Joint hypermobility 

Introduction 

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

Ehlers-Danlos syndrome

Information for people who have been recently diagnosed, or for anyone whose child has the condition

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".

Joint hypermobility syndrome

Many people with hypermobile joints don't have any problems, and some people  such as ballet dancers, gymnasts and musicians – may actually benefit from the increased flexibility.

However, some people with joint hypermobility can have a number of unpleasant symptoms as well, such as:

If hypermobility occurs alongside symptoms such as these, it is known as joint hypermobility syndrome (JHS).

Read more about the symptoms of joint hypermobility and diagnosing joint hypermobility.

What causes joint hypermobility?

Joint hypermobility is often hereditary (runs in families). One of the main causes is thought to be genetically determined changes to a type of protein called collagen.

Collagen is found throughout the body – for example, in skin and ligaments (the tough bands of connective tissue that link two bones together at a joint).

If collagen is weaker than it should be, tissues in the body will be fragile, which can make ligaments and joints loose and stretchy. As a result, the joints can extend further than usual.

JHS is widely thought to be a feature of an underlying condition affecting connective tissue called Ehlers-Danlos syndrome (EDS).

Read more about the causes of joint hypermobility.

Living with joint hypermobility

Most people with hypermobile joints won't experience any problems and won't require any medical treatment or support.

However, JHS can be very difficult to live with because it can cause such a wide range of symptoms.

People with JHS often benefit from a combination of controlled exercise and physiotherapy, as well as additional help to manage pain and make everyday tasks easier.

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.

Read more about treating joint hypermobility.

Who is affected

Joint hypermobility is thought to be very common, particularly in children and young people. Some estimates suggest that around one in every five people in the UK may have hypermobile joints.

In many cases, the joints become stiffer with age, although joint hypermobility and its associated symptoms can continue into adult life.

It's not known how many people have JHS in the UK, as the condition is often not recognised or is misdiagnosed. It's thought to be more common in females than males, and less common in white people than those of other ethnic backgrounds.

Page last reviewed: 18/09/2014

Next review due: 18/09/2016

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Comments

The 47 comments posted are personal views. Any information they give has not been checked and may not be accurate.

MazinOz said on 06 September 2014

Please update your research! Your basing this article on a study done in the 1960's by Prof Grahame on ballet dancers. Even then researchers had issues with its conclusions. There is no such classification as "Benign HMS". Even Prof Grahame recognizes this " Hypermobility - Not a Circus Act". "HMS" is now recognized as is EDS Hypermobility type as a multisystem disorder of connective tissue - "EDS Hypermobility type" Gene Reviews Dr Howard Levy. Also Prof Jaime Bravo, A Prof Brad Tinkle believe "HMS" is EDS hypermobility type as they see patients with the same multisystem disorders as EDS hypermobile patients. This article perpetuates a long outdated medical myth that denies patients diagnosed with either "HMS" or EDS Hypermobility treatment not just for joint and musculoskeletal problems but also dysautonomia, migraine, IBS, gastroparesis, severe dysmennorhoea, visual defects, sleep deprivation due to pain, hence more pain and poor sleep and migraines due to disrupted sleep etc.
See Levy's article for the rest. Since Beighton's original number of classifications for hypermobility syndromes has been halved from 12 to 6, due to genetic testing I would not be surprised that HMS and EDS hypermobility type will also be recognized as the same disorder given that skin stretchiness is the ONLY difference. Is it sheer pride that the medical profession won't admit to a serious disservice to these patients and continue to not provide correct diagnosis and treatment? Apart from lack of medical treatment the incorrect labelling of these patients as hysterical, hypochondriacs, "neurotic", malingerers, drug addicts, Munchausen's syndrome +/- by proxy, child beaters, or a spouse as a wife beater really deserves to have such doctors sued for defamation, legal costs and medical malpractice.

