Journals

Please help-newly diagnosed and unable to explain to others

sams2122
  • 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 ...

hopeless

kdg1213
  • 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 ...

today

kdg1213
  • 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.

michele-fay
  • 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

Vickie1962
  • 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

all4CAID
  • 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 ...

Longevity

Sunmaidz
  • 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 ...

Hospitalized

DevonChez
  • 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?

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

Why Not Palliative Care?

Zyp
  • 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

John2
  • 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 ...

Rib dislocations

Dotz
  • By Dotz · Posted December 1, 2013
  • 4 replies
  • I can handle dislocations of the wrist,shoulder,jaws,elbow,ankle, knee cap, fingers , pelvic bone,hip, parts of my back but how does one handle rib dislocations at home without going to the doctor as ...

always needing the toilet

Dotz
  • By Dotz · Posted December 1, 2013
  • 13 replies
  • I have a serious problem am always peeing and thirsty i swear i go to the toilet atleast 30times a day yet other days its could be more almost every 15minutes or so i have let go or less i get a urine ...

Putting A Bug In A Dr's Ear

Duvie
  • By Duvie · Posted November 30, 2013
  • 10 replies
  • I wish I could take some credit, but I can't. This is a manual swallowing device seeking FDA approval for patients with Dysphasia. Before joining any of Inspire's great sites, I got in touch with Dr Peter ...

My journel writing

Lydiadeetz
  • By Lydiadeetz · Posted November 30, 2013
  • 9 replies
  • No one is there for me and they say they are but there not and your supposed to accept the way people treat you without making a fuss and your supposed to let people walk all over you just because that's ...

Heart Broken Mom

annie111
  • By annie111 · Posted November 29, 2013
  • 9 replies
  • Hi there, i really glad to join team inspire, to hope that i might get some help from anywhere about my kids. I am a mother of two daughters, in 2008 i had my second baby girl born and we were very happy ...

I'm Thankful for My Inspire Friends

Duvie
  • By Duvie · Posted November 29, 2013
  • 18 replies
  • Although Thanksgiving is an American holiday, I'd like to include all my Inspire friends around the world when I say, Thanks You for sharing your experiences with me and for showing your support, encouragement ...

A Thanksgiving blog post

cypipes
  • By cypipes · Posted November 28, 2013
  • 2 replies
  • About the amazingly kind occupational therapist who is giving me aqua therapy even tho I am out of PT visits for this year: http://www.cyrillabaer.com/blog.html ...

Happy Thanksgiving

Duvie
  • By Duvie · Posted November 27, 2013
  • 17 replies
  • Wishing everyone a VERY special Thanksgiving this year as it is my first after finding Oley, which my first within the Inspire Network of support communities and groups. Without Inspire and all the marvelous ...

Thank You, From Inspire

Walter
  • By Walter · Posted November 26, 2013
  • 108 replies
  • Hello everyone, As Thanksgiving approaches, all of us at Inspire would like to take a moment to thank you for being part of our community. While we wish no one had to deal with the serious health issues ...

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