Joint hypermobility 

Introduction 

People with joint hypermobility have an unusually large range of movement in some or all of their joints. 

Joint hypermobility means that some or all of the joints have an unusually large range of movement. People with hypermobility are particularly supple and able to move their limbs into positions that other people find impossible.

Many people with hypermobile joints do not have any problems and do not need treatment. However, joint hypermobility can sometimes cause unpleasant symptoms, such as:

  • joint pain
  • back pain
  • dislocated joints – when the joint comes out if its correct position 
  • soft tissue injuries, such as tenosynovitis (inflammation of the protective sheath around a tendon)

If hypermobility causes these types of symptoms it is often called joint hypermobility syndrome. See Joint hypermobility - symptoms for more information.

What causes joint hypermobility?

Joint hypermobility is often hereditary (runs in families).

One of the main causes of joint hypermobility is thought to be changes to a type of protein called collagen.

Collagen is found throughout the body – for example, in the skin and in ligaments (the tough bands that link two bones together at a joint). If the collagen is weaker than it should be, the tissues in the body will be fragile. This can make the ligaments and joints particularly loose and stretchy. As a result, the joints can extend further than usual.

Occasionally, joint hypermobility is part of a rare and more serious condition, such as:

  • osteogenesis imperfecta – a condition that affects the bones
  • Marfan syndrome – a condition that affects the blood vessels, eyes and skeleton  
  • Ehlers-Danlos syndrome – a condition that causes stretchy skin and the skin to bruise easily

See Joint hypermobility - causes for more information.

How common is joint hypermobility?

It is not clear how many people in the UK have joint hypermobility. It is thought that the condition may affect up to 3 in 10 people to some degree. It affects women more than men because female hormones increase flexibility.    

Joint hypermobility is quite common in children. Children with joint hypermobility can bend into unusual positions (often referred to as ‘double-jointed’). In many children, the joints become stiffer by the time they reach puberty, but in some people, joint hypermobility and associated symptoms continue into adult life.

Marfan syndrome affects around 1 in 5,000 people.

Outlook

Joint hypermobility syndrome can be very difficult to live with because it can cause fatigue (extreme tiredness) and long-term pain. People may also find that it takes time to receive the correct diagnosis due to the wide range of symptoms that joint hypermobility syndrome can cause.

However, once diagnosed, joint hypermobility syndrome can be treated with a mixture of exercise and physiotherapy (where physical methods are used to promote healing). An exercise programme to improve fitness and muscle strength may also be effective at reducing pain. See Joint Hypermobility - treatment for more information.

The nature of joint hypermobility syndrome means that you are at increased risk of injuries, such as dislocations and soft tissue injuries. Managing joint hypermobility may therefore involve treating short-term injuries as they arise, while following a long-term treatment plan to manage your daily symptoms. 

  • show glossary terms
Collagen
Collagen is a type of protein that is found throughout your body - for example, in your skin and in ligaments.
Hormones
Hormones are groups of powerful chemicals that are produced by the body and have a wide range of effects.
Inflammation
Inflammation is the body's response to infection, irritation or injury, which causes redness, swelling, pain and sometimes a feeling of heat in the affected area.
Ligaments
Ligaments are made of fibrous tissue. They connect bone to bone, providing support while allowing flexibility and movement.
Tendon
A tendon is a fibrous cord that joins bones to muscle. It allows the bone to move when the muscle contracts.

Last reviewed: 13/12/2010

Next review due: 13/12/2012

Comments are personal views. Any information they give has not been checked and may not be accurate.

fizzlaa said on 15 May 2012

my mum has just been diagnosed with Hypermobility Syndrome and feels i need to be as since i was very young my knees have dislocated and now so do my toes, fingers, elbows, shoulders and have i splintered spine also always had trouble with my ankles and wrists. Never been able to run or walk to fast as if my knees don't go my ankles will. i suffer from extreme tiredness so much so i can not left my head off the pillow some days and always getting the worst pain in my joints and bones like they are ripping apart. for years the doctors have said it's depression thou i don't feel depressed only feel down and run down when i'm suffering. i also have IBS and Reflux Oesophagitis which i have read is part of this. I am now expecting my second child and think that the pregnancy is making these symptoms worse. Just wondering how to go about a referral and is there any treatments that work that will help make day to day activities more bearable?

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Deesee said on 14 May 2012

I was diagnosed with HMS during treatment for osteoporosis. I thought it would mean treatment, relief. I’m 40 now, and still suffering. Pain on a bad day can feel like someone drilling into your bones, to add to unmerciful constant aching 24/7. Outwardly you look fine, but you wish you could look how you feel, so people could realise the exhaustion that exists 24/7, a battle when you feel you've run a marathon having simply walked up the stairs.

