pain no energy - the ehlers danlos society

Russek: hEDS Self-management for kids/teens. Not medical advice. May be copied/distributed in present format. 9/2017 1

Self-Care for Kids & Teens with

Hypermobility Spectrum Disorder Dr.LeslieRussek,PT,DPT,PhD,OCS

ClarksonUniversityWhat bothers you the most?

HypermobileEhlers-DanlosSyndrome(hEDS)isalsoknownasHypermobilitySyndrome,JointHypermobilitySyndrome,andEDS-HypermobilityType.HypermobilitySpectrumDisorder(HSD)referstothewholerangeofconditionsthatincludejointhypermobility.ThishandoutwillusethetermHSD.England,whichhasamuchmoredevelopedsupportsystemforpeoplewithhEDS,hasanexcellentorganization,HypermobilitySyndromesAssociation(HMSA),whichhasaterrificwebsiteforchildrenandadolescents:http://hypermobility.org/help-advice/kids-teens/.TheEhlers-DanlosSocietyalsohasexcellenton-lineinformationat:https://www.ehlers-danlos.com This handout is not medical advice. It is a work in progress. If you see errors, please let me know: [email protected]

• School• Sport• Play

• Worry/anxiety• Headaches,stomachpain,

• Peoplenotunderstanding

• Troublesleeping• Daytimefatigue• Unabletoexercise

• Hips,knees,feet• Shoulders,elbows• Lowback• Neck,etc.

Pain No Energy

Trouble Doing Things

Other Problems


UnderstandingYourPainHowmuchdoespainbotheryou?Usethethermometerscaletotheright.

• Wheredoyouhavepain,andwhatactivitiesmakeeachpainworse?Whenyoufigureoutwhatpositionsoractivitiesmakeyourpainworse,youcantrytofigureoutwhy,andfixthereasonforyourpain.Hereareafewexamples.a. Canyouchangehowyoudothingsthatmakeyourpain

worse?Sometimesittakestimeforthepaintodecrease,andyouwon’tnoticethingsarebetterrightaway.Forexample:i. Ifsittingatyourdeskatschoolmakesyourneckhurt

orgivesyouheadaches,canyousitwithbetterposture?

ii. Ifwalking,running,orice-skatingmakeyourfeethurt,canyouputarchsupportsintoyourshoes?

iii. Ifwritingmakesyourfingersorhandshurt,itmighthelptousethickerpensorfingersupports.

b. Doyouhavetightmusclesthatpullyourjointsoutofposition?Youmightneedaphysicaltherapisttohelpyoufigurethisout.i. Ifwalkingmakesyourlowbackhurt,youmighthavetightmusclesatthehip,

andmightneedtostretchthem.Itisimportantthatyoudon’tstretchjoints.ii. Ifyouhavepainaroundyourkneecaps,especiallywhengoingupordownstairs,

oraftersittingforawhile,youmightneedtostretchmusclesontheoutsideofyourleg,andstrengthenmusclesontheinside.

c. Youmighthavemusclesthatareweakanddon’tprovidesupporttothejoints,orthatarenotcoordinatedenoughtoprovidegoodcontrol.Again,youmightneedaphysicaltherapisttohelpyoufigurethisout.

i. Weakneckorstomachmusclesallowtoomuchmotioninthespine,whichcancauseheadaches,neckorbackpain.

ii. Weakmusclesaroundthehiporshouldercanallowthosejointstoslipandfeelunstable.

iii. Someexercises,sports,orevenWii-FitBalancegamescanhelpimprovestrengthandcoordination.It can take some detective work to figure out what activities or positions are causing pain. A physical or occupational therapist can help you figure these things out.


ControllingYourPainPaincanbecausedbyacombinationofphysical,mental,andsocialeventsthathappentous.Ifwecan’tchangewhathappenstoourbodies,sometimeswecanchangehowthebrainusestheinformationitgetsbychanginghowwethink,orrelationshipswithpeoplearoundus.

v This means that you can also feel pain because of thoughts (such as feeling sad or afraid), or social situations (such as loneliness or feeling left out).

v Things like stress or trouble at school can make pain from a physical injury hurt more.

v But this also means that you can sometimes use your thoughts to change how your brain interprets pain.

