Active journals

Pain with EDS classical type 02/03/14

  • By instrumental12 · New reply February 6, 2014
  • 7 replies
  • Today I went to get the mail from my mailbox. There is a small mound of packed snow in front of it so I had to crouch a bit to look in the mail box. The moment I crouched I felt my hip pop out then back ...

To Doctors:

  • By hbuchanan41 · New reply February 6, 2014
  • 2 replies
  • To all doctors out there most of you either don't know or don't care about EDS.I would like to find doctor who gives some attention to EDS and will help because the only reason there isn't a cure is because ...

Good day zebras

  • By alholland712 · New reply February 5, 2014
  • 2 replies
  • Hey guys, Today is kind of bumming, still sick!!!! Suckage!!!! But all your good thoughts made it easier. Thanks fellow zebras. It will get better. Let me know if you guys need a happy thought or a prayer ...

worst part of my day

  • By hbuchanan41 · New reply February 5, 2014
  • 4 replies
  • If you don't already know me I have EDS where my joints pop and I can't run thats why I hate gym. I get so tired but I have to be in it the next quarter. Gym sucks....I get made fun of and besides that ...

Bending without breaking

  • By jolene1980 · New reply February 4, 2014
  • 1 reply
  • After learning about my "condition" in 2011, I've basically ignored it until now. I am ready to share & learn; for myself and for my son who also has HEDS ...

1st tx

  • By kissfork · New reply February 4, 2014
  • 2 replies
  • Went to Ortho apt today for my 1st set of trigger point injections. Got 2 in my neck because of severe neck pain. Feels like my head weighs a thousand pounds! I'm a bobble head. Also, going to start a ...

My Lipedema/Lipoedema Journey

  • By NoKnees · New reply February 4, 2014
  • 17 replies
  • In addition to having joint problems all of my life, I have had progressively larger legs. Mine now look like the pictures you see in medical books of unfortunate medical patients who have lines over ...


  • By alholland712 · New reply February 3, 2014
  • 2 replies
  • Today is a crappy day. I am sick. You know it is hard to be sick anyways, but even harder to be sick when you already have EDS. Suckage. Right? but I am getting through the best I can. Hope everyone else ...


  • By alholland712 · New reply February 3, 2014
  • 2 replies
  • EDs can be so challenging. I get super tired in the afternoon and then have intense insomnia at night from pain. It is so frustrating sometimes. I try taking something for sleep but it doesn't usually ...

new diagnoses

  • By kissfork · New reply January 31, 2014
  • 10 replies
  • I was diagnosed with EDS-hypermobility type today, January 30, 2014. I am a little lost because I don't yet know what all to expect ...

Weather Headache

  • By okielite · New reply January 29, 2014
  • 7 replies
  • After a enjoyable pain free day, I readied for bed and as I brushed my teeth the wind hit ushering in a cold front. Now, 3 hours later, a headache continues to keep me awake. As with all of my headaches ...


  • By Liiiveinhope · New reply January 29, 2014
  • 22 replies
  • I just read a research article done by a scientist in Japan. It has been duplicated by others around the world. In it they took three containers of rice. Same amount of rice covered with the same amount ...


  • By linzyme · New reply January 28, 2014
  • 4 replies
  • Tomorrow I will be heading out to my first Genetics appointment to find out if I have Ehlers Danlos Syndrome. Of all days to travel to are Iowa State University it will be 20 degrees below zero. I really ...

Just the start.

  • By linzyme · New reply January 28, 2014
  • 1 reply
  • In July of 2011 I went to my doctors appointment. What I thought would be a typical pap- smear would turn into a tumor in my abdomen, the size of a basketball . Three years later I will walk into my first ...


  • By kdg1213 · New reply January 27, 2014
  • 6 replies
  • So, spent most of the weekend in the hospital. I had extreme EXTREME chest pain and my heart rate would not go down for anything. They kept me on a monitor and morphine overnight. It took 9.5 hours to ...

I'm starting my journey.

  • By Lucy_X_Yyvan · New reply January 27, 2014
  • 6 replies
  • I was diagnosed with Ehlers-Danlos Syndrome and Fibromyalgia when I was 13 years old. I am now 18 and searching for a cure with a very supportive family and significant other standing with me. Much love ...


  • By kdg1213 · New reply January 23, 2014
  • 34 replies
  • I have Ehlers Danlos type 3 and inappropriate sinus tachycardia. My tachycardia is out of control and my quality of life sucks. I am also in o much pain all the time. I feel so hopeless, like I just want ...


  • By lori326 · New reply January 23, 2014
  • 9 replies
  • We hold our support group meeting every third Saturday at the Lancaster wellness center/Suburban Outpatient Pavilion at 2110 Harrisburg pike, Lancaster pa from 3-5 pm. All are welcome. We share stories ...

Pain sucks!!

  • By kaytdemp · New reply January 22, 2014
  • 4 replies
  • These last few days have been absolute hell!! And that putting it lightly I'm in so much pain from this EDS I want to rip my spine out and cut off my legs I can't sleep and when I finally do fall asleep ...

I'm just getting started with you.

  • By dreamn-jane · New reply January 20, 2014
  • 1 reply
  • I don't know much about your group yet, but would like to. I'll do some exploring on your site and then see how I can best communicate within your community ...

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