Published on 01 July 2008
There’s more to joint hypermobility than just being double-jointed and super-bendy. It can devastate young lives, as Jane Tadman reports.
For most of her young life, 18-year-old Phoebe Kemp has lived with severe pain. At the age of eight her knees suddenly began to lock for no apparent reason and by the time she was at secondary school she spent much of her time in a wheelchair or on crutches, her knees unable to bear her weight.
In her early teens, Phoebe, from Box, in Wiltshire, suffered a series of bad flare-ups which left her in agony and completely unable to walk for 2 months.
Medics struggled to diagnose Phoebe’s condition and for a time it was thought she was suffering from osteochondritis dissicans, a condition resulting from a loss of blood supply to bone beneath the joint surface.
Eventually, however, doctors at the Royal National Hospital of Rheumatic Diseases in Bath, known as the Min, decided that her symptoms were due to joint hypermobility.
By this time Phoebe’s hands were also affected and she was finding it increasingly difficult to write for long periods.
Two factors helped Phoebe set her life back on course. The first was drama. She explains: “I used to do a lot of dancing but I had to stop because of the pain and because at the time they thought it would damage my knees. And when I stopped my mum enrolled me in a drama group instead.”
The teenager is now taking three A-levels – including drama – and currently auditioning for drama schools in Bristol and London.
Youngsters with joint hypermobility at the Bath Pain Management Unit.
The second was attending the three-week adolescent pain management programme, part of the Bath Pain Management Unit, at the Min.
The programme was set up in 1998 to take national referrals and is aimed at teenagers whose lives have been disrupted by pain to the extent that they can no longer attend school or college. These chronic pain conditions may be disease-related (juvenile idiopathic arthritis, childhood cancers) or non-disease related (complex regional pain syndrome, juvenile fibromyalgia). It is not uncommon to have young people with hypermobility-related chronic pain.
The multi-disciplinary rehabilitation course treats around 120 youngsters a year, helping them to become less dependent on hospital services and works with them to get back to a more normal lifestyle – despite the pain – through graded exercise, relaxation, goal setting and planning and pacing activities.
“The programme is for children and young people who are suffering persistent pain where they have got stuck and need helping moving on,” explains Dr Jacqui Clinch, consultant in paediatric rheumatology and adolescent chronic pain at the Min. With colleagues, Dr Clinch is currently setting up an adolescent chronic pain clinic at the Royal Bristol Children’s Hospital for less severely affected youngsters from the south west.
“Often these young people have moved from being extremely active, able individuals to a lifestyle ruled by pain. They are out of education, not sleeping, dependent on family members and prone to frustration and low mood. Our aim is to help rehabilitate them despite the constant pain they are in, and get them back to a normal teenage lifestyle.”
After the 3 weeks teenagers go back home and are treated locally, but are followed up by the Min for the next 2 years. More than 60 per cent are able to go back into full-time education or employment.
For Phoebe the programme was something of a turning point. “I’d not be able to do what I’m doing now if I hadn’t been on the course,” she says. “I used to take tramadol for the pain which made me feel all woozy, but now I just take paracetamol and ibuprofen when absolutely necessary. I can manage and live with the pain more effectively since going on the programme. It was so useful.”
Phoebe has been told that if she gets herself very physically fit now that she has stopped growing she has a good chance that her condition will lessen in adult life.
She is now concentrating on passing her A-levels, enjoying the freedom that gaining her driving licence has given her, and looking forward to a career as an actress. She knows it will be tough; her mobility remains severely restricted, she can’t walk for more than 15 minutes and has to have constant rest breaks during exams because of her painful wrists, but she is determined.
“I want to do it too much not to do it,” she says simply.
New Arthitis Research UK research into joint hypermobility
A major new research project based in Bristol aims to find out if children who are double-jointed are at increased risk of developing joint and muscle pain during adolescence.
Researchers and doctors at the University of Bristol and the Royal Bristol Children’s Hospital are carrying out the 3-year £116,500 study.
“Children who have joint hypermobility may be at increased risk of developing chronic musculoskeletal pain which can affect their ability to do everyday activities, and also their schooling,” explains Dr Jon Tobias, reader in rheumatology at the University of Bristol, who is heading the study with a team that includes Dr Clinch.
Chronic pain in the joints and muscles affects between 15 and 20 per cent of children and teenagers, and may persist into adulthood.
“Understanding the relationship between joint hypermobility in childhood and the future risk of chronic pain is important, as, if the two are connected, we could then offer these youngsters treatment such as physiotherapy and exercise,” adds Dr Tobias. The team will also be looking at other possible connecting factors such as co-ordination and clumsiness.
The Bristol team hope to find out if having joint hypermobility in childhood is a predictor of chronic pain developing by the age of 17. Detailed questionnaires are being sent to up to 5,000 teenagers who are part of a unique population-based Avon Longitudinal Study of Parents and Children, which has followed up to 5,000 children from birth to the age of 17. They will be asked about any muscle or joint pain suffered over the past three months and how severe and widespread it was.
Researchers will then relate these findings to records of examinations to look for evidence of joint hypermobility that were carried out when teenagers attended research clinics at 13 years of age.
Chronic pain syndromes in children and teenagers are similar to those suffered by adults, which are little-understood by the medical profession and researchers. However, the Bristol team believe that establishing that joint hypermobility is a contributory factor could be significant and lead to better treatments for affected youngsters throughout the UK, including physiotherapy to improve postural abnormalities, and exercise programmes.
What is joint hypermobility?
- In people with joint hypermobility, some or all their joints have an unusually large range of movement (also known as double-jointedness).
- Generally children are more flexible than adults. Ten per cent of children are more flexible than their peers and have a condition known as benign joint hypermobility. A least 10 per cent of these youngsters have joint pain.
- A small percentage of these youngsters have hypermobility as part of genetic conditions such as Marfans syndrome and Ehler’s Danlos syndrome.
- The joints usually affected are knees, elbows, wrists and the lower back. Joints can become dislocated.
- Treatment involves physiotherapy and hydrotherapy, with muscle strengthening and joint protection often required.
- Many patients improve with age.