Hypermobility and Ehlers-Danlos syndrome support
Do you often feel that your joints are unusually flexible? Have you experienced repeated sprains, persistent aches, fatigue or injuries that never seem to have a clear explanation?
For many people, the answer may be hypermobility.
Hypermobility means that some or all of your joints move beyond the normal range. While some people are naturally flexible and experience no problems at all, others develop pain, instability and a wide range of symptoms that affect everyday life.
In some cases, hypermobility is associated with a group of inherited conditions called Ehlers-Danlos syndromes (EDS). The hypermobile type, often known as hEDS, is thought to be the most common.
How common is hypermobility?
Joint hypermobility is much more common than many people realise.
Research suggests that around 20% of people have some degree of joint hypermobility, although the numbers vary depending on age, sex and ethnicity. Many people never experience any difficulties, but for others it can become a significant source of pain and frustration.
Hypermobile Ehlers-Danlos syndrome is believed to affect at least 1 in 3,000 to 1 in 5,000 people, although specialists believe it is considerably underdiagnosed. Many people spend years searching for answers before receiving a diagnosis.
Common signs and symptoms
Everyone's experience is different, but symptoms can include:
- Joint pain or stiffness
- Frequent sprains or strains
- Joints that feel unstable or give way
- Back, neck or pelvic pain
- Muscle tension from the body constantly trying to stabilise loose joints
- Fatigue or feeling exhausted after everyday activities
- Poor balance or coordination
- Easy bruising
- Soft or stretchy skin
- Digestive problems
- Headaches or migraines
- Jaw pain or clicking
- Anxiety, particularly when living with long-term pain or uncertainty
Some people also notice that one part of the body improves only for another area to become painful. This can happen because the body is constantly adapting and compensating.
Why diagnosis can take so long
Many adults tell me they have always been described as "double-jointed" or "very flexible". Others remember being able to do unusual party tricks as children.
Because flexibility is often seen as a positive thing, the difficulties that can come with hypermobility may not be recognised. People are sometimes told that their pain is simply due to ageing, stress or overdoing things, when there may be a bigger picture.
The good news is that greater awareness means more healthcare professionals are recognising hypermobility and Ehlers-Danlos syndrome than ever before.
Why strength is so important
One of the most helpful things many people with symptomatic hypermobility can do is build strength gradually.
Strong muscles help support joints that may not be as stable as they need to be. This can reduce the amount of work the body has to do simply to keep you moving.
I often encourage clients to consider:
- Strength training with appropriate guidance
- Clinical Pilates or Pilates taught by an instructor familiar with hypermobility
- Gentle balance exercises
- Walking, swimming or other low impact activities that feel manageable
The key is to progress slowly and listen to your body. More exercise is not always better. The right exercise, at the right pace, is often far more effective.
How Bowen Therapy may help
Many people I see are unaware that they may be hypermobile, some have been diagnosed with hypermobility or Ehlers-Danlos syndrome and some suspect they may have it.
Bowen Therapy is a gentle, hands-on therapy that aims to encourage the body to relax and reset patterns of muscle tension. Sessions are calm, with pauses between gentle movements that allow your body time to respond.
While Bowen Therapy is not a cure for hypermobility or Ehlers-Danlos syndrome, many clients tell me they experience benefits such as:
- Feeling less muscular tension
- Greater ease of movement
- Reduced discomfort
- Improved relaxation
- Better awareness of posture and movement
Treatment is always tailored to the individual because no two people experience hypermobility in exactly the same way.
Where appropriate, I also encourage clients to work alongside other healthcare professionals and continue with exercises that help improve strength and stability.
Looking at the whole person
Living with ongoing pain or uncertainty can affect far more than your joints.
Many people feel exhausted from constantly managing symptoms. Others become anxious about movement because they fear another injury.
My approach is always to look at the whole person, not just the area that hurts. Physical comfort, emotional wellbeing, sleep, stress and confidence all play an important part in recovery and quality of life.
You are not imagining your symptoms
If you've spent years wondering why your body seems to ache more than other people's, why injuries happen easily or why you never quite feel stable, you are not alone.
Whether you already have a diagnosis of hypermobility or Ehlers-Danlos syndrome, or you're only beginning to wonder if it could explain your symptoms, support is available.
With the right combination of education, appropriate movement, strength building and gentle therapy, many people find they are able to move more comfortably and feel more confident in their bodies again.
There are many books on the subject now. One of my favourites is by Isobel Knight who used to be a Bowen Therapist and many clients I tell about this book say they find it very useful.
Depending as to where you live, I can also recommend some very good Pilates teachers and personal trainers who understand the needs of people with hypermobility and Ehlers - Danlos Syndrome.
