Ehlers-Danlos Syndrome (EDS) and interoception

by Jeannie di Bon

This article will take a brief look at the connective tissue disorder Ehlers-Danlos Syndrome (EDS) and how this condition may impact an individual’s interoceptive abilities. 

What is Interoception?

Interoception is the sense of the physiological condition of the body including sensations from within such as heartbeat, respiration rate, hunger, thirst, and visceral sensations.  It plays an important role in emotional experiences and self-awareness.   It is different to proprioception, which also involves bodily sensations, but this relates to the relative positioning of parts of the body in space and how much effort is being employed when moving. 

What is Ehlers-Danlos Syndrome – isn’t it just hypermobility?

In 2017, the new International Classification for EDS identified 13 sub-types of EDS, with hypermobilie EDS being the most common.  

EDS goes way beyond being bendy and hypermobile.  It is an inherited heterogeneous group of connective tissue disorders, characterized by abnormal collagen synthesis.  This condition can impact the skin, namely tissue fragility and skin extensibility, ligament laxity, joint pain and subluxations, blood vessel abnormalities in terms of size, shape and elasticity, and other organs.  It is a multi-systemic condition and patients often present with seemingly unrelated conditions.   This can lead to misdiagnosis, long delays in diagnosis and treatment and sadly, medical trauma for some people.  These issues can culminate in increased anxiety and fear in EDS patients.  It can be a challenge for these patients to find adequately trained or knowledgeable practitioners and that can be stressful.  It is a complex condition that really impacts every aspect of a person’s life – both physically and emotionally.

How does Ehlers-Danlos Syndrome impact interoception?

Individuals with EDS can experience both proprioceptive and interoceptive difficulties.  Connective tissues play a crucial role in the structure and function of the bodily systems, including those involved in proprioception and interoception.  Proprioception can impact the ability to perceive where limbs are in space, leading to lack of controlled movement and injury.  Interoception difficulty impacts the ability to interpret bodily sensations.   This can manifest in the following ways:

• Pain – It can be challenging to accurately identify and localise pain.  Pain is often described as widespread.  Pain intensity and type can be difficult to assess.  I once asked my Zebra Club community to describe their pain and the list was expansive and diverse.  Pain is a very individual experience.
• Autonomic Dysfunction – Individuals with EDS often experience dysregulation of the autonomic system, such as heart rate and blood pressure.  This can impact awareness of physiological states.  A condition known as Postural Orthostatic Tachycardia Syndrome (POTS) is often a comorbidity of EDS.  POTS is a form of dysautonomia, where the body’s autonomic nervous system fails to regulate blood flow properly when moving from supine to upright.  Individuals can find it challenging to recognise the subtle changes in autonomic responses.
• Digestion – There can be challenges in recognising hunger, thirst, or fullness.  It is not uncommon to have gastrointestinal issues with EDS.
• Fatigue – Early signs of tiredness or overexertion may not be recognised, leading to boom-and-bust energy fluctuations or flare ups.  Brain fog and post exertional malaise can be common.
• Temperature – Regulation of body temperature can be impaired in EDS.  Individuals are often unable to regulate their own temperature and experience being too cold or too hot.
• Cardiovascular – Heart rate variability and breathing pattern dysfunction can be related to interoceptive difficulties.
• Visual Cues – Many people will not trust their internal bodily signals and can start to rely on external visual cues instead.  This can manifest in skin colour changes with blood pooling for example.  But this may be too late to avoid consequences like fainting or dizziness.
• Central Nervous System – The brain’s processing of sensory information can be impacted by EDS.  This could change the way the brain interprets signals from the body and increase interoceptive challenges. 

What can we do as therapists to help to improve interoception in EDS patients?

There are several ways to improve sensory processing and pain management for our EDS patients and clients. 

• Working on improved proprioception and body awareness can help.  In my Integral Movement Method (IMM) breath and relaxation are the first two principles to help start promoting this aspect.
• Yoga, Pilates, and tai-chi can be helpful in promoting mindful movement and joint control.
• Practising mindfulness or meditation can help cultivate present moment experiences of body sensations.  We do have to consider, however, that many of our patients may find focussing on bodily sensations a challenge, especially if they are dealing with a trauma.
• Deep breathing to calm the nervous system and create a sense of safety is key.  Breath practice always comes before any physical movement practice in my IMM.
• Physiotherapy, Physical Therapy or Movement Therapy with an EDS-aware therapist can be helpful in building awareness, coordination, and control.
• Exploring pain management with pain neuroscience education can help reframe an individual’s response to pain that is not triggering.  
• Education is key.  I firmly believe knowledge is power. Many patients with EDS have not experienced working with an EDS aware therapist.  They do not understand how EDS can impact their bodily awareness.  We can help them on that journey and take some of the fear away.
• Nutritional considerations – working with an EDS nutritionist or dietician can help someone identify what foods might be triggering bodily responses.   Mast Cell Activation Syndrome (MCAS) is common in people with EDS. MCAS is a condition where the white blood cells involved in the body’s immune response become overly sensitive and release excessive chemical mediators like histamine.
• Emotional support in the form of a mental health professional could be helpful in reframing responses to interoceptive challenges.
• Connection with a community who really understands.  So often people feel isolated and alone, totally unaware that other people are experiencing the exact same thing.  This is healing and calming.  You can learn more about the online community I have built at www.thezebra.club.

Working with an EDS aware therapist can be lifechanging and can go a long way to help improve the quality of life for many people living with this condition.  Improving interoception by adopting some of the management strategies above can help reduce the fear and anxiety of living with a chronic illness.  

www.jeanniedibon.com

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