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Ehlers-Danlos Syndrome User Group
When does hypermobility become EDS?
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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When does hypermobility become EDS?

Hi all, just wondering how a doctor differentiates between hypermobility and EDS?

I was diagnosed several years ago with hypermobility (7/9 on Beighton scale) but I now have excruciating joint and muscle pain for which I take Lyrica. My hips are very lax and slip in and out very easily, I'm forever spraining and twisting things... I also have scoliosis and have had osteoarthritis since I was 18, and degenerative disc disease since my adolescence. I have chronic IBS, acid reflux and swings in blood pressure (unexplained by other tests). I have very bad bruising on my legs which has twice now prompted testing for blood clots.

Does this sound like EDS?

If so, I also have diaphragmatic weakness and a ventilator as an 'enabler' when I am struggling, and no one knows what is causing it - could this be caused by EDS?

3 Comments
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620923_tn?1405964489

  Hi and welcome to the EDS group.

  Yes indeed it does...they use to say they were 2 diff things, but new research indicates they r all the same thing....not separate conditions.

I have EDS along with GERD, IBS, low BP, easy to bruise and slow to heal....and I know I did not even try to move my joints  when I was younger.....

  There r many types of EDS and there is a vascular type....so I would suggest u get checked out.

  Also look at the videos posted above by Dr Driscoll......

  
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Hiya Selma, thank you for your reply. I have now been diagnosed with EDS Hypermobility type and am starting physio etc.
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620923_tn?1405964489

  No worries....I saw u liked Dr Driscoll's videos.....do post updates on how physio goes for u : )
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