7 Things Everyone Should Know about Joint Hypermobility Syndrome ...


Joint hypermobility syndrome is a little-understood condition that can seriously affect the lives of the people who suffer from it. Despite the fact that it can ruin people’s lives, it takes on average over 10 years for a diagnosis (no, that’s not a typo!). Here are some things that everyone should know about joint hypermobility syndrome.

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Being Double-jointed is Not the Same Thing

If I tell anyone I have joint hypermobility syndrome (JHS), it’s quite common for people to say “I’m double-jointed/I have some hypermobile joints as well.” While many people with joint hypermobility syndrome will be double-jointed in many joints, being double-jointed does not mean someone has this complex and life-altering condition. People with JHS have multiple hypermobile joints that often dislocate very easily, alongside many other problems.


It’s Often Hereditary

JHS appears to run in families, although they haven’t managed to pin down one particular gene. Experts estimate that a sufferer has around a 50% chance of passing it around to each child they have, although the severity of the condition varies greatly and is much worse in females than males.


Extreme Fatigue is Common

People with joint hypermobility syndrome are often tired all the time. Their muscles have to work harder than everyone else’s to keep their joints in the right place, and they also often get less sleep due to pain and other symptoms.


It Can Be Incredibly Painful

Pain caused by JHS can be severe enough to leave sufferers rolling around in agony. This pain can be just about anywhere as the condition causes so many other problems. Dislocations are also common and can be incredibly painful. What makes the pain levels even worse is that pain relief is less effective in people with JHS, which also means things like trips to the dentist can be more painful than they should be as local anesthetics may not work properly.


Autonomic Nervous System Disorders Often Come with It

People with JHS often have problems with their blood pressure and heart rate. POTS (Postural Orthostatic Tachycardia Syndrome, where the heart races suddenly on standing up) is quite common. Low blood pressure, palpitations and regular fainting occur in some sufferers.


It Affects the Skin

Sometimes scars two years old can look brand new in people with JHS as their skin doesn’t heal properly. Stretch marks that appear at a young age are common, as is thin and wrinkled skin and easy bruising. Minor spots and scratches that should ordinarily leave no trace can leave very visible scars on sufferers of JHS.


Major Organs Can Be Affected

People who have joint hypermobility syndrome can suffer severe chest pain and have heart murmurs or even mitral valve prolapse. Abdominal and pelvic wall muscles are often weak, so hernias and prolapses are more common than in the general population. Bowel, bladder and gynecological problems are all more common due to inflammation because things don’t always stay where they’re supposed to.

Joint hypermobility syndrome can destroy people’s lives and the worst thing is waiting so long for a diagnosis, while no one really believes how much you’re suffering purely because they don’t know what’s wrong. If you recognise these symptoms in yourself or someone close to you, don’t be afraid to mention it to your doctor – most GPs have not even heard of it and so will never diagnose you otherwise. You will need to see a rheumatologist but be prepared to see several as many still don’t seem to spot it! Have you ever heard of JHS?

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Where Thoughts and Opinions Converge

I'm 18 and the doctors think I have this, it's apparently also a lot harder to lose weight. They said one of the only things to help is exercise- to build muscle to replace the weak joints.

I was just about to say...this is actually ehlers danlos syndrome. It is a defect of the collagen of connective tissue. There are many different versions depending on which collagen it affects. I have a specific familial version of it that causes extreme flexibility and difficulty with muscle tone, terrible myopia, stretchy skin, and lung issues. There's a long list of symptoms. But the info is correct in this, just would change the name to EDS

Well done for raising awareness of this sometimes debilitating condition. I have it and am now housebound most of the time and need held with care and day to day things that people take for granted x

I was diagnosed with JHS after dislocating my hip, along with tearing many of the ligaments around it. After 2 years, being extremely physical is still a challenge. I was always very athletic, but was always getting random injuries. It was nice to finally get an answer about all the injuries, but it shouldn't alter peoples live the way that it does.

My younger sister has this condition she had to go to GOSH to be diagnosed as doctors have never heard of it over here, apparently it's quite rare x

EDS (Ehlers-Danlos Syndrome) can have 6 or more types. Some are life threatening. It can cause aneurisms and often cause abdominal aortic aneurisms (AAA) which are very deadly. ECHO cardiograms should be done yearly on patients with EDS.

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