Hypermobility Syndrome

Gemmy_2

Hello,

I know some of you on here have hypermobility from glimpsing into the disability board.

I'm just asking what your symptons are, how it effects your day to day life and how much pain you are in day to day?

I'm just trying to understand my little brother a little more.

Thank you.

onetomany

hi my son has hypermobility , not sure everyone is the same but i will describe him hes 8 btw bean dignose when hes was 3, he has low muscle tone againg not sure uf this aswell as or part of the condiotion, when its cold he really feels it more so than a advage person, he has to flexible joints wrist etc , his feet turn in so he use to whear splints but now he wears bult up insoles inside his normal shoes. he c
kind of walks arched over iykwim especaily when terid, (he also has a sleep disorder so hes always terid so not sure if its both or hypermobility, low muscle tone or a bit of everything) his pheropist said to me its like when we are hung over we need to make more effert to do things , it takes them twice the effect to do things, he has cordiontion problems to, he finds it hard to do things like use a knife and fork propley, writing at school, he uses a laptop at school and sits on a prosture pack in his chair to help him sit upright, he can do alsorts of things like put his feet behind his head but i thing you have to remeber the long term affect of the way they sit walk etc and the pressure it puts on to hips etc, hes got a major buggy but refusing to use it at mo because kids call him names, i no he suffers alot hes not one to moan as he hates being the centre of attention but some times i pick him up from school and hes in tears because he feels like hes broken his arm etc when i carnt see anything, ive heard that people with hypermobily can be prone to dislcate there joints touch wood this hasnt happened yet , but boy i no hes gonna feel it if he jumps of a wall etc but i think thats more the low muscle tone , like i said this is my son im sure it differs from person to person , there is a hyper mobility syndrome society i will look for a link x

onetomany

http://www.hypermobility.org/

Gemmy_2

Thank you onetomany that was very useful.
My brothers now 15 and was diagonosed with hyper when he was about i suppose 8? We're having tons of problems with him and school. He hasn't been to school for a while and of course certain people have got involved with that.

He is constantly tierd, we don't know if it links up with the hypermobility or not... and contantly in pain,
and for this, he claims he can't go to school.
I know it sounds terrible but its been happening so long and we've been battling with it for so long.... but i/we don't know whether to believe him?

Adaline

Hi Gemmy, sorry to hear about your brother, but great he has a sister who's taking the time to help him out. I was diagnosed with Ehlers Danloss hypermobility type a few years ago when I started getting osteoarthritis in my hips. Thinking back through my life, I can see how the symptoms affected me when I was younger. I did get tired, like your brother, and had bad pain in my joints, particularly wrists and ankles - I had to lie down every evening from when I was about seven because it was so bad. The doctors just kept saying it was 'growing pains', so wasn't diagnosed until it was too late to figure out what to do to delay the arthritis. Many children are being diagnosed with it now, and there are support groups, so hopefully you and family will be able to get all the help you need. Good luck.

elisebutt65

My son is 15, but wasn't diagnosed until a few years back as we couldn't get him to be referred for years!! He literally cries with pain when he's going through a growth spurt and he can barely move, although he has been told to exercise more to strengthen his muscles.
His attendance is only 87% at school as there are days when he can't move his limbs with the pain. He has to use a laptop at school and gets extra time in exams as he can't use pens or pencils; his fingers bend back on themselves if he exerts pressure on them.

I do sometimes make him get up and move around otherwise he'd just lie there all day. He has got a lot better now he cycles everywhere as the muscles get stronger and help the ligaments tighten up. IYSWIM?

I just have to grit my teeth, ignore the tears, and make him move and do his weights as I know he feels better afterwards. I caught him showing off his flexibility to his mates the other day- trying to fold himself into a box!! Physic has told himnot to do that as it exacerbates the symptoms, but he's like any other kid - just has to show off- sigh.

Gemmy_2

Do you know of any UK based family support groups/young peoples support groups or generally support groups?

onetomany

Gemmy wrote: »

Thank you onetomany that was very useful.
My brothers now 15 and was diagonosed with hyper when he was about i suppose 8? We're having tons of problems with him and school. He hasn't been to school for a while and of course certain people have got involved with that.

He is constantly tierd, we don't know if it links up with the hypermobility or not... and contantly in pain,
and for this, he claims he can't go to school.
I know it sounds terrible but its been happening so long and we've been battling with it for so long.... but i/we don't know whether to believe him?

is he struggling with school (i mean paratical things like writing etc corodation? but they are a lot of things that can help eg using a laptop, posture pack to sit on ? my son school give hin occupation theropy 3 times a week , but he likes the theropy we call them excises but hates the posture pack lapptop having to wear trainers for pe ect anything that makes him diffrent from the others, im finding its getting harder as he gets older it is hard, in the winter i have screaming match with my son because he says hes ill everyday and carnt go school, in the summer is on the go so much come teatime hes in pain and kicks of again, 15 is a hard age without problems i think i have a 14 year old and boy is hard the mood swing attiude etc with out have hidden disabilites like your brotheri hope you get it sorted love to u and ur family
ps i wished i had a caring sister like you x

Gemmy_2

Its all since he started secondary school. He had some bullying then since then hes been too tierd, and in pain. Hes had this weird cushion thing (blue, jelly like with rubber spikes on the back?) and a laptop. When i say he hasn't been to school for a while.. i mean litterly once in every couple of months if we're lucky? He hasn't properly been to school since he was 12/13? Everythings been thrown up into the air with social services and now my parents just don't know where to turn. They want to home school him, but are having no luck from anyone they are speaking to.. i guess they need some sort of support line?.. someone to talk too that could help them.

onetomany

agree with the excise thing they got joe to sit with his back against the wall and touch his toes he used to do with ease but now he finds it hard because hes getting older his hamstring as got sronger so they said he needs to make sure he warms up before any excise funny tho as we have always been told his muscles etc need to get stronger now its going the other way

Trialia

I have hypermobility-type Ehlers-Danlos syndrome; hypermobility syndrome's now officially recognised as synonymous with that. I'm 24.

I've been in chronic pain and fatigue, with frequent (now daily) dislocations and partial dislocations for years. I've learned to relocate most of my joints by myself, but it is difficult. I can no longer wash my own (long) hair because I can't hold my arms up for more than 30 seconds at a time, some days I can't get out of bed because my back muscles are in spasm so badly from rib, shoulder and hip subluxations; I can't sit for more than an hour without my hip coming out, nor stand for more than five minutes due to the pain caused by my own (fairly average) weight on my leg joints. My muscles, ligaments and other tissues have microtears from the number of dislocations, and I have secondary fibromyalgia (pain sensitisation disorder) that was set off and is triggered by my hypermobility. My joints are continually getting more unstable and with more secondary side-effects. I also have asthma, dental problems and hair loss due to the collagen weakness.

Not a pretty picture, I'm afraid.