What is Hypermobility Syndrome?

Hypermobility Syndrome is when a person’s joints can move beyond what is considered a normal range of movement. This increased mobility of joints can cause pain, sprains and dislocations in your body. Hypermobility is not a disease or condition but instead it is a combination of flexibility of the connective tissues and altered state of the sensory motor systems of the body to regulate and control movement.

The most common areas of hypermobility are the fingers, knees, elbows, hips and spine.

Hypermobility is more commonly seen in children, adolescence, people with Down syndrome and in people with Marfan syndrome. In many cases the excess joint mobility decreased naturally as you get older, but in all cases, preventative measures and movement awareness can help reduce symptoms.

The cause of Hypermobility is currently unknown however genes, family history of being hypermobile and habitual, or repetitive practice of over stretching the joints can contribute to being hypermobile.

What are the symptoms?

The most common symptoms of Hypermobility include:

• Joint pain during or after activity
• Recurrent sprains or dislocations (ankles, knees, fingers or shoulder)
• Being able to hyper-extend your knees, elbows, fingers and thumbs

If you are experiencing multiple joint pains and suspect that you have Hypermobility, you should consult with your doctor to discuss you symptoms, organise relevant tests and guide your management.

How is it diagnosed?

Hypermobility is diagnosed when your symptoms and other tests for possible causes of multiple joint pain and hyper mobile joints have been excluded. Hypermobility is not an active disease that will show up in blood tests or investigations

Clinicians often use the Beighton’s Hypermobility Score to assess hypermobile joints (see below).

If you have 4 or more positive or hypermobile joints, in the following tests, you would be considered Hypermobile.

After discussing your symptoms with your doctor, they may advise having blood tests and x-rays to investigate the potential causes for your symptoms. You may also be referred to a Rheumatologist.

Blood tests you may get will look at the short and long term inflammatory markers in your body that can indicate whether or not you have an inflammatory process happening in your body.

Creatine Reactive Protein (CRp) is used to assess the presence of inflammation in the body, to determine its severity, and to monitor response to treatment.  It can be used to monitor acute or short term levels of inflammation in the body.

Erythrocyte Sedimentation Rate (ESR) is used to assess the amount of inflammation in the body.  It is sometimes seen as a long term indicator of the level of inflammation in the body.

X-rays may be used look at the condition of your joints to see if there are any signs of inflammation and joint damage.

Depending on the results of your investigations, your doctor should discuss with you whether or not you need to take medication, see a Rheumatology specialist or both.

A Rheumatologist is a specialist doctor that investigates your symptoms further, requests very specific tests (if required), guides the medical management you require, prescribes specialist medication (if required) and provides you with resources to understand your condition.

What can I do about it (5 tips)?

Understand and Practice Joint Range of Movement norms

It is common for people with Hypermobility to not realise their joints move more than what is considered normal. When your joints are sore or injured due to hypermobility, it is important to learning what is ‘normal’ range of movement, and what this feels like to you. By practicing staying within ‘normal’ ranges, and not repeatedly going beyond ‘normal’, it is less likely your joints will hurt or be injured.

As well as seeking advice from Physiotherapists, Exercise Physiologists or Personal trainers to learn new movement patterns. Using joint supports, splints and tapes can also help you control your movements.

Strengthen Joint Structures

Making the muscles, ligaments and tendons strong around the joints through resistance training can help not only strengthen the joints, but also re-train the joint sensors (proprioception) within the body to be more aware of when excess movement is performed.

Often high impact exercise such as dancing, aerobics and Cross-fit are not advised, along with activities that encourage flexibility such as yoga and gymnastics. However, all forms of exercise can be beneficial as long as you ensure the movements are always controlled and you are not pushing your joints beyond ‘normal’ range.

Get a clear Diagnosis and rule out serious conditions

Having hypermobile joints, or having multiple painful joints, can sometimes be related to an inflammatory joint diseases ( Rheumatoid Arthritis, Lupus), connective tissue diseases (Ehler Danlos Syndrome) or other conditions associated with hypermobility (Fibromyalgia). In all circumstances it is important to educate yourself on your symptoms and check your symptoms with your GP.

