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Chronic Pain Support Group, Toledo Ohio area

Whojiggy
  • By Whojiggy · New reply 1:15 pm
  • Discussion in Local support groups · 1 reply
  • We are a group of people that have different afflictions, but the common denominator is chronic pain. We've felt the isolation of not having a network of people we could talk to who could support us and ...

Rare Disease Week

SlapASmileOn
  • By SlapASmileOn · New reply 1:03 pm
  • Discussion in EDS awareness · 17 replies · Photos
  • Rare Disease Week was fabulous, tiring, productive, painful, and everything in between. SmileMommy and I spent the week in Washington, DC. As representatives of EDNF, we participated in Rare Disease Legislative ...

Applied for SSDI and I have to see a phycologist??? Is this normal?

mywackybody
  • By mywackybody · New reply 12:35 pm
  • Discussion in General discussion · 4 replies
  • I have been dealing with my doctors for so long trying to figure out what is wrong with me. I have Kaiser and I have gone through at least 10 doctors, they either quit me or I quit them because they basically ...

Headaches

Kendallo
  • By Kendallo · New reply 12:19 pm
  • Discussion in Classical EDS (Types I and II) · 2 replies
  • Hi. I'm new to seeking EDS help, so please bear with me. My daughter was diagnosed with type I/II at age two. She is now ten and has been experiencing headaches that run from her temple, to her ear, jaw ...

what do my lovely bendy family think of adjustable mattresses?

cdngirl
  • By cdngirl · New reply 11:00 am
  • Discussion in Hypermobile EDS (Type III) · 6 replies
  • Hello friends! A special hello to those on the East Coast suffering from the terrible storms! I'm thinking and praying for you - being in the west myself. Hang in there!! I am wondering any one out there ...

Exercise Tips?

turtle3333
  • By turtle3333 · New reply 8:07 am
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • I have been starting to go to the gym to try to loose some belly fat I currently stopped drinking pop but i am still having a hard time finding comfortable exercise keep in mind that my balance sucks ...

Is hands curling(clinching) a common thing with EDS?

roberta7saturn
  • By roberta7saturn · New reply 7:50 am
  • Discussion in Hypermobile EDS (Type III) · 23 replies · Photos
  • I am newly diagnosed and am on a long wait to see the physiotherapist for my hands. Is it a common thing for EDS patients to have the hands want to close up in a ball? Mine do not want to stay open and ...

EDS & chronic headaches

MMSigler35
  • By MMSigler35 · New reply 5:25 am
  • Discussion in Newly diagnosed · 18 replies
  • After several years of chronic headaches that suddenly got worse, I saw numerous regular doctors who had no answers for me but more medication to 'try', I wanted answers not just medication to mask the ...

where are doctors to help?

Krily
  • By Krily · New reply 4:17 am
  • Journal · 34 replies · Photos
  • Hello, I am a 38 years old woman from Austria and suffer from EDS hypermobile type. In Austria no doctor has experience in EDS. I am completely alone. Nobody can understand my pain and troubles. Last ...

Collagen supplements

somnomania
  • By somnomania · New reply 4:08 am
  • Discussion in Diet and nutrition · 23 replies
  • Hi, all. I have chronic issues with things in my neck and head slipping out of place thanks to the EDS, but at least I have a fantastic chiropractor who's worked miracles with my various problems. I saw ...

EDS doctors in Pennsylvania?

solevad
  • By solevad · New reply yesterday at 11:59 pm
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • My wife has several types of EDS and related conditions. We are currently moving to Pennsylvania from California. We will be living in State College, and I will be working at Penn State. Does anyone know ...

EDS doctors in Pennsylvania?

solevad
  • By solevad · New reply yesterday at 11:01 pm
  • Discussion in General discussion · 4 replies
  • My wife has several types of EDS and related conditions. We are currently moving to Pennsylvania from California. We will be living in State College, and I will be working at Penn State. Does anyone know ...

Should Tubes Be Tucked In Pants?

Duvie
  • By Duvie · New reply yesterday at 8:55 pm
  • Journal · 34 replies · Photos
  • It might feel natural and seem like a great idea to tuck your long tube in your pants, bra, bikini, or wherever. However, as we soon found out, it wasn't so great. No medical professional of any kind ...

A Dysautotonomia Day (like many)

brokenbaby
  • By brokenbaby · New reply yesterday at 5:50 pm
  • Discussion in General discussion · 2 replies
  • I just HAD to share this...can anyone relate ...

Need diagnosis by doctor in New England or NY

Elle88
  • By Elle88 · New reply yesterday at 5:43 pm
  • Discussion in General discussion · 11 replies
  • This is a plea to everyone who has already been diagnosed with EDS (any type). If you are in New York or any of the New England states (Connecticut, Rhode Island, Massachusetts, New Hampshire, Vermont ...

Need a doctor in Albuquerque

momofEDSgirl
  • By momofEDSgirl · New reply yesterday at 5:33 pm
  • Discussion in Hypermobile EDS (Type III) · 3 replies
  • My daughter has EDS, and we are having the hardest time finding a doctor who knows anything about it. We feel like a pinball between the geneticist, the pediatrician and the cardiologist. We are looking ...

Does anyone have chronic vertigo?

MitoKids
  • By MitoKids · New reply yesterday at 5:33 pm
  • Discussion in Hypermobile EDS (Type III) · 21 replies
  • My two daughters (ages 16 and 18) have EDS Type III, they have autonomic issues, mito issues, but one of the most debilitating is their chronic vertigo. I am trying to place this amongst their EDS and ...

EDS vs JHS

emmewien
  • By emmewien · New reply yesterday at 5:25 pm
  • Discussion in Hypermobile EDS (Type III) · 37 replies
  • Hello. So I've been recently diagnosed with both JHS AND Hypermobility EDS by two different doctors. I've been trying to do some research to figure out what exactly is what and I haven't found many answers ...

Medical Massage

Lifeisasong
  • By Lifeisasong · New reply yesterday at 5:11 pm
  • Discussion in Hypermobile EDS (Type III) · 14 replies
  • Has anyone tried medical massage to help with the pain? I feel like it could help me, but was curious if anyone else has experience with it ...

Sources sought for article about medical costs

John2
  • By John2 · Posted yesterday at 5:07 pm
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 3/2/15 Dear members, A journalist researching an article for the Los Angeles Times newspaper contacted us today seeking to interview Southern California ...

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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.