EDS is not about flexibility!

bobby

Well-Known Member
I thought it was. So this article by an Ehlers Danlos patient was enlightening. As the author says: it's a murky area.

http://murraymeetze.com/uniquelystriped/its-not-about-flexibility

I've said it before, and I'll say it again, flexibility (muscles) and hypermobility (joints) are not one in the same. Another major misconception in Ehlers-Danlos Syndrome (EDS) is in regard to stretchy skin. In 31% of cases, highly stretchable skin is not present. EDS actually results in a loss of tissue elasticity. Too many doctors are unaware of these facts, and the misconceptions are hurting patients.

As hypermobility goes up, flexibility can often go down. As is the case for me, muscles can tighten while attempting to stabilize hypermobile joints. Many with EDS, including myself, have extremelytight hamstrings, even in childhood, as the hamstrings try to protect the hypermobile spine and joints. Can EDS patients be extremely flexible? Absolutely. But, flexibility is not what doctors should be assessing when EDS is up for diagnostic consideration.
 

bobby

Well-Known Member
@Lissa yeah, same here, many of the symptoms and comorbidities are things that I have. And I know there's a substantial overlap between EDS and ME. But I figured I didn't have that because my lack of flexibility. Pretty eye opening!
 

San Diego

Well-Known Member
I thought so too! I've ALWAYS been super tight -- especially hamstrings. Figured there was no way I had Ehlers Danlos. Wow.... That's pretty wild!

Thanks for sharing that!
I once saw an orthopedic surgeon about a knee. I was his first patient of the day, and he said “I’m going to go ahead and hand you the “tightest hamstrings of the day” award now. No way anybody’s gonna beat you!"

And so it goes in the world of zebra patients!
 

Remy

Administrator
I thought so too! I've ALWAYS been super tight -- especially hamstrings. Figured there was no way I had Ehlers Danlos. Wow.... That's pretty wild!

Thanks for sharing that!
This is my experience as well. I'm diagnosed with hyper mobile EDS. I'm extremely flexible in some areas and extremely tight in others. It's clearly compensatory. That is what I try to work on in Pilates when I'm up for it...giving my. Body strength in underused areas rather than focusing on muscles that are already too strong in order to change my body architecture.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I thought it was. So this article by an Ehlers Danlos patient was enlightening. As the author says: it's a murky area.

http://murraymeetze.com/uniquelystriped/its-not-about-flexibility
I just heard this...as well - that EDS is too often thought of as simply being too flexible. Well, my muscles are extremely tight. My hamstrings are like steel bands. I actually tried (unsuccessfully) to stretch them out for a couple of months. I don't think it did a bit of good.

One of my problems trying to stretch my hammies is that it hurts my back. Go figure...

Looking forward to reading more about this - thanks for passing it on.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I once saw an orthopedic surgeon about a knee. I was his first patient of the day, and he said “I’m going to go ahead and hand you the “tightest hamstrings of the day” award now. No way anybody’s gonna beat you!"

And so it goes in the world of zebra patients!
The zebra patients ;)

I love it!
 

Lissa

Well-Known Member
Ha! One of my doctors once started to lecture me about horses vs zebras... Sounds like a horse, don't look for zebras. I started laughing and told him-- clearly you don't know who you are dealing with here.

Thankfully he laughed and realized it was far more wise to be aware that zebras do exist!!
 

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