Joint Hyper Mobility Syndrome.

Hi peeps well as ducky requested I am attempting to post an explanation of my condition, lol, so here goes,

joint hyper mobility sydrome is a hereditary condition where all or just some of your joints, are extremely loose and move way beyond what is normal, it can affect, shoulders, elbows, wrists, thumbs, fingers, hips, knees, ankles, toes and even ur spine, it is often overlooked as mine has been for over 28yrs, only just been diagnosed this month.

there is constant pain in most of ur joints, currently on tramadol, co-codamol and gabapentin coctail 2 hourly turnaround, u have good days n bad days, prone to dislocations and injuries continualy. something as simple as lifting a cuppa can dislocate a wrist or shoulder if u for a split second forget how to tense the muscles needed.

U often see kids or people who are extra bendy, or double jointed, they may even have a mild form of it, there are over 5 diferent types and catagories, all at varying levels of severity.

So far I have only suffered countless shoulder and ankle dislocations, a dodgy knee had cartlidge removed from that, and too many sprained and twisted wrists and ankles to count. Main injuries are usually on leading side, in my case left side. I currently managing on long term crutches, molded handles n non slip shock absorber tips, lol spring loaded to keep weight off the bad ankle n knee but do have to use motability scooters etc for out shopping etc as people dont realise that a simple fall for me following being bumped into could mean a dislocated knee, ankle, wrist or shoulder.

since bout age 14yrs this has been going on, and as is often the case it was mistaken for just clumsyness, attention seeking and was even accused of being a hypocondriact by my family and doctors.

Awareness is now growing about the condition, as it is now recognised as a growing problem worldwide, 1 in 10 people have it to a degree but may not know it, difficult to diagnose without tests and a history of injuries etc though as in my case it just wasn't picked up on and mistaken for attention seeking.Sadly this is not an unusual thing, many people who have it end up suffering depression etc as they know something is wrong but no one beleives them. There is no cure it is a progressive degerative condition, all u can do is take pain releif and attend physiotherapy, hydrotherapy, etc

ermmmmm, think thats everything, does that explain it enuf?

lol n hugs from me to all n happy new yr peeps. xxxx

www.ablehere.com/component/option,com_jo...ew/id,15798/catid,47

Re:Need support: hypermobility and carpal instability - 2009/01/03 22:59 hi there it sounds a lot like ur finally getting the help and ur illness finally has a name, ie a doctor knows whats wrong finally, lol, I know what you mean about everyone thinking your faking it, all my family and my doctors were thinking that untill last month and I'm 38. lol. my family still havent come around and are still questioning it, don't want to beleive they were wrong. My story is on the other disabilities section, I have total joint hypermobility syndrome, afecting more than just my wrists, but I too went thru the tests for carpal tunnel, sore huh?
However hypermobility is a genetic heriditary syndrome so if u have it u've had it all ur life and will have it for the rest of ur life.

ur case against the payments thing could b tricky because of it being a life long hereditary illness.
u may have more luck persuing a case against ur ex doctor etc for misdiagnosing u in the first place, thus extending ur pain and suffering and necisating u having to switch doc. Any old joint injuries could also b indications of the syndrome.

lol anyway feel free to chat anytime I know wot ur going thru.

all the best. Kitty

icklekitty
that part about having a fall sounds like the bone decese cant spell it but you know what I mean.. I cant belive just by picking up a cup of tea the wrong way it can injure you It must be awfull hugs ducky xx

Huggles back to you ducky, it getting better now and my Dave is an angle, we have some new gadgets n stuff so I dont feel totally helpless, latest new toy is a one touch can opener, it's fab, I love to cook, obvoiusly having run a restraunt I like to get in there n experement, but the kitchen was a prob, got a perch stool, n kitchen been layed out n stuff in cupboards changed around to make it easy for me, anyone going into my kitchen would be lost nuthings where u'd logically expect, lol, Dave sets up pans n things on the hob for me then I do the rest, chopping veg dave does aswell, n he likes to stay incase I need summat he hasn't thought of, but it is getting easier. bathrooms a big prob need to get the bath ripped out n a walk in shower n grab rails but my OT is on the case, lol

The cuppa thing done that few times not braced n locked my wrist right or over stretched n ended up wearing a cuppa, lol

but hey it getting there n at least now I know whats wrong I'm not just a clumsy, attention seeking hypocondriach it was so liberating when I told the family, but they r still checking up on it,

cant win lol,

huggles Kitty.