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staceyleigh86 said on 02 July 2014

I have been back and forth for ten years now, I remember the exact day I asked my family GP for help, I complained of my joints aching all the time I was 18, I was double jointed growing up but as ive got older my joint have got stiffer always an erge to click them, I explained this and was sent for blood test after blood test nothing was conclusive. I get very anxious always losing things... constant throbbing aching pain in my lower legs and back. so after moving GP and after another few years for the first time after all sorts off misleading diagnosis my GP has finally mentioned HMS I have never heard of it before now, however I have been to the GPs on many of occasions with fingers that have displaced themselves permanently I don't know what to do, or were to start! I have been put on medication for anxiety as he thinks this will help my bowls to stop opening when im out and ive got to go back in seven days - my granddad (mothers father) suffered from osteoporosis , had a heart murmur (pace maker fitted), and brittle bone disease amongst a whole range of other things can anyone give advise??

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madmadammim said on 21 May 2014

I suffer from this terrible disorder and am shocked and appalled that the NHS still see joint hypermobility syndrome as two different things. The treatment for EDS type 3 hypermobility type is the same as for joint hypermobility syndrome and the only difference is strechy skin and the way your treated by your drs!

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juliemac1987 said on 11 April 2014

I am hypermobile and have fibromyalgia. I have only recently been diagnosed as hypermobile due to additional pain in my shoulders. I have had fibromyalgia since I was 19 but was diagnosed in 2012 after many tests and scans.

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Bluecrane said on 11 March 2014

I have had HMS all my life, and suffered mainly in my back and right knee. At 67 yrs I have had the Knee cartiledge replaced. and both big toes realigned. A bowel and bladder op after prolapse with the uterus removed. A Hernia fixed internally. Plus many times my discs in my back slipping out. Often I have been able to put them back myself but finish up at the Osteopath for treatment as the muscles go into spasm.

What I have learnt is 1) It gets better with age.
2) I have also learnt to pace myself. (Don't do too much)
3) I have learnt to take peoples comments with a pinch of salt. (So what if I am lazy?)
4) I take Naproxen as soon as I feel pain and go and lie down for 20 mins.
My Doctor tells me I am managing it well and need no support from her unless I have a really big flair up.

When I was at work I use to go to my car and sleep for 20 mins each lunch hour. Or even hide under my desk for a quicky. I also used the sick room to lie down when nobody was about.
I hope this can be a help to our younger sufferers.

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H2oelemental said on 02 March 2014

I live New Hampshire in the US and have been going to specialist every few years for knee issues since 1994. At first it was a muscle inbalance, then they thought I had tears in the meniscus. I hurt my back and was sent to a different physical therapy guy that I had never seen. He had me do a few test with all my joints and told me that I had hypermobile joints. He asked if I hurt my ankles often (which I do) and told me that I also have knock knees. I have a bunch of exercises that I am supposed to do as well as wear super supportive shoes such as hiking boots. My last visit to the knee specialist resulted in the answer of "We know something is wrong with your knee, but we don't know what. The only thing left is surgery and surgeons hate unknown surgery and that is exactly what this is. You could be off your feet for a week or 6+ weeks". It never happened. But to have an answer, finally is a relief!!!

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DionneH said on 03 February 2014

I'm 24 and was diagnosed a few months ago after constantly going to the doctors since the age of 18 about my sore knees only to be told there there was nothing wrong with me. I have been tested for arthritis over 4 times in the past 2 years. I finally got a referral to the rhumatology specialist after breaking down in tears in my doctors office because the pain in my knees, hips, back and wrists got so bad that it felt as if the joints were grinding together.
I went to the specialist who was able to tell my there and then that I have HMS, I have been referred to the physio who I have only seen once she has HMS herself so I'm hoping that she might actually be able to help. At the moment I've been given Naproxen by the GP but it doesn't seem to help so I'm trying to attend exercise classes at work even when I'm in excruciating pain because I was told that strenghtening your muscles can sometimes take the pressure off the joint.
The only concern that I have which nobody is able to answer for me, is HMS progressive? Mine started with clicking knees 6 years ago and now I have constant and pain in nearly all of my joints.