HMS takes much from you. You're ability to have fun - you feel too shattered. Socialising’s not much fun when you're in pain. Simple things like going shopping incolve queues = pain in knees, hips and back. I work f/t, and even driving feel like my joints are grating sometimes. Sleeping is ultra painful with pressure points for hips, knees, etc so a good night's sleep is impossible. I'd love to be a mum, but I’m grateful we don't have kids, as HMS would mean I’d struggle to be the mum I’d want to be. I’ve gone from an always on the go person, to one who spends weekends reserving the energy to go back to work on Monday and get through the week!

I have gastroparesis which is linked to HMS due to the faulty collagen protein production. But can I actually get a consultant to whether they are linked? – no!. Seeing doctors seems to end I more painkillers or the pain clinic referral, which means more pain killers! Like many of you, I had physio, which made it worse. However, I was back to the GP who again had no advice.

HMS is ignored in the outside world. Help in the form of DLA, employee protection etc is non-existent. If we had arthritis it would be a different matter, so sadly we are in limbo. Employees see us as a liability if we have time off, which adds to the stress when it comes to mortgages etc. It’s exhausting living with HMS, let alone justifying it to others. All of us have a tough time compromising every minute of each day due to this condition!

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Rhiannon89 said on 11 May 2012

I was diagnosed with HMS at 16 i get terrible pain in my knees and hips... like the bone it self is aching... My pain has changed over the years as i have had two children and heavily pregnant made them ache all the time, and now they ache occasionally but its not just uncomfortable or unpleasant its so bad i could cry its like someone is drilling my bone...just hope my kids either dont get it, but if they do hope they grow out of it!!

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rocketman9977 said on 27 March 2012

I was diagnosed with this while I was around four year old, and I am fourteen now. Until now I haven't had any problems, but for the past few months I've been suffering with severe joint pain that makes walking normally hard and standing for long periods of time almost impossible. Doing a lot of exercise is out of the question when I'm on one of my bad days, because I literally can't do it. Another one of the symptoms of this is extreme tiredness, which is a problem because when I'm not tired my joint hypermobility doesn't cause me any problems, but the tiredness comes with it so I can't get around it. I also suffer from back pain. The three things I have (tiredness, back pain, and joint pains) means I can't do stuff that my friends do, and none of them understand it no matter how many times I try to explain. I'm going to my doctor about it soon - hopefully I can get it resolved. My advice to anyone who thinks they may have this condition is get it looked at immediately because the longer you leave it the more damage it can do, and it can affect your life in a way that means you can't live it like other people can.

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vickyBoz said on 23 March 2012

I was initally misdiagnosed with juvenile arthritus at 12 years, i was finally diagnosed with HMS at 21. i have already had an arthrocospy on one knee due to too much wear and tear breaking bits off and am having problems with both knees ankles and my back and some of my toes. the pain some days makes me want to cry i am snappy and tired all the time. The births of my 2 sons were horrendous to say the least. The recovery from assisted delivery took months i believe due to the HMS. the fact no one else understands other than my mum who also suffers is awful doctors look at you like your making it up when in fact your whole body from head to toe hurts some days. i have so much sympathy for every one one here and just hope some day they come up with some way of improving symptoms and pain. i would never have physio again it just made it worse the best thing i have found is pilates to control the core muscles.

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kathy1991 said on 13 March 2012

I am 20 years old and have suffered with HMS since i was 12 years old, however it took me 7 years to be diagnosed in those 7 years i must have been to see my GP over 30 times and they just kept brushing me off saying that it was just growing pain and it would soon go away. They gave me anti-inflammatory tablets which never seemed to help just like pain killers. In October 2011 they finally booked me in for a Scan and to see a Specialist within weeks they diagnosed me with HMS and sent me to physio which seemed to make it worse rather than better. It makes it hard when people don't know anything about the illness and that people around me (family & fiance) dont understand the amount of pain i am in on near enough a day to day basis they only know when im sat in tears because the pain gets that bad and i know theres nothing i can do to settle the pain. I printed some information off the HMS ass. website and gave it to my mum to read so she understands a little of what im going through. I work full time and have my own house with my fiance luckily he is very helpful when it comes to doing things around the house as alot of the time i feel too tired to do anything and then there is my 7 yr old step son which kills me when he asks me to play games with him etc as quite alot of the time im in pain and feel like i cant physically do it so i have to say no. Its hard when your in pain trying to explain to work colleagues, family and friends what HMS is as they just think your putting it on as you 'couldn't be in that much pain' or that your just 'complaining' or when it comes to work your just trying to use it as an excuse to go home early when some of the times im in agony. I think there should be more information for the public to see about this illness so people will actually understand how much it effects peoples lives.

