Joint Hypermobility Syndrome

After recently spraining my ankle for the umpteenth time I thought I’d explore the symptoms and causes of Joint Hypermobility Syndrome and how to treat it. After browsing on the Internet, the NHS website provides the most succinct and clear information. It is from where I have gathered most of my information. There is also a site Hypermobility Syndromes Association for further help and support.

Joint hypermobility means that some or all of a person’s joints have an unusually large range of movement.

People with hypermobility are particularly supple and able to move their limbs into positions others find impossible.

Joint hypermobility is what some people refer to as having “loose joints” or being “double-jointed”.

Most people do not suffer with symptoms of hypermobility. Some athletes, gymnasts and dancers actually use this extra flexibility to their advantage. The only time I think I have used my bizarre bendiness to my advantage is when doing any silly party tricks. Otherwise, I have, throughout my life, been called clumsy, accident prone, a bit ‘special’ and uncoordinated. In gym classes at school, as the tallest/biggest girl I was always the base for certain lifts and holds. I was constantly told to stop locking my elbows out, even though they felt their most stable in that position. However, it was potentially a position they could ‘snap’ in. Furthermore, it was aesthetically displeasing.

Being an extra bit flexible has been handy when playing sport. The ability to to bend and move more easily has at times worked to my advantage. However, the recurrent sprains and injuries along with a few of the other symptoms are not ideal.

SYMPTOMS OF JHS:

• pain and stiffness in the joints and muscles – particularly towards the end of the day and after physical activity
• clicking joints
• back and neck pain
• joints that dislocate (come out of the correct position) easily – such as a dislocated shoulder
• fatigue (extreme tiredness)
• night pains – which can disrupt your sleep
• recurrent soft tissue injuries – such as sprains and other sports injuries
• poor co-ordination (ok maybe I am a little uncoordinated at times)
• dizziness and fainting
• thin or stretchy skin

JHS can also cause problems internally, affecting the autonomic system in our bodies. This is the nervous system that we do not control consciously. It allows bodily functions to happen automatically, such as breathing and your heart beating.

The digestive system can be affected as a result of weakened muscles. People can suffer with constipation and irritable bowel syndrome (IBS), gastro-oesophageal reflux disease (GORD) (where stomach acid leaks from your stomach to your gullet, causing symptoms such as heartburn) and gastroparesis (where the stomach has difficulty emptying its contents into the small bowel, which can cause bloating and nausea). All pleasant stuff…

JHS can cause abnormalities when a person stands up and sits down, affecting their blood pressure. If their blood pressure suddenly drops, it can cause them to feel dizzy, sick, and sweaty and potentially faint. For some, this may lead to postural orthostatic tachycardia syndrome (POTS), which makes the heart beat rapidly for a moment or two when a person stands up.

Other ailments people with JHS might suffer from are the following:

• urinary incontinence due to weakened muscles in the pelvic floor
• hernias
• pelvic organ prolapse in women
• varicose veins
• flat feet
• headaches
• drooping eyelids
• a tendency to bruise easily and develop stretch marks
• thin or stretchy skin

There is concern that those with JHS may also have the potential to develop osteoarthritis earlier in life than usual.

 

Joint Hypermobility is caused by several factors. I discussed hypermobility with the doctor yesterday and he said, with a jokey smile on his face, the only way to cure hypermobility is to change your family genetics. Excellent. I know my cousins and my uncle on my mother’s side are pretty flexible, but am not aware of them suffering quite how I do. This is probably as a result of the amount of sport I do and the extra stresses I put on my body.

CAUSES:

• the structure of your collagen (a type of protein found in some types of tissue)

Collagen is what makes up a person’s ligaments. Ligaments are what connect two bones together to form a joint. They are what give a joint strength and therefore control the range of possible movement. If the structure of a person’s collagen changes then it can become fragile and can result in weakened ligaments that can be stretched easily. This is normally inherited.

• the shape of the ends of your bones

A person can have shallow shoulder and/or hip sockets which mean the bones move around more easily and the joint becomes unstable and flexible.

• your muscle tone

Children may have low muscle tone (hypotonia) which means they lack the muscle to support their bone structure and therefore become quite bendy.

• your sense of your joint movements (proprioception)

Hypermobile people have a heightened sense of when they overstretch their joints and therefore can increase the range of movement in their joints.

In a few cases joint hypermobility is associated to other conditions such as Ethlers-Danlos syndrome (a condition that affects connective tissues), Marfan syndrome (same as joint hypermobility but often found in people with exceptionally long and slender limbs, fingers and toes. It can also cause potentially serious problems to the heart and eyes) and Osteogenesis imperfecta (a rare condition often known as ‘brittle bone disease’ which can cause hypermobile joints).

