Self Managing EDS

Ehlers Danlos Syndrome Support

Here are a collection of natural resources for people living with Ehlers Danlos Syndrome, hypermobility joint syndrome and hypermobility spectrum disorder. All are genetic collagen defects that have an affect on every aspect of life not only the physical body. As an invisible condition most have been misunderstood, neglected and gaslit by the allopathic / Western medical profession, in my experience both the NHS and private practice. I myself live with EDS and have spent many years finding ways to support the symptoms naturally, to increase resilience and the ability to cope. It's been a difficult road to travel, with many trials and errors. I have been told by more than one consultant over the last 15 years to develop a stiff upper lip as there is nothing that can be done.

I teach chronic pain and chronic health courses to share my strategies with others, so they too can develop self responsibility and regain some balance. In 2019 I taught a three month course on living with chronic pain, to help support people who had gone through the chronic pain clinic at my local hospital, where allopathic modalities had been exhausted and people were still suffering. Luckily natural, alternative and complementary medicine therapies are there to support mind, body and spirit, including my specialism in Tai Chi, Qigong, meditation, breath work and relaxation techniques. You can develop strategies to live a better quality of life, it's not easy, it's not passive, and it takes equal measure of grit and self compassion. I often get emails from people living with hypermobility asking how do I cope or what my strategies are outside of Western medicine. This article looks in detail at self managing chronic health. You can also join my Patreon community for those living with chronic health and wishing to be proactive in their self care management.

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.

Here is my experience, of many years trial and error to find what exercise helps reduce my pain levels and importantly maintains some level of control over the physical and postural symptoms. Every day I practice a combination of Tai Chi, Qigong, yoga and mobility exercises. Some days when I am in a flare it may be a short session, and others it may be multiple short sessions in one day or one much longer session. I respond to each day and do as much as I can physically as movement helps me so much. I love Nordic walking as the poles help me support my spine and give me something to hold onto. I find swimming difficult as to maintain a head position causes me more pain and fatigue, and I do not swim in chlorine treated water. I also find it difficult to hold heavy weights without detriment to my joints or causing flares.

I exercise as much as I can without crashing into my fatigue and pain baseline. Through trial and error I have found out what exercises helps sustain me the most, what releases the muscles and softens the connective tissue and what helps strengthen my muscles in a safe way. This means not hyper extending my joints, not hyper compressing my joints, having awareness of my posture and alignment, not moving my structure into an unsafe position, training in a rebounding way without impact using the elasticity of the body to soften the connective tissue and open the joints, applying relaxation to muscles that are chronically fatigued, all whilst breathing deeply.

It is only through regular Tai Chi and Qigong practice that I can do all of this. Most importantly I am able to root my joints whilst lengthening and relaxing the connective and soft tissue in an integrated whole body movement way. These days I rarely become injured during exercise, instead my injuries are in my daily life, being unpredictable or when not concentrating. When injured I can still exercise, reducing the intensity and movements to what is management to my baseline. The worst thing I can do is stop moving.

If I do not exercise daily, I spiral quickly and move towards a body that is too painful to move, and a body that feels trapped within itself with overtight connective tissue. I exercise even when I don't want to, even when I am in pain (all the time) and even when I am fatigued. It take commitment and grit. My pain experience is managed better with Tai Chi and Qigong. When performing movements slowly with focus and deep breathing for a minimum of 20 minutes, this releases a natural pain relief response in the body.

With hypermobility, most people I meet and begin working with have a fear of movement and lack of confidence in movement. This may be the fear of subluxation, fear of dislocation, fear of hyper compression, fear of hyper extension, fear of chronic pain, fear of acute pain, fear of injury, fear of fatigue, and the fear of fear itself. This can be the hardest barrier to work through. The more fearful you become over "something" the more you shy away from it. When this "something" is exercise, it has a compounding effect on the mind and body. Your body language closes and withdraws, protecting from the perceived threat, and the stress response jumps into action to bring you into high alert and hyper vigilance. This is exhausting!

