SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018 Dysautonomia and Fatigue Management Dr Jane Simmonds MCSP SFHEA Physiotherapy Lead: London Hypermobility Unit Programme Lead Physiotherapy: Institute of Child Health, University College London
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SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
Dysautonomia and Fatigue Management!!!!!!Dr Jane Simmonds MCSP SFHEA!Physiotherapy Lead: London Hypermobility Unit!Programme Lead Physiotherapy: Institute of Child Health, University College London!
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
Referrals with a combined diagnosis dysautonomia and Hypermobility Syndrome / Ehlers Danlos Syndrome – Hypermobility type (HSD and hEDS)
• Paediatrician - Dr Nelly Ninis
• Rheumatologists - Professor Rodney Grahame
Dr Hanadi Kazkaz
• Neurovascular physician - Prof Christopher Mathias
‘Jane can you help here – can you help get him/ her moving please’
How my interest started
Profound fatigue (poor sleep) Racing heart (tachycardia) and feeling faint • When standing in assembly or in cue at supermarket • Standing up too quickly • Travelling on the underground • Light exercise • After eating a large meal/ carbohydrates Colour changes / blotchy – feet and hands - venous pooling Nausea Irritable bowel type symptoms Recurrent urinary tract infections Allergies - rashes Sent home from school or work – reduced attendance
Common symptoms
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
Symptoms related to the autonomic nervous system such as; • Syncope, pre-‐syncope (near fain9ng/ fain9ng) • Palpita9ons, tachycardia, chest discomfort • Fa9gue • Heat intolerance Significantly more common among people with JHS than healthy controls
2003
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
Outlined a number of poten9al mechanisms a suggested cause in hypermobile individuals
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
Case Control Study: 19 cases of POTS and 16 healthy controls 3 month graduated exercise interven2on Results • 10/19 cases no longer met the diagnosis of PoTS • Significant reduc9on in upright heart rate • All improved quality of life (SF36)
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
Defini2on Postural tachycardia syndrome is an abnormality of the func9oning of the autonomic (involuntary) nervous system.
Sympathe2cally driven Sympathe2c Para sympathe9c
Flight and fright Rest and restore
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
Defini2on Postural tachycardia syndrome is an abnormality of the func9oning of the autonomic (involuntary) nervous system.
1. To be diagnosed with POTS, an individual must experience a group of symptoms in the upright posi9on (usually standing) that are relieved by lying down
2. A persistent increase in heart rate of 30 beats per minute (40 bpm if under 19 years of age) should be recorded within ten minutes of standing. Blood pressure (BP) does not always drop in POTS
Sympathe2cally driven
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Diagnosis
10 Minute quiet standing test (Raj 2013) 3 – 7 day blood pressure and heart rate monitoring and diary
Walking
Chair
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Management!Empower and take control of the condi2on Educa2on • Reassure (not a heart aaack) • Pacing – fa9gue and pain management (diary)
Sleep management • Sleep rou9ne • Dark room • Timing of food and exercise • Reduce screen 9me • Sleepio App*
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
Avoid
• Rapid postural change • Standing/sidng too long • Prolonged bed rest • Excessive straining, heat, alcohol • Large carbohydrate meals
Management Complex pharmacological management for POTS and Mast Cell Ac9va9on • Fluids and salt • Diet – low histamine & FODMAP • Schooling and exam plan • Psychology Goals • Commence daily exercise: floor based – pool – gym (reviewed 3-‐4 weekly basis) • Be able to go shopping on the high street – ( 4 months) • Complete 5 GCSE’s (somehow) – 8 months • Stay over with friends house (6-‐8 months) Func2onal restora2on programme Normalise movement • Hydrotherapy (x 3 per week) • Gait re educa9on • Graduated cardiovascular and resistance training • Bike, cross trainer, squats, weights arms and legs, leg press
Case Two!
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
‘There are many more ups than downs these days. I have reduced my medica/ons, but do s/ll need to manage my stress levels.’
‘I am now at 6th Form College and proud to have completed one A level and planning to finish two more’
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018
Summary – top tips
Seek information Dysautonomia International or POTS UK website Find a team who understands POTS and EDS Find therapists who you can trust and work with Learn about nutrition Set realist – meaningful physiological and life goals Graduated exercise programme Start low, go slow – persist – carry on
SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018