Sunday, 25 April 2010

What is Hypermobility Syndrome/Ehlers Danlos Syndrome

Before I start blogging about living with Hypermobility Syndrome/Ehlers Danlos Syndrome (hms/eds) it makes sense to explain what the condition is about.
Alot of people have never heard of hms/eds and those who have, often don't understand what exactly it is, after all its a very complex condition that even most drs don't even understand.

(added 2010)---
Hms/Eds is pretty much the same condition. Previously Hypermobility Syndrome and Ehlers Danlos were thought to be different conditions (with Ehlers danlos being more severe). However Drs have now agreed they are in fact the same condition, or there is so little difference between them, that people with either 'diagnosis' need treating exactly the same. So they are now seen as the same condition. Ehlers Danlos:Hypermobility Type. This is why often a person who is diagnosed with hms often hears drs refer to their condition as eds.

So in this blog I will use the term hms/eds. (in later entries I will refer to it as simply EDS).
They are connective tissue disorders which basically mean there is something wrong with the person's connective tissue, Collagen. You are born with hms/eds, it is not something you suddenly get, although some people (like myself) have very few problems until they reach their 20s). It is an inherited condition which means at least one parent will usually also have the condition however it often becomes more severe each time it is passed onto the next generation.

Collagen is a protein based material that has the basic job of allowing body parts to move. Collagen is present in the joints, mainly the ligaments, tendons and muscles, organ tissue, and skin. Its job in the joints is to allow the joint to stretch and move but also stops it from moving too much. If our joints didnt have a 'stop' point then our joints would not be able to support us and basic movemnets would be impossible. Our joints would fall apart. This is basically what happens in hms/eds. In people without hms/eds, the collagen is made up of fibres that stretch like an elastic band. If you stretch an elastic band eventually it snaps back to its 'unstretched' state which stops the elastic band from snapping. In hms/eds the fibres are like chewing gum rather than an elastic band. If you stretch a piece of chewing gum you know that eventually it tears and you end up with sticky gum all over your fingers! This is what the collagen is like in people with hms/eds. The collagen stretches and stretches but does not snap back. This means the joints stretch and move but move and stretch past the point they are supposed to. They are very bendy and wobbly and don't snap back into place and eventually when a joint stretches past the point its supposed to, it dislocates. Ouch!!
In hms/eds the main symptom is joints that dislocate on a very regular basis, often many times in just one day.
When you have joints that dislocate easily and joints which are bendy and wobbly, they don't do a good job of keeping you in one piece. Your body becomes very weak and unstable. Just trying to stand up can be impossible as you may have knees and hips that don't lock and wobble all over until you end up in a pile on the floor. This makes walking pretty tough too.
If your spine is unstable it makes it difficult to sit up straight and also contributes to the problems with standing and walking.
In the upper body, bendy joints in the shoulders, elbows, wrists and knuckles make it difficult to lift things, push yourself up from a lying position, and use things like cutlery, a toothbrush, a pen and even the crutches and walking sticks that help you to stand and walk become difficult to use.

Because of the bendiness of the joints, a person with hms/eds will use their joints over a 1000 times more in one day than a regular person. This means their joints grind and rub against the ends of their bones many more times than someone else of the same age. As a result the joints and bones get worn down very quickly which results in a very early development of osteoarthritis. People with hms/eds usually develop osteoarthritis as a result of degeneration of the joints as well as inflamation of the joints often before the age of 30. They also can develop osteoperosis, where the bones become weak, very early on.

Becuase collagen is present in organ tissue as well as the joints, people with the condition can also have problems with their organs, in particular, organs that are designed to move. The bowel and intestines work by muscles contracting to push food and waste through them. Because the muscles in hms/eds are much laxer(more relaxed and stretchier), they don't contract as well so in the bowel and intestines, the muscles don't do a very good job of moving food and waste along. This means that people with the condition often have alot of problems with the intestines and bowel, in particular ibs, slow transit, incontinence and other similar problems.
The same goes for the bladder too.
In women with hms/eds, the womb has to contract much harder during her period in order to shed the unused lining (this is basically what a period is). This results in very painful and very heavy periods. It also makes it difficult to maintian a pregnancy and many women with hms/eds experience more miscarriges and problems conceiving.
The heart is another organ that can be affected due to the amount of movement it requires to work. In certain types of Ehlers danlos, the heart can have serious issues such as heart murmers, slow and irregluar heart rates. People with the vascular type of Ehlers Danlos are at great risk of anurysisms and heart failure due to the rupturing of the blood vessels. The same with the brain which can result in stokes.
The skin is another major body part that is affected by hms/eds. In particular it is often very stretchy and soft which makes it more fragile. This makes it prone to tearing very easily and very poor at healing. People with hms/eds often have alot of scars that look like they are from serious injuries when in fact they can be from something as simple as a scratch. The skin also bruises very easily, often from simple things like kneeling on the floor or getting a hug from someone.

