PATIENT EDUCATION Teens - Ehlers-Danlos

Transcription

Page 1 of 32 mc6122 Teens - Autonomic DysfunctionPATIENT EDUCATIONTeensAutonomicDysfunctionMake Time for FunSET GOALSExerciseIt’s All AboutBalanceSleepEat RightBARBARA WOODWARD LIPSPATIENT EDUCATION CENTER

iPage 3 of 32 mc6122 Teens - Autonomic DysfunctionIntroductionYour doctor says you have autonomic dysfunction. Youprobably have a lot of questions about what that means.This booklet explains what it means to have autonomic dysfunction.You’ll read what autonomic dysfunction is and what you can do to feel better.You’ll also hear from some teens with autonomic dysfunction. Their experiences might giveyou ideas about things you can do to feel better.What is autonomic dysfunction, exactly?You probably already know that this is a question without a good answer.Doctors do know that autonomic dysfunction is a physical illness — it’snot “all in your head.” They just don’t fully understand it.In some cases, autonomic dysfunction can be associated with otherconditions.You might be familiar with these terms: autonomic instability,dysautnomia, orthostatic intolerance or POTS (postural orthostatictachycardia syndrome). Basically, these are just different names forthe same thing.If you’ve been told you have one of theseconditions, it means that the part of yournervous system that you can’t control —the part that regulates blood flow, bodytemperature, breathing, and digestion —may be out of balance. This is calledyour autonomic nervous system.Chronic fatigue is a commonsymptom of autonomicdysfunction.it’s not “all inyour head.”1

Page 4 of 32 mc6122 Teens - Autonomic DysfunctionWhat is the autonomic nervous system?The autonomic nervous system controls things we don’t think about such gplaying frisbeeshootingbasketswalkingSkin temperatureBlood flowNormally, the autonomic nervous system sends messages or signalsfrom the nerves to the muscles that surround the blood vessels,controlling blood flow to all parts of the body. The muscles tighten orrelax, according to the signals they receive.What happens if the autonomicnervous system doesn’t work theway it should?If the signals telling your blood vessels to loosen and contract aren’tdoing their job, blood can pool in your body and your circulation canslow down.Think of a blood vessel as a river (Figure 1). When a river is wide, thewater in it tends to pool and run slowly downstream. When a rivernarrows, the water is forced to flow much more quickly through thesmaller space — if you’ve ever been rafting, think about where theswiftest rapids are found (Answer: where the river is the narrowest!).Autonomic dysfunction isreal. You can beat it.2

Page 5 of 32 mc6122 Teens - Autonomic Dysfunction3

‘‘Page 6 of 32 mc6122 Teens - Autonomic DysfunctionIn addition to feeling sick,SymptomsIf your autonomic nervous systemisn’t doing its job, you mayexperience some of the symptomsof autonomic dysfunction becausethe right amount of blood isn’tgoing where it should.A common symptom ofautonomic dysfunction isdizziness and a fast heartbeat— especially when you stand up(Figure 2).Because these symptoms can beseen in other conditions, peoplewho have autonomic dysfunctionmay have a lot of tests or seemany doctors before gettingdiagnosed.having stomach cramps and being reallytired, I started feeling a lot of anxiety andfrustration. I didn’t know how to handlefeeling so bad.”Common symptoms of autonomic dysfunctionYou might have some (a few or many) of these symptoms:Dizziness/light-headednessLots of sweatingFaintingFlushingFatigue (being tired all the time)Increased heart rateHeadachesChest painStomach pains or crampsWeakness in your legsNauseaColor changes in your legs(blue or purple discoloration)Difficulty concentrating or“Brain fog”Vision changes or loss of visionFeelings of hot or coldMood changes includingfeelings of anxiety ordepressionWho gets autonomic dysfunction?Anybody can get autonomic dysfunction, but it’smore common in:CaucasiansHigh achievers (successful in school, athletics,etc.)FemalesPeople who are flexible or double jointedTeens can often connect their symptoms with aspecific event or trigger:Acute illness such as a respiratory infection(cold virus), intestinal viral infection, or “mono”or a “mono-like” infectionInjuryMajor surgery or a stay in the hospitalWeight lossAutonomic dysfunction can occur at any age. Forteens, it is often within a year of starting puberty.‘‘I think my biggest symptomsweredizziness and vomiting. I had difficulty with vomitingand getting food down. I would get sick every time I ate.And even when I didn’t eat, my stomach would reallyhurt. I also was very exhausted. I was dizzy and hadblackouts. I was sleeping a lot. I didn’t have any energy.”4

