Sunday, August 10, 2008

Ehlers Danlos Video

Although this is a blog about life with Ehlers Danlos Syndrome I have realised it's lacking in details about EDS. This 5 minute video is taken from a full length documentary Medical Incredible and despite being somewhat sensationalised certainly reflects the frequency of dislocations someone with EDS as severe as myself or Ms Ordinaree would experience.


Ms Ordinarée said...

Fabulous post/video, if a little soft-focus-tastic, It does give a more accurate illustration of my (and yours bendy) dislocation "patterns" & frequency. I often think/say that I should video my (shitty dislocations) day, not it would likely appear staged, there are so many.

Hope you are having a good (ie comfortable) night, love n hugs,

Ms Ordinarée xox

Ms Ordinarée said...

......meant " (shitty dislocations) day, BUT** it would likely appear staged, there are so many" not "Not"..

The borked fingers strike again...

Ms Ordinarée xox

Jay said...

Thanks for that, it was very informative. I somehow (naively) thought that being super bendy it wouldn't hurt quite so much when your joints dislocated, but clearly that isn't the case. And since I know dislocations are excruciatingly painful, I have much more sympathy with Ehlers Danlos sufferers now. Not that I thought it was a walk in the park, but I hadn't realised just how painful it all was. :(

BenefitScroungingScum said...

MsO: S'ok honey I can translate finger bork ;) Funny I was talking to someone today about videoing my hip doing it's flick thing, having tried to film it myself it's just not possible to get the camera (phone) far enough away so I said you and I should film some joints next time we see each other. Maybe next week I'll come see you if that suits?
Hope you had good night too and that it was better than usual? Hugs x

Jay: Thank you I'm glad it helped. I don't think your assumption is naive, in part because we're so bendy/lax jointed our joints tend to go back in more easily (though not always) and of course as well described in the video the first time you're not used to it and it hurts like crazy then when it happens every day you have no choice but to get used to it.
I think one important point to make is that neither Ms O or I have the level of strength and mobility seen in the video as illustration when I got up this morning for some unknown reason my left knee decided to go in and out multiple times and stuck out for a while before calming down then when I reached for my phone I dislocated my shoulder. I'd say that's completely normal for both Ms O and I although far more extreme than the vast majority of those with HMS or EDS
The big problem with the pain is not the instant flare acute pain of a dislocation but the constant chronic pain caused by a body working at marathon running level just to hold itself together, breathe, digest etc. That and the complete exhaustion it causes! Still, we get the best drugs all legal an' all ;)

Trixie said...

Thanks for that hon, makes me udnerstand it more.

Do you think taking up martial arts could help you? Do you use those finger thingys?

Mr. Nighttime said...

Excellent video, as are so many of Discovery Health's pieces. It makes me wonder how many contortionists from way back when actually were sufferers of this syndrome, though back then it didn't have a name.

Do you wear finger braces, btw?

Ms Ordinarée said...

Hey Bendy, touching upon something you mentioned here in the comments, ...I know that like me,you would love to be able to build up the strength and core stability to be the Martial arts bendy bod.

Just to explain a little further, Speaking for myself, I was a gymnast and ballerina and participated in Judo etc. In fact the first and most significant ( in terms of disbelief!) dislocation of my hip was during Judo. (One of my hips is never in socket the other flicks in and out - in "normals" this would need a general anaesthetic to rest, yet we do it on our own.,) The Hormonal involvement has also mean that over time, my dislocations have become more frequent. Add into that my pregnancies and the hormonal influence of not just those but the Depot I was foolishly persuaded to take and you get the state I am in, the many many daily dislocations,the unstable back ( I also have paralysis due in part to my EDS) and my very unstable hips, shoulders etc etc oh ribs and Larynx the list goes on.

For folks like BendyG and I, it takes years to build up core stability so that (in my case) I can sit up just holding on -without constant support in my w/chair...
The decisive factor which makes our story so different to those who are able to function on a higher level, is that both BendyG and I have a global and Mosaic diagnosis ( we span several- almost all EDS categories) and we are female ( hormones have a great effect on EDS and the collagen, may note how the female in the video was more widely effected) and lastly, our late diagnoses...both Bendy G and I were in the second decade/almost 3rd decade of life, by then, too much damage has been done, yet we hope and try and stick at it.

After all, what choice do we have?

I hope this helps explain some factors, til Bendy G can get back to you all,

Ms Ordinarée

(oh and sorry of bleating on, bad day)

BenefitScroungingScum said...

Trix: Glad it helped. As Ms O has explained so well for all manner of reasons neither she or I could consider something as full on as martial arts. I'm also an ex gymnast as well as many other sports, the problem for people like us is that going so long without diagnosis means that all manner of damage has been done to our bodies which had we known would potentially have been preventable. As mentioned, although I've worked very hard and improved my mobility (from none!) things like sitting up are physically hard work for those with such severe EDS. Hope that helps x

MrN: Ah well you've hit on the debate about hypermobile people, hypermobility syndrome and EDS there ;) and that's a whole other story!
No, I don't wear finger braces, tbh I'm not a big fan of braces at all, I find that unless it's unavoidable or for a short term injury braces just weaken the joints and ultimately lead to more problems.
I rather suspect though that the level of laxity both Ms O and I have would mean we'd just dislocate within the finger braces as we already do with wrist/hand braces. I'm advised though that had my joints been appropriately braced during childhood and onwards it would have helped prevent much of the damage and degeneration currently there.

MsO: Thank you! And it's not bleating ;) x

Anonymous said...

Achelois says:-I am an EDEser.. as BG knows. The problem with increasing core stability, is that our muscles have to work harder to start with and therefore as has been explained theirin lies the problem, combined with the hormonal influencing factors which is specific to females, to an extent makes the martial arts aspect of the video somewhat sensationalist to me. The finger bracing for me is a no no as I have the thin and easily injured skin of a typical edeser and even within a normal supports need sheepskin liners to prevent injury. ALong with extreme hypermobility, my joints are able to move within a support to the extent that wrist supports have been bent - and yes they have a rigid metal flat rod inserted within them, specialist eds physio suggested that they could in fact do more harm than good as the desire of the hypermobile joint to keep moving even within the supports renders them too inactive within the support and leaves the muscles wasting and the joints which are supposed to be supported even more prone to dislocation. I think finger braces are more popular in the USA. My child who has inherited my condition thought it was normal to be in constant pain, it is not just the dislocations that are painful, sleeping, in itself can be painful. My daughter dreams pain! Without harping on, it is difficult to express that this is a disabling and chronic condition. I can only thank BG for her continued efforts to educate. I don't feel as though I have expressed myself adequately here but am BG knows what I mean. Just meant to write to support rather than rant. Hey ho- its one of those EDS days which sucks, particularly as I have just been to the dentist and experienced again lack of efficacy of local anasthetic, in my mouth only to have a completely numb left arm!! Dentist himself was gobsmacked - the joys of altered collagen.
I will mail you BG - I have been lost in myself. xoxoxox

BenefitScroungingScum said...

Achelois: Thank you for the comment and lovely to catch up today. You and Ms O have saved me the task of having to explain so thank you both for that! BG x