Hypermobility is when the joints in the body can bend further than is considered a normal range of movement. Many people live with asymptomatic hypermobility without any pain or discomfort. It can even be an advantage for dancers, athletes, and gymnasts who need to achieve a large movement range for their profession. Hypermobility can even be ‘acquired’ in some cases, where people are forced into positions required for dance or gymnastics. These people know how to move well, control their range of motion, and do not experience any other symptoms with their hypermobility, such as chronic pain or injury.
Being hypermobile does not mean you have a hypermobility syndrome. But what if the hypermobility becomes symptomatic or you have a connective tissue disorder such as Ehlers-Danlos Syndrome?
What’s Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndromes or EDS are a group of hereditary disorders of connective tissue. The underlying cause is the abnormal structure or function of collagen and connective tissue proteins. There are 13 different types of EDS – some are very rare and only affect small numbers of people or families. The most common form of EDS is the hypermobile EDS type – hEDS.
What are the main issues a doctor or rheumatologist would look for in diagnosing EDS?
· Generalized joint hypermobility – often accompanied by joint, muscle, and nerve pain.
· Soft, velvety skin, stretchy skin, stretch marks or skin that bruises or tears easily, and poor wound healing.
EDS comes with many other symptoms and related issues too. Here are just some examples
· Chronic, widespread pain – not resulting from any particular trauma or accident. The pain can often be made worse by exercise.
· Joint pain and muscular tightness. EDS can often be mistaken for Fibromyalgia.
· Headaches and migraines – caused by instability, posture, tension amongst others.
· Dizziness upon standing or overexertion from exercise. This can be due to a drop in blood pressure.
· Heat intolerance or chemical sensitivity – this can be due to the over-activation of mast cells (more on mast cells in the next blog).
· Chronic fatigue – extremely common with EDS. People with EDS need to work so much harder just to be upright as gravity wants to pull their joints down.
· Joint subluxations or dislocations – due to the ligament laxity, some people experience subluxations (which are partial dislocations) of their joints.
· Irritable bowel syndrome and other digestive issues.
· Pelvic girdle pain, pelvic floor issues, prolapses, and hernias.
· Pronated or flat feet and frequent ankle sprains. People with EDS can experience painful walking or use mobility aids.
· Frequent chest infections and pneumonia.
· Mitral valve prolapse in the heart. This is a very common sign of EDS.
· Poor sleep habits. This can be due to pain, insomnia, not being able to get comfortable.
· Allergies and food intolerances. This is another sign of mast cell activation, which we will discuss next time.
If you notice the list of symptoms, they impact not just the muscular system of muscles, joints and ligaments. There is impact to the digestive system, circulatory system, autoimmune system, cardiovascular system, endocrine system, and nervous system. Connective tissue is present everywhere in the body. It connects, supports, binds, and separates other tissues or organs. If we have a connective tissue disorder, therefore, it could make sense that multiple systems in the body are going to be affected. Think of the connective tissue as a cellular glue that keeps everything together and strong. If the glue is not as strong as it should be due to a disorder, it is going to have a far-reaching impact that for many people can be very disabling.
Some people can suffer from the Terrible Trifecta – EDS, Postural Tachycardia Syndrome (POTs), and Mast Cell Activation Syndrome (MCAS). We will delve deeper into these conditions in future blogs in this series. But living with this overlap of conditions needs careful management and can make daily life very challenging for some people.
Other connective tissue disorders you may come across are:
· Marfan Syndrome
· Osteogenesis Imperfecta
· Epidermolysis Bullosa
These disorders are not curable, so it is really a case of finding a strategy to help with the management of the symptoms.
Hypermobility Spectrum Disorder (HSD) is the new name for Joint Hypermobility Syndrome. This can be diagnosed when EDS has been ruled out. It is more common than EDS, but its severity can be similar and requires the management of symptoms too.
This sounds like me - how do I get a diagnosis?
