Hypermobility Syndrome

Gemmy_2

Trialia thank you for being so honest. Clearly there may well be something there with him then. You've given me some hope.

cally6008

Gemmy - nip on the HMS forum, a wealth of knowledge and help and it has local support groups as well. It would help your brother as well to know he's not alone, there are other boys/lads that suffer like he does.

I'm another HMS sufferer and I also have Fibro and IBS. Having a flare up at the moment, feel absolutely wrecked big time and leg muscles are burning up and so sore.

What area are you in ?

onetomany

cally6008 wrote: »

Gemmy - nip on the HMS forum, a wealth of knowledge and help and it has local support groups as well. It would help your brother as well to know he's not alone, there are other boys/lads that suffer like he does.

I'm another HMS sufferer and I also have Fibro and IBS. Having a flare up at the moment, feel absolutely wrecked big time and leg muscles are burning up and so sore.

What area are you in ?

where do we find that please?

cally6008

onetomany wrote: »

where do we find that please?

http://www.hypermobility.org/forum/


Some sections locked to non-members.

formaldehyde_perfume

I wish my family would take my condition as seriously as you do with your brother, Gemmy. Other than my mum (who is extra extra supportive which kinda makes up for it) I am disbelieved or they think i'm exaggerating.. Funnily enough my dad is all for taking my blue badge with us in his humongous car because of the extra wide spacing, even though he believes I shouldn't have one.

Exercise is important but it's not how fast you do things, it should be about controlled muscle contractions which works them gently yet strengthens. I have been advised that slow, controlled weight lifting is something that should be done daily, I do it with a tin of beans!

I agree, there is a lot of useful advice and people to talk to on the hypermobility website, it's a great place to ask those sorts of questions as it's very likely that someone will have had a similar situation to yours.

It is very important that children are educated, disability shouldn't be a reason not to learn. I have no personal experience of home schooling but I do know that there are communities on the Internet that could help your parents cut through the red tape, although I am a bit lost as to where to find them and I think different things apply in different educational areas. Whilst that is being organised I think he should be encouraged to do something productive with his day, even if it is something small like reading one chapter of a book, or perhaps watching an educational and informative DVD. Also, you have said he is 15, by that age he should be having significant input in to his daily life so these things should be a conversation rather than a demand, otherwise I guarantee a 'Kevin' response!

I hope things pick up for your family

Trialia

Gemmy wrote: »

Trialia thank you for being so honest. Clearly there may well be something there with him then. You've given me some hope.

Glad to hear it, about the hope anyway.

Hypermobility syndrome is not a fun thing to have to deal with, but it is real. Imagine the pain that comes from dislocating a joint, if you've ever done it, then imagine having to deal with that every day, at the least little movement, and you'll have some idea. The pain isn't any less because it happens so often, we just get used to dealing with it and try not to react to it. Generally. The circle of pain is also very, very tiring.

SingleSue

My eldest son was diagnosed with hypermobility about this time last year at the age of 16, this then turned into an EDS diagnosis in May this year.

He has had pain in his joints for years but every time I took him to the doctors or hospital (with what we now know to be partial dislocation pain), they just palmed us off with the old 'growing pains' excuse. Finally he reached a point last September, where it just couldn't ignored anymore as his shoulders were dislocating, hips were dislocating and he could spin his knee caps right the way round, amongst other weird and wonderful things he could do with his joints.

He also has extremely stretchy skin, a heart murmur, dental crowding, can't keep warm, gets extreme tiredness, dizziness, chest pains and struggles to keep weight on....they originally thought he had Marfans as he ticked a lot of the boxes but they finally discounted it.

We have struggled at times with school, some teachers not understanding it or letters being lost, which has caused some stress at times but it has not impacted on his education...on the real pain days, he takes painkillers and I drive him there, once there, he is then allowed to stay in one room instead of moving about too much and if he does need to go upstairs in the school, he is allowed to use the lift. We even got the school's agreement for him to have energy drinks when he did his GCSE's, which helped him enormously as otherwise, his energy levels drop alarmingly.

Youngest son has had the HMS tag since a toddler, mainly in his ankles which meant he was a very late walker (with the aid of splints, pedro boots and physio), he still cannot walk very far before he has a lot of pain. As he is getting older, the signs we have seen in eldest son are becoming more apparent in youngest son with the added feature of jaw dislocation (his very annoying new trick).

Middle son is not as hypermobile but his fingers and wrists are very mobile and dislocate at the drop of a hat, he also bruises easily and because of this, they think it is very likely he also has EDS.

As for me? I have always been extremely hypermobile with pain from primary school but never thought anything of it....people just called it being double jointed and nothing to worry about. My first slipped disc was in my early teens, by my late teens, I was having traction on my spine, had been on crutches umpteem times due to partial dislocations of my knees and it has carried on as I have got older.

I am now 40 and at the beggining of the summer, I finally gave in and started to use crutches (physio had been trying to persuade me for some time) and I am now reliant on them for going out and at times when things are really bad, for moving around the house. I still don't have a medical tag (apart from an arthritic spine, wrist, fingers, feet and hips in the main), although it seems to be accepted that I have HMS and possibly EDS but an official diagnosis has never been given.

I refuse to be beaten though....it hasn't really stopped me doing anything in my life, I was a dancer and really pushed my body beyond its limits, I worked horrendously long hours and even when I did dislocate/tear things, would go to the hospital, get the crutches and bandages and then go straight to work without even going home first.

cara09

Hi, I have Hypermobility Syndrome too as does my partner which just happens to be a conincidence! At least it means that we understand each other's condition. I have been busy recently updating and redesigning my blog to raise awareness of Hypermobility Syndrome and promote fundraising. I also post all the up to date news I can find on the net. You can take a look at: http://hypermobilitycampaign.blogspot.com/ I am happy to hear people's comments about the site to see if I can make any improvements.

Also I thought I should mention that there is a HMS Group meeting being held in Bristol next Saturday so please let me know if you are interested in coming along.

munchings-n-crunchings

Part of the problem will be that your brother has got into a cycle of non attendance.
On the odd time he may return to school, he'll get loads of questions about where he's been and why he's not at school, and to avoid this, he'll just not attend again.
Try and find out from your brother if there are additional problems and issues, and if there is anything to help his return.

At 15, my son was a non attender, and any help I found, it was instigated by myself. I contacted Social Services, and the Education Welfare Officer, and drew a total blank for help.

Try speaking to Connexions. I found them fantastic for practical help and support.
As my son wasn't legally old enough to leave school, and there was no way he would return (He's high functioning autism) Connexions found a place for him on an E2E scheme, for teenagers 14+ that where an alternative form of education was more suitable.
It was the best thing that could have happened. He was willing to attend, and it broke the downward spiral he was in.

Good luck with resolving things,

Munchie

shays_mum

GOSH refused to diagnose dd as there is apparantly no genetic test for HEDS3!!, also they are moving away from giving kids'' labels & not treating EDS3 as a disability/disease now hummmmm, don't know what to make of that.....
She is now missing time of school to be treated for occupational therapy/physio (at GOSH) as its the only specialty hospital for treating kids with something that they don't have apparently have!. :wall::huh::undecided. Has anybody else had any problems with diagnosis?