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Strange new Neurological symptom... my doc is going to think I am wacky!

mywackybody
  • By mywackybody · New reply 2:55 pm
  • Discussion in Neurologic issues · 6 replies
  • Ok. I have to talk about this and I know that someone out there has to have experienced this. Over the last week I have been lying in bed trying to fall asleep. (I have had myoclonic seizures especially ...

Menstrual Cycle Management

darmelmoon
  • By darmelmoon · New reply 2:51 pm
  • Discussion in General discussion · 5 replies
  • I'm curious how my fellow Zebras deal with their menstrual cycles. Tampons were always painful for me, and I tend to randomly develop rashes in response to pads. The SoftCup or Instead put too much pressure ...

Question about Vascular EDS and Club Feet

Whojiggy
  • By Whojiggy · New reply 2:26 pm
  • Discussion in Vascular EDS (Type IV) · 2 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 ...

blah

Roseinflorida
  • By Roseinflorida · Posted 2:09 pm
  • Journal · 0 replies
  • Today is another day of being exhausted, hurting all over, and basically wishing I could get up off this couch and be the energetic productive person I once was. I used to be someone I was pround of ...

EDS blog: "Hypermobility and Me"

Ragdoll88
  • By Ragdoll88 · New reply 2:06 pm
  • Journal · 8 replies
  • I've started a blog about my experience with EDS - I'm hoping to get it to be pretty expansive, and I want to write lots of articles covering a different topic every week. For now, it's just an intro ...

Broken veins and hair loss.

Plsntgrl
  • By Plsntgrl · New reply 1:07 pm
  • Discussion in General discussion · 7 replies
  • So, sometimes the veins in my fingers just break and leak, causing pain and swelling. Last night, I was just putting lotion on my hands and the veins on the top of my hands started leaking. The top of ...

Excruciating Tailbone Pain

Getbent
  • By Getbent · New reply 12:59 pm
  • Discussion in Hypermobile EDS (Type III) · 11 replies
  • Hello my fellow bendies. Please - if anyone has had this happen to them or have found a solution - please let me know an idea of a solution. My tailbone had been hurting me for over two months now. Excruciating ...

I'm probably not the only one.

kaluah02
  • By kaluah02 · New reply 12:51 pm
  • Discussion in Family, friends and caregivers · 6 replies
  • Omg so I'm having mixed feelings this morning. My diagnosis has had a trickle down effect on my family. I wasn't diagnosed until this year and I am the only one in my family. I have eds with marfanoid ...

Cake by Jennifer Aniston

DJGirlSix
  • By DJGirlSix · New reply 12:51 pm
  • Discussion in Humor · 2 replies
  • Has anyone seen Cake featuring Jennifer Aniston? For those of us feeling alone and traumatized - it may be comforting: https://www.youtube.com/watch?v=P3IsUOSH lnU I'd love to hear some reviews ...

Art Therapy or not?

Sandyroad
  • By Sandyroad · New reply 12:10 pm
  • Discussion in Pain management · 10 replies
  • I have discovered art therapy helps my pain and keeps me more focused. It helps me relax my body for less stress because of the pain, helps me feel that I have a purpose. I have found some professional ...

Ulnar Nerve Entrapment/Subluxation

cfree
  • By cfree · New reply 12:05 pm
  • Discussion in Hypermobile EDS (Type III) · 22 replies
  • Anybody ever have trouble with their ulnar nerve? According to my doctor mine is subluxing (hopping back and forth over my "funny bone"), which is causing swelling and entrapment. Surgery pending to release ...

Hi and need help finding ding Dr's in Texas

Melmama7
  • By Melmama7 · New reply 11:45 am
  • Discussion in General discussion · 3 replies
  • Hi my name is Melanie Williams and I am looking for a Dr. familiar with EDS in the Midland/Odessa/Lubbock Texas area. I'm new to this and need some answers ...

Finally got diagnosed after 58 years!

Janetville
  • By Janetville · New reply 11:23 am
  • Discussion in Hypermobile EDS (Type III) · 12 replies
  • After a dozen surgeries and seemingly unrelated problems my whole life, happened upon information on Hypermobility and EDS last September. After tons of research I realized there was a very good chance ...

could this be gastroparesis?

craziwrld
  • By craziwrld · New reply 11:00 am
  • Discussion in Hypermobile EDS (Type III) · 3 replies
  • I have heds, and have been having gastrointestinal issues for basically my whole life. I have IBS already. But I frequently have times when it feels like I'm not digesting my food right. There will be ...

In Dysautotomia what causes your pupils to dilate?

mywackybody
  • By mywackybody · New reply 10:50 am
  • Discussion in Eyes, ears, nose and throat · 24 replies
  • It's funny what we notice and find out that it is a symptom of the disorder. I have had weird things show up all the time, most of the time I just shake my head and go by the rule "If it doesn't hurt ...

How do EDS symptoms progress

jhayden
  • By jhayden · New reply 9:50 am
  • Discussion in Parents of children with EDS · 2 replies
  • A Sports therapist suggested testing my 14 yr old daughter for EDS. She takes a holistic approach. My daughter was diagnosed with mild hip displasia as an infant. We double diapered her for a month and ...

Austin, Texas EDS Group

Pound-erosa
  • By Pound-erosa · New reply 7:48 am
  • Discussion in Local support groups · 6 replies
  • Hello EDSers! I am hoping that you had nice Holiday Season and that the new year will bring health and happiness to you and your family. Our next Austin EDS Support Group will be January 10, 2015 at St ...

I know EDS is genetic, but could an infection "trigger" it?

laxynotlazy
  • By laxynotlazy · New reply 4:04 am
  • Discussion in General discussion · 20 replies
  • Hi (I recently wrote about my knee) Obviously EDS has a large genetic component. But I wonder if anyone else with significant hyper-mobility issues ever experienced a sudden explosion or sudden worsening ...

Anyone know a good doc with kaiser? California

mywackybody
  • By mywackybody · New reply yesterday at 10:59 pm
  • Discussion in General discussion · 3 replies
  • I am stuck with kaiser. Does anyone know any docs with kaiser in California (pref around sac) that are competent? I have autonomic dysfunction, poss pots, 40+ white matter lesions unknown etiology, neurological ...

eds

skybug912
  • By skybug912 · New reply yesterday at 10:58 pm
  • Journal · 1 reply
  • i have eds. when i was in 5th grade i broke from my shoulder down to my wrist including wrist the lower bone was cracked this created a lot of complications for me in gym 6-8 i struggled i am in pt and ...

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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.