Smell Sensitivity

  • By Alexhunterus · Posted January 1, 2014
  • 18 replies
  • I've recently gotten very sensitive to smells. I first noticed it at the EDS group I was at last month. We meet in a cafe/bookstore and one of the workers cleaned the table behind us and the smell made ...

Proving EDS won't change your life-oh really, guess again!

  • By ezits · Posted December 30, 2013
  • 1 reply
  • Hey CM: Trust me: the 1st, 2nd & maybe the 3rd time PT seems weird! I was 49 the 1st time I went to a Cardio PT Class & when I walked in I did a double look-all those Old Folks! Even the nurse asked if ...


  • By ezits · Posted December 29, 2013
  • 2 replies
  • Changed my photo to show how bundling up innside helps when the windchill bottoms out at minus 23. It's a gorgeous bright sunny day, but it is to cold to enjoy the snow! Um, I'll admit, the Packers ...


  • By Alexhunterus · Posted December 29, 2013
  • 4 replies
  • Last year, I had to leave school because I was missing so much and wasn't able to keep up. I'm technically being home schooled but because of brain fog, I haven't been able to do anything for a while ...

starting a new journey

  • By jparks87 · Posted December 29, 2013
  • 1 reply
  • I have never felt so sure about something in quite some time. my whole life I have been what most would call sickly and super clumsy. I was sick almost every other week, prone to break something or hurt ...

rant/ friends?

  • By Kaylalaprincess · Posted December 28, 2013
  • 5 replies
  • Okay; so i was diagnosed June 5th, 2013 with EDS type 3. and of course my doctor had to explain to me what it was because i've never heard of it. No one ever heard of it. And then i had to start telling ...

Christmas' ups and downs

  • By bendyandiknowit · Posted December 27, 2013
  • 0 replies
  • Between the food, activity, and stress. Christmas was full of pain, tears, and vomiting. It was nice being with family. i have felt awful for a week and it just exploded on Christmas. When will get care ...

EDS and the Traveling

  • By AJP_01 · Posted December 25, 2013
  • 2 replies
  • Traveling is such a joy! (insert sarcasm) I used to take the Greyhound from NYC to DC but had situations like an inconsiderate person putting their seat back and smashing it hard into my delicate knees ...

Thank you, Doctor

  • By Zyp · Posted December 24, 2013
  • 3 replies
  • Back in 1995, when my mysterious, still undiagnosed back pain was becoming unmanageable, I was lucky enough to be treated by a doctor who was one of the first to prescribe opiates for chronic pain over ...

Please help-newly diagnosed and unable to explain to others

  • By sams2122 · Posted December 23, 2013
  • 6 replies
  • I am 34 years old and newly diagnosed with EDS III. I am also pregnant and having increasing pain issues. I don't know if my pain is my worsened by pregnancy or if my EDS is getting worse (perhaps both ...


  • By kdg1213 · Posted December 21, 2013
  • 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 kdg1213 · Posted December 20, 2013
  • 5 replies
  • My heart is a mess once again. I am probably going to need a repeat of my surgery. I just hope they can fix it so my quality of life improves. I hate being like this ...

positive attitude.

  • By michele-fay · Posted December 17, 2013
  • 1 reply
  • Do things that make you happy,proud and make a difference. Know that there will be highs and lows,be proactive with your health.Have faith. December 17 2013 ...

Muscle pain

  • By Vickie1962 · Posted December 10, 2013
  • 1 reply
  • I had gastric bipass surgery 11 years ago, 6 months ago I had to have ulcer repair in my pouch I am now having severe muscle pain and weakness in arms and legs at times my hands swell and the pain is ...

An Unstoppable Rare Disease Mom

  • By all4CAID · Posted December 10, 2013
  • 3 replies
  • Lisa Moreno-Dickinson may not have made Forbes’ list of the world’s most powerful people this year. But that is not going to stop her from changing the world for children who suffer unbearable pain from ...


  • By Sunmaidz · Posted December 9, 2013
  • 1 reply
  • I recently heard that EDS - Vascular patients are living longer than projected. It is stated that we should only be living until our mid forties. Well I am turning 49 in two months. My brother who also ...


  • By DevonChez · Posted December 7, 2013
  • 4 replies
  • Well, I got uremic from dialysis screwing up my transportation. Now they are trying to sort out what symptoms are from that which are from the eds and which ones from sarcoidosis. I'm in a lot of pain ...

Anyone from southwest florida?

  • By MomofLexi · Posted December 7, 2013
  • 3 replies
  • Just wondering if anyone else here is from Florida or southwest Fl ...

Why Not Palliative Care?

  • By Zyp · Posted December 6, 2013
  • 24 replies
  • I recently saw a couple of articles on palliative care and it struck me that it's just the kind of service/care chronic pain patients (or anyone with a chronic illness) needs. When Palliative Care Is ...

The Inspire Q&A: Inspire talks with Kathy Nieder, MD

  • By John2 · Posted December 6, 2013
  • 36 replies
  • The Inspire Q&A: Inspire talks with Kathy Nieder, MD By John Novack, Communications Director, Inspire Dear members, We at Inspire are pleased to bring you the latest in a series of interviews with people ...

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