You would think that a condition like this with so many features would be easy to spot. There’s an old saying “if you hear hoofbeats, don’t expect to see a zebra”. Basically, our medical system is not looking for EDS. It is looking for ‘horses’ – more general conditions. Many doctors have not heard of this condition and don’t know what to look for. Sadly, this means that for many people the journey to diagnosis can be long and convoluted. Poor awareness amongst medical professionals means it can go undiagnosed. It is common to be wrongly diagnosed with another condition (like Fibromyalgia, for example).
Most medical doctors should be able to follow the diagnostic criteria and give a diagnosis of EDS or HSD, but because EDS are genetic disorders, physicians may refer patients to a geneticist for testing.
I have EDS. How should I manage it?
EDS and HSD require a multi-disciplinary approach to care and management often involving teams, specializing in pain, physical rehabilitation, gastroenterology, urogynaecology, neurology, and mental health professionals. I’m a movement therapist specializing in the management of EDS and HSD, so my focus is on the appropriate exercise plans for people.
For a condition such as EDS or HSD, there is an overall agreement in the medical profession that exercise is key to the health of these clients. A recent quote states that people with EDS and HSD
“need to try to retrain or increase their muscle strength and tone as much as possible in order that their muscles can compensate for the effects of defective connective tissue in other supporting structures such as ligaments”
Understanding hEDS & HSD, Claire Smith
An appropriate exercise program can be essential to help reduce pain, decrease tissue sensitivity, build strength and reduce injury. But not all exercise is equal, and it is important to work with a therapist or teacher who knows about EDS and HSD.
Or if they don’t know about it, are they willing to learn?
Aside from the physical symptoms of EDS, it is known that people with this syndrome also lack motor control skills, lack coordination, and have a lesser sense of proprioception (our ability to sense where our body is in space). There tends to be a lack of body awareness, which goes with control and stability. A modified and individually adapted exercise program is often an excellent way forward to build these much-needed skills.
As a movement therapist, I am also looking out for things like
- Lack of awareness can mean we are not aware when joints are locked, or posture is out of alignment.
- The unconscious act of locking joints can set up a spiral of pain and dysfunctional movement.
- Due to a lack of proprioception, hypermobile people can be more accident-prone. I make my exercise environment safe and calming.
- Due to lack of proprioception and control, hypermobile people can potentially move into ranges of movement that are considered beyond ‘normal range’.
- Moving into these bigger ranges of movement does not tend to hurt – it is normal when the body has not been taught joint control.
- Remember “just because you can, doesn’t mean you should”. Part of my role is to teach people controlled joint movements to avoid injury and strain.
If you’re living with chronic pain due to your EDS or HSD and are looking to explore new ways of managing it, I recommend that you start at the very beginning: breathing. This is the first principle in my hypermobility movement method – The Integral Movement Method.
But how does the way I breathe make any difference to my pain? I hear this a lot.
Without breath, there is no movement. This is a mantra I return to with each and every client. Our breath is our very essence and to be present with our breath is the first step to relieving the body of stuck stress and pain.
Breathing has a huge impact when it comes to powering and relaxing the body. Each breath allows you to release tension in the body and promote fluidity when it comes to movement. Taking control of your breathing can help unlock movements you may have thought were beyond you.
As you take the first steps towards thinking about your breathing, here are some easy steps you can follow at home:
· Sitting or lying in a quiet place, close your eyes and place your hands on your belly.
· Try to observe your breath flowing in and out of your body without trying to change it.
· Notice the rise and fall of your belly and begin to count every breath in your head. Inhale 1, exhale 2, inhale 3, exhale 4 and so on until you come to 10. Then start again at number 1.
· Try to stay focused on the counting of the breath, without distraction.
· With every exhale, feel the tension melting from your muscles and mind as the body softens and tension dissolves.
I’m a huge believer in the life-changing power that movement can have for people living with chronic pain conditions like EDS, but without breath, we can’t have effective movement. So, take a moment to focus on your breathing – it’s the best place to start.
See you soon for the next blog in our hypermobility series.
Movement Therapist and Hypermobility Specialist