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moanermel said on 05 March 2012

I'm 40 and was diagnosed last year. Physio hasn't helped me infact it makes it worse. I'm on a barrage of pills but still ache and feel constantly knackered. My eye bags are getting huge and the dark circles under my eyes say it all. It's hard to get up in the mornings as i'm so stiff and the lack of sleep from all the tossing and turning doesn't help. i now am getting pain in my hips severely and my toes and shoulders.i have hospital again nxt month probably to be told that physio will help again. Im sick of hearing it. nobody understands you and at the end of the day you're just a moaner. I have a little girl and a husband and i work cos i have to. try telling a little girl that mummy can't play today cos she can hardly move. What worries me is how worse this is going to get, can anyone enlighten me please? And what is the nxt step forward for pain relief?

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vickiem said on 15 February 2012

Hi all, I have only been diagnosed with HMS 3 years ago after a car accident and a specialist actually took me seriously. My GP just put it down to a bad back, and said in not so many words it was all in my head. I have been on Morphine since the accident and had 3 lots of Facet Joint injections and recently an Epidural to try and relieve some of the pain to no avail. I work full time and has 3 step daughters. I don't claim any benefits because I am sick of people saying "pain doesn't hurt". Just wish more people would know about HMS and then maybe more people can be diagnosed earlier without being fobbed off. sorry for the rant! Vickie

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2411 said on 30 January 2012

I am 18 years old and began suffering with chronic knee and back pain 9 months ago, I have only just been diagnosed with HMS, but I am still no better off for knowing this, as my doctor and all other medical professionals I have seen still seem to brush off my pain like it is unimportant, and constantly tell me they will not give me painkillers as I am too young. I am constantly in agony and as much as I try to joke about my week knees and back, It has lately really started to affect my humour and overall fun friendly personality. I am constantly tired and often end up snapping at love ones, when i know its not there fault. All the while I'm being told it usually gets better as you get older. But the problem is I am only 18 now how long am I going to have to suffer like this, I want answers and solutions now not 10-15 years from now.

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nanajan said on 06 January 2012

It has taken nearly ten years to be diagnosed as hypermobile. For those years I have spoken to doctors about a painful neck, took 8 years to scan said neck and decide there was a problem. had to change doctors after complaining of pain in my right hand for 3 years was ignored, until one doctor asked if I had mentioned it before. I now have carpal tunnel both wrists, one thumb looks dislocated permanently, three fingers very painful and yes there is a problem with my neck and my knees and ribcage. The consultant I saw recently has been the only person who has really listened to me without making me feel as if I'm nuts. I have at times felt suicidal as I was convinced I was going round the bend as I couldn't understand why I felt so tired and out of sorts, even when I could control the pain. One of the hardest things was being asked if I had done any heavy work. Three kids two dogs and at times working full time, did all housework decorating gardening as partner not very helpful. How much does that weigh, Sorry to rabbit, but I empathise with you all. I also find people dont understand how bloody dreadful you can feel, when sometimes outwardly you appear well. Wishing all and sundry the best of New Years. It says something for previous years that a doctor refferring you for therapy and suggesting ankle splints is the best news on that front that you have had .

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tacjon said on 06 January 2012

I'm 46 and have been diagnosed since 25 with HMS. It currently affects the tendons in: both ankles, both knees, both hips, both shoulders, elbows and wrists (right being worse than left) and parts of my back (though this could be 'just' a bad back).

The pain has been relentless and progressively worse throughout my life. The drug regime just seems to be getting stronger, from anti inflammitories in the beginning to adding Tramadol 16 years ago and eventually ending up on Oxycodone last year. This condition is extremely limiting to my life, the hardest things to deal with were holding my five year old daughters hand walking to school and it hurt so much that i had to stop by the time she was seven :-(. The simple things i couldn't do and have continued to struggle with, plus the constant need to 'justify' why i'm 'tired' 'in pain' etc., when the observer can see no reason for what i'm describing.

I've come across GP, specialist/consultant apathy to me, to the point where i 'feel' dismissed by them.

I understand there is no 'cure' for this condition, but i don't have much understanding or support from medical proffessional's though a few friends do understand, most of my family don't.

