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?

DD has a diagnosis of EDS. She was referred to the podiatrist, who wanted a second opinion from the physio before he gave her inserts. The hospital physio department refused to see her as she wasn't in pain. They also refused to see her when she was in pain and having to use crutches as she'd sprained her hip. We'd have loved some exercises .

Also my hyper mobility caused problems during pregnancy that nearly caused me to lose my child. Again no one took it seriously.

It does need more recognition

I have EDS. Badly enough to be in a wheelchair at 26. After I was diagnosed, I was discharged by rheumatology as there's "nothing they can do". I'm under cardiology, but I only get seen every 2 years for monitoring as there's "nothing they can do". Gastro won't accept my referral, as there's "no treatment anyway" so I'm left with crippling bowel disorder. I am seen by physio semi regularly, but my joints are so unstable that they're a bit afraid of getting me to do anything but very gentle exercises. Other than that it's nothing. That's it-even though I'm functionally disabled and mainlining heavy duty painkillers. I am waiting for admission to a specialist impatient programme for severe EDS (yes, it exists!) but it's really expensive so I have to exhaust local services first (what local services?). Even then, the NHS is still reluctant to pay as it's "only bendy joints". It's ridiculous.

Sorry to jump on the thread but are painful periods a symptom?

I'm umming and ahhing about pushing for a more definitive diagnosis of my joint problems. They are at the milder end for JHS (which the physio suggested I had about 5 years ago when I woke up with a slipped disc, nothing done to injure, literally woke up in agony) but my knees have been slowly but surely getting really bad (I can't kneel or get back up off the floor). The gp has referred to physio again.

I used to have bendy joints but they are too stiff and painful. I don't know if I have stretchy skin? My dh wants me to ask about EDS because of that article in the daily mail - I have chronic daily migraines and he's desperate to find a reason. I'm not so sure because of what pp have been saying here, what extra help would I get if I did have it? How certain would I be to find a HCP who knew what they were talking about re JHS and EDS?

Experts are moving towards combining JHS and EDS-III as one diagnosis as so many of the symptoms overlap. It's also important to distinguish between benign hypermobility and the syndrome version.

The HMSA website is a good starting point.

I have consultant-led care for my pregnancies because of JHS, which is great, but I know that not all health boards do this.

I have consultant-led care for my pregnancies because of JHS, which is great, but I know that not all health boards do this.

I had that but not for JHS and it's only post birth that they discovered my hips are completely out of line (I've had problems for years) meaning it is near impossible for me to give birth naturally and caused my baby to get distressed. They also kept dismissing my early labour as braxton hicks despite it being known with JHS premature labour can happen.

YANBU.
Hypermobility is bad enough JHMS is something else entirely.

I say this as a parent whose 7 year old DD was dx with it today along with CFS.

The fight I've had with schools asking them to just let her have rest breaks has been unbelievable. Hoping that having the dx might mean her needs get met.

the physio therapist told me and dd who suffers from it that theses children just have to learn to walk through the pain and get on with it. they are not to have any mobility aids. this therefore restricts us as a family as she can only walk so far before it hurts too much.

There's got to be a difference between getting over the fear of moving causing pain, and moving causing you damage?

thanks for the link kiwi

Blackeyed precisely what we were told previously. Until today when we were told its damaging and we need to use specialist paed CFS/JHMS physios.

Really? Surely pain is a warning of damage?

All four times I have given birth it has progressed very very quickly (and painfully). From what I have read that is another hyper mobility feature. I was poo pooed by the midwifes though. "Goodness what a fuss; you'll be hours yet. Oh Er yes you are 10cm after all".

To hear some of the stories on here breaks my heart it really does.

ingenius There's no press ups and sit ups on ds's list are you sure you didn't take your four year old to the local gym? he has to go on all fours and reach out with one arm (which completely wrecks his elbows,wrists,and knees causing a knock on effect with other things), the bridge hopefully progressing to lifting one leg at some point, toe lifts, heel walking because he can not physically do anything else at the moment. I swear he is getting weaker the older.