Because the joints in hms/eds are very unstable, the muscles around the joints have to do all the work to keep them held together. This means that most of your energy gets used up by the muscles. This means that people with the condition suffer really badly from exhaustion and very poor energy levels. Something as simple as walking up the stairs can exhaust the person so much that they have to lie down for 30mins to recover. This means that alot of people with the condition are also diagnosed with CFS/ME. Having such poor energy levels makes it even harder to do basic tasks such as dressing, washing etc.

For some reason, people with hms/eds are much more prone to alot of other conditions. Some conditions occur for obvious reasons to do with the weakend collagen and energy issues, other conditions occur but don't seem to have an obvious reason why.
The related conditions that people with hms/eds tend to also have include:
Fibromyalgia, flat feet, raynauds syndrome, insommnia, curvature of the spine, kyphosis (a hump at the top of the spine), hernias, neuropathy, carpel tunnel syndrome, premature aging of the skin, strokes, heart murmurs, rheumatoid arthritis, automic dsyfunction (a dysfuntion of the body's ability maintain normal function of systems such as blood pressure) and much more.

Hms/Eds varies massivley in severity. Some people may have very few problems and lead normal lives, able to do the same as people without the condition. At the other end of the scale, some people are seriously affected by the condition resulting in severe disability. They may depend on a wheelchair, they may need help to dress, bathe, change position in bed etc. In some cases, a person with hms/eds may become bedridden for periods of time due to the severity of the condition. People who are effected badly may not be able to work and rely on the help of others to get through the day. And of course in the case of Vascular EDS, the condition can often be fatal.

Because hms/eds is caused by a defect in the collagen fibres, there is currently no cure. Treatment concentrates on keeping the joints as strong as possible to delay the onset of degeneration. Physiotherapy concentrates on building the muscle strength around the joints. Occupational therapy looks at aids that can help make tasks easier.

Pain is a major symptom so becomes the main focus for treatment. Pain in hms/eds is difficult to control becuase it can fluctuate easily. But in alot of cases, medications such as tramadol, codiene and even morphine are used to help manage the pain. It often does not take the pain away but only brings it down to a more mangeble level.
Sometimes surgery is required to stablise joints but this is done less and less now as drs are aware now that operating on a joint just makes the other joints more unstable. Steroid injections are used more and more now to stablies joints by reducing inflamation. Steroids are injected directly into the joint which is extremely painful and doesnt work for everyone.
Other treatment focuses on stablising the joints with splints and braces so a person with the condition may wear various splints on their wrists, elbows, knees and ankles. They may also wear splinted supports to stabalise the spine, hips and shoulders. And of course the related conditions need to be treated. So someone who suffers from the hms affecting their bladder may need to use catherters and incontinence products.

Becuase the joints of a person with hms/eds are so unstable and dislocate so easily, alot of the time they go back into the right position very easily so people with the condition often learn fix to dislocated joints themselves. Sometimes however they do need to go to hospital as a result of a bad dislocation. People who suffer from the effcts of severe hms/eds often spend alot of time in hospital reciving intensive physiotherapy and pain treatment. They often have many drs from different areas such as rheumatology, endochronology, gasteonterology, etc and can have a hosptial appointment every week sometimes more than once a week!

Hms/Eds is becoming more recognised as a seroius condition by drs. Many people with the condition spend years trying to get drs to take them seriously and to get a diagnosis. Even then treatment can be very difficult to get. This is still the case in alot of places and as a result many people with hms/eds have to travel alot to recieve treatment and care from specialists who have more knowledge of the condition. There are currently only around 4 hms/eds clinics in the UK!

One of the biggest problems people with hms/eds face is the lack of understanding from friends, family and collegues. A person with hms/eds may appear to be fine, especially if they can walk. Often a person with hms/eds may be able to do something one day but not the next such as pouring a kettle or walking up the stairs. So it becomes difficult for others to understand just how difficult the condition can be. Even those who use wheelchairs or crutches to walk can experince problems with people not understanding. This can make relationships and friendships difficult and often a person with hms/eds becomes isolated as friends slowly disapear. Often a person with hms/eds has alot of bad days where they are unable to get out of bed or to go out. This means that friends often only see them on a good day so they then think that this is how the person is all of the time. They often don't comprehend how bad the bad days are.

Hms/Eds is a very complex condition that can affect the person's life in many ways. The condition often affects social and work life and can even greatly affect quality of life. Becuase of the massive range of issues the condition causes, people with hms/eds often struggle with many things that others take for granted. The lack of understanding of the condition and due to how it can fluctuate on a daily basis leads to the person finding it difficult to maintain friendships and to recieve emotional support from others.

This blog is intended to allow people to understand the daily issues living with hms/eds causes. It also is intended to highlight the strength and determination people with the condition have to get on with their lives and the ongoing fight they have to recieve appropriate treatment, and more importantly, understanding.