Your range of motion gets smaller, you may find you stop doing things or unable to do things, the muscles and connective tissue get tighter and tighter, the joints are not being nourished or stabilised, the lymph system is not able to pump, flow and drain properly, blood circulation slows, oxygen intake reduces through an inflexible torso space and shallow breathing, the heart rate and blood pressure increase, happy brain chemicals are not produced, the stress response is dominant through fear and worry which realises damaging hormones into the body (adrenalin and cortisol), among many other negative physiological and mental health effects. In my personal and professional experience of living with EDS and hypermobility and working with many clients who live with the condition, a lack of exercise is the worst thing you can do, point blank. We have to feel the fear and do it anyway as the saying goes. With a professional, through practices like Qigong and Tai Chi you can learn how to work through the fear response in the mind and body, to learn a safe range of motion, to learn when to lean into pain, to learn how to open the body up to move into the relaxation response, to learn how to control your movements in a relaxed way, and to rebuild your confidence and increase body awareness. Take time to become an expert in your body as this helps the ability to cope and self manage. It's not easy, at times brutal, and worth every moment of effort. I can say as a person with EDS, I do not have any fear in movement, I have complete trust in my body.

The fear of stillness means the fear of the joints hyper compressing when static and stationery. This could be when sitting, standing, lying down or being in one position for long periods of time where there is little movement. Examples are when driving, watching TV, sitting at a desk on a computer, being on Teams or Zoom for long periods, queueing, standing for work, standing for leisure, sitting at the theatre/cinema, sleeping etc. The hypermobile body can be like a ragdoll, where the joints are too loose and the muscles and connective tissue are too tight. This means when still, the soft tissue body needs to work really hard to keep the joints stable, which means working against gravity and the weight of the body which is pulling the body downwards. When sitting for long periods it is common for the joints to hyper compress as it takes too much energy on already chronically contracted muscles to continually hold the body up and to hold the joints open. Over time as the joints slump and compress together, this can cause subluxation or an increase in pain and fatigue. Many with EDS find they have to keep moving frequently, never staying still for too long to avoid this. Some manage working at a computer with a variety of positions e.g. standing desk, seated desk, and high stools on high tables. This variety enables frequent movement and a change in position to and avoiding compressing into the joints. Yet living with chronic fatigue can also mean that you have to sit or lie down for long periods of time, even when you do not want to. It's a delicate balancing act of moving and exercising enough, and resting and being still enough.

With hypermobile joints, where they dislocate or sublux, or hyper extend or hyper compress, it is essential to build muscular strength around the joints. Tai Chi and Qigong are ideal exercises for hypermobile joints, as the joints are not expanded or compressed to extremes, the movements always maintain a slight bend in every joint. The movements are also performed slowly which means the likelihood of injury or going passed your physical boundary are much reduced, as you move your body deliberately in a safe and contained way, with awareness. The movements are also surprisingly demanding on the body and help strengthen and condition your muscles in an integrated way with no impact.

For me personally, I try to wear compression wear, compression bandages, physio tape, splints, braces and supports as little as possible, and I do not wear them when I exercise unless I am in a bad flare. There is a delicate balance between supporting your joints to lessen pain and fatigue, and allowing muscles to atrophy and weaken which causes many more problems later down the line. My personal tip is to wear compression supports at night, as this helps me avoid any rogues posture positions whilst I sleep. Through trial and error this usually helps me gain some relief, comfort and support for the following day. I have tried many different types of compression supports and would use them all for different reasons and levels of pain and fatigue. That all said it is not uncommon to wear them during the day, even for a few hours at a time. Compression support is not a black and white, it is learning about your body and how it responds to each type.