DIAGNOSIS

Doctors can do extensive tests to assess whether a person has JHS or not, and whether there are other underlying conditions that need to be treated. However the Beighton Score can be carried out as a quick test to assess whether you are likely to have JHS.

The test involves examining the range of movement of certain joints. I decided to do this test and Kim kindly obliged to be my photographer and ‘model’ one shot – thanks!

• one point if you can place your palms on the ground while standing with your legs straight

• one point for each elbow that bends backwards

• one point for each knee that bends backwards

• one point for each thumb that touches the forearm when bent backwards
• one point for each little finger that bends backwards beyond 90 degrees

I can’t do the last two tests completely  but I know my shoulders are ‘double-jointed’ and the photographs below show that I can get my arms to about 90 degrees whereas Kim gets to roughly a 45 degree angle.

I scored 5/9. 4 or more and you are likely to have JHS.

Doctors also use the Brighton Criteria to diagnose JHS, which involves comparing a patient to major and minor criteria that are based on the Beighton test and the symptoms they may suffer from as a result of JHS. These include previous dislocations, injuries, and general joint pain.

TREATMENT

“The nature of JHS means that you are at increased risk of injuries, such as dislocations and sprains. Managing the condition may therefore also involve treating short-term injuries as they arise, while following a long-term treatment plan to manage daily symptoms.”

My problems all started when I was wondering around the playground of Salcombe Primary School, playing with my arms (as you do) when ‘K-clunk’, I had managed to somehow, in the only way I can describe it, ‘skip’ through my arms. Despite freaking out some of my classmates, I thought it was pretty cool. The doctor didn’t agree. When I broke my elbow due to bending it too far, I was thereon in banned from doing my new party trick. As I have grown up and enjoyed partaking in more and more sports, I have exposed myself to a heightened risk of injury. Typically, a lot of my injuries have been because of moments when my concentration dropped: a common situation to when a lot of people injure themselves. However, when the average person ‘bounces’ back from a tumble, I often go too far and snap.

Treatment for JHS involves a lot of physiotherapy and time spent working on strengthening finer movements and all the delicate and intricate structures around joints. Eating a healthy diet, exercising (low impact…preferably) and having a healthy sleep pattern all contribute to alleviating some of the symptoms. Treating other symptoms, particularly pain, can only be treated with ice/heat and painkillers.

I can often tell you when the weather is going to change. Not like the character in Mean Girls who claims her breasts can tell what the weather is like, but the change in pressure can cause my shoulders to really ache. Stress often causes my shoulders to feel like they have partially moved, feel lose and particularly painful. My ankles suffer when I am tired, too and often swell combined with a dull, tiring ache similar to growing pains.

There is a higher probability in someone who has JHS to have to have surgery after an injury as the ligaments struggle to strengthen again by themselves, despite physiotherapy. This was the case for me when I had surgery to fix the torn labrum in my shoulder.

Pacing seems to be a type of treatment/training that I think I would benefit from. “Pacing involves balancing periods of activity with periods of rest. It means not overdoing it or pushing yourself beyond your limits, because if you do it could slow your long-term progress.” Hmm, I think people have suggested this once or twice to me.

My training plan will now focus on important resting and recovery time, strengthening my ankles and shoulders a couple of times a week (not every day as I find they tire and hurt quickly). I will then hopefully give more in the fewer training sessions I do. Even as I type this I know it’s going to be a challenge psychologically for me to refrain from wanting to train hard every day. It’s taking time, but I am learning how my body responds to exercise best. If I am honest, for me, less is more.

To those who still think I am just really clumsy or to those who know of someone who suffers with JHS, remember that we experience a great deal of frustration suffering with constant niggles and injuries, not being able to push ourselves as much as maybe we would like to or as much as other people (at least for me as a competitive soul), and that repetitive injuries can be tiresome. They have definitely set me back a fair few times, too. However, if I have to work that bit harder then the end result will only be greater, right?

I hope for someone this has been an interesting and insightful read. I know it’s not a life threatening syndrome, and many people might suffer from a lot of the symptoms without having JHS, but I would love to hear from anyone who knows they have JHS, or anyone who thinks they might have it. If it affects you, how does it affect you and what do you do to treat yourself and help prevent injury?

On a last note, an old school friend who had been watching Britain’s Got Talent said I reminded her of this guy ‘Bonetics’. Thanks…