Hypermobile

[Hypermedi]

My daughter has been to the walk in today as she hurt her knee yesterday

They said she has hypermobile knees and the tendons/ligaments (I'm not sure what she said as I wasn't there) behind the knee are not supporting them and she needs lots of physio. They've referred her to physio anyway but she already has a physio appointment on 8th Nov anyway as I'd been through the GP a while ago about her knees occasionally 'giving out' but no pain.

The doctor said she has a long road ahead and needs lots of physio and possibly other intervention? The doctor was able to completely move and dislocate her knees without my child even flinching apparently. I was looking after our other child so she was with her dad for the appointment so I feel a bit under informed. Does anyone have any experience of hypermobility to this degree and what we can expect? She's 7.

If you were to push me for an AIBU I'd say her dad is quite chilled about it all but I'm really concerned - she's not allowed to do anything but very small amounts of walking (no sports/park/soft play etc) for at least 6 weeks. AIBU to be concerned?

As an incredibly hypermobile person I wish wish wish I had started and kept up intensive physio when I was younger - having incredibly strong joints would almost certainly have prevented the four very painful and serious joint injuries I’ve had, which all required surgery to fix.

My 2 hypermobile kids have needed physio many times throughout their lives as they are prone to injury and pain. People with hypermobility need to strengthen their muscles to help support their joints, seeing as their ligaments are not capable of being supportive on their own.

I'd be warning against party tricks too. At uni I used to slip my hips out and walk forwards with my feet backwards......pretty much need new hips now but I'm too young yet.

I wish I'd known earlier to keep a very strong core, good posture and work to normal range not go showing off in yoga classes.

I'm currently doing a lot of swimming, very patient pilates and trying to keep my hips and right shoulder in place....so no mad things like rolling over in bed or waving too hard. But I fully did this to myself by not thinking that party tricks would have repercussions

My DS is hypermobile and I don't let him do any tricks .... though he does keep showing off his elastic skin and pulling out his jowls ..... I'm hoping the extra collagen will stop him looking like Churchill in his early 40s lol

I'd be warning against party tricks too.

Yes! I was easily persuaded at uni to put my legs around my neck (something I can still do, but it’s unseemly at 52 when everyone has a smart phone 😬).

I'm hypermobile and never had physio. I do get joint pain and have done for some years now but it's not debilitating and ibuprofen helps.
Yes some people are affected badly but certainly not everyone.

You would expect one parent at least to also have hypermobility? Does her dad have hypermobility? Family members?

I'm hypermobile. I saw countless doctors and physios as a child but back then no one picked up on it. One GP almost touched upon it but was dismissed by my mother. So consider yourself lucky that she is diagnosed now. It's a lifetime condition, she'll probably find it worsens during hormone surges (puberty, various times in her cycle, pregnancy etc). Arm yourself with as much info to help through life, but keeping muscles strong is key. Pilates is excellent exercise, but physio led so she doesn't hyperextend.

My dd is 12 and was diagnosed with hyper mobility issues when she was 7. She has weekly physio and does exercises at home. She recently joined the hospital gym programme and is enjoying it. She pops her knees back in on her own when they fall out with no drama. just needs to rest and stop for 5 mins in school. She has a very full life and she cycles everywhere. It is very common. We just manage it and live with it .

Yes her dad has it (only discovered as the doctor asked whilst he was in the room could he do XYZ and he could) he's suffered with joint issues his whole life and is only 40.

Thank you this is encouraging. Do you claim DLA etc for her?

The fact that she has injured herself and will need to heel, combined with wanting to investigate the extent of her hypermobility will both be factors in wanting her to rest.

My knees have historically hyperextended but never that severely. I'm getting on a bit, now, and everything that moved too much is locking up, instead. Bits that shouldn't mover, OTOH... [clicks collarbone]

He would benefit from referral and targeted physio. Same as dc
For adult Call local nhs musculoskeletal physio service. In our area there is funded 12 week Nuffield joint pain management programme and individual and small group physio led gym sessions . Myself and dc hypermobile. Now I am facing total knee replacements.

I think you can self refer https://www.nuffieldhealth.com/about-us/our-impact/healthy-life/joint-pain-programme

YANBU to be concerned. Find out as much as possible about your child's diagnosis- eg are other joints impacted?

