Active journals

!!!!!!!!!!!!!!!!!!!!!!!!!!!!

kissfork
  • By kissfork · New reply February 8, 2014
  • 11 replies
  • It seems the pain gets worse every single blooming day! My 1st pain clinic appointment can't get here soon enough. Nothing over the counter seems to ease me up at all. Does anyone have any other suggestions ...

UGG...WINTER

hbuchanan41
  • By hbuchanan41 · New reply February 8, 2014
  • 1 reply
  • My joints already get very sore but in winter they hurt so bad I am going to find a heat pack soon but it's so cold i can't wait to grow up and move out of Indiana the worst parts of my body are lower ...

Struggle with feeding

Ellesbelles
  • By Ellesbelles · New reply February 6, 2014
  • 17 replies
  • I'm sorry I haven't been around for a while. In October and November I had an 8 week stay. The goal of the stay was to put on enough weight and have tests done so I was ready for my Gastrostomy. It proved ...

News

kdg1213
  • By kdg1213 · New reply February 6, 2014
  • 31 replies
  • So we have decided to go ahead with the surgery. I think it is the right decision, but it is still scary. Tomorrow the doctor will call me to schedule it. This surgery has a little bit higher stakes because ...

Pain with EDS classical type 02/03/14

instrumental12
  • 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:

hbuchanan41
  • 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

alholland712
  • 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

hbuchanan41
  • 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

jolene1980
  • 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

kissfork
  • 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

NoKnees
  • 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 ...

2/3/14

alholland712
  • 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 ...

EDS

alholland712
  • 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

kissfork
  • 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

okielite
  • 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 ...

Amazing!!!

Liiiveinhope
  • 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 ...

Scared

linzyme
  • 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.

linzyme
  • 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 ...

ugh

kdg1213
  • 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.

Lucy_X_Yyvan
  • 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 ...

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