May is Ehlers-Danlos Syndrome (EDS) awareness month and as this is something that we see at PhysioTec very often, the timing is perfect for a blog on this topic. EDS refers to group of connective tissue disorders with at least 13 different subtypes. 12 of these types are very rare and one is far the most common type and it is Hypermobile-EDS (h-EDS) and we see this daily at PhysioTec. Here we answer a few common questions about h-EDS and hypermobility.
What is hypermobility?
The term hypermobility is used to describe a person who has more than the usual amount of movement or flexibility in a joint. This occurs in around 20% of the population. Being extra bendy can be an advantage for certain athletes and performing artists such as dancers, gymnasts, circus performers, musicians and swimmers.
Some people with hypermobility may develop pain and are at greater risk of injury due to their high levels of mobility. If this pain becomes long lasting and occurs in multiple areas then they can be diagnosed with Hypermobility Spectrum disorder (HSD). The word spectrum means there is a large range of presentations, from generally coping with a normal lifestyle with occasional pain to being quite severely affected.
The underlying difference in those with hypermobility, is that these people usually a more flexible type of collagen. Collagen is the fibrous substance that makes up the ligaments and capsules that surround and support our joints, tendons that join muscles to bone, and is an important component of our skin, other connective tissues, our gut, nerves and blood vessels. This is why some people with hypermobility will not only be flexible in their joints but may have digestive issues (Irritable bowel syndrome - IBS, reflux, bloating etc), circulatory issues (feeling faint when standing up too quickly, dizziness, racing heart), stretch marks and scar easily.
A health professional may diagnose h-EDS when there is a family history and other characteristics consistent with this condition. Incidence of h-EDS is estimated to be as high as 1% of the population. Yet despite this HSD and h-EDS are both generally poorly managed and poorly diagnosed even in Australia.
You can take a quick test here on our physiotherapy for hypermobility page, to get a general gauge of your likelihood on having hypermobility.
Getting help for hypermobility in Brisbane?
At PhysioTec we receive referral from health professionals who are recognising hypermobility should be assessed and managed. This includes medical practitioners such as Rheumatologists, GPs, Sports Physicians and Pain Specialists, and other physiotherapists or exercise professionals. We also see many patients that find us through online support groups and google searches. Most of our patients are suffering with persistent or recurrent musculoskeletal pain. In the new patient questionnaires that we send out to patients booked to visit our clinic, when asked to identify the problem region, those with hypermobility often select multiple regions or the ‘whole body’ option! This is because hypermobility is a systemic condition impacting on the whole body.
Our patients with hypermobility often present with:
JOINT RELATED PAIN
Related to a lack of strong ligamentous support, and certain postural and movement habits that tend to overload the joints.
NERVE RELATED PAIN
Those with hypermobility are at higher risk of developing ‘neuralgia’ – painful nerves
MUSCLE RELATED PAIN
Muscles can become overworked around mobile joints, trying to compensate for the lack of ligamentous support. Ironically then, those with hypermobility often feel stiff.
At PhysioTec, we work with you to develop a comprehensive plan to address multiple body areas.
What can a physio do to help me with my hypermobility?
Good question! There is so much that a physiotherapist that understands hypermobility can do to help with current symptoms and long-term management. Although your ligaments might be less effective at supporting your joints, the muscles that surround the joints can be trained and strengthened to provide the extra support you need. Optimising how you hold your body (particularly in sustained positions) and how you move your body (particularly during repetitive tasks like walking) can also make a big difference, particularly in longer term management of hypermobility.
Physiotherapy treatment for hypermobility in Brisbane.
Here are some treatments for hypermobility that we can provide at PhysioTec:
- A thorough assessment of your mobility and current problems.
- Education around your condition and strategies for managing pain, fatigue and staying active
- Postural and movement assessment and training. This includes retraining of repetitive everyday tasks such as walking, stairclimbing, rising from a chair, standing on one leg, squatting and sometimes even rolling in bed.
- Assessment and training of deep muscles that support and protect your joints. Here at PhysioTec in Brisbane, we have physiotherapists skilled in the use of Real Time Ultrasound that provides a unique ability to visualise and train these deep muscles.
- Hands-on treatments where appropriate, such as massage and needling to provide some immediate relief.
Reducing ‘stiffness’ associated with excessive muscle use. Hypermobile people often use excessive muscle contraction to stabilise around their joints. This can be very tiring an inefficient, not to mention uncomfortable in the muscles, underlying joints and transiting nerves. We help you improve muscle efficiency and strength, so you don’t need to use as many of those muscle fibres. We can also teach you safe stretching and suggest massage tools that can help ease the muscle tightness and pain in the meantime.
Strength and conditioning training and the development of safe, paced (slowly graduated) gym-based programs, that factor in fatigue that is common in those with hypermobility. We also have group classes that include a combination of Pilates and safe strength training.
I’m not sure if I have hypermobility? How do I know if I have hypermobile-Ehlers Danlos Syndrome?
You might have had someone tell you that you are hypermobile or noticed that you seem to be able to do things with your body that others can’t do as easily. This might have led you to the internet and perhaps you fell down that rabbit hole of reading about the worst-case scenarios. This can be unnecessarily scary! As we mentioned earlier in this blog, there is a wide spectrum of normal mobility and many people are just at one end of the normal mobility spectrum. This doesn’t mean you have Ehlers Danlos Syndrome or even if you have Ehlers Danlos Syndrome, that you will ever develop severe or associated symptoms. There is no genetic test for hypermobile-Ehlers Danlos Syndrome, so the diagnosis is based on the patient’s symptoms, history and a physical examination. There are many people that might fit into the category but have relatively mild symptoms.
At PhysioTec, our physiotherapists can assess your level of joint mobility and other factors that might be associated with hypermobility, to determine the level of severity of your condition. They will then help you develop an individualised plan to manage any associated musculoskeletal pain that you are experiencing at the time and also work with you on long-term strategies to look after your flexible body.
We also have physiotherapists with special interests in dance (Jo, Rhianna and Dave) and musical performance (Dave), two groups in which there are often many performers with higher levels of mobility.
We look forward to helping you with your hypermobility.