G. L.. Nasralla M. Y., Franco,A. R., DeMeirleir, K., Nicolson,N. L. Ngwenya,R., cr al. (2000).Role ol' CONCLUSION mycoplasmalint'ectionsin fatigueillnesses:Chronrc latigue and l'ibromyalgia syndromes,Gulf war illIn summary,takingthehistoryof peoplediness and rheumatoid arthritis. Journal rf Chronic agnosed with FMS shoulddelveinto greatdeF utigue St'ndrome,6 (314).23-29. tail aboutheadtraumaanclpastillneisesthat Pc'lleenno,M. J. (2002). From v+'hiplu.sh to Jibromt,rrlgla.North Canton. OH: OI{C Publications. werenot usuallyconsidered significantat the R u s s c l l .L J . ( 1 9 9 9 ) .I s f i b r o m y a l g i aa d i s t i n c rc l i n i c a l time.This meticulous investigation is irnporentrty'/Thc clinical tnvestigator'sevidence.Baillieres tanteventhoughthoroughattentionto thedeBe.rt Practice in Reseunh Clinit:al Rheurnutologl,, tailsof their historyand symptomscan seem 1 J ( 3 ) ,4 4 5 - 4 5 4 . somewhat tangential to theirmainconcerns. In- Schwartz,J.. & Bcglcy, S. (2002). T'ltemintl und the volvementof properspecialists brain. New York: Rcgan Books, Harper Collins. is then required.Neurotherapy alonewill of'tcnnothelp Silr,crntan.S. (2(X)2.April). Orolacial anclpharyngeal disordcrsassociatcdwith traumaticbrain iniurv. prethesepeople. \ t ' l l l a t i ( ) nl r t t h c \ e u Y t r r k A c a d e n r y9 l i r u u l n a t i c Brain Injury (bnlercncc, NYt-t School ol'Medicrne, Ncw York Clity. REFERENCES S t a u d ,R . . C a r i l . K . . V i c r c k . C . J . . P r i c e ,D . D . , R o b i n s o n .M . . ( l a n o n .I t . . c t a l . ( 2 0 0 1 ) .M e c h a n i c am l usclc Brown, C. R. (2001. Septcmbcr).In jurt', biomet'hunicul strntult rcsult in enhanccd tcntporal summation of' Iruumu andforensic pructic.e.Paperprcscntcdat the secondpain Iwind-upl in fibromyalgiasub.jects. lAbA m c r i c a n A c a d c m y o f ' P a i n M a n a s c m c n tC o n l c r s:ract)Jountul ol Mu.r