Grouchy I'm quite sure HMSA are also trying to raise funds so that they can send people into schools to help them better understand the condition but don't quote me on that.

Tinkly my Ds also has flat feet and constant sprains but he doesn't swell like most would he 'puffs' slightly like I do so no one really pays much attention even when he is limping for 3 weeks. Podiatry gave him some insoles which did help but I can't for the life of me get him re-referred. Walking boots have helped a little.

blackeyed My Ds can only last 15 mins walking now and that is on the flat, he is literally hanging off me after that which doesn't help me really. My DH had to carry him upstairs one day and put him into a warm bath because he had overdone it on a school trip one day.

I think it's as shutup says, people confuse it with straight forward joint hyper mobility. And even that most people are clueless about. 'Ooh, so you're double jointed, that's really good for gymnastics/ ballet/ sport'. Excusable in the average person on the street, but very stupid for a hcp.

Also, many hcps don't even notice it. We have a family history of the benign type, and due to being in serious training pre dd I knew an awful lot about how to manage mine, and my limitations. I was the one who informed medical professionals dd also had it, and insisted someone who did have the knowledge gave a dx, incase there were future problems. As it happens, hers is like mine. Plenty of exercise and the effects are negligible. So I don't rate the chances of someone with the syndrome, or even at the difficult end of the benign range getting it easily picked up and receiving expert advice.

Plus many hcps don't even have a clue where the range of difficulty comes in with the benign type. Seems to be a common misconception that the impact is related to the number of joints effected.

DS seems to be managing ok at the moment - I was being flippant with the press-up sit-up comments! Swimming is good and something he's good at and really enjoys - I think the floppy feet work well as flippers! Good shoes/boots make a huge difference - we get the piedro boots with full custom insoles from the hospital, and he moves around much better in them than in other footwear - I make sure that all his footwear apart from wellies has ankle support.

You're making me feel very grateful for all of the help that we get from school and the hospital.

If one more physio says "What a lovely range of motion you have" when I'm clearly subluxating or dislocating a joint moving it, I am going to take my smart crutches and push them (as my lovely Gran used to say) where the sun shineth not

I had my first knee dislocation at 12. I had cartilage "tidying" surgery at 16. I was diagnosed with EDS at 35 - even though my notes throughout my teenage years, when the longest time between seeing orthopaedic surgeons was 6 weeks, said "emwithme is clearly hypermobile".

What annoys me is that medics say EDS/JHMS is rare. It's not. It's woefully under-diagnosed.

Running could you think about going private for the podiatry? You can als buy insoles off the shelf which may help a bit. We have also found walking boots helpful.

My DD finds riding and swimming useful to improve her core and muscle strength without risk of sprains. DS cycles a lot and does lots of press-ups etc. He is less affected though.

OP I have a couple of friends who suffer from this. There's a support group on Facebook, and if you don't do facebook, I'm sure you can find it. I can't think of the name of it right now and can't do a link as I have a new tablet and having ttrouble finding my way round it. It's called POTS/fibrimiology support (sorry for spelling mistakes) I honestly can't find my way around the keyboard I am using right now. However I guess there must be forums.

OP I have a couple of friends who suffer from this. There's a support group on Facebook, and if you don't do facebook, I'm sure you can find it. I can't think of the name of it right now and can't do a link as I have a new tablet and having ttrouble finding my way round it. It's called POTS/fibrymiology support (sorry for spelling mistakes) I honestly can't find my way around this keyboard.

It's about bringing attention to it and around our friend network it's working. Would you like me to try and find the links or are you acquainted with this group?

I so hope I haven't been insensitive in any way.

^ see what I mean re keyboard? grrr

Yup. My mum has spent her life falling over, overbalancing and being called clumsy. Prolapses, ruptures, sublux and fragile major organs are well known in this family. I have been in and out of clinics for ever, high risk pregnancy, pain all the time, massively knackered. And now my brave dd suffers too. At least her school are pro active, and she has lots of different measures in place to help her.
I hate EDS, and I hate the fact that it's invisible and everyone thinks we're all making a fuss or being lazy. So shit.

