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Ehlers-Danlos Syndromes

Ehlers-Danlos support group and discussion community

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Ehlers-Danlos Syndromes

"For some chronic pain patients, life without opioids is torture"

John2's journal

John2

for-some-chronic-pain-patients-life-without-opioids-is-torture

200212

  • 761 Replies

From: John Novack, Communications Director, Inspire 7/15/16 Dear members, I am writing to share with you a brand new article in the Boston Globe's STAT section, "For some chronic pain patients, 'life without opioids is torture.'" The article is based on insights of Inspire members, and the article references the recent online survey that Inspire conducted here. To those of you who ... Read More

Ehlers-Danlos Syndromes

Hello, everyone!

Radha_Inspire's journal

Radha_Inspire

hello-everyone-96

200212

  • 157 Replies

Hello everyone! My name is Radha and I am the digital editor at Inspire. We’d like to share some news about an editorial initiative that we hope will be of use to you. Your community is a space where you can express your thoughts, seek support, and share information with fellow members, and will, of course, continue to be. My goal is to take cues from your discussions, your questions ... Read More

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Ehlers-Danlos Syndromes

new to this

In: Hypermobile EDS (Type III)

stephenlxself

new-to-this-197

200212

  • 1 Reply

I'm 31 and my doctor suggested that I may have EDS and reading about it has been frightening for my wife and I. I am a fairly active person and want to be active in the lives of my kids but now I don't really now what's coming down the pike. I'd appreciate any feedback you guys have. Will I still be able to work and all that or what ... Read More

Ehlers-Danlos Syndromes

Cleveland Clinic handout on BJHS

In: Hypermobile EDS (Type III)

momofluke

cleveland-clinic-handout-on-bjhs

200212

  • 13 Replies

Does anyone have an opinion on this article? http://www.cchs.net/health/health-info/d ocs/1700/1722.asp?index=3971 The reason I ask is that this is the sheet my sons doctor gave me for his school. We see Dr. Tinkle in May and I can wait and ask him, but I would like to bring the correct information to the school. I'm thinking I'll just bring the excellent guide on the EDNF.org site ... Read More

Ehlers-Danlos Syndromes

Useless surgeon!!!

In: Hypermobile EDS (Type III)

SarahRoth77

useless-surgeon

200212

  • 16 Replies

So I saw a orthopedic surgeon today!!....not going to swear!!...what a complete waste of time!...my hips have been dislocating and partially dislocating for so long, the pain isc now permanent. My GP ( who is amazing referred me to a supposedly top ortho surgeon. After a 2 minute examination, and a 5 minute consultation, he told me my hips do not dislocate, fully or partially, and ... Read More

Ehlers-Danlos Syndromes

Nerve Burning for back pain???

In: Neurologic issues

kris_10

nerve-burning-for-back-pain

200212

  • 16 Replies

I have had chronic back pain for 5 years due to 2 herniated discs. My pain management doctor told me today that I may be a candidate for this procedure. Anyone heard of it/had it done? I hate the cortisone injections I get for the pain so what I read about it seems appealing ... Read More

Ehlers-Danlos Syndromes

8 y/o post op absolutely refuses to use the incentive spirometer?

In: Parents of children with EDS

bellsar

8-y-o-post-op-absolutely-refuses-to-use-the-incentive-spirometer

200212

  • 3 Replies

New here. Sorry if this has been asked before. My 8 year old daughter had surgery ,on her brain stem and this is her 3rd day post op. She was given an incentive spirometer which she is supposed to do every hour, but just flat out refuses to use it. This is a device to help with deep breathing and coughing to prevent atelectasis and she was also given one due to elevated temperature ... Read More

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Ehlers-Danlos Syndromes

EDS and Adult Acne

In: Dermatology / wound healing

dramaturgchick

eds-and-adult-acne

200212

  • 24 Replies

So, I've had bad acne since I was a teenager, and it's worse now (I'm 27). I think part of it is the medications I take for bipolar disorder (Lamictal, Klonopin, and Depakote). What remedies do the rest of you use for acne? I probably won't take Accutane, and am looking for somewhat cheap remedies since I'm on medicaid. My dad may get me the Unblemish line from Rodan and Fields if ... Read More

Ehlers-Danlos Syndromes

Finding HOPE Through The Cruelty and Prejudice

In: Other types of EDS

SharonHOPE

finding-hope-through-the-cruelty-and-prejudice

200212

  • 7 Replies

Recently I went to see my neurosurgeon. There were several young women in the office, a 17 year old and 22 year old with EDS and their mothers. The stories they told of cruelty in hospitals and disbelief by doctors made me realize that my experience with cruelty, judgment and lack of knowlwdge was not issolated. One girl 17 years of age was refused medication for pain in an emergency ... Read More

Ehlers-Danlos Syndromes

Anyone else out there that also won the genetic lottery ??

In: Hypermobile EDS (Type III)

magicalzebraunicorn

anyone-else-out-there-that-also-won-the-genetic-lottery

200212

  • 3 Replies

Hi all ! I am new here and have a question for you lovely people... has anyone here been diagnosed with both neurofibromatosis , and ehlers danlos syndrome hyper mobility type ? I suffer from both and am in so much chronic pain its crazy... my docs get confused looking at my scans due to the fact that most docs haven't seen a case presented like mine. I am paralyzed from the waist ... Read More

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