Page 7 of 32 mc6122 Teens - Autonomic Dysfunction5

wPage 8 of 32 mc6122 Teens - Autonomic DysfunctionWill I Get Better?The GOOD NEWS is that most teens recover from autonomic dysfunction andreturn to normal health.In fact, there are specific things you can do that may help you feel better more quickly.Of course, it won’t always be easy. And it’s going to take some time to get better but you’re not alone.Many teens experience symptoms of autonomic dysfunction. And many teenshave been able to control their symptoms by working with their health careteam to create a recovery plan and sticking to it.‘‘I feel likeI’m doinga lot better.and I really thinkit has to do withmy attitude andmy spirit.At first, I wantedto just wake upone day and becompletely better.But.that wasn’tgonna happen.So I decided tofight it.”6You can beat autonomic dysfunction.By committing to a recovery plan, you can focus your energy on getting yourlife back.

Page 9 of 32 mc6122 Teens - Autonomic DysfunctionWhat can I do to feel better?Even if you feel terrible, it’s important that you take STEPS to function.REALLY!!S T E P SMaking the followingyou on the road to recovery.the center of your recovery plan can putSSalt. Add as much salt as your taste buds can tolerate to everything. Thiscan be any kind of salt – table salt, sea salt, garlic salt, onion salt, seasonedsalt, etc.TTake in large amounts of fluids (3-4 liters every day). Recommendedfluids include water, Pedialyte , Gatorade , Powerade , Propel , milk,juices, soups. Non-caffeinated beverages are preferable. You should passcolorless urine all day (at least four times).EExercise regularly.PPrescription medications.SSupport system. This is important! Stay involved with your family,friends, psychologist, and others you can turn to for support.Make it a goal to develop an exercise program withthe help of your health care team. They will consider your starting pointand help you set realistic goals for your rehabilitation program. Make acommitment to do aerobic exercise every day. It’s also important to dostrengthening exercises every day.Take medications as directed. Don’t stoptaking any medication without talking to your doctor, even if you feel better.Sleep.Get at least nine hours of sleep each night. Avoid naps.School. Set up a plan with your family and teachers to return to school ifyou are not attending currently.Set priorities and goals.Autonomic dysfunction is a medical condition.Prioritize your activities so that you use your energy in ways that help youstick to your recovery plan.Safety.Do not do activities where you are at risk for falling as you cannotpredict when you might get lightheaded or dizzy and pass out.‘‘If youdon’tpush it,you’llnever getpast it!”7

Page 10 of 32 mc6122 Teens - Autonomic DysfunctionWhy STEPS can helpRead on to discover the details of why makingrecovery plan can put you in control!S T E P Sa part of yourS T E P SSalt and Takingin FluidsThe power of salt and fluidTaking in extra fluids pumps upthe volume in your blood vesselsand increases blood flow, whichimproves your circulation. Thishelps prevent dizziness andlightheadedness and helps regulateyour body temperature.However, if you just increase fluidswithout adding salt you’ll spendmost of your day in the restroom!Salt helps your body retain theextra fluid, so the key is to take inas much salt as your taste buds cantolerate.Make it a goalMake it a goal to drink 3 to 4 liters of noncaffeinated fluid every day (caffeine is a diuretic,which means it pulls water out of your body).That’s equal to about twelve to sixteen 8-ounceglasses a day or six to eight 16-ounce bottlesa day.Some beverages have a lot of salt in them. Theseare mostly sports beverages such as Gatorade ,Powerade , and Propel . Drinking saltybeverages lets you get both salt and fluids in oneshot.8Make it a goal to up your salt intake.Drinksalty fluids. Add salt to your meals. Eat saltysnacks likepretzelspicklescheese and crackerspumpkin seedsIncorporate salty foods like pizza and Chinesefood into a healthy diet.

‘‘Page 11 of 32 mc6122 Teens - Autonomic DysfunctionI basically focus my dayon drinking enough fluids andgetting enough salt to maintainmy blood pressure.”Don’t forget to brush if youdrink a lot of sugary liquids besure to brush your teeth often.Beware of empty calories in theTIPIf you feel dizzy whenyou get out of bed,beverages you drink!try drinking 8 ouncesSugar-free liquids can help youof salty fluids 15 toget the fluids you need withoutadded calories.20 minutes beforeyou get up.9

Page 12 of 32 mc6122 Teens - Autonomic DysfunctionS T E P SExercise,exercise,exerciseIt may be hard to believe. Howcould exercise make you feelbetter?In fact, exercise is anotherpowerful weapon againstautonomic dysfunction.Ideally, you want to do two typesof exercise on most days of theweek:strengthening exercises, whichfocus on certain muscle groups,deliver an energy surge to getyour blood flowingaerobic exercise, which elevatesyour heart rate over a sustainedperiod of time, conditions yourbody for the long runTIPAvoid exercise close to bedtime,as it can keep you awake.10Exercise causes your bodyto release endorphins thatcan lift your spirit.Exercise strengthensmuscles, revs upyour heart, increasescirculation, and energizesyour body.