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Kayley876 said on 08 October 2013

I have recently been diagnosed with HMS after suffering joint back pain for over a year. I have been passed to doctor to physio to hospital with no help. I dont get any sleep because of the pain. I may get 2 or 3 hours broken sleep a night and have just become use to it. I cant work because i cant stand for long or even sit for long. It has completely taken over my life. I am on amitiptyline to try help me sleep and also 500mg of naproxen for the inflammation. I dont bother taking pain killers any more in the day because nothing works. Ive also been given exercises but it doesnt seem to get any better. I just dont understand how this can just come on someone. Im thinking of maybe asking for blood tests just incase they have miss diagnosed me as ive always been very flexible all my life im 28 so surely i would have had this before.

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mattyb2807 said on 02 October 2013

I was diagnosed with hypermobility syndrome a few years back. Ever since i was a kid i have had problems with my legs.im 31 now and suffer everyday with my joints and all sorts of symptoms. i have braces for knees ankles and use a crutch to keep the pressure off my legs when walking as i find it does help. All i can say if you have this condition is pace yourself dont let doctors tell you that you dont no your own body, people that dont suffer with this condition dont understant the impact it has on us. i had to reduce my working hours as i was taking too much time off work i am now doing 3 days a week and find it helps there is help out there but you have to be strong and help yourself. Some guidelines say that this condition gets better with time but this is far from correct it gets worse with time if you don't pace yourself. 2 years ago i was on just tramadol. Now im taking 10 tablets a day just to keep the pain and other symptoms under control. Walking some days can be unbearable.

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JJ McNicholas said on 27 September 2013

Hello. Im JJ and I have chronologically established a very similar pattern to the fellow people with HMS. I just want to say to any professional, family member or friend: the pain can be continous for us and at times we show no obvious signs of the pain. Hyperthetically speaking, after 30 years of managing my HMS, I've learnt coping strategies and often subconsciously.

I've had a tough time trying to find professionals that understand but there is hope. I do not bare any wait or walk and I can only manage between 3 to 6 hours on my powered wheelchair. But there is hope. I also have issues with my bowels, bladder and reproductive organs and muscles. Why so open? Because there is hope.

I'm currently in a respite bed within a Intensive needs unit with a team which includes health assistants, nurses, occupational therapists and physiotherapists.

I was dependant on major pain relief and became very ill due to the effects of the medications, I became depressed and gave up.. but there is hope. This team are helping me to learn more about my condition and to control it with a pathway of many theraputic options. The physiotherapy is making me stronger but above all they are understanding and validating my condition and pain. I'm currently learning techniques to improve my proprioception and therefore I am not requiring the medication all day.

There is hope.. I was lost in a spiral of going to A&E, searching for pain relief and validation. This cycle is now breaking. Physiotherapy and the education of my condition is helping me. It may help you. Consider discussing this with you GP.. Have a good life and do not be alone with your pain.

Thank you for reading this. JJ

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Butterfly 2 said on 24 September 2013

I was diagnosed with hypermobility syndrome 12 months ago at a clinic in London.they checked my vitamin B12 levels and vitamin d levels they were both low.I am on injections for B12 every few months,It definitely gave me a boost which hasn't lasted forever and stil get all the symptoms but it def helped my energy levels.I didnt realise how important B12 was it worth getting it checked out
I also had autonomic tests in London at theUCLH autonomic unit ,as my pulse rate goes up very high when I stand up.Sometimes there can be a link between the both.I was very lucky that my GP knew of autonomic problems as i may of never found out. I have waited 15 years and have been tested for so many other illnesses.Good luck with yr journeys

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Graciesmum said on 02 September 2013

I was diagnosed at 27 that was ten years ago... I had to explain what this was to the midwives when I was pregnant with my first child and the hospital panicked with a month to go as they realised my condition could result in rapid birth... I am concern that both my girls have it but they have never been tested... Should I demand that they get tested... I can feel my youngest wrist click in and out when I hold her hand??