  1. Carrie,

    You've certainly been through a lot, dear lady! And you've also give quite an education to people here. As one with HMS, whose been a member of the HMSA half a year and often carries Grahame/Keer's and Tinkle's books, you've taught me some new things. Do you have favorite resources you've learned much of this stuff from?

    Thanks for sharing your insights. I'll be praying for you and all that's going on.

    By the way, your name is very pretty.


  2. Thanks lindsay.
    I've used lots of different resources over the past 2 years to find info on hms/eds. The HMSA forum is a huge resource as you know. I also trowel though the many articles and medical publications online.
    Alot of what i know has come from researching, more researching and researching again! ITs very easy to take everything you read as face value but it's important to compare facts across many resources. Doing this you will discover what is actually fact and what is absolute tosh!.

    Carrie (p.s. Im lil_miffy on the HMSA forum)

  3. Hi,

    I've recently been diagnosed with HMS and have learnt so much from reading this blog. It's made me feel so much less like a hypochondriac, so thank you!

  4. I laid down tonite with my laptop, planning a little more research into the cycle of my life since i turned 20- waking up feeling like my limbs would drop off me if i got out of bed, or like my muscles were concrete under my skin they got so stiff, and nothing in between. and long accepting that i was on my own and not to even bother with excuses about what i wasnt doing. i happened to stumble across this HMS thing, and 6 hours later im still too excited to sleep. i finally have something to tell the drs, and they cant say this is my wrongdoing or in my head. this is it- im done feeling stupid explaining the bruises i didnt know i had and nodding again and again that 'i should try SSRI's'. i have something to say this time.

    so.... thank you :)

    ps. i started 3000mg evening primrose oil daily for my bruises & scaly skin, and its done me a thousand times more good than any NSAID. after 3 weeks on it my scales were gone, body relaxed more at night and blood pressure less insane. dont know why, tried it on a whim, was the best thing id done until today.

  5. Wow this blog is excellent i've finally got something i can show my friend/family that they can easily read and understand


  6. Hi, i'm a mother of a 10 year old girl with hms she was diagnosed when she was 4, and has quiet an extreeme case she see's all types of doctors and because there is no pain clinic in the north east she has to go to Great ormand street hospital, we have to do lot for her on a good day she even uses a laptop to do her work and on a bad day she can not even stand up and touching her to help her is very painfull. the medication she takes is silly.(ibrufin,codine,paracetamol and donperidom) we have had adaption put in the property for her and i can not even hold down a job because of the condition. Could you please give me some info on getting her the DLA as we have been fighting for it since she 2009 and still no luck but she did get low rate when she was 5 for night time care, but the condition is worse now and thet still say no!.


  7. Hi,
    Thanks a lot for the info. I was diagnosed with EDS hypemobility type three months ago, finally after going through physical & emotional pain for so long. I'm having lots of difficulties now with people at work and with my wife, family and friends.They don't seem to understand my condition. Some also have an impression about me without knowing the name of my condition!

    Thanks for your efforts and God bless


  8. hi there, ive just been diagnosed with hms/eds after being made to feel like it was constantly in my head by my GP! i have bladder problems whereby i get up 3/4 times a night to pass urine as my bladder constantly feels full, a partial uterine prolapse, fatigue and pain in my thoracic spine which at times is unbearable. i also have POTS, postural orthostatic tachycardia syndrome, which has caused the symptoms of fatigue to worsen. i am a nurse and i had researched alot of my symptoms and had to force my GP to refer me to a rheumatologist as he basically said it was all in my head and put me on anti-depressants. i saw the rheumatologist and in 20 minutes he had diagnosed me with hms/eds. i encourage anyone that thinks there GP is ignoring your symptoms to ask for a second opinion or change your GP.

    Heidi x

  9. Like the others who have commented, I just wanted to say thank you for the very informative post. I was just diagnosed with eds almost 2 months ago after nearly 10 years of pain. Even with an official diagnosis, my friends (but especially my mother) still don't seem to understand how much pain I'm in. For years I've been told I was lazy, making it all up, or just had growing pains. My doctors told me it was all depression or because I was overweight. I couldn't get them to understand that the weight gain was because many days it hurts to even lay in bed- much less get out and exercise. It's nice to find an article that has so much information in one place- as there doesn't seem to be much info out there. So thanks again! :)

  10. Hello,
    I am currently battling with this problem myself--GP who doesn't care. It was my podiatrist who suggested I might have EDS because I've been going to her so often lately with my mangled feet. I have very flat feet which causes a lot of pain and swelling in my ankles. I'm double-jointed all over the place, my thumbs and knees dislocate and sometimes my shoulders when I sleep. My back and hip go out regularly making it very painful to walk. My back is so bendy that I can pull my leg behind me and past my head. I also have mild scoliosis. I've felt constantly exhausted ever since high school, I get migraines, and have problems with IBS--something that my mom and sister do also have.
    I told my GP all of this and told him what my podiatrist had suggested about the EDS. He quickly shut me down based on my not having debilitating pain in my knees specifically, and the fact that there is no genetic connection with my family. However, my mom is adopted and we don't know anything about her background. I'm 27, I'm in pain, and I feel so limited in the jobs I can perform. My situation isn't nearly as bad as others that I have read (I can still function and go to work/school), but I've definitely begun to notice some challenges that I don't think the average 27-year-old has to face.

