To be annoyed that Joint Hypermobility Syndrome is overlooked?

(78 Posts)
runningouttaideas Thu 28-Jan-16 13:53:50

We have a history of the above in our family which varies in severity but still has a negative impact on life all the same, it always seems to be treated as nothing....a variation of normal apparently hmm

AIBU to be getting more and more pissed off every time it gets swept under the carpet by schools, professionals and employers?

araiba Thu 28-Jan-16 13:55:39

i have never heard of it

make of that what you will

it sounds like the opposite of arthritis

Titsalinabumsquash Thu 28-Jan-16 13:58:19

I have severe hyper mobility syndrome. A life of pain isn't fun but you're right it does get brushed aside as a non factor with everything.

My rheumatologist is fantastic luckily and had sat and cried along side me because there is so little you can do to help.
It's known as dancers disease.

Gobbolino6 Thu 28-Jan-16 13:58:38

YANBU. A close friend has known her son had some kind of issue since he was six weeks old. Several GPs in more than one practice disagreed with her. They moved to New Zealand and school raised it with her in the first week and he had a diagnosis and physio sorted within a month.

x2boys Thu 28-Jan-16 14:03:52

I have heard of it but only because I have son with a rare genetic condition and whilst he doesn't have many children with his or similar conditions do yanbu.

hiddenhome2 Thu 28-Jan-16 14:04:30

Yes, it is a problem.

I have this and it's horrible. My right ankle and knee are particularly affected and I have to wear an ankle support all the time and can only manage to walk on flattish surfaces. I like visiting the countryside, but can't manage to do many walks.

I've sustained several injuries over the years. They take ages to heal. I'm also very weak and have no strength in my limbs or hands. I'm often clumsy and fall over too blush

Nobody seems bothered, you just have to get on with it.

PizzaConnoisseur Thu 28-Jan-16 14:05:41

I think there are a million and one conditions which are overlooked. My daughter has a life-long condition called lymphatic malformation, a condition which 90% of doctors I have come across have never even heard of. I know more about it than most health professionals, it's sad...but one of those things. People can't be specialists on everything can they...

hiddenhome2 Thu 28-Jan-16 14:15:06

Oh, well. That's the end of that then.

runningouttaideas Thu 28-Jan-16 14:16:43

Sorry to hear about others difficulties. No pizza your right but they could listen to the ones who have the most experience...the people who live with it every day. Instead of rolling eyes and moving swiftly on to moan about what isn't being done good enough BECAUSE they have the JHS like its nothing.

AliceInUnderpants Thu 28-Jan-16 14:18:00

What are you expecting people to do though?

TheCatsMeow Thu 28-Jan-16 14:18:41

YANBU. I have this and it's caused me endless problems, I'm currently trying to push them to investigate EDS and keep getting sent away.

I keep having subluxations while picking up my baby and no one cares

GrouchyKiwi Thu 28-Jan-16 14:19:32

I think, though, that one of the bigger issues is that it's not a tiny minority that suffer from it. It's surprisingly common, just with a wide spectrum of effect.

Compared with some people, my JHS is fairly mild. But I still have trouble with tiredness, my shoulders sublux since DC2 arrived, and walking any distance is extremely difficult. I manage to get out of the house with the children maybe once a week, and that's not good for them.

I wasn't diagnosed till I was 28, but have had trouble with my joints my whole life. Thankfully, HCPs are starting to know more about it now, but it's a long road.

flowers For all those with hidden/misunderstood conditions.

ingeniousidiot Thu 28-Jan-16 14:31:09

But what exactly do you want?

Loads of people have it to varying extents and just crack on and get on with life. There's not really a lot that can be done - are you doing all of the physio that has been recommended to strengthen your joints? Keeping active and keeping your weight down?

You can make yourself a big badge if you think it needs more recognition, or do bendy joint displays in your local shopping centre, that should raise awareness.

TheCatsMeow Thu 28-Jan-16 14:35:26

idiot well more awareness from doctors would be nice, as well as the ability to piece together why someone constantly faints, has low BP, multiple sprains, breaks, recurrent tendinitis, is tired all the time, has constant pain, constantly falls over, has no coordination, IBS, painful periods and other nice symptoms instead of fobbing me off with paracetamol each time.

runningouttaideas Thu 28-Jan-16 14:36:36

I would like professionals to acknowledge it Alice instead of giving a list of exercises and telling you I'm afraid you will struggle with the pain all your life and then the osteoarthritis pain will take over instead (yes this is what my 10 year old was recently told by his pediatrician).

