Learning to breathe using the diaphragm is essential to mind and body health. The breath connects to our parasympathetic system, the relaxation response and stimulating the vagus nerve.  Breath work also massages the internal organs and pulses the connective tissue and muscles around the torso. At the very core of my teachings is breath work. Anyone can learn to breathe better. It's the one thing you continue to do when you cannot do anything else. If you are bed bound, training the breath or using the breath as a meditation practice helps regain some of the control you may feel you have lost. The techniques do not need to be complicated, a simple deep abdominal breath over 20 minutes whilst relaxing does wonders. It is the gateway to relaxation. Follow my free online breath work course called 'Nourish through Breath'.

The most important strategy for hypermobile joints, chronically contracted muscles and tight connective tissue is regular exercise and movement. This is the last thing someone with Ehlers Danlos Syndrome or hypermobility wants to hear. Asking someone when they live with chronic and acute pain to exercise daily seems brutal, it's not. It's a lifeline to improving quality of physical life and reducing pain. You need to learn to move in a safe and focused way, where you can lean into pain safely whilst you exercise, to reduce your overall pain experience. Low or no impact is recommended to avoid upsetting the joints or you can try body weight exercises or weighted exercises depending on what your physical baseline and joints can manage. Learning to soften the soft tissue and release physical tension is also important. If you are new to exercise my recommendation is to work with a professional to begin with to help ensure you pace appropriately and do not go through the boom and bust cycle.

People living with EDS and hypermobility joint syndrome typically have less body awareness / proprioception. This means we struggle with knowing where our body is in space without using our eyes. We don't fully compute spatial awareness, or where our bodies are in the environment. This usually is seen as a child that is clumsy, misjudging distances, tripping, falling and banging into things.  It is possible to improve your body awareness through moving and stillness posture exercises where you specifically train the right / feeling brain. I find practices like Tai Chi, Qigong and Zhan Zhuang offer the most mind body postural connection. You can become aware of your joint and limb position, physical alignment, postural shape and the relationship between empty space and your posture. These are not thinking or cognitive practices, instead they fire up the neural pathways within the right brain that control the creativity, imagination and physical feelings, which is usually the less dominant 'minds-eye' side. Over time with practice, you can develop better proprioception and a deeper understanding of how you hold yourself in your alignment as well as how your body relates to the environment.

Developing the skill of pausing, awareness, meditation and mindfulness are all valuable tools that build mental resilience. Start small with a few minutes per session and build up to a longer practice gradually over time. Remove expectations and the pressure to perform and simply come into awareness. This could be awareness of the breath, awareness of the body or awareness of sensation. Meditation can be very simple, and that simplicity can be very effective and easily accessible. Bringing the mind into a neutral state is powerful as we don't want to live in the past or the future all of the time. Find time to just be, whether lying down, seated or standing. If stillness meditation feels one step too far for your personally, try a moving meditation like mindful walking, Tai Chi walking, or the practices of Tai Chi and Qi Gong.

Developing a negative response or reaction to pain can cause more pain. Your body language and mental state when living with chronic or acute pain can also worsen the pain experience.  Changing your response and state of being is a valuable strategy to develop.  It does not mean putting yourself into situations that worsen your pain, or pushing through your pain boundary or forcing yourself not to feel pain. Leaning into pain means to express your pain, talks about how it feels physically, how it makes you feel emotionally and the impact on your life. Avoid pain dragging you around mentally as it rages. Leaning into pain means to feel your pain, describe your pain, understand your pain, and most importantly relax into your pain. I call this the absence of resistance, the opposite to tightening up, resisting, holding on and fighting. Letting go of pain can feel like giving up, whereas it is a process of radical acceptance, where you chose not to fight the pain, as the pain will be there whether you reject it or not. You can chose to relax in spite of pain and to release the hold it has on you.

Healthy distractions take your focus away from pain and fatigue. Examples are auditory, visual, kinaesthetic, tactile and olfactory activities. Like listening to bird song in a warm bath, being creative in a hands on way with arts and crafts, doing a journey meditation whilst wrapped up warm in bed, dabbing essential oils on the wrists and temples whilst listening to music or a podcast you love, having a relaxing Swedish or aromatherapy massage, singing and dancing along to your favourite uplifting songs or practising Tai Chi or Qigong and being completely present in the routine / form.  Thoroughly immerse yourself in an activity and use that as an act of mindfulness, where only the activity exists.

Developing mental fitness helps the ability to cope. Living with chronic and degenerative health has a huge impact on our emotional and psychological health. Living with pain is mentally exhausting, living with less resources is mentally exhausting, living with a dysfunctional physical body whether joint destabilisation, chronically contracted soft tissue to digestive and urinary dysfunction is mentally exhausting. Living with EDS can feel like a full time job, and a job that doesn't have any holiday or time off. Recent research discusses the link between our hypermobile bodies, trauma and how the autonomic system interacts. We have lower vagal efficiency, which means the vagus nerve is not working as it should. This means people living with EDS may have increased symptoms of anxiety.

Recognising, removing and reducing stressors is a key part of supporting your mental health. Living with EDS, you are most likely living in the stress response 24/7, which is causing a negative physiological reaction in your body. Stress, fear, worry, anxiety, frustration and all of these emotions are valid for your experience. Becoming aware of the stressors in your life and exploring how you can reduce the impact is a valuable strategy. With stressors that cannot be changed in the short term, learning to relax in spite of the stress you are experiencing is powerful tool to develop. With time, patience and effort you can move out of a stressful state. You can begin to regain control over what outside influences affect you and can change your response.  Any of the slow movement or stillness arts like Tai Chi, Qigong, meditation and mindfulness and great ways to reduce stress as they foster a relaxed state of being. You can also do something you love, be creative, embrace comedy, laugh and smile. These are the key to relaxation. Read more about how bad stress is on the mind and body.

Avoiding the boom and bust cycle is essential when living with EDS. Living with pain and fatigue means you do not have the same resources as the average healthy human. Sometimes called the spoon theory, where you only have so many spoons for all the tasks and activities you need to do each day, rather than an unlimited supply. Approach life with a 60-80% guide, not burning out and then spending days or weeks in recovery.  Or when impossible to avoid, having strategies in place to be able to recover and rejuvenate from a big social or work event. Chronic fatigue is debilitating, there is no amount of force that will help you push through without consequence. Take time to develop awareness of how to be kind and compassionate with yourself by learning to pace. 

In my experience living with EDS, there is no cure, little treatment and no support under allopathic / Western medicine outside of pharmaceutical pain control.  I have explored many alternative, complementary and natural medicine therapies, as trial and error to see what helps.  I can personally recommend homeopathy, my therapist is Eileen Scullion in Ireland who has helped support me using homeopathic remedies since 2008. Another top therapy on my list is regular physical therapy, from deep tissue massage, physiotherapy, neurological massage, myofascial release, trigger point release, medical acupuncture, to McTimoney chiropractic treatment. Traditional Chinese Medicine and acupuncture are also very helpful to manage the symptoms from a holistic perspective.  I also take natural supplements to support my physiological health, a list can be found at the bottom of this page.  Infra red, dry sauna, steam sauna, flotation tanks and hydrotherapy help me to relax and release tired muscles. Find out what soothes your pain and what helps release your chronically tight muscles.