A Conversation for Hypermobility Syndrome

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Post 1

Brown Eyed Girl

It appears that I'm hypermobile and didn't realise it. Maybe that's why my shoulder continually falls out of the socket.


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Post 2

Cal - interim high priest of the Church of the Holy Tail

smiley - hug see a doctor smiley - smiley


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Post 3

Wilma Neanderthal

smiley - biggrin

I love hootoo! BEG, definitely go see a dctor. Maybe take a printout of Cal's entry with you?

smiley - hug both of you.


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Post 4

Medibot

Seems I am hypermobile too. I always wonders why my knees can sort of 'lock' backwards smiley - biggrin and why I can almost do the splits without exercising for months! My elbows are fine though.

My friend has a collagen defect with similar symptoms. I wonder is the are the same? It's causing dodgy hips in both of us whatever it is. smiley - wah


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Post 5

Brown Eyed Girl

Well, I'm already seeing a doctor about my hypothyroidism, and then I want to get my birth control sorted out...I'll try to fit it in. Blimey, I feel like a hypochondriac!

smiley - biggrinBEG


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Post 6

Cal - interim high priest of the Church of the Holy Tail

Inscription on a hypochondriac's gravestone: See!! I told you I was ill!! smiley - winkeye


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Post 7

secrettiggs

i was diagnosed with hypermobility syndrome when i was 16 years old, i have a serious problem with it, i have on average 2-4 full dislocations and around 10-15 sprains/strains and ligament damaged incidents per year.
I have god knows how many painkillers to take and every winter i loose the ability to walk even short distances without crutches or aid.

so if you have hypermobile joints but without the pain, think yourselves very lucky indeed, cause i have suffered from this since a very very young age and ive only just found a specailist!

HMS isnt fun - even though i can twist and bend in fun directions!
if you think you have HMS i would sugest seeing a doctor as it can be progressive!! smiley - winkeye


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Post 8

Cal - interim high priest of the Church of the Holy Tail

Hi Secrettiggs

I found these message boards very useful http://www.hypermobility.org/phpBB2/index.php?sid=8ba90456344317fb99d2332af463369a

It full of people with varying degrees of hypermobility syndrome and it's proved very useful to me, I started having problems when I was 14, but was not diagnosed until quite recently. I'm now waiting for an appointment to see Professor H Bird who runs a hypermobility clinic at Leeds.

smiley - smiley Glad you've now seen a specialist and everything is coming together for you. It's not nice being in pain and not really knowing why.

Good Luck


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Post 9

dawngea

Hi

I have never been diagnosed with it, but my 15 year old daughter was finally diagnosed early September, up to that point we just kept being told she was a bit flexible and double jointed and not to worry. She had got to the stage of having both her knees dislocating, all her fingers (not all at once) and her jaw dislocating before anyone took us seriously. I was seriously beginning to doubt myself or her because no blood tests or anything ever proved positive so i thought i had become a hyperchondriac and that my daughter was following my example..

I am 43 and suffered with a dislocating knee as a child which was 'fixed' when i was 23 with surgery, 6 months ago i woke up with a painful knee and thats how its been ever since. 10 years ago i was diagnosed as having Golfers AND Tennis elbow in one arm now i have it in both..... even though i havent worked for 2 years...like you i now live on a daily input of pain killers but i wont pretend to understand how hard it is for you as my hypermobility is not as severe.

I worry for my daughter however, who is already suffering from pain in her elbows and the dislocations, dizziness, gastric problems etc all conditions that were never linked until now.

I AM HAPPY I AT LAST KNOW WHAT IT IS... but have to accept that there isnt a lot that can be done.

I hope you dont mind me writing, but i feel so releived to have found out what it is and to find others who are managing to cope somehow.. take care and keep writing.

Dawnsmiley - biggrin


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Post 10

pinky82

hello ive just found out that my son has hypermobility syndrome i was sent away from the paedatrician appointment with not alot of information on the condition or advice on the matter. He being reviewed again in 6 months but in my opinion 6 months is a long time for a 4 year old does anyone have any advice.x


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Post 11

kaytriley

I believe my son has HMS as well, he is only 4. He didn't crawl at all and was 18 months before he stood up and walked. He doesn't like to do lots of excercise as his legs get tired and he gets fed up. His balance isn't great and he is 'clumsy'. Not sure if teh eye sight problems are linked but he also wears glasses. The doctors won't do anything as being flexible is part of growing up, however the flexibility shouldn't cause overt problems and you shouldn't reduce teh amount of excercise he does as it helps strengthen the muscles and therefore lessen the problems. Keep an eye on him and make sure his teacher knows about it as it can effect their ability to control a pencil properly. I have HMS and started having problems with the middle of one foot when i was about 6 or 7. Everyone tld me - including my mum at teh time that it was growing pains. I used to run for the school and county but found i had to give up as me ankles used to 'fall out'. When i went to university, my knees and hips would come out quite regularly and i ened up with a steroid injection in my knee. I was finally diagnoses with HMS when i was 25. I regulary have pain in my right leg from hip to sole of my foot but haivng had physio now know how to lessen it and control it. There is no cure for this, its about management and keeping safe.Hope this helps smiley - smiley