I would like schools to see that Dc aren't going to be able to sit still and write beautifully every single lesson because it bloody hurts, they will avoid PE constantly because they can't do what comes naturally to most because it is tiring and bloody hurts. To realise that it doesn't just affect what they are doing at that moment it will continue into the night and several days later.

imnotalpharius Thu 28-Jan-16 14:37:31

Do a lot of people have joint hypermobility syndrome? I know it is a big part of other conditions like EDS and I have osteogenesis imperfecta (brittle bones disease) and part of that is hypermobility. Most people I knew with JHMS have now been diagnosed with EDS. It doesn't change the pain they have but I think people see it as more 'real' and less of a party trick.

TheCatsMeow Thu 28-Jan-16 14:39:42

running yep. I used to cry in PE because it caused agonising pain and got told I was being precious. I subluxed and had to go home in a wheelchair because the arsehole PE teacher hadn't let me sit out

runningouttaideas Thu 28-Jan-16 14:43:48

ingenius my Dc and Dn are constantly told they are not trying hard enough for reasons they can not control, when they are giving it 100%. I would very much like my family NOT to have their soul destroyed by the time they leave school.

Hear hear Thecats

shutupandshop Thu 28-Jan-16 14:44:44

I think people get joint hypermobility and jhs mixed up.

TheCatsMeow Thu 28-Jan-16 14:45:38

running it's frustrating when people just write you off as an oaf who's oversensitive

Eeyore86 Thu 28-Jan-16 14:53:08

I get where your coming from OP

I have EDS (only diagnosed 2 years ago) and have suffered for as long as I can remember with my joints, I've been left now with a permanent disability which may have been able to have been avoided if I'd had the diagnosis to begin with. The chronic pain is terrible but nothing compared to comments from other people.

It's a totally invisible disease and people mostly think that your either some kind of freak (bendy joint displays etc) or that your making it up, that goes for medical staff too. There needs to be much more awareness of the condition for doctors I've lost count of how many hospital admissions I've had where I've had to explain what EDS is and how it impacts, when your in hospital awaiting treatment that's the last thing you need, there can also be complications for surgery with EDS as well.

Young people get such a hard time when they have this condition (see above in relation to PE etc) and the abuse younger people in wheelchairs can get can be utterly soul destroying

Gobbolino6 Thu 28-Jan-16 14:58:26

I think it's unreasonable to say 'well what can they do', when one of the major problems is diagnosis in the first place. There are SOME things to be done once you are diagnosed, and it's not particularly pleasant I imagine to have the HV saying your child's development is just delayed, that you maybe don't do enough active stuff with them etc. Then the school saying your child isn't meeting targets and the GP saying he's absolutely fine...when it's been blatantly obvious since birth that something isn't right.

BlueJug Thu 28-Jan-16 15:01:50

YANBU but there are many conditions that blight people's lives and unless you have direct experience it is not something that you would know about or understand, let alone make allowances for.

I have one and have not only suffered but been misunderstood. It is very hard- but not going to derail thread. flowers for your dc OP

runningouttaideas Thu 28-Jan-16 15:02:28

imnot my Ds has similar to what Thecats has typed up thread minus the period pains smile. DS has several reports and each person says different Joint hypermobility syndrome, Benign Joint hypermobility, Joint Hypermobility and hypermobility. At school he is simply a little bit bendier because he is hypermobile and lazy.

I have suffered through the years and yes I have gotten on with it, popping the paracetamol almost daily, but I have also dropped to the depths of despair because I have sat watching people doing things and I have thought I am a waster because I assumed they were the same as me and I was just useless. My Dc have been diagnosed, I expect that to help them not be overlooked.

ingeniousidiot Thu 28-Jan-16 15:03:08

But running do you not find the list of exercises to be amazing? - it's the best thing I ever did getting a four yr old to do the full set of sit-ups, press-ups etc etc to improve general core strength.

Your school sounds a bit crap though tbh - one of the teachers found my ds a special pen to help him write, and he gets encouragement in everything he does - and he does everything, even stuff on the 'banned' list - if he doesn't do rugby and ice skate and everything else now, he might not get the chance when he's older.

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