Tryusingoneofthefollowingmethodstodecreaseyourpain:v Relaxation:Deepbreathing,biofeedbackorotherwaystorelax.v Imagery:imagineyouaresomeplaceverypleasant.Useallofyoursensestoimaginethis,including

whatyouhear,smell,see,feelandtaste.v Distraction:Dosomethingyouenjoytodistractyourbrainfrompain.v Sensing:Experiencedifferentsensations,suchastouch,sight,sound,smellortastecandecrease

activityinnervesthatprocesspaininformation.Takeashort‘sensationvacation’.v Channeling:Changingthe“channel”inyourbrain,likechangingaTVchannel.Whenyouhavenegative

thoughtsaboutpain,changetoa‘channel’withgoodthings–thinkaboutthingsthatyoulikeorarelookingforwardto.

Resources:• University of Michigan Medicine: Pain and Your Child or Teen: http://www.med.umich.edu/yourchild/topics/pain.htm

Website has extensive information about pain in children, as well as links to a variety of resources such as biofeedback, breathing techniques, art therapy, CBT, distraction, acupuncture, massage etc.

• Primary Children’s Hospital’s Pain Management Workbook, 2015. Available on-line at https://projects.upiq.org/improving-care-and-collaboration-for-children-with-neurologic-and-behavioral-conditions/pdf-files/pain-management-workbook Has instructions for the relaxation techniques, above, for children.

• List of apps to help kids relax: http://kidsrelaxation.com/uncategorized/7-apps-to-help-kids-relax/ and http://parentingchaos.com/anxiety-apps-kids/ . These change quickly, so search for new apps too.

• Palermo & Law. Managing Your Child’s Chronic Pain. 2015. How to use cognitive behavioral approaches with kids. • For teens:www.growingpains.org is a website created for teens living with pain to share with other teens

experiencing pain.


FeelingTired,NoEnergy

Howmuchdoesitbotheryoutobetiredorhavenoenergy?Usethethermometerscaletotheright,wherenotbeingtiredatallis0,andbeingsotiredyoucan’tdoanythingatallis10. ThereareseveralreasonsforfeelingtiredwhenyouhaveHSD:1. POTS:HSDisoftencombinedwithaconditioncalledPOTS,whichstandsfor

PosturalOrthostaticTachycardiaSyndrome.InHSD,yourbloodvesselsarestretchy,likeyourjoints.Thismeansthebloodvesselsdon’tpumpbloodbacktothebrainproperly,andthehearttriestopumpextrafasttomoveyourbloodthroughyourbody.Inadditiontofeelingtired,peoplewithPOTSoftenhavearacingheartbeat,headaches,dizziness,light-headedness,nausea,troublethinkingclearly,andfeelinganxiousorscaredfornogoodreason.(Actually,thereisagoodreason–yourbrainisscreamingformorebloodflow.)ThetestforPOTSisnotdifficult,andinvolveshavingyouliestillforafewminutes,thenmeasuringyourheartrateandbloodpressurewhenyousuddenlystandup(orthetableyoulieontiltsup).a. IfyouhavePOTS:

i. Drinkalotoffluidandeatsaltyfoods;thisincreasestheamountofbloodinyourbodysoiteasierforyourhearttopumpitaround.

ii. Moveyouranklesupanddownortenseandrelaxyourotherlegmusclesto‘pump’bloodbackuptoyourbrain.

iii. Liedownwithyourfeetaboveyourheartandhead.iv. Wearcompressionsockssoblooddoesn’tpoolinyourlegsandfeet.Therearesomecoolonesnow.v. Check out: http://www.chop.edu/conditions-diseases/postural-orthostatic-tachycardia-syndrome-pots vi. Exercise protocol: http://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf

