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How to alleviate the symptoms of Hypermobility

(12 Posts)
krustykittens Mon 02-Oct-17 15:37:03

I am hoping some of you might have experience of this, but when my daughter was 10 she was diagnosed as having hypermobility. She started to swim competitively and started to get black bruising on her ankles (it was black and looked like ink had been injected under her skin, then would fade rapidly, not like normal bruising at all) and finding walking difficult afterwards, which a physio said was fluid on her joints reacting with the change of temperatures as she got in and out of the pool. She struggled at the swimming and gave it up but is still a sporty girl. The trouble is, any sustained activity leaves her in pain the next day. If she writes for too long at school, say an exam period of a week, she ends up with crippling tendinitis. She was out all day at a sporting event on Saturday and noticed her shoulder hurt yesterday, ended up being in terrible pain by the evening and has had a day off school as she has had no sleep and is still sleeping. She said yesterday she is fed up as some part of her body always seems to be hurting. The doctors have said she will probably grow out but she is 16 in a few months and it doesn't seem to be getting any better. She is fed up and just wants to do sport without hurting afterwards. Would regular physio sessions help? Or is there another solution that may have worked for you?

handmademitlove Tue 03-Oct-17 16:15:20

My DS was referred to peadiatric physio. They gave him exercises to trengthen all the joints but whenever he has a growth spurt we go backwards for a while. Your GP can refer.

nocoolnamesleft Tue 03-Oct-17 23:21:17

Agree physio can help. There are also paediatric occupational therapists, who can look at things like the best pen/desk set up for writing at school.

krustykittens Tue 03-Oct-17 23:40:24

Thank you! I am taking her back to the GP, who has been very dismissive so far, and get them motoring on this. She is really fed up.

QuirkyGoose Tue 03-Oct-17 23:54:52

You don't grow out of it, if anything it greets worse as you get older for most of us. She needs a specialist consultant and Physio.
Me and the kids all suffer from handwriting pain. She may be able to do most work in the computer. Pity she is older as often changing pen grip can be helpful. I have to use special pens, special mouse mat and a different desk chair. So do my kids.

It sound like she could have Ehlers Danlos Syndrome type III, which is a more severe form of hypermobility.

Some peoples have hypermobility and very little pain. Others have near constant pain. I'm the later, but was only diagnosed in my 40s as my son was diagnosed at 8 and it is a genetic condition, we are not sure yet whether DD has JHS or EDS.

There are various Facebook pages and websites.

There is no treatment just the management of symptoms. Good luck.

Sirzy Wed 04-Oct-17 13:50:55

The specialist advised trying biofreeze for ds. I was cynical but it seems to help

krustykittens Sun 08-Oct-17 18:56:58

So, a quick update. Took daughter to the GP on friday, as now one of her hips and both knees are hurting her. GP practically laughed in my face when I mentioned the information that you had given me, Quirkygoose and basically said all they would do for her would be to refer her to a physio and take blood tests to check for any inflammation. I hope if the physio can't help that will refer her on. It is a separate grumble but why do so many GPs treat women as hysterics when they are concerned for their children? My youngest daughter had stomach problems caused by food intolerances and I kept being told it was a virus and they were not going to waste a specialists time. I wonder why I bother bringing them to the GP at all, I should send them with my husband.

QuirkyGoose Tue 10-Oct-17 19:19:58

I agree with GPs, sending husband gets a better response.

Good luck with the physio. It may or may not help. Does she wear orthotics, get some online (evidence shoes online cheap orthotics just as effective as the custom made ones).

She may have to learn to manage the pain Im afraid. Pain is part of EDS. build up her core muscles. Buy ibuprofen gel, freeze spray, and supports for her joints.

I'm definitely in the camp if get on with it and ignore the pain. I've realised there is usually no fix for the pain. Don't let her give up her sport, just help her manage the pain.

susurration Tue 10-Oct-17 19:30:04

I have one of the less severe/painful versions of hypermobility that doesn't require a physio etc so i'm probably not much help, but I find that regular low-impact exercise helps me. I do yoga (very carefully) and for cardio I use a cross-trainer/elliptical or the rowing machine. Sometimes the pain does get bad, especially if i'm not doing regular exercising and then do something like a long walk or spend a lot of time on my feet. Also the more I exercise the less my joints hyperextend, particularly my knee.

Hope your daughter finds something to help her soon. It can be a bit miserable.

flapinko Fri 13-Oct-17 17:30:04

Pilates or specialist physio exercises are top of the list for hypermobility as they help strengthen the core, which is important when you have unstable joints (yoga not so much, as causes you to overstretch them).

Orthotics too, as a PP said, as a bad walking/running gait can make the symptoms much worse. I would go and see a podiatrist for this though, and not buy ones of the internet, as they won't be fitted to your particular feet (obviously) and therefore not liable to help much.

And lots of gentle exercise to keep your joints moving and your muscles strong is important - so walking, cycling, gentle swimming - but not running, tennis, team sports.

Good luck x

Itsanicehotel Sat 14-Oct-17 12:18:28

Sorry the doctor was so dismissive. I think with the symptoms she has it would be a good idea to see a rheumatologist to get an opinion whether she has ehlers danlos syndrome. If you within reach of London, the Royal National Orthopaedic Hospital has a hypermobility clinic and consultants who can diagnose it. The criteria has recently changed and its quite a challenge to work out if someone meets it now, but they are brilliant there. They also have physio, occupational therapists and hyrdotherapy there.

I have EDS hyperrmobility type and have the problems your DD has with tendinitis from writing/computing and if I do a lot of exercise I can be in a lot of pain for days after in the muscles/tendons around the joints most involved in the exercise.

Does DD have very soft, velvety skin like a baby?
Any dental overcrowding or high, arched palate?
Google the Beighton test which will help work out the extent of her hypermobility.

I'd be wary of any physio giving her a programme because someone with little or no experience of hypermobility or EDS can make matters worse in my experience.

Don't let the doctors fob you off. Ask for a rheumatologist referal. There's lots that can help your DD but a GP alone and a bit of physio can't provide that. A blood test is definitely useful to rule out anything inflammatory though. Hope she gets some help soon.

krustykittens Mon 16-Oct-17 15:00:41

Than you again for your replies. She seems to be feeling a bit better again. I am going to look into pilate classes for her, she has been running as she is paranoid about being fat! Her big problem is PE at school, she often finds she ends up in pain after hockey or running. I am wondering if I should as for a meeting with her teacher? There is no way they will excuse her but maybe there is something the can do to mae it less painful for her?

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