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S2005 said on 03 July 2013

I recently visited a doctor that informed me about about a specialist at university college London, he also manages a pain clinic, I hope this is helpful

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Coheed89 said on 28 May 2013

I got told from a specialist physio i showed signs of hypermobility and yet nothing has been done to follow this up. This was back in February (i have been in pain for almost a year and still undiagnosed). After reading up on it within minutes i found out there is a specialists in hypermobility in Glasgow (the only one in Scotland if i;m not mistaken) yet none of my doctors has heard of this person. So if my GPs don't even know what to do with someone who is showing signs of this what am i supposed to do? I am so frustrated at going so long undiagnosed and with nothing but pain killers which don't even help much anymore.

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Charley32 said on 02 April 2013

I was diagnosed with HMS when I was 17, I went through two operations to attempt to strengthen my ankles but nothing worked, I had injections into the bottom of my feet but this isn't a long term solution, I have been on several different pain relief, the best I had was tramadol, extra strong co codamol and anti inflammatory meds, although it didn't take the pain away it did take the edge off a bit, I was sent for several physio sessions for the physios to say sorry we cant help you - complete waste of time. I was then sent to a pain specialist who gave me fentanyl patches - all that did though was confuse my mind, I find though that doctors are very unsympathetic towards this condition, when I tell them how much pain I am in they look at me as if it cant be that bad, sometimes I wish they could spend a day in my shoes. I have been told that my prognosis is a wheelchair by the time I am 40, there is no cure and basically nothing they can do. Does anybody ever feel that nobody believes them when they say how much pain they are in????? My HMS affects my ankles, knees, hips, wrists, shoulders and spine, some mornings it isn't even worth getting out of bed. I had to fight for DLA, after 3 years I finally managed to get low rate. I feel like I have to fight for everything, it is almost as though it is an unrecognised medical condition. Has anyone had a good experience or know of any pain medication that actually does take the pain away??????? Any advice would be very greatly appreciated. Thank you.

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helenc88 said on 05 March 2013

I've just been diagnosed with this. Last year I woke up and my shoulder was horrendous, one of the worst pains I've ever experienced. I went to A&E (it really was that bad) and they said I had done something to my rotator cuff (depite my pleas that it was my shoulder joint). They gave me excercises to do and said to refer to Physio if it wasn't better within x amount of time.

3 months later I got my physio appointment and the trainee I had was really lovely. He couldn't figure out what was wrong but kept referring to his consultant who then came in with him and in that first session they diagnosed me with this HyperMobility Syndrome.

I was really impressed with how quickly they figured it out (and the awareness as to be fair, I didn't even know it was a condition). My Physio is really nice and has asked to see me regularly for now to give me excercises for my shoulder but also my other joints. He's very understanding about the fatigue I get when I'm trying to hold the ball on the wall and takes it at MY pace.

This condition now explains ever such a lot about things I had passed off as simply 'me' and in my session, I'm going to ask about a few other twinges and aches to see if that's just me or part of this.

I'm also emailing York hospital to sing his praises as it has really been quite straightforward. Very pleased :)

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bridget4 said on 15 February 2013

I was diagnosed with JHS 2 days ago What do I do to get help with the pain. I've had the pain from 14 years old got worse as ive got older. If anyone can give me advice on who I can speak to thinks

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Craigxo said on 04 February 2013

I was diagnosed with JHS when I was 18, though they didn't explain it to me very well. I also have a mild spine curvature, which pushes my right shoulder upward and forwards - this caused a collarbone subluxation, so pressure from that was causing problems. It took years to get people to listen to me and finally it is now managable. I came off of pills after 3 years and while I did notice more problems while on them, the pills relieved them - until I came off of them. I didn't realise how much my body had changed/worsened in that time. My main problem is now the back of my shoulders, neck and upper arms - meaning sleeping is painful and it's only getting worse. I'm worried that if I go to the doctor, she'll send me to hospital and I'll get treated badly again or rushed along, without full and proper guidance on how to relieve these pains. As of now, I haven't slept for 5 nights and feel at a loss on what to do.