    Thank you for the detailed and thoughtful blog post.
    -Lindsay #2

    1. Please see a different doctor! These conditions are serious, and you need to find someone who knows what they are talking about.

  11. Thanks fo the great post.

    I have EDS too. It has completely affected my life to the point where I've lost my family. I'm not as severe a case as you are, but I'm enough of an EDS case that health professionals have classified me as one.

    EDS has been the driving force behind my life. I endured a violent and bitter childhood because of it, barely got through college, and couldn't work the long hours needed to survive in graduate school. I ended up relying on my secondary skills to get by in life, but that is still a struggle.

    One area where my EDS gives me an incredible physical advantage is playing violin and guitar (which I do professionally). My soft hands (bilateral swan neck deformities) and loose joints allow me to contort my body into various shapes that allow me to play things that people without the condition cannot do without physical pain. I can practice long hours or play long gigs without a hint of tendinitis or carpal tunnel, though I cannot get through a gig without having to sit down multiple times due to my weak erector joints. Nicolo Paganini likely had the condition too, and i play all of his music for both violin and guitar with utter ease because it actually fits my body!

    The other area where EDS has turned me into a fine professional is combative martial arts. I was bullied relentlessly at school for being Asian AND frail, and then my family beat me daily because they assumed that I was being willfully lazy when I was actually battling the condition (my family is in medicine but they refuse to believe that I have EDS). As a result of daily physical combat at home and at school/work, I now have an incredibly high pain tolerance and also have a comprehensive understanding of how to defend oneself against any kind of bully. Today I teach combative Chinese kung fu in my own business because I have trained my EDS body to act as a flexible shock absorber while my contortive EDS body also allows me to do any kind of move from virtually any style.

    One aspect of EDS that isn't talked about much is vulnerability to upper respiratory infection. I have had to quit several jobs because I kept getting so sick from them on a daily basis. In my martial arts business, I completely stopped that by acquiring an Austin Healthmate Pro air purifier that removes both particulates and odors. I went from constantly missing work from flu level illness to having only minor colds. Unfortunately, I can't take my Austin onto airplanes where I ALWAYS come down with major respiratory infections even though I'm only 38.

    1. I was recently diagnosed by a rheumatologist with begnign Hypermobility Syndrome after finding out what I have suffered with my entire life by researching on the internet. I am a fifty five year old woman that raised three children. The third child I had to raise for half of her life while fighting in court for any support. My ex loved to torture me with the fact that I could not work much of the time and had no diagnosis. I had my parents in their eighties keeping a roof over my daughter and my head, while I took on a troubled foster child to make any ends meet that I could. I finally have gotten remarried after a ten year relationship and understand how difficult it was for a man to take someone on that could not contribute much financially and had so many unexplained health issues. The good part was that I have had mental health therapy for seven years on and off to keep myself going.I came to terms with every issue I ever had with the exception of what was happening with my health.My therapist told me there was no such thing as fibromyalgia when I got diagnosed with that and that was the end of my relationship with my therapist.I did learn all about the charachter disorder my ex had and unfortunatly went on to suffer ten more years without a diagnosis. Every doctor I had just wanted me on antidepressants and thought that that would take care of my chronic pain. Internet access has changed my life as far as finally knowing what I had. Unfortunatly the rheumatologist I went to diagnosed me officially, but now I just have hypermobility on my chart with loose joints next to it. I am recovering from my second surgery for prolapse of abdominal organs and tissues and none of the doctors seemed to be concerned about my condition.I was so nervous going in for surgery and worried that the surgeon did not seem to even know or care about my diagnosis. I have recovered very slowly with a lot of bleeding and pain. I will go in for the final post op visit next week and am pretty sure at least part of this surgery has come undone already. My research now will be how to get help from anyone that knows about this condition.Also to see if they will try and find out what type I have. The rheumatologist said it was begnign hypermobility syndrome and just told me he knows enough about this condition to diagnose it when I asked him how much he knew about it.My skin is not real stretchy and I have osteoarthritis throughout my body from years of back issues along with issues in most of my muscles and joints.It has been really helpful reading others stories and the articles that do not dismiss this as a minor annoyance. I read an article called living with the hypermobility syndrome this morning and just cried as it was the story of my life. I do know from all this, I could be in worse shape with this disorder. Good luck to every one of you.

