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Butterfly
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Joined: 9 Apr 2017
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09 Apr 2017, 12:04 pm

I've seen that there is possibly a link between autism spectrum disorders and joint hypermobility syndrome, EDS, etc. I know there is also a link between hypermobility and anxiety.

I have Aspergers, and also joint hypermobility syndrome. It was only diagnosed in me last year, but I've had joint problems my whole life. It has gotten particularly bad in the last few years, and I sometimes need a stick to lean on and to steady myself, as my legs are rubbish. I do physio exercises I was given as well. I also have a bunch of other problems stemming from hypermobility, and yes, anxiety disorder as well.

Does anybody else have JHS or EDS alongside their ASD diagnosis? How do you cope with it? Are some of your joints worse off than others?



248RPA
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09 Apr 2017, 2:05 pm

There's a member called screen_name that is diagnosed with EDS. If you want to message her, this is her profile: https://wrongplanet.net/forums/memberlist.php?mode=viewprofile&u=91245&sid=42b086b35beec8d6cc18be9198148110

I have hypermobility and got PT for it, but not really any official diagnosis for that. Like you, I've had problems from it all my life, but as of now, it's not as bad as yours. Then again, I'm 6 or 7 years younger than you, so who knows what might happen in that time? Right now, I don't really know what to do either, except to pace myself appropriately.

Have you checked out the EDS support group at inspire.com? It's here: https://www.inspire.com/groups/ehlers-danlos-syndromes-and-related-disorders/
If you haven't, I suggest that you take a look. There is a section called bones, joints, and mucles where a lot of the hypermobility-related problems are discussed.

I hope you find what you are looking for.


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Butterfly
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Joined: 9 Apr 2017
Age: 31
Gender: Male
Posts: 12
Location: UK

09 Apr 2017, 2:24 pm

Thank you for all the links in your post! I'm grateful for the help and support :)

If I could give some tips, I'd suggest strengthening your core muscles and making sure you walk/sit/hold things correctly. Some of my problems stem from doing stuff (like standing up, walking, etc) wrong for so long. My body was compensating for weak connective tissue and muscles by doing stuff the wrong way, but an easier way for my body. Apparently a common one in hypermobile people is pushing knees inward as you stand, rather than keeping them straight.

I hope that because you were caught early, and have been doing physio that you aren't badly effected in the years to come! Someone I know has a daughter around your age who has JHS and was helped with it early on. She is very active, and it doesn't seem to bother her too much.



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Raven
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09 Apr 2017, 3:31 pm

Funny enough, yes. I am very hypermobile too (but going through a dx).



renaeden
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09 Apr 2017, 10:46 pm

I am the least flexible person I know.



Lumi
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10 Apr 2017, 7:36 pm

From an early age I was flexible. I have hypermobile elbows and at least 2 fingers on both hands. I wonder if it is a mutation.


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Butterfly
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12 Apr 2017, 9:38 am

Lumi wrote:
From an early age I was flexible. I have hypermobile elbows and at least 2 fingers on both hands. I wonder if it is a mutation.


Does it cause you any pain or problems? I sprained my shoulder/neck recently, and though it was partially from stress (tension, grinding my teeth), I suspect it was partially to do with hypermobility too.

It's annoying because I end up hurting a lot, but I feel like if I ask for painkillers when it's particularly bad (like the sprained neck, for example) they will think I'm drug seeking. I had that from doctors once before when I asked for something for my panic attacks, which at the time were so bad that I failed my first year of university. He thought I was being insincere. Luckily, I have a more understanding doctor now.