I also wear orthotics when walking as the bones in my feet cannot hold my bodyweight up without subluxating. Again, I take them out when exercising unless I need to. There's a video from my previous personal trainer Dave Hedges, who shows the function of the feet and how to increase the arch in your foot through toe and foot positioning. This video is only a few years old and it has changed the way I walk. I used to be someone that could not wear bare feet due to pain and subluxation, as I used to scrunch up my toes to try and create a rounded arch. Which means I can't walk very well as I am using the outside edge of my foot and the tips of my toes, so without orthotics I hobbled. Instead I now raise up my toes and put pressure through the front balls of the feet. This unseemingly little adjustments means whenever I feel like my feet are weak, I can adjust my toes inside my shoes or when walking in bare feet, to bring everything back into place. I still need orthotics for long walks, but this has been revolutionary for me, and my EDS students. Here's the video link.

How you hold yourself matters. A poor posture over time can lead to pain, tension, muscle sprains, fatigue, headaches, migraines, arthritis, degenerative discs, degenerative joints, compromised nerve supply, nerve damage, spine disease, and at worst irreversible damage. With the hypermobile body it is so important not to become a ragdoll, slumped down in a collapsed structure. Yet with pain and fatigue levels, sometimes this is all you can do. Learn how to align your posture and take time each day to train your body to hold itself efficiently, as this will help lessen muscle pain and fatigue over time. It is not a quick fix and you may need professional support e.g. physiotherapy or physical therapy to help. The practices of Tai Chi, Qigong, yoga and Pilates, any of the mind body movement practices that are slow and focused are the quickest ways to get in touch with your posture, to know when the body is out of alignment and to know how to retrain it towards neutral.

With EDS, typically the soft and connective tissue are too tight, and do not have the same elastic functioning as a healthy person. This is due to the lack of collagen / lack of stretchiness in the fascia, ligaments, tendons and sinews. The muscles are also over-working 24/7 trying to stabilise loose joints which means they are chronically contracted. The muscles think they are helping your structure stabilise, however this causes more pain and fatigue from unconscious inappropriate muscle functioning, causing a hyper-tightening physical structure. For some with EDS this means they go through ground hog day, that each morning their physical tension has returned no matter what loosening, mobility or flexibility work done the previous day, days, weeks etc. The body resets back into a hyper tightened state.

For me personally, I feel like I live in an ever tightening physical straight jacket, that draws my posture towards the foetal position daily. At worst, the fascia under the skin feels like it is strangling me and the pain is difficult to cope with. My muscles live in a state of chronic contraction and are also prone to injury. I have spent 15 years trying to unwind, unbind, loosen, let go and relax my muscles and connective tissue. There is little gain over the symptoms. However, without daily exercise and trying to unbind holdings in the body, my pain and fatigue spirals, and that tightening gets more and more debilitating. The most important thing you can do for yourself is to exercise daily, to do your best to keep lengthening the connective tissue and release tension over and over again. That is why Tai Chi, Qigong and meditation are the most important part of my self care kit, as the principles of movement aim to release muscular tension, elasticise the connective tissue and restore postural balance in the body.

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.

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.

Mental fitness can include learning mindfulness, meditation, relaxation techniques to help calm and ground the mind. Over-thinking can also be common. Finding healthy distractions that help keep your focus on the present is a valuable strategy. Find ways to support and nourish your mental health as a priority and foster self compassion. I can also personally recommend talking therapy with a professional psychotherapist or psychologist as a way to help mentally copy with the physical symptoms and changes to lifestyle. Talking things through with a person that is not connected to you is very helpful to fully express your experience in a safe and confidential space.

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.

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.

When exercising train to your unique physical baseline based on how you feel each day. Follow the ebb and flow of your physical health with kindness and support. Use the same 60-80% approach and never work outside of your baseline. Use warm ups as a physical pain diagnostic to come into awareness with what your abilities are for that day. This approach gives you longevity, whether working out 10 minutes per day or one hour, you flow with the body, not pushing or fighting it to perform. Give the body what it needs and craves in movement by listening attentively.

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.