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Foam Rolling - The do's and dont's for EDSers

  • By Nuno-z · New reply 7:09 am
  • Discussion in Pain management · 6 replies
  • Hi everyone, hope you've been having a good day so far. The title of this discussion might lead you to believe I am going to tell how to foam roll, but I am actually interested in your opinions/experiences ...

What do you wish your doctor knew?

  • By Brian · New reply 6:04 am
  • Journal · 489 replies · Photos
  • Dear members, Some of you have seen the story of the schoolteacher who asked students to anonymously finish the sentence, “I wish my teacher knew…” in an effort to get the children to share something ...

ARTICLE: Joint Mobility & EDS, New Data Based on 232 Cases

  • By Cotntail · New reply 5:24 am
  • Discussion in Bones, joints and muscles · 16 replies
  • "Hypermobility in Ehlers-Danlos syndrome was the first historical finding, and is still deemed by many to be a requirement for diagnosis..." According to this French study, it ain't necessarily so. The ...

Back pain from sleeping

  • By Audun · Posted 4:39 am
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • Hello! (: For many years I've been unable to sleep on my back (I'm 20), because I always wake up in pain if I do. In the last couple of years, all my general symptoms have become a lot worse, and I've ...

Stomach Pain is Nerve Pain Dr Says???

  • By catchingstars · Posted 4:06 am
  • Discussion in General discussion · 0 replies
  • What do you think? My 18 year old daughter has EDS and dysautonomia. She has chronic sever stomach pain and her GI has done all the testing she can think of, which indicates everything is structurally ...

I just found out I probably have EDS - HELP

  • By Paley · New reply 2:25 am
  • Discussion in Classical EDS (Types I and II) · 3 replies
  • Oh my goodness, where to begin. Well, I am feeling completely overwhelmed and defeated. Three years ago I was in a bad car accident. I never saw the guy coming. I was already dealing with TMD when this ...

What keeps you "fighting the fight"?

  • By romeyrider · New reply 1:01 am
  • Discussion in General discussion · 32 replies
  • It would be so easy to just quit and be done with it all. Who or what keeps you going ...

New muscle or nerve issue

  • By dazymammygami · New reply yesterday at 11:28 pm
  • Discussion in Hypermobile EDS (Type III) · 2 replies
  • I am having some major issues that's been going on for a few weeks but it's getting more and more frequent. I can be holding something and my hands just drop, my head is doing it also, like I'm nodding ...

Article: Complications, surgical repair of syndromic scoliosis

  • By ZipperedZebra · Posted yesterday at 11:21 pm
  • Discussion in Bones, joints and muscles · 0 replies
  • Open Access = full article freely available; refers to complications of EDS (and other diseases) in surgical treatment of scoliosis. 10/1/14/abstract Complications ...

Just needing some understanding

  • By jessicaxxx · New reply yesterday at 10:44 pm
  • Discussion in General discussion · 9 replies
  • I'm currently have a hard time. I just need to talk to someone who might be able to shed some light on what I was going through. I tried the website 7cupsoftea today, and one guy did understand, but unfortunately ...

Anyone who has NOT had EDS related surgeries?

  • By platysar · New reply yesterday at 10:32 pm
  • Discussion in General discussion · 18 replies
  • I've been wondering the opposite of the question B9S4 asked the other day - is there anyone on here who has been diagnosed with EDS and has not had any EDS related surgeries? I'm going to meet with the ...

ENFit Connections With Only One Hand

  • By Duvie · New reply yesterday at 9:17 pm
  • Journal · 28 replies
  • Reading some of the comments, I've realized that there is going to be a huge problem connecting the new ENFit connections for patients who only have the use of one hand. How are they going to screw the ...

Benefits of official diagnosis

  • By Trayc757 · New reply yesterday at 7:43 pm
  • Discussion in General discussion · 6 replies
  • I am pretty sure that one of my coworkers has EDS. She even has family that has been diagnosed with EDS. She just asked me what would be the benefit of getting an official diagnosis. I drew a blank (brain ...


  • By ritmo · Posted yesterday at 7:39 pm
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • Hello all :) I just wanted to post some updated information I have been able to get from research. And to thank again Thiathy, MichP, Emma, and ZhooZhoo who gave me invaluable information on my first ...

"Wait, so this isn't normal?!"

  • By ginger8888 · New reply yesterday at 6:39 pm
  • Discussion in General discussion · 4 replies
  • About 12-13 years ago (around the age of 13) I started getting a lot of joint pain, particularly in my hands and knees, along with chronic migraines. My parents started noticing something was amiss when ...

Faith in God

  • By jande226 · New reply yesterday at 5:57 pm
  • Discussion in Parents of children with EDS · 34 replies · Photos
  • As a mother with 3 beautiful daughters diagnosed with eds, I wouldn't be able to have hope if it weren't for God. He is the one who gets us through each and every day ...

Your not alone

  • By kuroeyuki · Posted yesterday at 5:44 pm
  • Journal · 0 replies
  • I was diagnoised with Elhers when I was 12 and It is a struggle everyday. From the begining I knew I was different. I never learned to crawl, I couldn't run, and I had no sense of balance. I was diagnoised ...

Question about Vascular EDS and Club Feet

  • By Whojiggy · New reply yesterday at 5:08 pm
  • Discussion in Vascular EDS (Type IV) · 20 replies
  • I read having club feet is associated with vascular type. My Paternal Grandmother was born with both feet being severely clubbed. She also had a Daughter (my Aunt) who was born with one clubbed foot ...

do I have it

  • By forestwindofmagicaln · New reply yesterday at 4:16 pm
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • Hi my name is Zoe and I am wondering If I have EDS. I am 14 years old and have joint pain that interfers with my daily life but no doctor can figure out exactly why. one doctor said my joints are VERY ...

Type 3 without dislocations

  • By Oct9th04 · New reply yesterday at 12:37 pm
  • Discussion in Hypermobile EDS (Type III) · 47 replies
  • I am wondering how many zebras are diagnosed with type 3 EDS (a clinical dx) and only suffer from the co-morbidities of type 3 instead of the frequent dislocations and subluxations. I was diagnosed 2 ...

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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.