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AIBU?

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Hypermobile

61 replies

Hypermedi · 27/10/2024 15:28

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?

OP posts:
Gettingbysomehow · 27/10/2024 16:03

The main thing about hypermobility is preventing an injury. Once an ankle or other part is repeatedly and permanently injured then it's set for osteoarthritis and other problems in the future.
Good shoes mainly and plenty of exercise such as cycling, running is obviously not a good idea.
Physio can certainly help.
You don't have to wrap them in cotton wool but just be careful.
Hypermobility affects the whole body, or can affect the whole body and this can include the stomach so you often find stomach pain and difficulty digesting is a problem too.

DanielaDressen · 27/10/2024 16:02

Hypermedi · 27/10/2024 15:57

Unfortunately this was just a random doctor at the walk in centre who we'll never see again but at least she's put a referral in place. I'm also a great believer in weight lifting so I'll consider this for her in an age appropriate way. Thanks.

Yes, even just body weight type exercises stuff would help. With good technique! She will need to be careful with anything like Pilates or yoga as it’s possible to over extend, etc without realising. My osteopath said be careful as my lower back is already too hypermobile and he said the last thing I want to do is stretch more, make myself more mobile!

Hypermedi · 27/10/2024 15:57

DanielaDressen · 27/10/2024 15:55

I’m hypermobile, I’ve been diagnosed with Ehler Danlos syndrome. As a teenager my kneecaps used to pop round the side of my legs frequently, I used to try and tape them in place every day as shown to by a physio. In the end I had keyhole surgery to cut a little groove into them so they stayed in place better. I have major issues with ligaments and tendons, constantly rupturing tendons. Have had to have surgery to have them stitched back together. Never found any help on the nhs, no doctor or physio is interested in trying to help me stay in one piece. I have spent a lot on private physios and osteopathy but not had great help from them either to be honest. Best thing I’ve found is weightlifting as the stronger I can keep my muscles it takes strain off my ligaments and tendons. It does sound like your Dd has found someone who is interested in being proactive about helping.

Unfortunately this was just a random doctor at the walk in centre who we'll never see again but at least she's put a referral in place. I'm also a great believer in weight lifting so I'll consider this for her in an age appropriate way. Thanks.

OP posts:
FinallyMovingHouse · 27/10/2024 15:57

My DD is very hypermobile and has this with her knees. Essentially she will be helper greatly by starting to do exercises that concentrate on stability around her major joints. It does work.

Hypermedi · 27/10/2024 15:55

Hairyfairy01 · 27/10/2024 15:39

My dd is hypermoblie 9/9 on that scale. I'm presuming you mean she hyperextends both knees, so they flick back? Basically, from what I understand, in hypermoblie people the collagen, which is like elastic around the ligaments is too loose and therefore muscles and joints are not well supported. Does she also have flat feet, handwriting difficulties, a bit clumsy eg falling over a lot, dropping things, problems cutting up food nicely?

She doesn't appear to have flat feet, her handwriting is excellent, she is clumsy yes and does drop things a lot. She doesn't cut up her food really I tend to still do it for her when needed as I'm doing it for the younger child anyway.

OP posts:
DanielaDressen · 27/10/2024 15:55

I’m hypermobile, I’ve been diagnosed with Ehler Danlos syndrome. As a teenager my kneecaps used to pop round the side of my legs frequently, I used to try and tape them in place every day as shown to by a physio. In the end I had keyhole surgery to cut a little groove into them so they stayed in place better. I have major issues with ligaments and tendons, constantly rupturing tendons. Have had to have surgery to have them stitched back together. Never found any help on the nhs, no doctor or physio is interested in trying to help me stay in one piece. I have spent a lot on private physios and osteopathy but not had great help from them either to be honest. Best thing I’ve found is weightlifting as the stronger I can keep my muscles it takes strain off my ligaments and tendons. It does sound like your Dd has found someone who is interested in being proactive about helping.

JC03745 · 27/10/2024 15:54

Have you scored her yourself?
https://www.ehlers-danlos.com/assessing-joint-hypermobility/

I too would be very concerned due to the association with other conditions, potential for future joint pain/issues etc. Maybe your DH didn't realise the impact it can really cause?

Assessing Joint Hypermobility - The Ehlers Danlos Society

https://www.ehlers-danlos.com/assessing-joint-hypermobility

StamppotAndGravy · 27/10/2024 15:48

I'm hypermobile although not too badly. Physio, pilates and ballet make an amazing difference. They reduce the number of times I injure myself by making me stronger and more stable so I spend less time in pain. I wouldn't need it if I didn't like sports and outdoor activities though, because I'm not bad enough to break myself just from normal life, only if I try to run marathons or climb mountains. I wasn't diagnosed until I was in my 30s though and just assumed it was normal to hurt all the time when I was younger.

Hairyfairy01 · 27/10/2024 15:39

My dd is hypermoblie 9/9 on that scale. I'm presuming you mean she hyperextends both knees, so they flick back? Basically, from what I understand, in hypermoblie people the collagen, which is like elastic around the ligaments is too loose and therefore muscles and joints are not well supported. Does she also have flat feet, handwriting difficulties, a bit clumsy eg falling over a lot, dropping things, problems cutting up food nicely?

Hypermedi · 27/10/2024 15:33

HomeCookingWannabe · 27/10/2024 15:30

@Hypermedi If it helps, i'm hypermobile, so is my mum (9/10 on the scale) and neither of us have ever had the physio that everyone always says you need.

They're saying her tendons/ligaments (I don't know which and actually don't know the difference) are not supporting her knees at all or something like that and as she's now pulled one and its giving her pain it could be a long road of recovery. Its worrying she was able to completely dislocate both her knees without pain. She was able to move her kneecaps all the way to the sides of her legs 😔 no idea what that actually means but it seems awful for a growing child.

OP posts:
HomeCookingWannabe · 27/10/2024 15:30

@Hypermedi If it helps, i'm hypermobile, so is my mum (9/10 on the scale) and neither of us have ever had the physio that everyone always says you need.