2. Notsleepingwell.PeoplewithHSDoftendon’tsleepwellbecauseofpainorfeelingrestless.a. Usegoodsleephabits,suchasexercisingandgettingsunlightduringtheday,relaxingbeforebedtime,b. Avoidthingsthatwillwakeyouupatbedtime:foodwithcaffeineorsugar,activitiesthatwillwakeyou

up,electronics(TV,phones,tablets)whichproducebluelightthatcanwakeyouup.c. Makesureyouarecomfortable–yourbedshouldbesoftbutsupportive.Youmayneedseveralpillows

aroundyoutomakeyourselfcomfortable.d. Moresleepsuggestionsat:https://www.seattlechildrens.org/pdf/PE1066.pdf

3. Gettingoutofshapefromnotenoughexercise.Ifyoudon’tgetregularexercise(forexample,ifyouhavepainoryourjointsareinjured),yourbodybecomeslessabletoexercise,andyoufeeltired.Itmayseembackwards,butthesolutionistogetmoreexercise,eventhoughyouaretired.Sincenotgettingenoughexercisecanalsocausepain,regularexercisecanhelpinacoupleofways,ifitisdonecorrectly.a. Startwithalittlebitofexercisedoingsomethingyouenjoy–suchaswalking,biking,dancing,or

playingphysicalgames.Youmightonlybeabletodoafewminuteswhenyoustart,andyoumightneedtodothisseveraltimesduringthedaytogeteven10-20minutesofexercise.Butgraduallyincreasethenumberofminutesyouexercise,evenifyoufeeltired.Ittakesseveralweeksforthistowork.Peopleoftentrytodotoomuchexercisetooquickly;youcan’trushthis!“Startlow;Goslow!”

b. Excellentself-helpguideforchronicfatigue:searchthewebfor“gradedexercisetherapybartscsfme”4. Feelingexhaustedbythepain.Havingpaincantireyouout!Managethepainusingthetechniques

describedonthefirstfewpagesofthishandout.


WhenYouCan’tDoTheThingsYouWantToDoHowoftendoyoufeellikeyoujustcan’tdothetingsyouwantto,becauseofyourHSD?Usethethermometerscale,wherehavingnolimitationis0,andbeingunabletodoanythingyouwantis10.Troubleatschoolbecauseofpain,fatigue,difficultythinkingclearly,takingnotes,walkingfromplacetoplace,carryingbooks,etc.

• Trytousegoodposture,whetheryouaresittingorstanding.• Youmayneedtomodifythingslikedesks,chairs,orpencilsso

thattheydon’tputsomuchstressonyourjoints.• Youmayneedtogetupandmovearoundmorethanmost

kids.• Gymclasscanbedifficultforsomekids,especiallysincethe

painandfatiguecanchangealotfromdaytoday.Dowhatyoucan,sothatyourmusclesandheartcanstaystrong.Ifyoucan’tdowhattheclassisdoing,trytodosomethingelse,likewalking,swimming,biking,yoga,taichiorstrengtheningexercises.

• Aphysicaloroccupationaltherapistcanhelpyoufigureouthowtodothingsbetteratschool.

• Missingschool.SeetheEducator-ParentGuide,below.• Additionalsuggestionsat:https://ehlers-danlos.com/wp-

content/uploads/Educator-Parent-Guide-2016.pdf and http://hypermobility.org/help-advice/kids-teens/coping-at-school/.

Itmaybehardtoplayordothesportsyouwanttodo.• KidsandteenswithHSDhaveawiderangeofexercisetolerance–somecanbarelydo

anything,whileotherscanbequiteactive.• Seethesectiononpainforsuggestionsabouthowtofigureoutwhyyouhavepain.

Sometimesyoucandomorewithdifferentshoes(orinserts),standingstraighter,stretchingtightmuscles(withoutstretchingloosejoints),usinggoodbodymechanics.

• SomekidswithHSDhaveproblemswithcoordinationorbalance.Exerciseisstillimportant,butyoumighthavetroublewithsportsthatneedalotofcoordination.

