Patient Comments: Ehlers-Danlos Syndrome - Diagnosis

How was your Ehlers-Danlos syndrome diagnosed?

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.

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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.

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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!

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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.

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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.

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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.

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Patient Comments

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Ehlers-Danlos Syndrome - Treatments Question: How was your Ehlers-Danlos syndrome treated?
Ehlers-Danlos Syndrome - Share Your Experience Question: Do you or a relative have Ehlers-Danlos syndrome (hypermobility)? Please share your experience.
Ehlers-Danlos Syndrome - Symptoms Question: What symptoms have you or someone you know experienced with Ehlers-Danlos syndrome?
Ehlers-Danlos Syndrome - Experience Question: What lifestyle changes have you experienced that has helped symptoms of Ehlers-Danlos syndrome?

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