Hyper mobility syndrome

[Gingerbrit]

It's such a pain... Literally! I'm 18 and I can't even stand long when I go out with my friends! My shoulder sub laxes constantly and my thumb dislocates. My hip pops and so does my ankle! My knees are also affected and flare up burning and go red, I'm so tired and sore constantly it's just awful and people don't realise how painful it can be! I'm glad for this as I can read other people's posts and know I'm not alone in my suffering x

[Hazelnut74]

Are you on the facebook elastic EDSers page? Great group for support. 14-25 year old. X

[Gingerbrit in reply to Hazelnut74]

I've just asked to join thank you for mentioning this group as I didn't know about it x

[Hazelnut74 in reply to Gingerbrit]

You are most welcome. My daughter Chloe runs it. X

[jenniw in reply to Hazelnut74]

Thanks I will get that organised.

Best wishes

[DISC]

Hang in there hun, you are not alone. Hopefully you won't have the gastro side of things as that has really affected my life. It is frustrating how little can be done for us though... Just keep talking and know that you have support from others like you. Check out the EDS sites because really they should phase out hypermobility label altogether! Take care x

[jenniw in reply to DISC]

Thank

[Binturong00]

Honestly, the only thing that works for my joints is strength training. If you're in the UK your GP can refer you to the Physical Activity Referral Service which sets you up with suitable classes and trainers. It's very hard at first and hurts a lot before it starts feeling better.