rehabilitation for pots · complex pharmacological management for pots and mast cell ac,vaon •...
TRANSCRIPT
![Page 1: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/1.jpg)
Rehabilitation for PoTSPoTS UK Masterclass
Dr Jane Simmonds MCSP MACP SFHEAD Prof, MA, PGDip, B App(Sc), BPEProgramme Lead: MSc Paediatric PhysiotherapyPhysiotherapy Lead Hypermobility Unit, Hospital of St John and St Elizabeth
![Page 2: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/2.jpg)
Plan
• Share an approach to rehabilitating people with PoTS• Integrating key PoTS exercise related research• Anecdotal experience
• Case studies.
![Page 3: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/3.jpg)
AcknowledgmentsPatientsDr Nelly NinisProfessor Christopher MathiasProfessor Rodney GrahameDr Alan HakimDr Hanadi KazkazDr Inge de WandeleDr David Low Professor Peter Rowe.
![Page 4: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/4.jpg)
Interest started with complex referrals• Joint laxity/ hypermobility / joint instability (hEDS/ HSD)• Persistent widespread pain• Persistent fatigue• Pre syncope and sometimes fainting• Temperature dysregulation• Gastrointestinal symptoms - reflux, slow transit• Bladder symptoms – irritable bladder, incontinence• Allergies - rashes
![Page 5: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/5.jpg)
Onset
![Page 6: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/6.jpg)
GImanifesta,ons
CardiacDysautonomia
Musculoskeletal
Allergy/MAC
Pain
Fa,gue
Bladder
systemicseverityscaleNinis,deWandele&Simmonds2013
MentalHealth
![Page 7: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/7.jpg)
GImanifesta,ons
CardiacDysautonomia
Musculoskeletal
Allergy/MAC
Pain
Fa,gue
Bladder
systemicseverityscaleNinis,deWandele&Simmonds2013
MentalHealth
![Page 8: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/8.jpg)
GImanifesta,ons
CardiacDysautonomia
Musculoskeletal
Allergy/MAC
Pain
Fa,gue
Bladder
systemicseverityscaleNinis,deWandele&Simmonds2015
MentalHealth
![Page 9: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/9.jpg)
GImanifesta,ons
CardiacDysautonomia
Musculoskeletal
Allergy/MAC
Pain
Fa,gue
Bladder
systemicseverityscaleNinis,deWandele&Simmonds2013
MentalHealth
![Page 10: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/10.jpg)
Problembasedapproach-Exploreexpecta7ons-Choice
![Page 11: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/11.jpg)
Rehabilitation PrinciplesEducation: Reassurance Pacing – fatigue and pain managementAgree and set realistic goals
Anxiety management • Cognitive Behavioural Therapy, Relaxation, Mindfulness, Hypnosis• Hyperventilation - Breathing ExercisesSleep management• Sleep routine • Timing of food and exercise• Screen time• Sleepio App
![Page 12: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/12.jpg)
Monitor medications: often complex cocktailAdvise on non pharmacological treatments• Compression garments – aid venous return• Fluids and salt – maintain blood volume• Dietary advice – small meals, low carbohydrate, FODMAPS
Design and implement exercise reconditioning programme* Evidence suggests that orthostatic intolerance and PoTS
are related to deconditioning (Fu et al., 2010; Parsaik et al., 2012; Sheldon et al., 2016)
Cause or Effect?
