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Ehlers-Danlos Support UK
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Hypermobility Syndrome or EDS

I am new here and after seeing my rheumatologist for my RA, he diagnosed me with hypermobility syndrome too.

I am just wondering what the difference between this and EDS is? How do I know which one I have?

I have painful joints, fatigue and headaches, but I think that's just because of my RA.

Thanks in advance!

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Peopleseem to be divided on this EDS/ Hypermobility/ EDSHDS3 thing and in the states they tend to think of it as the same thing and have ditched the Hypermobility label. Now they seem to be having a spectrum of EDS where hypermobility lies on it. The UK isn't a country that really understands EDS/HMS and as ther's no cure there's no real funding or research sadly. It's a frustrating condition which can cause so many knock on effects. I have gastroparesis as a result of it, and have 24/7 pain... I hate it. I wish you well with getting support and managing it.

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The international experts and researchers decided a few years ago that as there is no clinical difference between Hypermobility Syndrome and Ehlers Danlos Hypermobility type (type 3 is a previous name for it) that they were the same thing. But you have to remember there are several others types of Ehlers Danlos Syndrome and they are not the same as Hypermobility Syndrome.

However earlier this year a new nosology was published and there is now Hypermobility Spectrum Disorders and hypermobile Ehlers Danlos Syndrome. The diagnostic criteria for hEDS was tightened up and others that don't meet the criteria for hEDS will get the diagnosis of HSD. This doesn't make those with HSD less affected by their condition, it is just a slightly different criteria.

But as ever it takes those on the front line time to catch up with changes. The fact that some were still using EDS-3 means they have a lot of catching up to do!

So to answer your question, there is no difference between Hypermobility Syndrome and Ehlers Danlos Syndrome Hypermobility type (formerly known as EDS-3). However the new definitions have changed, so the choice should be between hEDS and HSD.

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In my experience Dr hakim and the new criteria use family with diagnosed eds or you having multiple full dislocations as one of the key differences to give a heds diagnosis. It seems to me that they wish to label the more severe as having heds and the lesser affected as hypo spectrum. Everything else could possibly be the same/similar. I had joint hypo syndrome diog originally then heds when things worsened.

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Thanks for the reply, that helps to clear things up for me! It gets so confusing with so many different names for things.

I wouldn't say mine is particularly bad and as far as I know, my joints don't dislocate, they just bend more than they should.

My main issue is with my ankles, I will be walking along and then my ankle will give way and I will fall over. I never get any warning and it can be quite dangerous as I don't know when I will fall over. The worst was on a train platform, if the train hadn't been there, I would have fallen into the tracks.

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My ankles do that, a lot. It is called subluxation, which is a partial dislocation - your ankle joint disengages but then snaps back into place again. It is indeed dangerous and on one fall I managed to drop my infant son, he hit a concrete path and suffered a fractured skull. I didn't spot the pattern until many many falls and broken things later, many years later when the pain had hit me and then become unbearable.

The way to manage it is to expect it - be very careful on both even and uneven pathways, most importantly wear only flat shoes as heels of any kind increase instability, use two walking poles if you enjoy walking. You can buy straps to go around your ankles to strengthen them which helps reduce the frequency. I also found that the more lightweight the footwear, the less it happened. But yes - walking on perfectly flat ground it is just as likely to happen as walking up a rocky hillside.

So your joints do dislocate/sublux, but like me, you didn't know it.

I really wish this site had been available when I was going through it all, and having nobody to verify that I wasn't imagining it all!

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