The Ehlers-Danlos National Foundation Support Community connects patients, families, friends and caregivers for knowledge, support and inspiration... More about this group

torn ligaments

lemom3
  • By lemom3 · New reply 7:47 pm
  • Discussion in Bones, joints and muscles · 1 reply
  • This is the most damage I've done from a fall in quite awhile. I fall a lot so didn't think much of it til knee kept going in and out from being able to hold weight. So finally went to Dr. Strained medial ...

failed.

SophieLouise
  • By SophieLouise · New reply 7:44 pm
  • Discussion in Hypermobile EDS (Type III) · 25 replies · Photos
  • As you all probably guessed since i'm posting, My attempt failed. Thank you all for the support. I'm hooked on to a 24 hour drip ...

Symptoms of Ehlers-Danlos Syndrome

KayKat
  • By KayKat · New reply 7:24 pm
  • Discussion in General discussion · 1 reply
  • I see posts but they don't describe what I have. What are other symptoms will I be getting. Up to now, I have had two aneurysms, internal and external bleeding and double jointed since I was a child ...

Wrist pain

Renyjen
  • By Renyjen · New reply 6:47 pm
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • Hi has anyone out there had problems with rigid custom made wrist splints ? I have a wrist injury from 2.5 years ago where I slipped on gravel fell and put my hand out to save myself. It has been a problem ...

goodbye

SophieLouise

Humbled by Pain

Zyp
  • By Zyp · New reply 2:40 pm
  • Journal · 6 replies
  • Humbled by Pain As my body breaks down and crumbles, collapses into and upon itself, I defend this dwelling of pain and decay with inner strength born of necessity. I steady the walls with new self control ...

Need Help Figuring Out Specific Pain

ReiRei
  • By ReiRei · New reply 12:28 pm
  • Discussion in General discussion · 9 replies
  • Hello!! First, I want to say thank you from the bottom of my heart to everyone on here. I've never posted much, but I've read a ton of posts and you are all truly my support group. No one understands ...

What helps me in day-to-day living

afterenglit
  • By afterenglit · New reply 1:51 am
  • Discussion in General discussion · 13 replies · Photos
  • I thought I'd start a very practical discussion (unless one already exists that I'm unaware of) where members can post photos or detailed explanations of ways/things/furniture that they have found or ...

EDS & Addiction. A new way of life!

Denisse
  • By Denisse · New reply 1:12 am
  • Journal · 9 replies
  • Yesterday was my birthday number 23 and this year I wanted to start sharing with you my last months. I was diagnosed with EDS type 3 after years of searching and countless surgeries and problems in each ...

need ophthalmologist

j3ssed5
  • By j3ssed5 · New reply yesterday at 7:46 pm
  • Discussion in Hypermobile EDS (Type III) · 10 replies
  • My daughter has EDS. She is in her late 20's and was diagnosed just a few years ago. Recent, she has been having a recurrent burst bod vessel in one eye. We're concerned it may be EDS related but haven't ...

in search of EDS knowledgeable GI doctor

AnzR
  • By AnzR · New reply yesterday at 2:37 pm
  • Discussion in Newly diagnosed · 16 replies
  • My 10 year old daughter was recently diagnosed with eds type 3. She has suffered from severe constipation since 18 months of age. She has been followed by GI doctors which do not have knowledge of EDS ...

What to ask for in a sleep study?

BendyClaire
  • By BendyClaire · New reply yesterday at 9:14 am
  • Discussion in Hypermobile EDS (Type III) · 6 replies
  • I have been fascinated to read material and see videos by Dr Alan Pocinki about chronic pain and sleep problems. It makes sense! This area is new to me (though the pain and sleep problems aren't!) and ...

Foot and ankle issues

glades
  • By glades · New reply yesterday at 12:56 am
  • Discussion in Hypermobile EDS (Type III) · 3 replies
  • Hi. I am trying to learn of any doctor recommendations for painful flatfeet in children. Which pediatric orthopaediic or podiatrists has anyone used ...

were you rearended/gentle tap auto accident and still suffering?

rachelarmstrong
  • By rachelarmstrong · New reply November 26, 2014
  • Discussion in General discussion · 3 replies
  • Calling all EDSers...especially attorneys, researchers and Zebrafolks injured in rearend collisions. Please send me any experiences you have had. I was "gently rearended" a few years ago but the negative ...

A little forum humour

CentaurInaChinashop
  • By CentaurInaChinashop · New reply November 26, 2014
  • Journal · 26 replies
  • I've been noticing some posts over the last little while that seemed to have a degree of negativity. Either in the post itself, or in the replies. I am usually very impressed with the degree of helpfulness ...

essential oils, anyone have experience using these for EDS symptoms?

kmfleet
  • By kmfleet · New reply November 26, 2014
  • Discussion in Pain management · 30 replies
  • I have HEDS, and am 43 years old......this time of the year my pain seems to get worse. Cold weather really wreaks havoc on most of my body, but especially my hands, hips, shoulders and neck. I have more ...

Myofasial Pain Treatment Center near Boston

jratto
  • By jratto · New reply November 26, 2014
  • Discussion in Pain management · 8 replies
  • My daughter was recently diagnosed with EDS type III. She attends college at Boston College. I had heard about the Myofascial Pain Treatment Center near there and wondered if anyone had tried it? She ...

EDS Support Group in Alabama?

kaiann
  • By kaiann · New reply November 26, 2014
  • Discussion in Local support groups · 4 replies
  • Hi there! I live in Birmingham, Alabama, and have noticed that there's no Alabama support group listed on the EDNF site. Are there others out there with EDS who are interested in getting together? I can ...

For those with a slightly twisted sense of humor

lanettemj
  • By lanettemj · Posted November 26, 2014
  • Discussion in Humor · 0 replies
  • Ehlers danlos syndrome - EDS - Every Day (can) Sucks! Bumper sticker, tee shirt, tattooed on my forehead, any other ideas? I see it as a helpful way for those who may not "get it" or simply educating ...

SSI Disability

Unglued
  • By Unglued · New reply November 26, 2014
  • Discussion in Parents of children with EDS · 1 reply
  • My 18-year-old daughter was recently diagnosed with EDS, Type II. All those things she complained about last year right about now, that caused her to drop out of the 12th grade, was actually diagnosed ...

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About this community

The Ehlers-Danlos National Foundation Support Community connects patients, families, friends and caregivers for knowledge, support and inspiration. This community is sponsored by the Ehlers-Danlos National Foundation, an Inspire trusted partner.