  12. Thank you for shining light on this :) just got diagnosed with HMS and yes it's nice to know why I am in so much pain at last, but the negativity from friends is hard. I have good weeks and bad weeks! Thank you for pointing out that not everyones case is the same, non sufferers often don't take that into account. @LuluSaysss (twitter)

  13. Thank you so much for writing in such a detailed and informative way. It was lovely to read something that I completely identify with. I am 51 and waiting to see a geneticist at Guys Hospital in september. My daughter who is 25 has recently been diagnosed with EDS and that's what prompted me to be tested as I have so many of the symptoms of it. I have osteoarthritis which is debilitating, and has been diagnosed for approx 6 years, although I have had chronic pain in various joints prior to that for probably the last 20 years and had partial dislocations that simply popped back. Now Iim finding the constant cracking of joints is like my own soundtrack sometimes and the pain on bad days leaves me feeling low and exhausted....but I then look foward to a couple of better days which I know will come. Probably will overdo it and be wiped out for the next 2 but have to keep trying as much as you are able , although listen to your body telling you to stop is the important bit too ! I guess the reason for my comment here is to say that it's so nice to hear other people's stories about EDS and how they cope....and to have factual information that Makes sense of the way I'm feeling. It's a debilitating condition and an invisible one in many ways. Thank you for letting me addmy thoughts. X

  14. Hi Carrie!
    I thank you so much for your informative post. I printed it out so that others who(like you said) see me on good days only. Ilet them read it so they understand that I am not really trying to isolate myself from them, it is just harder on some days to get out and do anything. Some of my doctors that are unfamiliar with this diorder also have definitely benefited from it as well. They now have begun not charging me for appointments cancelled that day. Usually it is a $25 fee if you do not give 24 hours notice, but they understand that some days I just can't get out of bed. I just got my powerchair, but have not had enough money to put in a ramp. So, until then I just have to cancel plans if I wake up sore, or exausted.
    I was wondering how you were doing. I haven''t seen any posts from you recently. And, although I don't know you personally, I worry. It might be just the fact that you have given me sooooo much inspiration! If you want, I can be found on facebook...Michelle Seefried.
    Just another thanks and hope and pray that you are doing well.

  15. My daughter has just been referred to a specialist in manchester to see if she has it. The dr has seen it in another EDS patient but I have been told if she has it a referral may have to be made to GOSH. She certainly has the signs and syptons so am hoping after years of trying to find out what is wrong between paediatrics and neurology we may finally get it sorted and taken seriously

  16. I was Diagnosed with EDS type 3 (cant spell but thts nothing to do with it lol) when i was 7 because at the time i couldnt walk up hills had to push myself to actually get up the stairs among other things. At that time i was so bad i had to be admitted to great ormand st for 2 weeks in intensive rehab, whilst i was there i saw children who were being pushed around in weelchairs everydays by their mothers, but as soon as their mums left the room for us all to do our physio sessions these girls would get up, run round and play on all the gym equipment for the next hour and a half! i couldnt believe these girls so i begged my mum to get me a weelchair but she and her dad both have EDS too so she said definately not and if i gave up then my condition would beat me. So from tht first day i have been fighting... I was staying on the 5th floor of the hospital so every morning me and mum would not take the lift but we would run as fast as we could (at the time not very fast atall) down the 6 flights of stairs to basement and we did that for the next 2 weeks.
    i wll send the rest in a sec as my laptop is being annoying and wont let me send it all together

  17. heres part two it wont let me do the next bit so part three will be up in a sec
    I am now 14 and i think ive just got used to my condition but i would definately not say that i am disabled. Personally i think i basically cured my self (with alot of help from my mum obviously) because other than some pain in my back and neck, on a good day i am normal!!! of course im not cured because on a bad day my flat feet still burn and my arm muscules fatigue when i write and essay, and (touch wood) i havent ever dislocated or snaped anything i just break bones instead lol ready for this ... ive broken my wrists three times, my nose twice, both of my little toes and the bone done the side of my foot i have also chipped a piece of bone off my shoulder! phew