your Dave sounds a gem.. am glad you are able to be fairly independent..My hubby is good as gold for doing the heavy stuff he is a retired chef so he gets the food prepared and cooks it.. I cook as well and do house work as long as it is not heavy stuff ..have electric can opener which is a blessing must find a gagate that unscews bottles.. have a bad time with things like that.. I have a walk in shower it is wonderfull as cant use bath.. also kitchen to make me as independent as possible that was in 1993.. home help suppervised all the work.. had to have new shower equipment put in about 3 years ago councel paid for it as it came under the hygene act.. are councel are very good for things like helping peiople to be independent and with house warming scheams hope you get shower soon xx

hi again well it's been one o those days, sore wrist n hands, knee giving me hell, n to cap it all I am startin to stress bout my upcoming tribunal apeal thing, for DLA I got higher rate mobility got the car, but only got base rate care, lol I apealed it last yr and it only coming up on 23rd. not just that got the reveiwe of my claim ie the one I did get runs out in april so gotta start all over again then.

Worked all my life, paid my dues, now I can't even get them to beleive I am Disabled, they sent a snot nosed young man out to asses me who had never heard of Hypermobility Syndrome, so u can guess how the examination went. he was tring to prove my joints werent that loose n couldn't beleive it when I warned him if he pushed my arm much more my shoulder would pop.

Silly little twat,I was laid up for days after and I just know I gotta go thru it all again, it so unfair.

the other thing that really p###ed me off was the attitude that I will get better, the syndrome will just go away, what part of progressive, degenerative, hereditary and incureable did they not get????

Ahh well once more into the fray,

sharpening claws in preparation,

Kitty.

Kitty, I have alwas said that unless it happens to them people have no idea what it is like for a lot of diabled people especaily if you look alrght on the outside
I look as if I have anarexouse when I am sat down or just stand there with my wee stick. it is not untill I start to walk and try to lift and do things that people who dont know me realise there is somthink wrong with me,
can you take an expert with you who knows about your condision and will speak on behalf of you,
they seem to give it to people just on spec who are scammers but when sombody geniune comes a long they throw obsticals in there way
..keep fighting for it and dont give in even tho you feel stressed out dont let them win.I and a lot of members will be rooting for you.. love duckyxx

Hi someone else like me! I'm hypermobile and i'm currently struggling with subluxing hips and cronic back pain as well as clicky wrists and bad knees and ankles! I'm about to start pilate lessons to try and strengthen my core muscles
hope your all well
JO x

hi kitty, thank you for your informative posts. I beleive I have a few joint issues that are sort of like that. MY left hip has been "going out" a lot over the last 5 years. I have a lot of arthritis and degenerative disk disease. Here in the USA I was able to get on disability for my vision loss in 1994. When I started to have join issues I was finely given a power wheelchair. I was so grateful for that. Now there is a new rule that if you can walk in you home they will not fix or give you a new power wheel chair. I know a lot of people who are worse off than me and are not getting their chairs unfortunaly. So it is so rough to get qualified!
I got a donated walker with a seat this week! Yay! So that will help until I can get my own from disability. I got a basic walker in 2009 and I have to wait 5 years total for the new one. ***SIGH***
I pray that you will have more good days and that you will get all your needs met.
~Sherryathome

My daughter has that a doctor said so. But also said too small in how it is nothing to worry about. Nothing to treat. Things don't dislocate just hurt sometimes treat with Tylenol and patience. And she walked a little odd like loose jointed puppet. At the adult daycare she goes to they do gentle exercises before lunch and it has helped. Well thanks , saunter

I have total joint hypermobility syndrome, afecting more than just my wrists, but I too went thru the tests for carpal tunnel, sore huh?


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NOOR

I was diagnosed about a year ago now with hyper mobility. I get pains in my shoulders, wrists, left hip, knees, left ankle, neck and my spine, normal pain killers do not work for me anymore I have to take prescription ones. On the bad days the pain is too bad to get out of bed, on the very rare but good days i may have none to little pain but i always have discomfort of some form. I am the only one in my family with HMS, they don't understand what it is like, as when I was younger I was told by my grandparents to stop complaining so for the most part I keep the pain to myself now. Lately things are getting harder and I feel like I need to talk so someone who understands what I am going through even though every case of HMS is different there are similarities. I have a long list of things/injuries I could talk about and I am happy to, but for now I have to go.
Thank you, for reading.