Patient Comments: Ehlers-Danlos Syndrome - Diagnosis

Question:

How was your Ehlers-Danlos syndrome diagnosed? Submit Your Comment

Comment from: dlj, Male (Patient) Published: May 01

I was diagnosed with Ehlers-Danlos syndrome while in the process of filing for disability due to some minor genitourinary/gastrointestinal problems that turned into major problem post-surgical. He said my history pointed clearly to it, and was surprised my primary care physician did not suggest it already.

Comment from: [email protected], 45-54 Female (Patient) Published: November 06

I am just over 50 and grew up in a generation that never went to the doctor unless there was a broken bone or large amounts of blood. I all ways had a spring in my elbow, ankles, shoulders, wrists, and knees. I grew up thinking I was clumsy. I don't necessarily have the double joints of the knees and elbows, but I use to with my wrists, hips, and ankles. They have stiffened up a little since getting older. I found out when I was 45, that I also have scoliosis in two places in my back. My hips would subluxate and once popped out. With all this, I have never been diagnosed with Ehlers-Danlos syndrome. I now have such pain and have a positive ANA. Still nothing has been done. They gave me a diagnosis of fibromyalgia. I don't necessarily believe that. My sisters and my children have similar issue, with mine being the worst. My grandfather and his sister also had similar issues.

Comment from: Piggygirl, 19-24 Male (Caregiver) Published: August 06

My son is 19 years old and has this intense pain in his shoulder for 3 years now. We have been to 4 different orthopedic doctors because we thought it was his rotor cuff. The last doctor asked us if he was double jointed. This is the second time a doctor has asked us this. I can remember when he was younger, he would always have pain in his knees and ankles but were told it was growing pains. This new doctor told us to ask our primary doctor to look into connective tissue diseases. We are at our wits' ends with this Ehlers-Danlos syndrome. I cannot see my son in pain anymore.

Comment from: (Patient) Published: November 01

I was having horrible pain and going to rheumatologist who was doing nothing but tests and giving me different drugs to try every two weeks. After going to the ER with severe pain and not being treated I decided to see a pain specialist. Once seeing him within 5 minutes he thought I had EDS and referred me to a specialist in the area. Within 15 minutes of meeting the specialist and talking with him I was diagnosed with EDS!

Comment from: Katfre32, 45-54 Female (Patient) Published: April 24

I wonder where one goes to get a confirmation of hypermobility type of Ehlers-Danlos syndrome (hEDS). I have all the signs of it. Apparently I do not have the vascular EDS as per hematologist. I want confirmation (or not) of hEDS by a practitioner who specializes in this area. I want to manage life and ensuing surgeries with specific and latest information regarding this disorder. I do not want to go to a genetic center that will draw blood and offer no confirmation or solutions.

Comment from: loose lady, 55-64 Female (Patient) Published: February 23

I have had Ehlers-Danlos syndrome my whole life. I am 63 years old and have suffered from severe pain since childhood. I have been to more doctors then you can imagine. I have subluxations of joints, hip dysplasia, fibromyalgia, arthritis, and CFS (chronic fatigue syndrome). I had total hip replacement and knee reconstruction. I have slipped discs. My fingers lock up painfully. Now my other kneecap pops off when I walk. I am afraid I will no longer be able to work. I also have autonomic dysfunction. My mother had this worse than me. She had 8 miscarriages, I was the only one that survived. She died from heart valve disease.

Comment from: Freebird, 55-64 Female (Patient) Published: May 07

I have had hypermobility (Ehlers-Danlos syndrome) in all my joints my entire life. I continually dislocated my knees my entire life. At the age of 18 I had the Hauser procedure done on one of my knees. This surgery did help to prevent this knee from dislocating, but was a hard surgery to recover from and I basically had to learn to walk again. I have always had to be extremely careful on stairs, many times I have fallen because of my joints dislocating. I have swollen and lumpy joints and terrible bunions, protruding and pronounced bones in my elbows, wrists, and knees. My hips subluxate, and I have learned how to unstick them on my own - on the floor with tennis balls. My pain is very bad and some days I am crying, when I walk the pain is so difficult to bear. I am trying to get a doctor to diagnose me and so far have had little luck. I have been without health insurance for 5 years, just got it recently. The doctors do not seem to know what to do! I have been struggling for years now and just in the last 3 have really gone downhill.

Comment from: Mckey, 13-18 Female (Patient) Published: July 23

I was diagnosed with EDS at the age of 16 after two injures on the same knee , the doctor told me "I think that you have EDS but I have to do some exams to confirm" and the result confirmed that I had EDS...

Comment from: pinky, 35-44 Female (Patient) Published: July 18

I was diagnosed by my hand surgeon about 13 yrs ago, have bilateral wrist fusions-due to injury. I also have bilateral hip displaysia with torn laberals, I can bearly walk -hip surgeons ignore me because they don't know what to do. my hand surgeon says the only way to fix me is joint replacements & or full fusions- my ligaments are the loosest he ever seen. he is one of the leading hand surgeons in the world. phisical therpy makes me worse it tends to loosen up the muscles whick are ther only things holding my joints together. I'm 35 now what happens when I turn 50? know any hip surgeons that wold help me?

Comment from: Jake, 65-74 Female (Patient) Published: September 18

I'm 66 years old and was diagnosed with Ehlers-Danlos syndrome at the age of 55. I kept dislocating a standard knee prosthesis and needed to have it replaced with a hinged knee prosthesis. All my joints have been unstable since I was a pre-teen. I was called double jointed.

Comment from: hemigrl, 35-44 Female (Patient) Published: August 23

When I was eight years old I found myself in pain as I was laying on the ground. I had no idea why, what, or how this pain happened. All I know is the pain was so intense that all I could do was lay there starring at the sky praying that God will help me. I remember the sky was so beautiful that day...so blue it was perfect! But, I wasn't! So, I laid on the ground until the pain was not so intense. I remember making my way inside the house and resting for hours until I fell asleep. I didn't say a word to my parents only "I think I played too hard". Little did I know, this was the beginning of numerous knee dislocations. I am now, 40 years old, and I was not diagnosed with Ehlers-Danlos syndrome until I was 33. More physicians and the general public need to be more educated on this debilitating syndrome.

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