To be annoyed that Joint Hypermobility Syndrome is overlooked?

[runningouttaideas]

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

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

I was only diagnosed after having my first child. It would have been nice if the sonographer had said I should get checked out when I nearly leapt off the bed in pain in my 20wk scan when she was prodding my pelvis. My pelvis was all over the place, severe SPD, ended up bed ridden and in a wheelchair, and it took a long time to improve after pregnancy. Because of the ongoing problems, I saw a specialist, who diagnosed hypermobilty. I am not sure whether the syndrome or not. It was a relief to find this out in a way, as many things started to add up. I thought everyone's finger joints went backwards as well as forwards. .
Still, had a second child. Lots of osteopathy, as I knew what was going on. Less time in a wheelchair this time.
I kind of live with it, drop heavy books when my fingers can't hold them and struggle with certain things. My pelvis is still a mess, especially my sacro iliac joint, and I cannot sit down without pain. Coccyx crunches etc.
I broke my elbow last year. I think it has recovered to the point of 'normal' but I find it very restricting!

Re diagnosis. Push your GP for referral to a rheumatologist and don't take no for an answer. They're best placed to make the diagnosis. And, once you're there, make sure you get some advice about how to manage your condition. The rheumatologist I saw basically told me I had it and left the room. The receptionist got him to talk with me at the end of his shift as I was a mess because having an answer didn't sort anything for me, and he was pretty good then. I got referred to physio and he sent a letter to my GP outlining some aspects of the condition. I wonder if this is why it was properly in the system for midwife care with my pregnancies.

For day to day life the HMSA and other associations have great advice and I've found them invaluable.

It's hard to advocate for yourself or your child to get that diagnosis but I think it's definitely worth it.

firstwe I am the same in regards to getting on with it but when I found that the strategies which I have always used just weren't helping DS I needed to involve others but they just told me to pretty much do what I had already used so not much help at all really.

catsize my DS has fractured his elbow in 2 places from tripping over onto grass, I was cross examined at the hospital because they couldn't see how he managed to do it the way he said he did.

molly You have one of the major criteria and 2 of the minor criteria if I have read your post correctly, the beighten score isn't always used.

I agree.
I suppose people don't really understand it unless they have it.
It is a lot more serious than it sounds. Look at a list of how it affects the body, it affects virtually every part.
I have it and I've dislocated many parts of my body.
Stress incontinence. I first noticed it when I was about 11 running at school would make me wet myself.
Pelvis organ prolapse. Realised wasn't normal at age 15. Fun.
Postural orthostatic tachycardia syndrome - faint standing too long.
Chronic fatigue.
Constipation.

I have EDS along with ds2 and dd2. Yanbu.

I have EDS, POTS and MCAS - does anyone have that last little gem? All three can go together. MCAS is mast cell disorder and for me, it means I am allergic to the world. I eat a limited diet, and because I produce too much histamine life is very unpredictable as I can go into anaphylaxis to almost anything.

The EDS part is horrible - I feel like I have 'flu every day - that achey, heavy feeling in your joints. I can sublux rolling over in bed, and do.

But the icing on the cake is, as OP says, no one has heard of it, GPs pooh pooh it, as do some rheumatologists - there is just zero support, understanding and awareness.

There are so many different health problems, people cannot be expected to know them all. but once you raise the issue, for example at school, they should listen and provide a suitable environment.
I dont expect everyone to know about my health issue which is a good job, as many nurses cannot even understand how it affects me.
I dont think they are being unreasonable until they refuse to listen or make suitable allowances.

Here is what I've spoken about above:

www.facebook.com/groups/474119156078209/

well. this thread suddenly explains a lot!
my dd is 12 and has always been insanely bendy, particularly her back and legs. she does gymnastics but has always had issues with pain in her feet. i took her to the GP who said she was very flexible in her ankles and she needed supports. that was it.
I think we need a trip back. :s

Dd was diagnosed a few years ago after numerous trips to Gp's who kept just saying things like 'she's just clumsy/unlucky' in ref to the constant sprains and repeated small joint dislocations. Finally saw a gp who listened (but also I was determined we weren't leaving without something being done). She'd already had tests for different kinds of arthritis etc all negative.

Then had battles with pe teacher at school for 3 years as she insisted dd was to push herself to improve her ability and stamina EVEN THOUGH she had been told this was AGAINST specialist medical advice!

I finally took a photo of dd's knees and ankles badly swollen day after pe and showed to teacher. That stopped.

Have repeatedly had to explain to hcps that dd is not 'just bendy' that HMS affects all muscular structure including the heart (hence tiredness) and other organs.