![Page 13: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/13.jpg)
Monitor medications: often complex cocktailAdvise on non pharmacological treatments• Compression garments – aid venous return• Fluids and salt – maintain blood volume• Dietary advice – small meals, low carbohydrate, FODMAPS
Design and implement exercise reconditioning programme* Evidence suggests that orthostatic intolerance and PoTS
are related to deconditioning (Fu et al., 2010; Parsaik et al., 2012; Sheldon et al., 2016)
Cause or Effect?Regardless of the relationship – deconditioning negatively influences cardiovascular function
![Page 14: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/14.jpg)
Premise: Long term benefits of improved physical fitness counteract orthostatic intolerance• Increased blood volume• Increased cardiac output• Enhanced vascular compression due to increased muscle
mass and tone• Improved endothelial function• Improved baro-reflex function
![Page 15: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/15.jpg)
CaseControlStudy:19casesofPoTSand16healthycontrols3monthgraduatedexerciseinterven7onResults• 10/19casesnolongermetthediagnosisofPoTS• Significantreduc,oninuprightheartrate• Allimprovedqualityoflife(SF36)
![Page 16: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/16.jpg)
Growing evidence for exercise as alternative to medication
Side effects of medication – lead to cessation• Beta blockers – fatigue• Fludrocortizone – hypokalemia• Alpha adrenergic agonists - hypertension
Galbreath et al., 2016 Clin Auton Res, 21, 73-80
![Page 17: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/17.jpg)
Exercise Reconditioning ProgrammeAims : improve cardiovascular fitness and lower limb strength
Cardiovascular exerciseStart with chair peddles, reclining bicycle, rowing and swimmingProgress to upright position
During exercise, people with PoTS have a low stroke volume response to exercise – leads to light headedness, dizziness, dyspnoea and weakness
![Page 18: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/18.jpg)
Resistance / Strength Training• Body weight• Weights • Elastic bands
Resistance training is more demanding on the circulatory system. Lead to changes in blood pressure. Avoid Static exercise and Valsalva hold breath – increase in BP, followed by a fall in BP
![Page 19: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/19.jpg)
How Often and How Hard? Frequency and Intensity of ExerciseFirstmonth3-4perweek:RecliningexerciseCVtraining(20-40min)1xperweek:Resistancetrainingperweek(15–20mins)RPE6-16
Secondmonth3-4perweek:UprightbikeCVtraining(25-34mins)2xperweek:Resistancetrainingperweek(20-25mins)RPE6-18
Thirdmonth3-4perweek:UprightCVtraining(35-40mins)Crosstrainer/walking2xperweek:Resistancetraining(30mins)RPE8-18
Georgeetal.,2016HeartRhythm,13,943-50
RateofPerceivedExer7ons
![Page 20: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/20.jpg)
My Reality - Frequency and Intensity of Exercise
FirstMonth4-5perweek:RecliningexerciseCVtraining(2-10mins)4-5xperweek:Resistance&propriocep,ontrainingperweek(2-10mins)RPE6–9:Graduateby10%perweekSecond–ThirdMonth4-5perweek:Uprightbike/WalkingCVtraining(10–30mins)4-5perweek:Resistance&func,onaltrainingperweek(10–20mins)RPE6-13Fourth–SixMonth3-4perweek:Uprightbike,Walking,Crosstrainer(30-40mins)2-3xperweek:Resistance&func,onaltraining(20mins)RPE9-18
Georgeetal.,2016HeartRhythm,13,943-50
![Page 21: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/21.jpg)
GImanifesta,ons
CardiacDysautonomia
Musculoskeletal
Allergy/MAC
Pain
Fa,gue
Bladder
systemicseverityscaleNinis,deWandele&Simmonds2015
MentalHealth
![Page 22: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/22.jpg)
Case Two
ManagementComplexpharmacologicalmanagementforPoTSandMastCellAc,va,on• Fluidsandsalt• Dietaryadvice• SchoolingplanFunc7onalrestora7onprogrammeNormalisemovementGaitreeduca,onHydrotherapyGraduatedcardiovascularandresistancetrainingBike,crosstrainer,squats,weightsarmsandlegs,legpressGoalsCompleteGCSE’sBeabletogoshoppingonthehighstreetStayoverwithfriendsandholiday
![Page 23: Rehabilitation for PoTS · Complex pharmacological management for PoTS and Mast Cell Ac,vaon • Fluids and salt • Dietary advice • Schooling plan Func7onal restora7on programme](https://reader036.vdocuments.mx/reader036/viewer/2022081607/5ec89ebdcc5c715c612bb1c6/html5/thumbnails/23.jpg)
Tips for Rehabilitation
GivehopeHolis,cviewProblemsolvingFindthebaselineProgresssteadypaceDrinkbefore,duringandaberPsychologyGraduateslowlyUnderlyingHSD–likelytobeveryweakanddecondi,onedwithporrpropriocep,on.Needtoincorporatestabilitytraining.