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

Blue knees

NalaRosie
  • By NalaRosie · New reply 8:39 am
  • Discussion in Hypermobile EDS (Type III) · 1 reply
  • Hi there! Anyone else have circulation issues in their legs? Particularly knees that are blue even when not when really cold outside...if so anything that can be done about it ...

Extreme Malaise (If that's what you could even call it.)

OhKK
  • By OhKK · New reply 8:27 am
  • Discussion in Pain management · 1 reply
  • I've recently had a total shoulder arthroscopy on my left shoulder. I had the same procedure done almost two years ago on my other shoulder. Since then, I noticed that I have become a progressively worse ...

Running with hypermobility type EDS

Lifeisasong
  • By Lifeisasong · New reply 7:51 am
  • Discussion in Exercise · 22 replies
  • I have the hypermobility type of EDS but I love running and my friends do, too. I've found, though, that when I run long distances, my joints hurt for days afterwards, so I've resigned myself to the elliptical ...

Need Colorado Springs doctor for EDS

may05
  • By may05 · New reply 5:11 am
  • Discussion in General discussion · 1 reply
  • I need a doctor that will manage my HEDS that is is Colorado Springs, Colorado . Does anyone know if there is a doctor in the Springs ...

Diagnostic process... advice?

YogaJones
  • By YogaJones · New reply 3:02 am
  • Discussion in Newly diagnosed · 7 replies
  • Hello, I am new here and was recently referred to a rheumatologist by my general practitioner for further assessment. I made two appointments with two different rheumatologists, one local just to be seen ...

Do all eders get nausea

margann222
  • By margann222 · New reply 2:46 am
  • Discussion in Hypermobile EDS (Type III) · 7 replies
  • Hi all I seem to have a lot of nausea is that the normal thing with eds3 I do get stomach pain, it seems to start in the afternoon and sometimes early morning, it just makes me feel so ill, thanks for ...

Anyone Experiencing Feeding Tube Leakage or Clogs

Duvie
  • By Duvie · New reply 12:31 am
  • Journal · 24 replies
  • Hello Everyone, Feeding tube leakage can be a nightmare if, like us, were not informed in how to reduce the risk or what products to use in eliminating the skin irritation caused by stomach acid eating ...

anyone else sublux more with age

stephijay
  • By stephijay · New reply yesterday at 11:37 pm
  • Discussion in Hypermobile EDS (Type III) · 79 replies
  • I wonder if anyone else has noticed they sublux more with age? I am just shy of 40 and hadnt had a chronic problem w subluxing since i was a teen. now my shoulder and hip do on a daily basis. is this ...

EDS and ear pain from wind/cold weather

tracylockwood
  • By tracylockwood · New reply yesterday at 11:19 pm
  • Discussion in Eyes, ears, nose and throat · 50 replies
  • Women on both sides of my family, including me, experience horrible, head splitting pain from wind or cold air in our ears. I can't go out without ear plugs or a scarf for protection. When I google this ...

Fall cause hip pain

cej0506
  • By cej0506 · New reply yesterday at 10:02 pm
  • Discussion in Classical EDS (Types I and II) · 2 replies
  • Hello, I am 18 years old and have Classical EDS. I had a fall on Thursday when I was out. I landed on my knees and shoulders and my hip was hurting for the rest of the night. I worked 5 hours as a waitress ...

Where do I purchase and fit finger splints?

KairiAnnalea
  • By KairiAnnalea · New reply yesterday at 9:09 pm
  • Discussion in Hypermobile EDS (Type III) · 1 reply
  • Hi EDSers and co. I am in need of some finger splints. I'm an artist and the pain caused by the hyperextension in my fingers is preventing me from doing what I love. Just wondering if anyone has any recommendations ...

3 year old with eds

Daniwheeler2330
  • By Daniwheeler2330 · New reply yesterday at 8:39 pm
  • Discussion in Hypermobile EDS (Type III) · 12 replies
  • My son was diagnosed with type 3 about 6months ago. I was always told it's a collegan and connective tissue problem. Today I had to go to er Bc my son decided he didn't want to be on a ride anymore and ...

Optical Neuritis

klaget48
  • By klaget48 · New reply yesterday at 7:54 pm
  • Journal · 7 replies
  • About 8 months ago my ex-wife starting having vision problems and within one week she was completely blind. She has had every test imaginable and they can not find a cause. So far they labeled her as ...

2014 Conference Presentations on YouTube

SlapASmileOn
  • By SlapASmileOn · New reply yesterday at 6:22 pm
  • Discussion in General discussion · 16 replies
  • For the first time ever, audio recordings are available for some of the presentations from the 2014 EDNF Conference. I will update this list as more become available. Dr. Clair Francomano spoke at the ...

Mayo Clinic Results a bit Mixed (more like tartar sauce, if you will)

michaelb1986
  • By michaelb1986 · New reply yesterday at 3:23 pm
  • Discussion in General discussion · 8 replies
  • Hi all. I just spent the last week at the Mayo Clinic in Minnesota, and wanted to give you an update on what it was like, and some guidance on how to ensure a quality experience should you decide to go ...

steroid injections

tiggerlilly123
  • By tiggerlilly123 · Posted yesterday at 1:42 pm
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • I was wondering, I had injections in my arm for pain and basicaly zero grip in my hands. It seemed to really help for a while but it stopped working about a month ago. When the pain came back it appearred ...

Symptoms?

ChibiChirry
  • By ChibiChirry · New reply yesterday at 11:55 am
  • Discussion in Classical EDS (Types I and II) · 8 replies
  • I've always known I've had EDS(Classic type), but I've never known much about it. Aside from stretchy skin, being flexible, bruising and cutting easily I don't know much. I've tried Google but it only ...

Hip issue

Jasaho
  • By Jasaho · Posted yesterday at 10:17 am
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • Good morning, I was wondering if anyone had more issues on one side of their body than the other. My left side ( non-dominant ) seems to have much more pain, dislocation, and subluxations than my right ...

Help, ladies!

Kaylalaprincess
  • By Kaylalaprincess · New reply yesterday at 4:32 am
  • Discussion in General discussion · 15 replies
  • Okay ladies, this is a question for you. I have eds type 3 and I'm 16( almost 17) and I never get super regular periods but I never really cared. Except I havent gotten it in like 4 months and I leave ...

Anybody know what this Nuclear melt down feeling is

Doublezebra
  • By Doublezebra · New reply July 27, 2014
  • Discussion in Hypermobile EDS (Type III) · 11 replies
  • Awesome People, Sometimes if I am walking (substitute hobbling, limping, zombie walking) in the grocery store or if I have been in the therapy pool (96F), all the sudden my whole body will feel weak and ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support EDNF

Help the Ehlers-Danlos National Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Ehlers-Danlos National Foundation

Discussion topics

Community leaders

Inspire others

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.