• Matthew Preston

Managing everyday life with Hypermobility and EDS



Who: Dr Louise Tofts, Paediatrician, Rehabilitation Specialist (Narrabeen Sports Medicine Centre, Australia)

What: Ehlers-Danlos Society Learning Conference - Patient Day

Where: Macquarie University, Sydney

When: 7 December 2018


These are my notes from Dr Tofts' talk. I have tried to be as true as possible to what was said at the conference - please excuse any errors.


MANAGING YOUR EMOTIONAL WELL-BEING WITH EHLERS-DANLOS SYNDROME

- Stress: Many symptoms are stress-sensitive - directly influenced by the body's stress-response system (Wired for threat, J Elbers et al 2018)

  • Nature's primitive system that responds to threat (fight or flight)

  • Can affect digestion, heart rate, pain, dysautonomia

- Psychological help

  • Psychological interventions have a positive influence, not just for treating anxiety

  • Cognitive Behavioural Therapy has been shown to have a positive effect on physical symptoms (research done on Irritable Bowel Syndrome)

  • Attending chronic pain workshops/education is helpful: chronic pain education helps decrease pain independent of other rehabilitation strategies

  • Learning the use of prefrontal cortex thinking (conscious modulation of emotion) is helpful, eg 'Even though she is angry, nothing bad is going to happen to me.'

  • Mindfulness strategies (and activities that make you feel more relaxed) can help decrease the reactivity of your mind and body


MANAGING YOUR PHYSICAL WELL-BEING WITH EHLERS-DANLOS SYNDROME

- Exercise

  • Promotes healing and provides gains in physical capacity

  • Dose and pace is very individual

  • Set and prioritise functional goals and work steadily toward them (eg, I want to be able to do my own grocery shopping, take a walk on the beach, etc.)

  • Have a Plan A, B and C, depending on what your abilities are on any given day (eg, on days you can't walk, do core exercises lying down)

  • Keep at it steadily - it may take a long time to start feeling the positive effects

See also: https://www.ehlers-danlos.org/information/exercise-and-movement-for-adults-with-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/


- Activity Moderation/Pacing

  • Pacing is critical for managing overall activity

  • Avoid the 'boom and bust' cycle (doing too much in your good moments and then crashing) because this leads to an overall downward cycle

  • Keep records: use a diary and activity monitor (Fitbit, etc.) to work out your current capacity

  • Set and prioritise functional goals: small, doable goals and some longer-range goals

  • Have a Plan A, B and C, depending on what your abilities are on any given day

- Sleep

  • Crucial for overall well-being (research: sleep-deprived mice could not heal their tendons)

  • Poor functional sleep is a clear indication of a stress system out of control

  • Sleep is a subconscious behaviour

  • If you snore, discuss this with your GP (sleep apnoea?)

- Nutrition/Maintaining a healthy weight

  • Good nutrition and maintaining a healthy weight is key

  • Weight reduction: diet contributes 80%, exercise 20%; watch portion size, hidden calories in sugary drinks and sauces, have healthy snacks and sleep well

  • Healthy eating is a behaviour - it is indeed 'mind over matter'

  • Formal and informal supports are helpful

  • Low Glycemic Index (GI)/high fibre diet is recommended

NO QUICK FIXES: There are no 'quick fixes' with Ehlers-Danlos Syndrome, so watch out for 'snake oil salesmen' offering you cures. Always evaluate whether any product or treatment is worth the money, time and effort for the amount of proven gain.


WORKING STEADILY TOWARD YOUR GOALS

  • Good planning and proactive management are key (it takes time, effort and dedication!)

  • Limit yourself to 2 or 3 goals at a time, and review each of them after 3 months

  • Prioritise issues that are having the most positive impact on your day-to-day quality of life

  • The hallmark of EDS is variability, so expect some rocky days and set-backs

  • The people who get on top of their EDS instead of letting it control them are those who can take the expected knocks in their stride and carry on


Whakatane, Eastern Bay of Plenty

New Zealand

© 2020 by Matthew Preston