Hypermobility

Who needs support from our service

We accept physiotherapy referrals for children when the condition is:

• significantly impacting on gross motor functional ability
• causing sleep disturbance on a regular basis
• impacting on attendance at school.

We accept occupational therapy referrals for children when the condition is:

• impacting on multiple functional activities such as self-care tasks (washing, dressing, using cutlery), sitting posture, attention skills and handwriting. If a child only has handwriting difficulties, then this would be something that school assist with.

Joint Hypermobility syndrome

Joint hypermobility syndrome is when you have very flexible joints and it causes you pain (you may think of yourself as being double-jointed).

It usually affects children and young people and often gets better as you get older.

See a GP if you:

• often get tired, even after rest

• keep getting pain and stiffness in your joints or muscles
• keep getting sprains and strains
• keep dislocating your joints (they "pop out")
• have poor balance or co-ordination
• have thin, stretchy skin
• have bladder or bowel problems

These can be symptoms of joint hypermobility syndrome.

A GP will usually test the flexibility of your joints using the Beighton score.

They may also refer you for a blood test or X-ray to help rule out any other conditions like arthritis.

There's no cure for joint hypermobility syndrome.

The main treatment is improving muscle strength and fitness so your joints are better protected.

A GP may refer you to a physiotherapist, occupational therapist or podiatrist for specialist advice.

You can also pay for these services privately.

These physical therapies can help to:

• reduce pain and the risk of dislocations

• improve muscle strength and fitness
• improve your posture and balance

Treating joint pain

Paracetamol and anti-inflammatory painkillers (like ibuprofen, which comes as tablets, gels and sprays) may help to ease pain.

Speak to a pharmacist about the best painkiller for you.

A GP may be able to prescribe stronger painkillers.

If you're in severe pain, a GP may be able to refer you to a pain clinic to help you cope with pain.

To help ease joint pain and stiffness, you can:

• have warm baths

• use hot water bottles
• use heat-rub cream

Find physiotherapy services

Find occupational therapy services

Find a pharmacy

It may also help to join a support group like the Hypermobility Syndromes Association or Ehlers-Danlos Support UK.

If you have joint hypermobility syndrome, there are things you can do to improve joint and muscle strength and reduce strain.

Do

• start with low-impact exercise like swimming or cycling if you've not been active before (not doing any exercise can make your symptoms worse)
• maintain a healthy weight
• wear supportive shoes
• wear special insoles (orthotics) in your shoes if a podiatrist has recommended them

Don't

• do not overextend your joints just because you can
• do not do repetitive exercises or activities – take regular breaks (called pacing)

Download the Alder Hey Children's NHS Foundation Trust's leaflet: Hypermobility Information for parents, carers and schools (PDF, 158kb)

Joint hypermobility syndrome can run in families and it cannot be prevented.

Usually, the joints are loose and stretchy because the ligaments that should make them stronger and support them are weak.

The weakness is because the collagen that strengthens the ligaments is different from other people.

Most experts agree that joint hypermobility syndrome is part of a spectrum of hypermobility disorders which includes Ehlers-Danlos syndrome. Some people with hypermobility spectrum disorders do not have symptoms.

How we can support

We accept referrals from anyone involved in the child’s care.

• Online referral form

This includes family, school, medical professionals and external support services.

Please give us as much detail as possible as to how the child’s hypermobility symptoms are currently impacting on their day-to-day activity.

Depending on the outcome of the assessment, the occupational therapist or physiotherapist is likely to recommend self-help strategies such as exercises, changing footwear or use of different equipment.

We may need to complete further assessment at home or at school.

If you have any questions or concerns, please call TOP or contact your therapist directly.

Other services

Musculoskeletal outpatients physiotherapy is the team to go to when a child is highly functioning with sport or activities but is still struggling with pain, or when a child has a single area of pain (for example back pain or knee pain).

Podiatry is the team to go to for support with finding the best insoles or foot supports where that need is present.

Who needs care from our service

We accept physiotherapy referrals for children when the condition is:

• significantly impacting on gross motor functional ability
• causing sleep disturbance on a regular basis
• impacting on attendance at school.

Making a referral

We accept referrals from anyone involved in the child’s care.

• Online referral form

This includes family, school, medical professionals and external support services.

Please give us as much detail as possible as to how the child’s symptoms are currently impacting on their day-to-day activity.

What can we do for you?

Depending on the outcome of the assessment we will likely recommend an exercise programme. Your child will need to complete this programme regularly at home to improve their symptoms. They may also be able to do the programme at school so it’s helpful to discuss this with the special educational needs coordinator. We will make sure you have your physiotherapist’s contact details. If you have any questions about the exercises you will be able to contact them directly.

We usually offer a review appointment about every four to six months. If you feel your child’s condition changes or they start to find an activity more difficult please contact us as an earlier review might be needed. If your child is doing well with the exercises and has a reduction in symptoms, we will discuss discharge.

Following discharge, we usually recommend that your child continues with the exercises. If things change in the future you are able to make a re-referral.

We can offer some sessions with an integrated therapy assistant if you need extra help to get your child to engage with the exercise programme or to deliver the programme at school.

If your child needs specialist equipment or orthotics such as splints, walking aids or specialist seating this we will assess for and provide this as part of your child’s care.  Any equipment we provide is reviewed on a six-monthly basis.

We are able to refer internally to occupational therapy or speech and language therapy if this is needed.

We can also refer to other services such as the wheelchair service.

Helpful links

• Ehlers-Danlos Support UK
• The Ehlers-Danlos Society
• Juvenile Idiopathic Arthritis (JIA)
• The Marfan Foundation
• Marfan syndrome (NHS.uk)

Oliver’s story

Background

Oliver is 17-years-old with a diagnosis of Marfans Syndrome. We have worked with him since 2010. Oliver was experiencing a lot of pain, significant generalised weakness and fatigue.

What we did

We designed a home exercise programme for Oliver to strengthen his weak muscles. We made sure an occupational therapist could assess his classroom seating and his ability to engage in everyday activities at school. We visited his school to give advice for safe participation in physical education (PE).

Oliver didn’t need specialist seating but we made recommendations that would support him to continue to access learning and manage his fatigue.

Oliver was able to self-manage his exercise programme and his fatigue so we agreed a discharge in 2017.  However, Oliver developed some new functional difficulties so we accepted a re-referral to the service. We currently review Oliver every six months and make sure his exercise programme is up-to-date. The exercise programme is tailored specifically to meet his need.

Feedback from Oliver's parents

My son has received on-going support over several years from the physiotherapy team as his complex condition has evolved. The physiotherapist performed a thorough assessment as part of his education, health and care process and developed short and long-term goals in partnership with us and which are reviewed periodically.

A tailored exercise programme was developed at the outset and this is adapted following each assessment to include his feedback and his general pain and mobility levels.

Appointments have taken place in clinic, at home or school which is helpful to make sure environmental challenges are being identified and addressed. The therapists we have been lucky to work with have been highly engaged, with a cheery and positive approach, even when facing resistance, which helps to make sure the therapy is ultimately making a measurable impact to his outcomes.