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
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