This thread has made me cry! I am sure I am suffering with some sort of joint hypermobility.

There is a big family history of arthritis for which I was checked for in my early teens but nothing came back in bloods etc. My mum was told to get me back to school as there was nothing wrong with me.

I was a keen self taught gymnast in junior school, parents couldn't afford classes so made do with playing fields instead. Was very supple and flexible until I hit earlyish puberty then my joints started to do strange things. Wrists not holding my weight for handstands/cartwheels and was getting lower back pain doing a bridge. Painful periods as a teen resulted in vomitting episodes each TOM so was out on contraceptive pill to control this. Had to be collected from school once after PE teacher ignored my mums instructions that athletics was off the cards in secondary school as running would result in days being bed ridden due to joint pain. I collapsed whilst trying to attempt 200m, PE teacher ended up being in trouble for ignoring my mums instruction which resulted in a week off school, bedridden on painkillers!

I am now 36, 2 kids down the line and I feel knackered. First pregnancy was hell, everything hurt all of the time, blood pressure all over the place. Second pregnancy resulting in physio and visit to a chiropractor as at 5 months my hip and knee joint on right leg gave up, treatment got me through the following 2 months but had to go on mat leave early as elements of my job were physical and I couldn't go on.

Just last week MRI scan on right ankle due to an unexplained injury back in April. Ankle is better after physio but still not right.

Current consultant told me to lose some weight and exercise when I can. Told her the symptoms are no worse or better with weight loss as I have suffered the same as a 9 and a half stone adult and yes granted I am heavier now but I don't understand how weight is related to the pain I feel in finger/wrist joints or my neck.

She didn't seem convinced I had a real problem as pain moves from joint to joint so never one specific area for long. Finger joints have also starting popping leaving blood pools under the skin making it impossible to bend fingers until bruising as gone - was told this was normal?! Er no not for me it isn't - 6 episodes of this in last two years it it has never happened before that.

Have recently started getting odd cysts under skin too on toe joints, hurt like hell.

And today I went for a blood test for diabetes as they can't think of anything else to check if MRI fm doesn't show anything?!

I have lived with this most of my life, complained very little but would actually like a proper diagnosis for validation that I am not making this up. I would also like a diagnosis so that I have something to work with as I would actually like to be able to help myself. Plus DS is also showing signs of being similar - his hand and wrists are mirror images of mine, fingers bending at odd angles and wrist don't seem to sit right. I would like to know what I am up against for him too.

Sorry if this makes no sense, is a bit ranty?! I am extremely emotional about my problems right now due to lack of concern/care/diagnosis from those who should be able to answer my questions as to why I am like this! Sorry for typos, usual crap predictive text on phone and writing in a rush due to battery close to dying.

What is the difference between hypermobility and JHMS then?

I'm not sure what I have. I have unstable joints that sublux, but only some joints, and only some of the time. I have a history of knee dislocations and had keyhole surgery to stabilise them. I have instability in my sacro illiac joints that causes me a lot of problems. I don't pass the standard diagnostic tests as I have normal ranges of motion in the joints used in the assessment (I can't bend my thumb back, for example).

A physio told me they consider me to be hypermobile because I'm symptomatic with dislocations and subluxing, but am I right to describe myself as hypermobile?

em a physio said to me "you have hyper mobile joints" but never explained what it was, no follow up was ever done. It was only years later when I had loads of other problems I realised it was connected.

How did you get disgnosed? I'm pushing for it but I'm not getting anywhere, it's frustrating

a variation of normal apparently hmm

I have it. So does DD1, who has frequent subluxation of her upper limbs.

In truth, OP, I have always treated it as 'a variation of normal', as that's what it is to me.

In the wider world, some of heard of it, one haven't. As with everything, some medical professionals, and indeed, some people are better at dealing with it than others.

Much about hyper mobility and associated conditions isn't fully understood. It's apparently not terribly common, yet loads of people seem to have it to a greater or lesser extent. I'm more of a just crack on type I think.