My daughter has this. A number of different joints. So we have had to find work arounds. I would advise that if it impacts her fingers / hands that you get a formal diagnosis in case she needs to use a laptop at school.

Thank you I talked to him about this last night and he's going to look into it.

Thanks when we have physio next week I'm going to really drill down with them about all this, I just hope the physio is a good one.

Absolutely not. I wouldn;t dream of it.

Why do you say it like that? Genuine question. I am thinking it would pay for extra hydrotherapy etc as the doc mentioned.

My daughter is hyper mobile with Eds she benefitted from hydrotherapy and exercise at home to build her muscles and strength up. It's made a huge amount of difference in her ability to not be I. Pain after an hour walking. Her joints are either too loose in the summer or lock up when it's cold and pain killers don't help.

Sorry if it sounded harsh. The reason I wouldn't do that is purely its my child,with a relatively common condition that although annoying and painful at times and very inconvenient at times it doesn;t stop her more than temporarily living a full life. She goes to school and has a fantastic social life and although I am very greatful for the support of physio's and school (especially the PE dept) I do not consider it to be anyone's problem but ours. I know I sound a right cow but I feel really stongly on this that DLA and the taxes people have to pay to enable this benefit to exist, should be saved and spent for people who have severe constraints on their lives with life limiting conditions or people who really need constant support. Swimming will do the same as hydrotherapy I am sure if you ask the physio's. Our local hospital has a hydrotherapy suite and its available to anyone who the dept thinks would benefit from it as part of their treatment programme for free. This condition can be managed,yes it will be different for every patient and its tough going but that doesn;t mean there should be a financial element to handle it. My daughter has Severe hypermobility,Severs disease and Osgoods schlaters disease all bundled together! Shes off to school on monday and will pop her knees back in when they fall out!!! Sorry if I sound a preachy cow , if she has to have an op when she is older she will and she will just have to carry on ! Apparently 1 in 10 people suffer from some of this so it really is common.

Have to say I agree with @itsjustbiology . I think DLA and similar benefits should be for people with a real need. I know someone with EDS who somehow has managed to get PIP which she says she uses for physio and a cleaner. She earns 60k a year, has plenty of money for a nice new car, holidays, etc. She does not need this money, the taxpayer is paying her £700 a month and most of those taxpayers will be earning less than what she does.

If your dd needs physio, etc it should be available on the nhs. Sorry if that sounds harsh and I accept some people will feel very differently.

The PIP person I know told me to claim for it as well. I haven't looked into it.

This is what I cannot understand ever..Oh I have x condition, what can I claim and how much is it worth to me? It blows my mind. Who exactly do you expect to pay , and why should they? I cannot cope with this level of thinking I really can't..

Yes I'm hyper mobile just turned 50 and recently been diagnosed with with osteoarthritis in my knees the right being the worst. This is the one that dislocates the most.
I only got diagnosed mid 30's but obvious from a very young age I was hype mobile . My eldest ds has it bit my youngest has bypassed it luckily

I’m hypermobile, diagnosed hypermobility syndrome, and live in constant pain. I need a lot of physio but the NHS service near me is pretty useless.

What you have to know is that only a percentage of people who are hypermobile will develop hypermobility syndrome, and only a percentage of them will develop extreme pain/fatigue.

My advice is to get her stabilising her joints now - weight training with guided weights in a gym, yoga, and swimming are the best in my opinion. Also a low inflammation diet.

My daughter has this and was a few years before we received a diagnosis, by this time was in a wheelchair, I was so worried. She also has flat feet and clumsy, she had to wear specially made inserts in her shoes although as she's now an adult she can wear normal shoes. She was diagnosed at Great Ormond Street and was an in patient on the rheumatology ward. She is so much better when she does exercise and feels so much stronger. It can be variable as she can overdo it but seems to now know her limits. She does have a weakness with her back though. It has definitely improved as she's aged. Good luck. By the way I did apply for some benefit when she was younger and Great Ormond Street suggested it, as I am a non driver and was having to taxi everywhere. I also went part time at work to help her. She had counselling with pain management.