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» LymeNet Flash » Questions and Discussion » Medical Questions » Ehlers-danlos syndrome

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Author Topic: Ehlers-danlos syndrome
katrinab
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Has anyone heard of this syndrome? It seems to mimic alot of the symptoms of Lyme, and I was suggested to get tested for it because I am very flexible and I crack my ankles, neck, and back a lot because I feel like they get out of alignment.
Posts: 723 | From boston,ma | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
sammy
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I do have Ehler's Danlos Syndrome. It's a genetic condition. Much different than Lyme, an infectious disease.

Obviously, I've had EDS all of my life. When I was a child I knew that I was different. I had frequent joint DISLOCATIONS not just the feelings that my joints were "off".

Thankfully, for the most part, my joints would pop out causing extreme howling pain, then with some work they would pop back in. My hip is the worst offender, it will pop in and out repeatedly, even when I am walking. If it gets stuck out though then I can't walk!

Of course, the most famous part of EDS is the hypermobility. It's not just normal flexibility, it's extreme flexibility. Our bodies don't have the normal limits that other's do. For example, as a child, would your dream job have been "Cirque Du Soleil" or the Ballet or an Olympic Gymnast? EDS would support these dreams possible.

I would have trouble holding a pen and writing for a long period of time as a child and not understand why. Now I know.

Anyways, I was diagnosed by an experienced Rheumatologist. He sent me to a Geneticist who specializes in EDS to confirm the diagnosis and to figure out what type I was. They were both concerned that I might be the vascular type. If you have vascular type you are at risk of dying young.

Thank God the vascular tests were negative and I am positive for Hypermobile!

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desertwind
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I am very familiar with it.

Was tested/screened for it as part of my treatment and assessment for Chiari Malformation.

Often times people with Chiari Malformation will also have EDS which can result in cervical instability. I do not have EDS - just Chiari.

Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
wrotek
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It is incredible how much symptoms for Ehlers, everlaps with Lyme... Why ?
Posts: 633 | From Wroclaw, Poland | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
minimonkey
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I have a couple of friends who have EDS ... it's a lifelong condition that is indeed genetic. It tends to get worse with age. Lyme can indeed mimic it in a lot of ways. At my sickest, my hips were dislocating regularly... and my knees and shoulders and back were always slipping out of place. I've fully dislocated my knee twice, to the point of needing to be in a brace for months.

I do not appear to have EDS ..... I have Lyme, which can really affect the connective tissue in a way that looks a lot like EDS at times. The big difference in my experience is that my symptoms wax and wane, and definitely improve with treatment for Lyme. EDS is a progressive condition... and yes, the symptoms can be traced to childhood.

I think a lot of the overlap in symptoms comes from Lyme's affinity for collagen. EDS is a collagen disorder. Lyme loves to attack the collagen rich areas of the body.

It is possible to have both. EDS is often called a "rare" disorder... though I suspect it is more common than the medical establishment recognizes. I think it is more accurately a rarely diagnosed disorder. I personally know three people with diagnosed EDS, and a fourth that highly suspects it, but hasn't had access to the medical care necessary for a diagnosis. I hope that helps.

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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Lymetoo
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If you have EDS, then be sure to be checked for the co-mormidities Mast Cell Activation Syndrome and POTS.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94530 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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