  18. You May be wondering how im suddenly so much better than i was when i was 7??? after i left great orlmand street they gave me an extreme physio plan but to be honest i gave that up a long while ago i just excersise alot and try as hard as i can not to give up, i ride my horse 4 to 5 times a week for at least an hour at a time, i walk a mile to school nearly every day and i sail my boat nearly every weekend, i know not everyone can do what i do or has a chance to do what i do, but it has made me and my mum so healthy because of it even when ive been in plaster i still go and do lots of work at my horses yard and i still go to school. I think what im trying to say is dont let your EDS/HMS beat you, you have to battle through the pain and stay as fit as possible. I used to have no muscule at all but im so strong now that i am one of the best at p.e in my class, i guess me and my mum are a bit wierd because she didnt even know she had EDS until she frist snapped a ligament, because she was so fit and strong but after she became less strong one injury lead to another and then one condition lead to another and to be honest i would tell you all the things that are wrong with her but i cant remember them all LOL, she does have POTS though (i probaly do but they wont test me till im 18) and APS Anti-phospholipid-syndrome (spelt wrong i know) she has been through so many injurys and no one ever believes her when she just walks into the local "walk-in centre" and says that she has snapped so and so or has dislocated so and so for the fith time that day and would like another brace. So then because these "doctors" say that theres nothing wrong with her she believes them and thinks that she is a hypercondiact, we all know when we have done something serious thats why we go to the hospital!!!!! its insulting that they say that we are "making it up" or "have just sprained it" well i broke both of my wrists at the same time and still went to my girl guides meeting that day, i then went to bed, then the next morning decided that i might as well go to the dreaded walk in centre even though i knew i had broken them both, i think people with eds have higher pain threshhold too cause we dont usually want accept that we are hurt yet again ( that might just be me and my mum though)... when we got seen later on tht day the consultant asked which one hurt more i said " well erm they both hurt alot" and he said well you cant have hurt both of them can you, so which one hurts more? i said that i guess my right one hurt a tiny bit more even though the left one hurt alot too. so they x rayed my right wrist and refused to x ray the left when we came back so that they could look at the xrays the said that yes i had done my right one and sent me off to put a backslab on (backslab- a plaster cast which is only made of plasteer on the top half and is just fabric on the bottom allowing the break to swell) but the next day after i had to use my left wrist all day and it had become alot more painful the one which was actually in plaster,however after that my backslab cast actually snaped in half!!! i could actually bend my wrist as if there was nothing on it!! so we decided to go back to the hospital that we knew would actually know what they were doing, adenbrooks hospital in camebridge is absolutely amazing and have always actually listened to me when i have been in pain which is actually amazing!!!!

    anyways enough of my rambling, i hope you guys can all stay strong because that is what really helps along with some ibroprofen and paracetalmol
    also i am watching this programme on tv at the moment called "helicopter heroes" and they literaly just said that "being a couch-potatoe is probably more dangerous" WHICH IS SOOOOO TRUE DONT GIVE UP AND STAY STRONG!!!!!!
    hollie ( cloudylemonade)

  19. this is good to read. I didn't know that it could cause problem periods too. I was diagnosed with poly-cystic ovaries when I was 21 but I suppose the hms could contribute to the intense pain I get with that too. I'm 24 now and I've been struggling with problems that went unnoticed since I was 10. I was labelled as lazy and even when I was unable to run more than a few feet before 1 of my ankles became unstable it was passed off as nothing. Unexplained dislocations doing random things and bruises appearing from nowhere, as a way to make light of it my boyfriend and I frequently joke that i bruise like gone-off fruit, no matter how down you get its so important to laugh if you can.

    As I've got older the problem has just got worse. I saw a specialist earlier this year and got an extremely negative response, this was a man who was more interested in talking about himself and dismissing my symptoms and even at the start of my appointment walked out and left me for 20 minutes to go speak to someone else about another patient (most professional when I waited 5 months to see him!). Despite my physiotherapist telling me I was very hypermobile, the specialist disagreed and said he wouldn't give me more than 2/3 on the beighton scale. Despite the fact that I obviously have very unstable knees (the caps shift a lot from side-to-side) he dismissed me as having "normal knees" without even checking. He even bend my fingers so far back he actually caused me pain.
    He made me feel like such a hyperchondriac fool that I didn't have the confidence to tell him about my other symptoms including long-standing digestion problems, random palpitations and breathing episodes, and now problems with my right arm getting more stiff and painful when driving or when its cold (I sometimes wonder if those joints are starting to wear out) which I suppose could explain why my fingers are now less flexible on my right hand. And even at the end when I casually mentioned another problem I have which I call "mini-blackouts". He said "oh yeah thats orthostatic hypotension" and then pretty much waved me out the door.

    I read that its inherited but I have also read that it can just crop up as a random mutation. For me its difficult to pin-point where it might come from. My sister is a little hypermobile but we are built so differently. I am tall and skinny with long limbs which isn't a pattern i see in anyone in my family.
    I'm so fed up with being treated this way by people who cannot understand and assume that since I'm not obviously physically impaired that everything is fine and I'm just having a good whinge for attention. Like anyone would ever want this!!

  20. I have been suffering from joint hypermobility for many years now but it has only been recently that I have been officially diagnosed. I don't suffer as bad as some but i do suffer daily with constant pain I completely relate to being believed about the pain. I have recently been signed unfit for work due to work related stress as my line manager doesn't believe me. Im lucky my parents are extremely supportive and a have an amazing small group of friends who help me as much as they can.

    What would be your advice for my work situation?

  21. Dear Carrie,

    I have a very close friend whom I have just learned has type III EDS. Your blog entry really helped me a great deal get a better understanding of what she might be going through. I haven't found anywhere else on the internet give such a candid view on EDS. So than you!

