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Hypermobility - what helps?

(9 Posts)
Noitsnotteatimeyet Sat 05-Mar-16 07:55:53

Dd(13) is hypermobile and it's been causing her a lot of pain over the last few months

She's having physio and next week has a referral to the orthotics department to have insoles made

We realise it's going to take time but just wondered what helps children/teens with this condition on a day to day basis - dd's had a tough week and is absolutely shattered now

Idefix Sat 05-Mar-16 08:29:47

dd was diagnosed with ehler danlos type 2/3 when she was 12 (was always hyper mobile, and when a sprained ankle refused to settle we went to go who referred us to ortho, they diagnosed over bonification of accessory navicular bones in foot. Moved house and new gp referred to paeds who gave final diagnosis) and we went through 2 1/2 yrs of endless rounds of weekly/twice weekly physio, orthotics, splints, braces.

Dd was in almost constant pain and exhaustion, would come home from school and go to bed after a hour soaking in the bath, getting up for dinner and then going to bed.

^^ not particularly helpful as I am reading it back to self but won't delete...
Dd is now 15 and things are much better, we have stopped physio with therapist, she does her own when she can remember.

Puberty really seemed to exacerbate her problems in terms of new injuries and pain levels. Now there is a noticeable increase in minor injuries round her periods. Sadly my dd is not sporty at all, but I think this is another reason why things have improved for her. Our pt was very strict about the types of sports dd should avoid. Ironically they were all the sports dd loved and participated in.

The right footwear is essential in avoiding further problems and worsening existing ones, so no flat shoes, pump styles shoes, vans, converse etc. This caused lots of upset and tears as dd was very keen not stick. Dd wears Nike that have a lot of support and will take orthotic insole.

Orthotic insoles can be very uncomfortable to start with and it can take a couple of weeks for the feet, knees, hips to get used to the change in position.

Epson salts are helpful as is swimming generally.

Sorry for war and peace and being a bit doom and gloom in places.

lilacclery Sat 05-Mar-16 08:32:09

On mobile so can't watched thread but interested as dd 5 just recently diagnosed with hypermobility

hellsbells99 Sat 05-Mar-16 09:03:49

My DD was diagnosed at 13. She is definitely a lot worse when on her period - and needs a lot more rest. She has had physio and been given specific exercises to do. She also gets worse when she is not exercising regularly - and 17 year olds don't tend to exercise as much. Walking distances causes a problem so wears knee braces when necessary, as well as insoles. She also has a problem standing still for any length of time - will go dizzy and keel over, so tries to avoid that. She has to 'listen' to her body and rest/sleep when necessary. The best painkillers/anti-inflammatories that work for her are diclofenic (prescription only) when really bad, but she takes paracetamol and ibuprofen very regularly. And as pp said, no flat shoes.

Noitsnotteatimeyet Sat 05-Mar-16 11:45:41

Thanks - she's always been very sporty and is really struggling with her body not 'behaving' itself

Dd's been told no hockey, football, netball, trampolining, skiing but swimming apart from breaststroke, horse riding, cycling and to some extent running are ok but she'll need to build up slowly to the levels she was doing before

She's still not started her periods yet but I'm assuming this must somehow be related to puberty

Poor thing had a school trip yesterday which involved lots of walking around and when she got home she was grey with exhaustion and pain. She just about managed to eat and then went straight to bed sad

acupofteafortwoormore Sat 05-Mar-16 15:17:37

Orthotics changed everything for me - I was & am (but much less of a problem now) hyper mobile & orthotics (which cost a fortune 20 years ago) made for my foot design helped my knee pain which at the time was crippling with every step - especially going downstairs.

Proper shoes does help & boots & impact sport rather than sport that helps flexibility.

Encouraging a proper sitting position rather than the natural floppy state can also help.

Through my own child I have just discovered writing grips (rubber ones on pens or pencils) & I use them as they help me with hand pain. I think they strengthen the hand.

My son is only 4 but has a shared physio & consultant appointment for hyper mobility soon, so I have been on the look out for things for him & remembering what I would have liked help with. Sadly from 3 he started saying his bones hurt & when you help put his shoes on his bones in his feet click & are so flexible to me it was obvious.

There is a lot more support & awareness around now then before, if writing is a problem you can ask about typing. Sport is important but it is the right type.

Also keeping an eye on the tiredness/dizziness - As there are other associated conditions - low blood pressure etc.

Taking a good multi vitamin or liquid iron may also help.

Horrid condition & hard to get the message across to friends etc -

Mummytron Tue 08-Mar-16 17:37:55

You will be amazed how much the insoles help!

TychosNose Tue 08-Mar-16 17:47:47

Dd is hyper mobile. We've just started using a wobble board on the advice of gp to strengthen ankles and try to reduce the sprains. Don't know if that could help your dd.

macdat Tue 08-Mar-16 18:23:15

The physio will help a lot. I found physio, even though it's very gentle, to be much more helpful than normal regular exercise. Regular exercise is still important and will help, but physio was a God send for me. It's just small things, and she must keep up with doing them daily, but it helps.
Apart from that, keeping conscious of her posture at all times til it becomes second nature to just sit/stand/walk in the right way.
All of that isn't a cure of course, it'll still hurt, but it will help.

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