Who: Verity Pacey, PhD, Senior Lecturer (Paediatric Physiotherapy), Macquarie University, Sydney, Australia
What: Ehlers-Danlos Society Learning Conference - Patient Day
Where: Macquarie University, Sydney
When: 7 December 2018
These are my notes from Dr Pacey's talk. I have tried to be as true as possible to what was said at the conference - please excuse any errors.
WHAT IS PAIN?
'An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.' (International Association for the Study of Pain - IASP)
Everyone's experience is individual. (My 7/10 doesn't equal your 7/10.)
Pain doesn't necessarily equal damage.
SIX CORE CONCEPTS OF PAIN (Hush 2018)
Pain is always an output of the brain, 100% of the time.
Pain does not equal the amount of tissue damage.
Pain is influenced by multiple factors such as thoughts, activity, sleep, mood and stress.
Acute pain serves a useful protective function to warn of danger or injury.
Chronic pain results from a hypersensitive nervous system and usually no longer warns of damage.
Many treatments, can help 'turn down' a hypersensitive nervous system, reduce pain and improve quality of life.
COMMON MISUNDERSTANDINGS BETWEEN PATIENTS AND MEDICAL STAFF:
Cause of pain:
- What medical staff say: There is no physical cause for your pain.
- What the patient hears: Another medical professional is dismissing my pain as me being crazy or making it up. No one believes me. It's not all in my head!!!
- What the medical staff means: I want to reassure you that nothing serious that will cause damage to your body is causing your pain.
- What medical staff say: I'd like to refer you to the psychologist/psychiatrist.
- What the patient hears: He thinks I'm making this up or I'm crazy.
- What the medical staff means: Living through chronic pain is really tough, and stress makes us more sensitive to pain, so here is some support to help you deal with it.
FACTORS THAT MAKE PAIN WORSE IN EHLERS-DANLOS SYNDROMES:
- Psychosocial factors: stress, hopelessness, anxiety, pain-related fear
- Decreased physical fitness: deconditioning, muscle weakness, decreased cardiovascular capacity
- Central sensitisation: 'increased responsiveness of pain-encoding neurons to normal input, and/or response to normally subthreshold (pre-pain) inputs' (IASP 1994)
Chronic pain causes the central nervous system to get 'ramped up' so it becomes even more sensitive to pain, which becomes a vicous cycle
Individuals with HSD/hEDS are six times more likely to have central sensitisation than others (Scheper 2016)
WHAT TREATMENTS/INTERVENTIONS CAN HELP PAIN IN EHLERS-DANLOS SYNDROME?
Research says that EDS patients need multidisciplinary teams to improve their pain (Ashton & Hakim 2005).
- Medical specialists
- Other health care professionals
- Interdisciplinary: the ideal is to a get a team of specialists to work together
- EDS Specialist Clinic: (if available) specialists working together, integrating strategies toward common goals
- Pain clinic: can be very helpful to create a multi-layered pain management plan
- Exercise! This is the one intervention with very good evidence for improving pain in EDS.
Exercise programmes should be individualised and led/supervised weekly or fortnightly by a physiotherapist (Kemp et al 2010; Pacey et al 2013)
At-home exercises should be done 5 to 7 times per week
Start very slowly and build up very gradually
If it hurts a lot you are likely doing too much
The question is: What 'dose' of exercise do I need to reach my goal without hurting myself. 'No gain without pain' is NOT the right approach with EDS.
WHAT ELSE CAN HELP PAIN IN EHLERS-DANLOS SYNDROME? (not research-based, but reported to work for some with EDS)
Manual therapy (physiotherapist; osteopath)
Splinting: should be dynamic (allow some movement) and temporary to prevent muscle deconditioning
Distraction, mindfulness, deep breathing
Pacing: avoid the 'Boom and Bust' cycle!
Do what works for you and if at all possible something that you enjoy so it's not boring or a chore
Ask yourself: Is this treatment worth the time, cost and effort for 'x' amount of gain? Only you can answer that.