• Youmayneedtochangehowyoudothingssoyoudon’tputasmuchstressonyourjoints.Forexample,youmightnotbeabletododeepsquatsbecauseofkneepain,oryoumightnotbeabletoclimbbecauseyourshouldersaretooloose.Youmightneedtobecreativetofigureoutdifferentwaystodothings.Oryoumayneedspecialequipmenttohelpyouwithyoursportorplayactivity.

• Painandlimitationscanvarydaytoday.Peopleneedtounderstandthat.• Moreat:http://hypermobility.org/help-advice/kids-teens/pe-and-exercise/-thereisa

greatvideotohelpschoolsandgymteachersunderstandkidswithhypermobility.


OtherProblemsHowmuchdootherproblemsrelatedtoHSDbotheryou?Usethethermometerscaletotheright,wherehavingnootherproblemsis0,andhavingsomanyproblemsthatyoucan’tenjoylifeis10.1. Feelingclumsyoruncoordinated,havingbadbalance,orjointsthat‘slipout’

a. Therightexercisecanimproveyourcoordinationandbalance.Theoppositeisalsotrue:ifyoustopexercising(becauseofpainorfatigue),yourcoordinationandbalancewillgetworse.

b. PeoplewithHSDoftenfeelliketheirjointswill‘slipout.’Strongmuscleswillmakejointsmorestable.Asimpleexerciseforshouldersandhipsthatslip:try‘suckingthemintothejoint’andholding5seconds.

2. Feelingscaredorworried,sometimesfornogoodreasona. FindoutifyouhavePOTS,becausethatisaphysicalreasonforfeeling

anxious,andtherearephysicalwaystotreatPOTS.b. Notknowinghowyouwillfeelonanydaycanbescary.Trytokeepasense

ofhumorandgowiththeflow!Talktopeopleaboutyourconcerns.c. Relaxationtraining,likedeepbreathing,meditationoryogacanhelp.See

sectiononrelaxationearlierinthehandout.3. OtherpeoplemightnotunderstandwhatitisliketohaveHSD

a. Sometimespeopledon’tbelieveyoureallyhavearealmedicalcondition,becauseitishardtosee.YoucangivepeopleinformationaboutHSDtoread.TheEhlers-DanlosSocietyhasgoodhandouts:https://www.ehlers-danlos.com/brochures/

b. TalkingtootherpeoplewhohaveHSDcanhelp.Ifthereisnosupportgroupinyourarea,thereareseveralon-line.Checkhttps://www.ehlers-danlos.com/support-groups/forsupportgroupsinyourareaandon-linegroups.

4. Headaches:a. HeadachesarecommoninpeoplewithHSDbecausetheloosejointsallowtoomuchmotioninthe

neckjoints,whichmaycausethemusclesinyournecktoworktoohard.Sometimestheneckmusclesarenotcoordinatedorstrongenough.Poorposturecanalsostresstheneckandcauseheadaches.Notsleepingwellcanalsomakeheadachesworse.

b. Onebookthatmighthelp:V.DeLaune,TriggerPointTherapyforHeadachesandMigraines:YourSelf-TreatmentWorkbookforPainRelief.

5. Stomachaches:a. ManypeoplewithHSDaresensitivetocertainfoods.Thiscanbetrickyto

figureout.Sometimesaspecialdietcanhelp.Consider:i. FODMAPdiet:http://www.med.monash.edu/cecs/gastro/fodmap/ii. HeidiCollinsEDSdiet:https://docslide.net/documents/diet-supplement-guidelines-

for-eds-heidi-a-collins.htmlb. SomepeoplewithHSDhaveaconditioncalled‘mastcellactivationdisorder’,orMCAD.http://www.mastattack.org/2015/05/mast-cell-disease-fact-sheet/ c. Ifyouareconstipated(ifyoudon’thaveaBMmostdays),yourgutmightbemovingfoodtooslowly.Regularexercisecanhelp.Thereisalsoatypeofmassagetoyourbellythatcanhelp.Abdominalpropulsivemassageisshowninthepicture,here.(Harrington&Haskvitz,PhysTher.2006;86:1511-19)

pain no energy - the ehlers danlos society

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