Page 13 of 32 mc6122 Teens - Autonomic DysfunctionStrengthening exercisesDo 25 repetitions of each of the following exercises each day.Try to do these exercises when you are at your low point for theThink of strengthening exercisesas a jump start for your body. For example, if morningsday in terms of how you feel.are the toughest for you, incorporate these exercises into yourmorning routine.BEFORE YOU START your strengthening exercises, drink 8 ounces of a salty fluid(Gatorade , Powerade , or Propel ). This may help prevent feelings of dizziness as youexercise.If any of these exercises cause you pain or discomfort, tell your doctor or physical therapist soyour exercises can be adjusted.Toe raises.Stand with your hands at yoursides and your feet slightly apart. Rise up on theballs of your feet. Hold for a second. Returnto starting position. Repeat 25 times. (You cando these holding 3 to 5-pound weights if youchoose.)Squats. Stand with your feet shoulder-widthapart. Bend your knees and slowly lower yourupper body as if you were going to sit down ina chair. Hold for a second. Return to startingposition. Repeat about 10 times if you are able.Gradually increase your repetitions until youcan do three set of ten. (You can do squats withyour back against a wall or door. Make sure youcan see your toes sticking out beyond your kneeswhen you do these.)Biceps curls with 3- to 5-pound weights.Stand with your feet shoulder-width apart. Holdweights at your side, palms facing out, elbowsslightly bent. Keep your abs tight and your backstraight. Slowly raises the weights toward yourcollar bones. Stop before you fully flex yourelbows. Keep your wrists straight. Slowly lowerthe weights to the starting position. Repeat 10times and build up to 3 sets of 10.Strengthening exercises not only help you build muscle,but they increase your circulation by giving groups of muscles a focused work out.This workout focuses on your major muscle groups, which helps stop blood frompooling in your hands and feet and gets your blood going to the places you need it!11

Page 14 of 32 mc6122 Teens - Autonomic DysfunctionWhat counts asaerobic exercise?Aerobic exerciseAnything that raises your heart rate for asustained period of time. A few examples:WalkingBikingDancingStart doing aerobic exercise in small amountsif that is all you can do. Work to increase theamount of time you exercise.Aim for some exercise every day — even on abad day.For many teens, aerobic exercise is theto recovery!KEYSkatingSet an exercise goalJoggingMaking a commitment to fit in aerobic exerciseevery day can seem difficult at first—especially ifyou aren’t used to exercising.Playing soccerHikingYOU CAN D O I T by going slowly and not giving up.TIPDon’t layer your clothing.Too many layers can causeyour blood vessels torelax—which can make youfeel dizzy or lightheaded.‘‘At first, 30 minutesof exercise each dayseemed impossible ButI started slowly and added afew minutes each day. And Istuck to it. Now I can’t believethe difference it has made inmy life. My energy level is up,and I just feel better!”12

‘‘Page 15 of 32 mc6122 Teens - Autonomic DysfunctionWe started walking around the block,as far as wecould make it. And that took a very long time And now I’m at thepoint where I can run four miles at a time It’s taken a lot to workup to where I am now. But I think it’s totally worth it that I can live anormal life.”YOUR GOALIf you’re at the bottom looking up, that’s a major challenge. But bybreaking it down, you can reach your goal. StartIf it’s on the bottom, fine.Half-way up, fine.Build from there.where you are.PaceyourselfFocus onincreasinggradually toreach your goal.If you do toomuch becauseyou feel goodone day, youmay pay for itthe next.If you can do 5 minutes, great. Take a briskwalk for five minutes. Time yourself. Thenext day, add a minute or two. Slowlyincrease the time you walk until you reachyour goal.If there are days you can’t increase, don’tworry about it. Do what you can everyday. And don’t overdo. This is really oneof those times where SLOW & STEADYwins the race!Each day you stick to your exercise plan will bring you one day closerto your goal of getting your life back.13

Page 16 of 32 mc6122 Teens - Autonomic DysfunctionS T E P SPrescription medicationsMedicines can’t cure autonomic dysfunction,but they may help with your symptoms: Some medicines (alpha-adrenergic) tell yourblood vessels to tighten up, which may improveyour circulation.Beta-blocker medicines tell your blood vesselswhen to tighten and when to relax. Thesemedications may prevent your heart fromracing.Drugs affecting the serotonin level can helpmoderate some body responses and maypotentially lessen feelings of dizziness andweakness.Take all medications exactly as they are prescribed,and let your doctor know about any side effectright away.‘‘I didn’t want to take medication.I didn’t wantpeople thinking I was weird, taking it out at meals But afterI found what worked for me, I just really feel like I can do somuch more.”14