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dolly_1994 said on 07 January 2013

Becky Treasure,
Sorry to hear about your daughter, it is the same with me no two days are ever the same sometimes the pain is managable and other days its impossible to get out of bed. I tried Naproxyn and had to stop because i had the side effect of hallucinations. At the hospital the doctor didnt even bother to refer me for physio ( which looking at previous comments is a good thing! ) didnt explain the condition or anything all he said was that i should expect to grow out of it by the time i was 30! - not too much help but there you go. People in my life dont really understand the condition and sometimes dont appreciate the pain im in and how much it affects my life.. because you cant see it its not there kind of thing. Your daughter is very lucky that your taking her pain seriously, you sound like a lovely mum .. Good luck to you both, if you can post the links that would be great and i will search for that website as any support or help tips with pain relief would be great.
Thank you

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CharrisPoole said on 06 January 2013

I have been diagnosed with this at a young age, my mum has had it for a while now and im 14 and have had it since around 7, it didn't use to be so bad I could dislocate my shoulder if I wanted and I use to show people. but now if I carry heavy stuff or get dressed my arms will dislocate. my hips ankles and knees dislocate as well. it is getting worse at the moment, im suffering ith back pain and my hips, knees, arms and left ankle are always painful. Im sorry for everyone diagnosed with HMS because I know how hard it can be to carry on a normal life routine.

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becky treasure said on 06 January 2013

to Dolly_1994
sorry to hear of your diagnosis. My 14yr old daughter has also recently been diagnosed with this unpleasant condition. It has turned her life upside down. 18 mnths ago she seemed healthy, now she cant climb stairs, she cant go to school because her mobility is so poor, she has been admitted to hospital 8 times in 6 mnths for pain management, and more often than not, they couldn't even control her pain in hospital. She really has been through the mill the last year. My daughter has been taking Gabapentin and also Naproxen, which we think helps. She also takes paracetomol regularly. Before this she was on maximum codiene and Ibuprofen, and it just wasnt helping with the pain. She is still in constant pain, but its manageable and bearable more recently. But we take it day by day, as it seems no 2 days are the same with this horrid condition.
I also forgot to mention that, my daughter is also now in a wheelchair, even though some proffessionals think she shouldn't be....but I know my daughter better than anyone, and I know she would not be in the wheelchair unless she really needed to be.
I have found excellent advice on a site called "Inspire". Once you register, you then need to join a sub group called, ehlers-danlos syndrome. The members there are so very friendly and helpful. I have used this site to educate myself for my daughters benefit, because until recently I had never even heard of Hypermobility Syndrome or Ehlers danlos, and the proffessionals involved in my daughters care did not take the time to explain this condition to us. I also have some really useful links, but I am unsure if I am allowed to post them here? Hope you get some relief soon

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dolly_1994 said on 01 January 2013

I am 18 nearly 19 and female.
I have recently been diagnosed with hms it is a constant pain and sometimes it can stop me getting out of bed, i also get the other symptoms of ibs, low blood pressure etc... After being told by one doctor its just pain and i should get over it and accept it as part of my life!! i got a second opinion and had positive blood results for rhuematoid arthrtitis, i got referred to the rhuematologist at the hospital and he diagnosed me finally with hms. I feel that no one understands the pain thats comes with this and it is not well known. I have taken a few different strong painkillers and none will touch the sides ?! i was wondering if anyone had any pointers of what actually works for helping living with hms.. any help no matter how small will be great! - I dont feel the professionals that say physio and painkillers really understand the depth of HMS and how life changing it is..

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ChronicRockAngel said on 20 December 2012

Does anyone else have the pain med tolerence of a race horse? I'm in the U.S. where the only thing I ever heard about my hypermobility, was a laugh. This is a revelation. It would help me if I knew that my resistance to meds was more common, Thanks.