    Kind Regards,

  22. SNAP.. and bend.. You described it so well.

  23. This is such a great post! I was recently diagnosed with hypermobility after I finally had good enough health insurance to look into my chronic (pretty much since the beginning of puberty AT LEAST) knee problems. My physician diagnosed me with Chondromalacia Patellae and sent me to a physical therapist, who took a couple quick looks at my knees and hands and immediately recognized signs of hypermobility syndrome. After the diagnosis I started looking more into the condition, and keep finding so many things that have plagued me for years (from awkwardly large hands, lanky legs, slightly tilted eyes, and huge rib cage to debilitating menstrual cramps and touchy stomach, heart burn since my earliest memory, bad posture because sitting up straight is EXCRUCIATING, a deep hatred for standing still and running/standing on concrete, clumsiness, terrible proprioception, and on and on...) are tied up in this. I even have the ridiculously thin, soft skin (like, roadmaps - every vein in my body is as visible as the veins in those clear plastic anatomy models) and hot pink zebra-stripe stretch marks whenever my body loses or gains a pound. It's so great to know that all of these idiosyncrasies and maladies, and feeling like a 90 year old at 25 are not just in my head and can actually be dealt with.

    I'm so sorry to hear about how your family treated you - mine were never that bad, but they never really understood how much I was hurting. Dragging me along in the mall or the grocery store or telling me not to lean on EVERYTHING because every part of me hurt after just a minute or two of standing...Mocking my weird, weird running style (they said the way I flailed around on the soccer field reminded me of an ostrich)...Teachers were unintentionally awful too, especially in gym after I started to get my period and could NOT do ANYTHING when the cramps set in and my joints went all wobbly.

    I had no idea about the connection to respiratory infections - I've had several sinus infections a year since I can remember. I recently got a humidifier that has been helping me tremendously in these cold winter months.

    Anyway I'm writing a blog post of my own down here. I'm just so excited to finally know that I'm not crazy and I'm not alone, and I won't have to just sit around gaining pound after pound because my body hurts too much to get off the couch.

  24. Thanks for sharing this! it is very useful, the more info we have on this the better. I was diagnosed with Hypermobility Syndrome, so can i openly say i have EDS? i´m still unsure about this, not doubting you at all, but i still hear people saying is not the same so i try to be careful to avoid stupid discussions. A rheumatologyst will see me next month. I would be the first in my family to go ask about our issues, none of my relatives have a diagnosis but it is clear we suffer from this.

  25. I think this is just about the best discription of EDS I have seen. The symptoms and effect on the patients life are wonderfully shown.

    The social effects and isolation are also knowingly discribed. It is very hard sometimes when someone asks how you are and you look great but feel so ill. How do you tell someone you have a serious disorder and are feeling awful when they have just said you are looking well??

    My daughter and I both went through the tuts and knowing smirks of the medical professionals and were thought at best needy depressives, at worse time wasters. Ho hum. We actually both ended up with a rare mutation.

    In response to the above post by KHuang EDS can cause respiratory problems, have you been checked in this area for any EDS related issues??

    So best of luck to all, don't be put off by know all medical staff. EDS is a rare disorder and most will have never seen another case unless a specialist in it. Janex

  26. Hey Carrie, I was recently diagnosed with EDS and your blog post helped me so much! I just wanted to say thanks, as a fellow blogger I know it's always nice to hear when we help others with sharing our struggles. I see you haven't blogged in awhile, hope you're doing well.

  27. Wow thanks for the blog u have answered many of my questions been diagnosed with hms just over a year. I have severe bowel problems starting to think i have bladder problems to i also suffer with migraines and extreme flat feet which has caused severly painful swelling in ankles i also have a curved spine and painful joints :( only just got physio but i am sooo glad to hear that its not just me

  28. Thank you for this clear and informative explanation.
    I was diagnosed last year at the age of 41. Having had minor aches and pains for years, i had a chest infection which it seems acted like a chink in the armour. It is difficult to concentrate on being sociable when everything hurts/aches/plays up, and I am finding that right now i am absolutely exhausted. I have just also discovered high blood pressure!!!!
    again, thank you for a simple explanation - one that i can show others, so that they may not just think i am making all of this up or being over dramatic!!

  29. Just wanted to say thank you and good work putting this site together.
    I'm a 35 year old mother of three beautiful hypermobile children and I also have joint hypermobility syndrome/ EDS myself. It's been a long hard journey for me too!
    My medical notes and history state that from birth I have hypermobility due to having 'clicky hips' but throughout my life, several injuries, debilitating symptoms and dislocations, It has been dismissed as not being worth acknowledging to any degree. I also have skin issues, such as easy bruising, pain from gentle touch, unexplained bleeding resulting in the need for a blood transfusion, and when I had a coil fitted after my second child, it went straight through my uterine wall and into my abdomen and had to be surgically removed, despite all the evidence being in my hospital notes it was never really picked up as being related or even relevant.
    I have obviously been treated for various issues but the severity of my symptoms has always been played down and even ignored for many years! I was even treated for bipolar disorder for 20 years! and was told that my pain, anxiety, insomnia nerve issues etc was all just pyschological in nature.
    After 35 years I finally got to see a rheumatologist who confirmed extreme hms/eds but just sent me for more blood tests (to rule out any other issues)and referred me back to the gp and told me to just exercise my painful joints to build back my muscle tone! (I lost some muscle tone last year after being bed ridden for two months due to pneumonia and pleurisy.
    Although I have the diagnosis, I still feel dissatisfied with the attitude and care offered for this condition and I'm just so glad that people like you are working to raise awareness.

