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#1
Mar 24, 2009, 02:18 PM
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This is just a shot in the dark on this one. Was wondering if there were any other EDS suffer's here at PC?
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Back, I've lost months, months ! |
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#2
Apr 19, 2009, 03:50 AM
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Sorry no one has responded - hoping you find some relief in talking
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#3
Apr 22, 2009, 01:38 PM
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Thank You for dropping me a line Rhapsody. Ehlers-Danlos is such a rare disorder I wasn't sure if there might be some others here with it. Most of the EDS sites stay quiet. Just seeing if anyone might be here at PC. Being rare I wasn't dx'ed until 2006 after breaking my ankle. I actually got a physical therapist who knew of the disorder. He looked through my medical records and had my ortho doc to run a test that came back EDS. I had been told I had MS and had started treatment with no relief of my symptoms. There is no treatment for EDS. The only thing to do is manage symptoms. Bracing my joints, trying to manage pain and my eyes have been effected as well, so I try not to strain them. We made our vacation plans the other night and my husband and I decided that it would be best to get a handicapped hotel room. We decided that it would just be safer in the bath that way. Just dealing with things having to check now. Not used to it.
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Back, I've lost months, months ! |
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#4
Jun 06, 2009, 08:08 AM
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Hello
I just responded to another thread of yours ~ yes i have Elhers Danlos Syndrome ~ benign hypermobility syndrome, fibromyalgia and chronic fatigue syndrome. There definately dont seem to be many of us about, i was told that it was rare lol! If you want to chat ~ drop me a line  Tabbi
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**Shadowsilence** All that we see or seem is but a dream within a dream....change is eternal, perpetual and immortal. |
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#5
Jul 24, 2009, 07:40 AM
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Yep another EDSer here, trying to cope with anxiety disorder and bipolar tendencies, not much known about EDS in Australia.
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#6
Jul 24, 2009, 06:50 PM
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I was just wondering what Ehlers-Danlos Syndrome is?
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I'm here to deal with my "issues". 
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#7
Jul 24, 2009, 08:30 PM
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http://www.mayoclinic.com/health/ehl...CTION=symptoms
I do not have this syndrome. But I do have hypermobility of my joints, and connective tissue. It's the reason I didn't die in the industrial accident, and it's also the reason I cannot fully heal from it. I live with Chronic neuropathic myofascial pain. Never heard of this syndrome before now. I hope PC can give you the support you all need. Gentle 
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 Rmdctc
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#8
Jul 26, 2009, 09:27 AM
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I don have ED syndrome.. but I do have some kyphoscoliosis in my spine. Not severe though as seen in that form of ED
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This is an old thread. You probably should not post your reply to it, as the original poster is unlikely to see it.|
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