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anniemay007 said on 31 October 2012

I've always known i had HMS but only got diagnoised a few months ago after a few years of going to the GP having blood tests and getting no where. I finaly saw the rhumatologist who said i had hypermobility. Im only 20 now but I've noticed the older i get the worse my pain is getting. Im always extreamly tired and in pain. The more tired i am the more pain i get. Pain killers dont seem to work on the pain either. What can i do so im not so tired all the time and in so much pain. I had Physio which made my pain worse. So how do i get over this tiredness and pain!!!!

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Flisster said on 04 October 2012

I was diagnosed with hypermobility syndrome roughly a year ago at the age of 21.
I'd been having symptoms for about 10years at least but always had it put down to growing pains. At 18, having had enough of being told this, my mum took me to the hospital. We were told that my shoulder was dislocating upon movement, but they did not know why.
I have been "diagnosed" with several conditions, which turned out to be not the case and resulted in me having physio that did more harm than good. About 18 months ago, i had a shoulder arthroscopy finding a bursitus but nothing else to indicate why it was dislocating. Finally, my sugeon reccomended me seing a rheumatologist, and i finally got the correct diagnosis.
I have been having physio all this time but i'm still going downhill. Walking is becoming exceptionally difficult, and have been told that my shoulder is quite probably beyond repair by my physio.
I have now also been diagnosed, with a retroverted acetabulum, and a anteverted femur.
Has anyone else got these with hypermobility syndrome?
I have finally been put on disabillity benefits, having had to go to tribunal, and am fighting for DLA.
This condition has totally taken over my life, i am tired all of the time, can barely walk, and am in constant pain.
I have been put on quite strong painkillers (Dihydrocodeine, naproxen, omepazole and paracetamol)
I firmly believe that more needs to be done to promote the symptoms, and for doctors to be able to notice the symptoms of these earlier so people can be diagnosed at an earlier age before as much damage is done!
The hypermobility syndrome assosciation website was a great help to me, and i would advise any fellow sufferers to go on there!

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Sashat said on 03 September 2012

Im 18 and have been having symptoms since I was 14. It started in my hips. When I was at school I was always tired and achy. When the pain started getting serious I went to the doctors and all they kept doing was telling me to have a blood test and come back in 6 weeks then 6 months etc. I had to keep going back and consistently complaining about the pain until after 4 years of appointments with my GP they sent me to see a rheumatologist who said I had hypermobility in my joints. I also suffer from back ache constantly at the top of my spine, and the bottom on a bad day. My hips have been getting worse over the last few months and the pain gets worse if I sit down at work for a while and get back up? Anyone else get this? I also get headaches all the time but not sure if that's anything to do with my HMS

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stacey a w said on 26 August 2012

hi everyone i am 31 i have had hms since a young age but was diagnosed properly a couple of years ago ,at present things have been really bad with pain and tiredness and a feeling of being a big let down to my partner and my chidren.I am really struggling at the moment and find it really hard to explain how i feel to family and friends,if any body out there feels the same way i would to hear from u so i now i am not the only person that feels like this,and if u have any advice or tips please help me .

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D0rreen said on 01 August 2012

I was diagnosed with hypomobility syndrome at the age of 50 since then every member of my family also diagnosed. it's an extremely debilitating illness, and very painful, Inow have osteoarthritis, have had major reconstruction surgery to re-build my spine, I am now disabled. So please don't let your GPs tell you it's in your head or there's nothing they can do to help you. The only good part is my children & grandchildren are getting the help and advice nessassary to manage this illness. So please never give up , keep on until you get the care needed to limit the damage to your joints this causes. Take care and keep fighting. :-))

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clarkim said on 24 June 2012

Hi all,
just joined thesite & been reading all you contributions/comments.
I began suffering in my pre-school years and grew up with my mother believing the docs that I was a child hypochondriac with mental issues. I was eventually diagnosed in my mid thirties (now 52!) but the HMS was made as an aside and so I thought the main problem was Fibromyalgia.
spent a couple of years studying the web and eventually gave it up as non-useful to detrimental.

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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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