Know ‘Pain’ and what it is

Pain is a common symptom that comes with Hypermobility. Despite many people living with, and experiencing consistent or chronic pain, it is very common for the same people to have little understanding of what “Pain” actually is (or in other words, what research and science can currently tell us about pain).

This concept may seem confusing initially, seeing as you know what you and your body are feeling. However, spending time learning about “pain” can provide valuable insight and understanding to your symptoms, what you are experiencing, and provide you with powerful tools to help reduce the impact of pain on your life.

Be Active with your condition

When diagnosed with Hypermobility it is important to be pro-active and fully involved in the management of your condition. This means both physically pro-active and mentally pro active. Having Hypermobility does not condemn you to inactivity.

Physically proactive

While it is understandable and common to feel that doing very little helps your pain, protect your joints and helps your condition. Over time, inactivity and disuse with have a detrimental effect on your physical and mental wellbeing. Maintaining good joint mobility and muscle condition through exercise and activity will maintain your joint, and heart health for longer, and will have many more health benefits over inactivity.

Being mentally proactive

Structuring your days, having goals and being objective towards the management of your Hypermobility will provide you with good foundations from which to measure, monitor and manage your condition effectively.

Applying practices such as training diaries, pain diaries, recording blood tests and monitoring your successes and challenges will help you plan your life around your condition effectively. Also, in doing this you can help your Doctors or health professionals identify changes in your condition, to help implement effective management plans more effectively.

What can other people do to help me?

The management of Hypermobility can vary between individuals, however, early diagnosis and appropriate treatment are essential to relieve symptoms, reduce joint damage and help you continue to lead a normal life.

Doctors

Initially, the most important thing you can do is discuss your symptoms and diagnosis with your doctor. They may prescribe medications that can help your symptoms immediately, order tests to confirm your diagnosis and refer you to a specialist (Rheumatologist).

Finding the right doctor for you is very important. For the long term outlook, it is important to find a Doctor you feel is approachable and effective in the management of your condition. You may have to call upon them at various times in your life, therefore having a positive relationship with them, and confidence in their management of you is important.

The most common medications your doctor will manage are 

• Painkillers/ analgesics
• Anti-inflammatories
• Cortico Steroids medications or injections

Specialists / Consultant Rheumatologists

Rheumatologist do see people with Hypermobility syndrome, mainly to rule out any other possible causes for multiple joint pains. However, Rheumatologists do not routinely see people with Hypermobility on an ongoing basis, as Hypermobile people do not require the medications or expertise of a Rheumatologist to manage their health problems.

Therapists

Based on the symptoms and issues you may be experiencing, your Specialist or GP may refer you to a variety of health professionals to help manage your condition. The most common Health professionals used by GPs and Rheumatologists, to help people with Hypermobility are: 

When choosing which therapist to see it is beneficial to discuss your plan with your GP, research the therapist you intend to see, and ensure the therapist applies some sort of evidence based practice to the treatments they are providing you.

Remember, there is no cure for Hypermobility, so be cautious of anybody making unfounded claims to be able to cure your condition or resolve your symptoms completely.

Many people do try alternative approaches to help their Hypermobility and its symptoms, with mixed effect. No matter what approach or therapist you see, it is a good idea to discuss your approach with your GP, Rheumatologist or relevant health professional. More importantly, please ensure you feel better after seeing them and have a clear plan on how your condition will be monitored and self-managed

More importantly, please ensure you feel better after seeing them, have a clear plan on how your progress will be monitored, and the plan for self management.

Family, Friends and Support Networks

The most important members of you Hypermobility team are your family, friends or support network. Attending events, remaining active and living life can be a challenge at times for all of us, however, for people with Hypermobility, the symptoms can impact your life. Therefore, having people to talk to and share your highs and lows with, is very important in maintaining good physical, mental and spiritual health.

Many organisations and charities offer support, education and self-management courses for people with Hypermobility. These can help you connect with other people living with Hypermobility, as well as build skills and confidence in managing your health and Hypermobility .

Participating in physical activity with others can provide you with an opportunity to keep your joints and body healthy, while sharing positive experiences with others. Activities such as walking, hydrotherapy, Tai chi, Pilates or mindfulness sessions are all low impact activities that can be enjoyed at all stages of Hypermobility.

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