The SPECIALIST'S OFFICE => Joint hypermobility disorders => Topic started by: bluebirdmgc on January 30, 2005, 09:02:10 PM

Title: Poll - What joints do you splint/brace? Any advice?
Post by: bluebirdmgc on January 30, 2005, 09:02:10 PM
Hi everyone! I was just diagnosed with hypermobile EDS (type III) and I was wondering how many EDS'ers wear braces and on which joints. I'm not entirely sure which joints it is possible to brace/splint - I know that one can brace fingers, wrists and knees...
I'd really appreciate it if you would respond to this poll to help me get some idea what's going with other EDS'ers. Also, if you have a particular brace that you would like to recommend or any tips you could share, please do!
Thanks again!

Title: Re: Poll - What joints do you splint/brace? Any advice?
Post by: Heavy_Harry on May 23, 2005, 07:51:48 AM


Currently I have two bad legs......[no fun there!]

 My right ankle has a AFO Ankle Foot Othotic for the   chronic spraining and twisting that wreaked it. and I had no much choice  reconstructive surgery no garntee that it would work  or having to wear splint to halt the harmful movement that hurts the ankle. I busted it triping on the roadside and rolled the ankle, thought it was minor and continued what I was doing.

 But at the moment I hear huge crunch and  nearly passed out after hurting it, as was jumping up and down and trying not to pass out whist at it! After few years now the ankle is stuffed most ligments are so lax the the joint can come out. I sometime I have to remove the splint rub the are  and force it in again and sometimes you can hear the joint popping or crunching. Sometime if been out for a while really  it hurts like s***** when I get it in again!

The left knee.....don't know how I injured it but I messed it up prettygood enough to warrent having get one those expensive sport braces. I must of tore it whist breaking to a half speed run for a bus, the effort I did was so great that I ended  messing something up in that knee!  Now I wear a brace for it and they knee comes out too, when that happens it hurt's like billy'o!!
I  sometimes take the brace of and shove it back in again!

Title: Re: Poll - What joints do you splint/brace? Any advice?
Post by: stgiles16 on May 23, 2005, 12:42:51 PM
I also have 2 bum legs. I messed them both up in a car accident. I have always been very flexible. I have had my right ankle ligaments reconstructed twice after tearing them up in the accident. They have stretched out again. I can feel my foot "detach" from the ankle joint. It is not a pleasant feeling.
I wear a knee brace on both knees and an ankle brace to support the bad one.

I also hyperextend when I walk.

OS has never mentioned being hypermobile but I do think that I might be.

Title: Re: Poll - What joints do you splint/brace? Any advice?
Post by: MickeyJ on May 25, 2005, 04:45:29 PM
Heather, I work in a connective tissue research program over here in NZ and can tell you that EDS IV is very rare has incredibly severe hypermobility (far worse than I've read from your posts) and is always associated with chronic bilateral hip dislocation. Children with EDS IV are often born with both hips dislocated and have severe muscle hypotonia, struggling to walk from both issues and having poor motor control or coordination. It's very unlikely that you would have been capable of your gymnastics if you had the symptoms of EDS IV as you're muscles and hypermobile joints would simply not have taken the strain.

If you're having problems with hypermobility, see a geneticist as like most people who assume they have EDS, it's highly likely you simply have a hypermobility syndrome not an EDS, as you've given little indication of having the major other criteria for the condition beyond hypermobility. EDS isn't just having a hypermobile joint, take heed anyone who has a wobbly joint or can do party tricks, and it's very, very wrong to assume you have EDS because you're hypermobile. Oh and by the way, if you had severe EDS you'd find a way of managing the braces as they're a necessity not an option, especially in EDS IV.

Title: Re: Poll - What joints do you splint/brace? Any advice?
Post by: mickeyJ on May 25, 2005, 07:41:33 PM
Oops, please ignore my previous post (I'm working nights so very tired), I misread your post and got mixed up with the Arthrochalasia EDS type (VII).  EDS IV is actually the Vascular type of course. I would be EXTREMELY surprised if you have that type Heather as you certainly have none of the diagnostic criteria for it. EDS IV is very serious and life threatening, affecting the integrity of the blood vessels and arteries, causing major internal ruptures of arteries and organs. Hypermobility in VEDS is also limited to the digits, with none of the major hypermobility or dislocation of big joints, that you constantly complain about suffering. VEDS presents in a totally different manner to other EDS types and Hypermobility syndromes.

I have to say from what I've read of you I'd be surprised if you had even HEDS, and would stake my reputation on you not having Vascular! You have no indication of history to even suggest VEDS, and as a gymnast you would have done yourself a lot of harm in falls and tumbles if you had VEDS Heather. It one thing fitting your hypermobile joint into a diagnosis of HEDS but to suggest you have probable VEDS when you have no clinical sign, criteria or history smacks a little of hysteria to me. I don't been to sound nasty, but I think you need to concentrate on getting with your life which  appears considerably better and active than a lot of people I know with EDS, and leave the diagnosing to the experts.

Title: Re: Poll - What joints do you splint/brace? Any advice?
Post by: JenSinclair on May 26, 2005, 01:41:56 AM
Hey, about not being rude to our fellow geeks?  There are plenty of ways to say "be careful about self-diagnosis" without telling someone to get stuffed.