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Hyper mobility

Feb 25, 2018 2:07 AM

So I am 12 I was diagnosed with hyper mobility about 2 years ago some days are worse than others but never better the amount of school I have missed due to my pain is unimaginable going to physio 1-7 days a week is boring and it does not help ( it actually makes it worse ) I know I may not be as bad as some ppl aka my mum who has Eds throughout her hole body and her taking morphine and her not being able to get up sometimes it tears me apart I have tried all the medicine the docs can prescribe for my age and they don’t work so now I’m awaiting another physio therapist who is said to be a lot higher up ( hoping she will give me something to help me )
I also have difficulties walking (sometimes I have something pop in and out or pop out and in ) and the doc dosnt know what to do now I was just wondering if anyone has any advice

Feb 25, 2018 1:58 PM

Dear, you need therapy in water. You also need to get a support group for EDS. If you are worried about joining face book make up a screen name and use a parent. Don't post pictures. But I have Tarlov disease which a lot of moms are on for their children. Some of those kids have EDs, Chari and Cysts. But why I say therapy in water. The water supports your whole body. I am always hyper extending my knees and could not walk if it were not for water therapy.

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