Page 17 of 32 mc6122 Teens - Autonomic DysfunctionS T E P SSupport systemA good support system is very important.You know that what you are feeling is real, even ifothers may not think you look “sick.” But othersmight not understand what you’re going through.Figure out how much you want to tell them aboutyour condition and practice telling your story withyour parents. Explaining your illness briefly isprobably all your friends need. You may find themmore supportive than you expect if you talk abouthow you’re feeling.Even if your friends are supportive, it may be toughto stay in touch if you can’t participate in yournormal activities. If you don’t feel up to going out,invite your friends to your house for pizza and amovie.In addition to counting on family and friends tobe there when you need them, consider seeing apsychologist. He or she may be able to:Motivate you to follow your planTeach you techniques for managing painand fatigueHelp you return to a more active lifestyle‘‘‘‘Hanging out with friendsmakes me feel like things are gettingback to normal. Even if it isn’t alwayseasy to find the energy, it’s definitelyworth it!”It’s been really niceseeing a psychologist.I’ve been able to vent to her about the different thingsgoing on in my life. My anxiety level has definitelygone down!”15

Page 18 of 32 mc6122 Teens - Autonomic DysfunctionMostteenagersneedbetweenCatch your ZZZZZ’s81 2 and91 2 hoursFor teens with autonomic dysfunction, getting agood night’s sleep is even more important. Infact, it is one of the keys to recovery.of sleepeach nightto feelrested.Plan to getenoughsleep eachnight.Getting a good night’s sleep isn’t alwayseasy, especially for teenagers. Changes inyour body clock, a jam-packed schedule anda 24/7 lifestyle can combine to underminehealthy sleep.Healthy sleep is vital to your well being, asimportant as food and water. It helps you think,feel and look better, as well as perform betterin school and sports. And it only makes sensethat your fatigue level will go down and yourenergy level will go up if you work sleep into yourschedule.Plan for 8½ to 9½ hours each night, and try tostick to a regular sleep schedule. Sleeping in foran hour or so on the weekend is fine, but if yousleep the morning away, it will be much harder tofall asleep at night and much harder to get upon Monday!The “No Nap” rule.As a rule, save napsfor those rare occasions when you will be up late.And even then, limit naps to no more than 45minutes.A nap can be a lifesaver but I know Ineed to save it for a very special occasion. The lasttime I took a nap was on the day of the prom. Itwas well worth it!”16

Page 19 of 32 mc6122 Teens - Autonomic DysfunctionTips for good sleepStay away from pop, sugar and bigmeals two to three hours before yougo to bed.Skip the caffeine two to three hoursbefore bedtime.Exercise.Daily exercise will help yousleep (do it at least two hours beforebedtime).Clear your mind.Several hours beforebedtime, write down things that are onyour mind or tasks you need to do.Make a bedtime routine.Doing the samethings each night before you go to bed willgive your body the signal that it’s time tosleep.After 9 p.m., focus on calming activities.Avoid video games and violent or scaryTV shows, movies or books.Don’t nap during the day.Naps do more tomess up your sleep cycle than they doto help you catch up on your sleep.17

Page 20 of 32 mc6122 Teens - Autonomic Dysfunction6tipsfor staying in school on a rough day18

Page 21 of 32 mc6122 Teens - Autonomic Dysfunction1. Slow down. Take a moment to relax and release the tension from your body using relaxedbreathing. Focus your energy on your goal of getting your life back. You made it to school, and the bestthing you can do is stay there. If you need to take a quiet moment, ask to go to the nurse’s office, thelibrary or another quiet room at school. Go back to class as soon as you can.2. Prioritize. When you’re very fatigued or in a lot of pain, focus on the things you really need to do,and do them. Skip activities that aren’t critical.3. Revise your expectations.Even if you’re having a hard time concentrating, or you’reworried because you can’t do as well as you’d like, remember that your goal is simply to stay at schooland do the best you can.4. Call in reinforcements.Tell a trusted friend or teacher that you’re having a rough day. Askthem to help you relax and distract your attention.5. Stay positive. Focus on what’s going right in your life, rather than your pain or fatigue.Remindyourself that you’ve made it through tough days before, and you can do it again. Tell yourself that it willget better — because it will!6. Plan ahead.It’s hard to figure out what you’re going to do on a difficult day when you’re in themiddle of it. Before a tough day hits, decide what you’ll do when things get bad, where you can go torelax and who you can talk

School. Set up a plan with your family and teachers to return to school if you are not attending currently. Set priorities and goals. Autonomic dysfunction is a medical condition. Prioritize your activities so that you use your energy in ways that help you stick to you