I've also found i've associated difficulties with Reynaulds and needing double (minimum) local anesthetics as they don't work properly (ref Hypermobility Syndrome Association website)

I'm also fighting the new dwp as currently i'm not well enough to work, oxycodone does make me drowsy and uncordinated, amoungst other side effects of an unpleasant nature. Fending for my self, living alone and just looking after myself feels like a mountain to climb sometimes, let alone doing that and working too. Sigh.... Is there an answer? Will i ever feel better? Where can i find practical help and support?

Safe to say i feel a little despondent right now and hoping that 2012 improves somehow!

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Saoirse said on 20 December 2011

I have joint hypermobility and I'm 18. I have had it for many years. Over the course of the years I was told that it could better but it just got worse. The pain of it can be extremely sore! I really can't emphise that enough. It is so painful and it makes you feel useless because you feel like you can't do anything. I'm glad my family and boyfriend are behind me. No matter how many tablets you take and how much treatment you get, it never seems to get any better. I suppose its just one of those things but it is unfair. I find it hard to keep it under control. Some people just say it is not as sore as you are saying but they don't feel the pain. I do performning arts so this makes it even worse! I really hope someone can find something to make it better instead of making it worse!

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olias said on 11 October 2011

My daughter who has EDS III, has/ is still going through all the effects of this condition. Recently she has told me that she has started to feel a LOT better. She could'nt really understand why because although she has been trying to follow the pain management team's advice, ie. exercise etc. to build the muscles up, she had been feeling too ill and tired to do it properly. NOW she is able to follow their advice, and walk better, exercise ( carefully ). She tried to work out what was happening, and then it "clicked". One day a few weeks back, she had a craving for Licorice. She worked out that it was about a week after taking a few pieces regularly, that she was able to start to function better than she has done for years. She looked up the benefits of Licorice on the "web", and could'nt believe the benefits of it. She has colour back in her face, more energy, and also has been able to cut down on the prescribed painkiller Tramodol. Please look the benefits up on the web, and give it a try. I really hope it will help you all in the same way. Unbelievable I know, but what have you to lose?

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DreadlockDawnie said on 14 September 2011

I have Ehlers Danlos Syndrome and feel that the information provided here is rather inadequate.

The condition is far more than 'stretchy skin and easy bruising' and can be life threatening. Would it be possible for there to be a seperate entry for EDS sufferers to get information?

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peksy86 said on 28 August 2011

I have Strickler's Syndrome and as a result hyper mobility. Exercise actually makes me worse and as I cannot take my tablets I can't even do that any more. Please add Stickler's Syndrome to the list of people who have Hyper mobility, awareness of this syndrome needs to be increased.

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olias said on 24 August 2011

Hyper Mobility Syndrome / Ethers Danos Syndrome, CANNOT be cured, only managed. If you are unlucky enough to have this illness, the best you can do is work slowly and gradually towards building up the muscles in your body. Whenever anyone asks," can this illness be cured?" the only people who say yes, are those that are out to try to make money from your misery. Unfortunately, because of the nature of this illness, the pain and disabling side of it, people buy these so called "miracle Cures", in the hope that they can sort themselves out. The bottom line is, Pain Management is the only source of relief at present.. As clicker101 said, visit the Hypermobility Syndrome Ass. Website for info and real practical help. Hopefully there will be a cure in the future, but for now, just do your best. Good Luck.

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smol said on 23 August 2011

I agree with Clicker101. I wish it was just "unpleasant"
No mention of the IBS, raynauds etc... that often go along with it either.
I was diagnosed last week after suffering for years, all the Dr's I've seen never pieced it together, yet 1 clued up physiotherapist, spotted it in a 15min session... I think awareness needs raising amongst GP's and hospital Dr's and other staff. I might have avoided cervical spondylosis and bulging discs and osteoarthritis in the lumbar and all the nasty complications too had I been aware earlier of the impact my terrible floppy body might cause. Now the damage is done and all I can do is limit any further damage through exercise (core stability)
At least I found out before my kids had to suffer the same, they can help prevent it causing them problems, but for me and my mum it's way too late. (mum needs both hips replacing now, she is 55. Her knees are next and there's not much they can do with her shoulders and neck)

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clicker101 said on 29 June 2011

For people with this condition they do not usually call it 'Joint Hypermobility Syndrome' (JHS). It is known as Hypermobility Syndrome (HMS) or Ehlers Danlos Hypermobility Type lll.

The symptoms that you describe are not just 'unpleasant' they are very painful, disabling and life-changing problems that are incurable. Treatment only reduces the pain it does not remove it.

Visit the Hypermobility Syndrome Association website for further information.

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