Ehlers – search | You searched for comments

To narrow your search, try adding quotation marks around phrases.

Search tips

Search by keywords or complete phrases.
To narrow your search, try adding quotation marks around phrases.
Example: "predictable behavior" will narrow the search results to only include content that has the exact phrase "predictable behavior" in it.

468 total results

Comments (398)

By the way. I was diagnosed with Ehler's Danlos Syndrome. I always knew I had hyper...

https://connect.mayoclinic.org/comment/1155313/

I was diagnosed with Ehler's Danlos

Discussion: Hyoid Bone Syndrome

Support Group: Ear, Nose & Throat (ENT)

Posted: Oct 11 9:00am

Oh! Ouch! Is sitting easier without a tailbone? Have tail bone pain but no diagnosis of...

https://connect.mayoclinic.org/comment/742220/

replacements and revisions due to Ehleurs

Discussion: Pain in the butt - Can't sit down

Support Group: Chronic Pain

Posted: Aug 27, 2022

Have you looked into mast cell activation syndrome? It is becoming more common with Covid long...

https://connect.mayoclinic.org/comment/733786/

https://www.ehlers-danlos.com/wp-content

Discussion: Running out of hope

Support Group: Just Want to Talk

Posted: Aug 3, 2022

You asked for information about testing…this guide helped me…I printed, read it, Filled out forms and...

https://connect.mayoclinic.org/comment/774177/

https://www.ehlers-danlos.com/wp-content

Discussion: What testing should I look forward to be properly tested for MCAS

Support Group: Autoimmune Diseases

Posted: Nov 17, 2022

Ehleurs Danlos has been my life companion. After my second child (another story), I was diagnosed...

https://connect.mayoclinic.org/comment/765574/

Ehleurs Danlos has been my life companion

Discussion: Undiagnosed Hip Pain

Support Group: Bones, Joints & Muscles

Posted: Oct 26, 2022

Hi! I just have to tell you that you are not alone. I'm 33 almost 34...

https://connect.mayoclinic.org/comment/102575/

I also have EDS or Elhers-Danlos Syndrome

Discussion: Autonomic Neuropathy - Looking to talk with others

Support Group: Autoimmune Diseases

Posted: May 13, 2016

Hello, I had an scs stimulator implanted on 10/12/20. I am still doing adjustments, no pain...

https://connect.mayoclinic.org/comment/272994/

also have a genetic anomaly called Ehler

Discussion: Spinal Stimulator effect on the heart

Support Group: Spine Health

Posted: Nov 13, 2020

I am 46 female and my genetics doctor thinks this is what I have based or...

https://connect.mayoclinic.org/comment/864090/

We originally thought I had elhers danlos

Discussion: Larsen’s Syndrome- Rare Connective Tissue Disorder

Support Group: Bones, Joints & Muscles

Posted: May 21, 2023

I don't have any experience, but I know it is very difficult to get a diagnosis....

https://connect.mayoclinic.org/comment/948338/

www.facebook.com/TCMN.EDS/ https://www.ehlers-danlos.com

Discussion: Frequent dislocations and burning pain and numbness

Support Group: Bones, Joints & Muscles

Posted: Oct 15, 2023

For perspective, I am a 54 year old woman with intermittant high blood pressure of unknown...

https://connect.mayoclinic.org/comment/1072256/

disorders that often cause aneurysms, like Ehler-Danlos

Discussion: Recommendation on When Should I have the Operation

Support Group: Aortic Aneurysms

Posted: May 21 12:18pm

I scheduled my own, also. I did shop for physical therapy as it is important for...

https://connect.mayoclinic.org/comment/688359/

back degeneration and hypermobility (Elers-Danlos

Discussion: Have you found anything to successfully treat fibromyalgia pain?

Support Group: Fibromyalgia

Posted: Mar 10, 2022

Hi @realitytest - I see your message is from 2022- are you still on this feed?...

https://connect.mayoclinic.org/comment/1003277/

(I've been told I may have Ehler-Danlos

Discussion: How do you manage the effect of Kyphosis and Scoliosis?

Support Group: Bones, Joints & Muscles

Posted: Jan 25 12:37am

Hi there- Do you think you have EDS/HSD, or vascular EDS specifically? I have HSD (hypermobility...

https://connect.mayoclinic.org/comment/1007127/

diagnostic criteria here: https://www.ehlers-danlos.com

Discussion: Ehlers Danlos Syndrome (EDS) & HSD, calling all types!

Support Group: Bones, Joints & Muscles

Posted: Jan 31 9:24am

I was diagnosed 3 weeks ago but it looks like I have had it since late...

https://connect.mayoclinic.org/comment/1082148/

Having everything blamed on having Elhers

Discussion: Has anyone ever recovered from mycobacterium avium intracelluar comple

Support Group: Infectious Diseases

Posted: Jun 6 9:39pm

I don’t have spasms, but terrible trigger finger - right hand middle. If affects my ability...

https://connect.mayoclinic.org/comment/886359/

I explained I have Elhers Danlos Syndrome

Discussion: Does anyone suffer from random hand cramping and finger contractures?

Support Group: Bones, Joints & Muscles

Posted: Jun 28, 2023

@upnorthmama - I’m so sorry to hear what your daughter is going through and how hard...

https://connect.mayoclinic.org/comment/796947/

seen this link before: https://www.ehlers-danlos.com

Discussion: Teen in mental health crisis: Any good resources?

Support Group: About Kids & Teens

Posted: Jan 15, 2023

They diagnosed my ctd through blood work. I thought I only had Sjogrens and then went...

https://connect.mayoclinic.org/comment/789518/

Have you been checked for Ehleros Danlos

Discussion: Ascending aortic aneurysm with connective tissue disorder

Support Group: Aortic Aneurysms

Posted: Dec 27, 2022

Thank you for sharing. I have hypermobile Elhers Danlos Syndrome which is why I have joint...

https://connect.mayoclinic.org/comment/688445/

I have hypermobile Elhers Danlos Syndrome

Discussion: Prolotherapy for SI joint pain

Support Group: Bones, Joints & Muscles

Posted: Mar 11, 2022

Hi. Just found this group. I was diagnosed with a 4.8 cm TAA in Feb. Because...

https://connect.mayoclinic.org/comment/323109/

sister was diagnosed with hypermobile Elhers

Discussion: Early surgery: Can I get aortic aneurysm repair before it's 5.0?

Support Group: Aortic Aneurysms

Posted: Mar 23, 2021

Hello. :D The term spinal stenosis was never mentioned to me. Originally back in 1982 I...

https://connect.mayoclinic.org/comment/290312/

testing, I was found to also have Ehler

Discussion: Severe spinal stenosis: Would you do surgery?

Support Group: Spine Health

Posted: Nov 28, 2020