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Post 12

kc4843

Hiya,

I have suffered severe pain on and off since i was 16. I only got diagnosed 6 months ago. I suffer with severe pain and i am only 24. I am on constant pain medications and sometimes i cant even get out of bed. smiley - wah


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Post 13

ptd142

hi, I got diagnosed 10 years ago, with no real long term information given. I did however have to give up my job, take brain numbing painkillers and try and look after a 3year old, who is also hypermobile in some of his joints but does not appear to have pain. I have had pain in lower back since i was a little girl, my parents decided to get me checked out when my left hip dislocated when i was around 10. I swear to god the docs etc, didn't have a clue, and if they did they weren't telling me. I was told growing pains, i was treated for uti's and kidney infections. I was told the pain may settle down or it could get worse and there was no way of telling so i would just have to get on with it. I was also told i was imagining the pain. I did a lot of sports from a very young age, i was very fit and in good health but i always had pain and it interferred with my sports. Physiotherapy has played a big part in my life along with osteopaths and chiropractors with varying degrees of help but nothing even remotely close to long term benefit. I was told to stop all exercise, absolutely gutted. Thankfully not recommended anymore.I have been living, dealing and fighting with this pain for 31+ years
I have lumbar/ sacral/ coccyx, neck & shoulder pain daily, hip and elbow are weak and hip feels unstable most of the time(all left sided) My right knee and wrist are also problematic daily. And yeah winter is just torture. I am a nurse, it is becoming increasingly harder to do my job without taking stronger painkillers whilst at work and that is just a major no no. I am injuring really very easily, always have done but it's getting ridiculous. Simple things are causing quite significant injury and recovery is taking longer and longer. I have never seen a specialist yet. My current physio has referred me back to ortho to see if there is anything they can do to help manage my pain and or condition i actually have quite a high pain threshold but its starting to creep outside my range of tolerance and i'm trying so hard not to give in to it.if you do have HMS be prepared for a lifelong pain management system, including lifestyle adjustments. It's progressive not curative.

Everybodies experiences are different, this is just some of mine

Remember not everyone who is hypermobile has the syndrome. The syndrome is hypermobility + pain/symptoms, without any pain your simply hypermobile.


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Post 14

Jimcracker7[magiclink.rip gone altogether. im back.in my home from home.

hi
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ive been disabled from 1994, i have a lower back problem, that if i dont take painkillers in the morning and at night, will give me a constant pain.
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im 62 in a few weeks, the doctor said, in time, the deterition of the bones as i get older, could make it that my lower back wont support me, and a wheelchair will be needed.
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the problem is unoperatable. the back can "crack"as i call t, at anytime, and i have to move and stoop like a man of 80,for hrs or days. i also have the added problem of angina, after two attacks and strokes in the past.
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i havent worked since 1994,
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smiley - dragon jim


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Post 15

ptd142

jim is it hypermobility syndrome you have?


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Post 16

Jimcracker7[magiclink.rip gone altogether. im back.in my home from home.

hi
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i was lurking this morning, and noticed you where on an old thread, its probably died a few years ago. the ones on the thread, you might find have long gone.
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use your online list, and acsess a page, then look for the active threads, and join in.
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if you go to my page, use the nametag in blue, you will find alsorts,ive been around for over 7 years, h2g2 as been about since 1999.
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all personal spaces are open to anyone, mine as pic links, guides and much more. smiley - dragon jim


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Post 17

McKay The Disorganised

Myself, my wife and all our children are hyper mobile to a greater or lesser extent, lately it's become more recognised, though one of our children was mis-diagnosed as having Osgood/Schlatters.

One of our children has had to have an operation to 'fix' her hip, this is a relatively new operation and uses a sort of tripod drill.

I didn't have any pain when younger, and used to pop my shoulder out, and twist my arms into strange positions as a party trick, but lately my knees and hips are starting to struggle, still so far, so average.

smiley - cider


Hypermobility Blog

Post 18

Cara Reay

Hi,

Both myself and my partner have Hypermobility Syndrome. I have set up a blog that provides a central source of information about Hypermobility Syndrome, current news, raising awareness of the condition and fundraising for HMS/EDS associated charities. Please take a look:

http://hypermobilitycampaign.blogspot.com/

I hope that you find my info helpful.

Cara x


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