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does my dd1 (13) have hypermobility syndrome?

(5 Posts)
l4k Sun 07-Aug-11 21:10:33

Does anyone have any advice for either ruling this out or getting a diagnosis?
dd1 is 14 soon and has had pain in her left shoulder most days for about 18 months.Her neck is also very tight and hurts and she has on average 3 days of headaches a week.Her shoulder clicks and grinds horribly.
Finally seen physio via gp who both say she has very mobile joints and her shoulder is unstable.She's been doing strengthening exercises for about 5 weeks with no improvement and no the physio has refered her on to a peadiatric physio with experience of hypermobility.
Is this the right route for help for her?
Is it relevant that I have been told by osteopath and trainers that I'm hypermobile and dd2 who is 10 is too?

deepbreath Sun 07-Aug-11 22:59:57

I'm not a medical expert, but my dh and dd have extensive joint hypermobility as they both have Marfan Syndrome.

Hypermobility does seem to run in families, and you say that you have been previously told that you have some degree of hypermobility. Some people can have a bit of hypermobility as a stand alone issue that doesn't bother them too much, others can unfortunately have problems because of how much extra their joints can move, which causes pressure on the surrounding tissues. The joints can partially or fully dislocate much easier than in someone that is OK. My Dd completely dislocated her knee last weekend just through walking normally.

It does sound as though your dd is having the right treatment, at least to begin with - it is very important to not over work the joints and to see someone that is familiar with hypermobility. By carefully building muscle tone, it can provide a bit of extra support to wobbly joints. If your dd's ankles are unstable, there are insoles and supports that can be worn inside normal shoes that might help.

Here is a website that might be useful for you: HMSA and there are also support groups on Facebook etc. that are open to people that need advice. HTH

SparkleRainbow Mon 08-Aug-11 09:42:07

I agree with deepbreath that the right physio is the best thing you can have to support your dd. I would go back to the gp and ask for a referral to a rheumatologist, who could give you a dx of hypermobility, if that is the dx. Only a rheumo can do this, a gp may have an idea, as may a physio if they are experiences in the area. Hypermobility is genetic, as deepbreath says, the extend to which an individual is affected can vary greatly. I am affected much more than my sister, and my ds is significantly worse than me, by massive orders of magnitude. My other two dc appear not to be affected at all. There is athread in sen children entitles EDS and Hypermobility, which has got other mums on, as well as deepbreath and me, the wealth of experiences and differences there might be helpful.

l4k Mon 08-Aug-11 19:09:38

Thank you both
Will look at website and other thread.
DD1 already has innersoles fitted by a chiropodist and dd2's elbow kept dislocating when she was younger but hasn't happened for about 4 years.
Thanks for info about rheumatologist,I wasn't sure who she'd be refered to.

SparkleRainbow Tue 09-Aug-11 08:18:13

Your welcome. The HMSA website deepbreath suggested is a good one. smile

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