  30. I think I have it as my arms and legs are very flimsy and stretchy but now I know what I have to do to help.

  31. Can somebody help me,

    My daughetr was diagnosed last week with hypermobility and growing pains, she is 4 and for the last two years has cried almost daily about one pain or another, her wrists hurt her, her feet and legs and arms hurt her too, she suffers with constipation but i wasn;t sure if that was because she also has PKU, and to go for a wee is normally an urgency too, she also complains about having an ulcer in her mouth all the time and the doctor thinks she might still have reflux which is causing her husky voice and sore throat/neck as she says. The consultant said to me there is nothing they can do other than what i am doing, (warm flannells, massage, baths and paraceptamol and nurofen) I feel like i have been hung out to dry while my poor daughter is suffering. She starts school this september and so i ahve been back to the gp to request some sort of help for her, she is looking into it for me. Any advice would be appreciated.


  32. What do people do for jobs? I was diagnosed with Hypermobility 6 months ago... i never had any symptoms apart from being flexible. But in the last 6months i have dislocated both shoulders, both hips and my sacroilliac joint. my problem is... i dont feel my dislocations and carry on as usual untill i notice iv lost range of motion or cant weight bear. I get a deep dull ache, but no acute pain. And the ache doesnt usually start till a few days after iv injured myself. Does anyone else have this problem?
    I also have hart murrmers, asthma, fatigue ect but never knew it was related.

    also im only 20years old, but i already have my bachelor of nursing and am doing post graduate studies. But now i dont know if nursing is right for me. What do people do for careers?


  33. Thanks for a great post;I too have EDS,plus a whole bunch of other related problems.Could totally relate to the post,as well as ufortunately the comments about Drs,thought I think its more a lack of awareness problem;for example I recently had to go to hospital whilst visiting family in Yorkshire,and the dr there had to google it.

  34. Hi,
    I found that a diet containing unpasteurized honey and fruit has really helped with the respiratory infections. As you may already know, honey is not recommended for very young children.


  35. Hi Carrie,
    I'm a 14 year old student whom for an independent project is studying hypermobility and depression for EPQ (Extended Project Qualification). For my studies I have composed a survey asking for opinions to help me with my project. If possible, could you share it on you blog or with others? This goes for any conditions related to hypermobility - not just EDS but conditions such as Osteogenesis imperfecta, Lupus, downs Syndrome and many others. If you want to take a look, link is here or email me at

    Thanks vey much!

  36. It’s really an amazing blog about Wrist elbow splints & Back Supports.Thanks for sharing with us great information about this lovely topic. I really get benefit from this Blog about product.

  37. I very complete and helpful blog. My wife was diagnosed 4 years ago with HMS, but the doctors just dismissed it. She has recently been diagnosed with Raynaud's which she has had for years but never bothered to see a doctor with as she has it in her family.

    We are now returning to the rheumatologists hoping for more support.

  38. You can't associate all of these symptoms with HMS. To my knowledge, people with HMS do not have autonomic nervous system problems, vascular problems or stretchy skin, for instance. Just congenital hyper-mobility. The conditions are actually not synonymous in medical literature but there are SOME doctors out there that have decided to group them together, however, this is not the majority, nor is is factual that they are one in the same. (maybe this information could be included? I did think it was very informative other than that :] )

    1. Has HMS is now universally accepted as EDS-Hypermobility type, those conditions are commonly associated with HMS.
      HMS is now understood to be a multi-systemic condition affecting many systems and is no longer viewed as simply hypermobility of the joints. That is a very old fashioned beleif and one that is responsible for the mis-diagnosis and lack of appriate treatment for many patients.
      'Hypermobility' of the joints is simply that, hypermobility. However, 'hypermobility syndrome' or 'ehlers danlos syndrome -hypermobility syndrome' is a comlex condition that does affect the autonomic system, digestive system, urological system, and more. It is important that a patient sees a doctor who understands the complexities of the condition and is up to date with current understanding on EDS/HMS.
      Doctors who believe EDS/HMS is simply 'hypermobility of the joints' can cause searious damage to a patient due to neglect.

  39. I've been diagnosed with HMS/EDS for 8 years now, and it is gradually getting worse. Last Thursday after my most recent trip to A&E for a shoulder that dislocates whilst doing the most basic tasks (opening doors or brushing my hair,etc) I have finally been referred for more than physio and an x-ray, despite me telling them that my condition is due to collagen, and not my bones! Hopefully this is the start of some progress. I'm fed up of having to try to teach my GP about the condition, as he seems interested, but not enough to try to find out about it.

    I love finding more people with JHS/EDS, it reminds me that I'm not alone in this, as I so often end up staying in alone, it's easy to think that there is no one else who suffers.
    Thank you.