I don't expect all hcps to be experts I do expect them not to assume and to listen and not be dismissive when we explain!

vander I feel for you, I think that is what bothers me the most tbh the younger children and what they are up against.

power you have a very tough time. I have never heard of MCAS but now I shall look because I would like to know. After all how long does it take to use the WWW?

Monty Thanks I was having a few problems posting last night from my phone..I can't hold the bloody thing very long! I will have a look on facebook shortly.

Bacon I don't expect all hcps to be experts I do expect them not to assume and to listen and not be dismissive when we explain! my point exactly. Unfortunately my DS's symptoms were masked when he was a baby because I was already using a physio regime without even knowing it (didn't realise this until DN was born 6 years later and DSister had to do what I had done). This doesn't help really because everything wasn't on file from the beginning other than his slow feeding. Which was just that slow feeding. Oh and he had 2 hernias down below in the space of 10 months.

My dh, dd and Ds have it. Older Ds also has it mildly. And pots too. Dh uses an electric because of both. Dd just started using crutches when she's really hurting. I fear she'll end up in a wheelchair before she's 20 at this rate, dh wasn't as bad as she is until early twenties, then wheelchair late twenties (we had dc young, before we knew about the pain from it... Sometimes I'm glad, sometimes feel guilty, but we knew nothing about connective tissue disorders then!)

The school are bloody hard work about listening.

Whenever we say hypermobilty syndrome, people dismiss it as nothing. I've started mentioning it's also called EDS.

YANBU but I expect most people feel that way about their lesser known condition.

I have 2 friends with diagnosed EDS. They seem to have found the most helpful thing so far is Pilates as its careful exercise that strengthens core muscles, since its actually the muscles trying to hold things in place that arent being held by the connective tissue.

EDS also tends to mean that you produce buckets of adrenaline because you constantly feel on alert and that you might need to catch yourself, so have to be careful when doing sports because EDS people will fight through the pain and push themselves far more than they should due to the adrenaline GOGOGO all the time. It can also cause seriously disturbed sleep, my friend has just come back from a 2 week residency programme in Bath and been told even listening to music or audiobooks pre-sleep is too stimulating.

I have EDS as does dh and our four dcs and a range of associated conditions (pots, pectins excavatum and scoliosis) as well as other conditions they got through sheer bad luck

People don't understand. People judge and will say "oh but they look ok" . Doctors don't often understand and it's frustrating

*pectus

running if t's affecting your DC at school, so much, then you need to ask for an occupational therapy evaluation. They will look at posture, activity, pen holding, classroom layout etc and make recommendations for ways of making life easier. If you can afford a private one, then do that, as it's a good investment.

I also found that a private OT made a lot of real world suggestions for things to help DS1, rather than things that have "therapeutic" written all over them. So things like nice (and inexpensive) bistro cutlery, rather than ugly, expensive and badly made "caring cutlery".

The boys are both hypermobile and have inherited it off me. I was only diagnosed when one of my thumbs locked up, a few years ago.

Yes yes yes!!!

It affects the body in so many ways: one DC needs special glasses because their eyes don't focus equally- apparantly eyeballs can be hypermobile too; Another DC has had chronic abdo pain- apparantly hypermobile people have "messed up pain pathways" and more hyper vigilant nervous systems (according to a pain specialist doctor)

Two of my DC have very distinct mouth shapes too- very narrow palates and jaws and crowded teeth. It is making it difficult for their adult teeth, I'm sure it's linked in some way. They are going to be expensive!

Broken bones

Some sensory processing issues

All the OT and speech they've had.

Difficulty sitting still, concentrating, fine motor skills. It's so hard to hold a pencil when your thumb and pointer finger joint collapses on itself.

What I'm confused about though is they say EDS is very rare (have been told 1dc fits the criteria)... But it seems like so many people have it... Is it becoming more common, or just more diagnosed?.

I really feel though my DC are just passing under the radar and no one really seems to care.

There's more than one type of EDS. Classical EDS (types I and II) are rare, so it may be that your DC has that.

EDS-HM or EDS-III (the hypermobility type) is more common, and might be the same as JHS.

Yanbu.

I've had a terrible time. Due to my dx my friend managed to get her daughter looked at by our OT (school) and was dx with it too.

(Sorry, don't want to seem like a know-it-all, but I've done a lot of reading up about EDS and JHS since my diagnosis. )

My left eye is hypermobile! I can let it float off in an eerie way....

There are many different sorts though, my pilates teacher asked if I'd ever broken a bone - nope. I seem to wobble and bounce like the shatter proof ruler. (Off horses for example)

(She said I bet you've never broken a bone)

Gosh stormtreader, that really helps explain me. I do push through to the limit except I've been busting myself recently.

Always found beta blockers really helpful - probably due to this. (Sadly looks like I can't take them any more due to possible slight asthma)