Patient Comments: Ehlers-Danlos Syndrome - Share Your Experience

Do you or a relative have Ehlers-Danlos syndrome (hypermobility)? Please share your experience.

Comment from: Lovezelix, 55-64 Female (Patient) Published: April 21

I have a bad case of Ehlers-Danlos syndrome type 1 severe. At first they said it was type 2 then after blood and skin biopsy it was changed to type 1 severe. I have had many eye surgeries, detachment and strabismus repair in both eyes. I have had bladder prolapse two times, rectal prolapse two times, ovarian and uterine fibroids surgery, total hysterectomy, left shoulder tear repair, right knee arthroscopic surgery and finally total knee replacement. I have had C-4 L4 fusion, abdominal hernias and too many joint dislocations to keep count. I have had hand surgeries and right thumb joint repair. I suffer with severe migraine headache, blurred vision, dizziness, abdominal pain, cramping, very painful bowel movements, and bladder problems. I live with chronic pain level eight, and chronic insomnia due to painful joints and cramping at night.

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Comment from: Teacher5, 55-64 Female (Patient) Published: May 13

When I was a crawling toddler, my legs would bruise very easily. My mom suspected something was different between me and my siblings so she pushed for a diagnosis - Ehlers-Danlos syndrome (EDS). Oddly, my father had some of my same issues, but he never paid it any mind. Whenever we went on vacation, I would end up with stitches or a huge lump wherever I had bumped myself. My skin stretches incredibly, but it"s never been a problem. I have had more cavities than any of my siblings despite trying to take good care of my teeth. My 2 sons have also had their share of stitches. Also, when they each turned 18, even though neither had had any cavities that could be seen by their pediatric dentist, their new dentist diagnosed them with deep cavities, necessitating root canals. Then, their pediatric dentist did a lot of research and called to ask if they had EDS. I was shocked, to say the least. Watch your teeth!

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Comment from: MomWithEDS, 25-34 Female (Patient) Published: November 18

I am a 32 year old mother of two who was diagnosed by with Ehlers-Danlos syndrome (EDS) in May 2013. As a child and teenager it was always thought that I was just very flexible and double-jointed. A few years ago my hips started popping out without warning, and it was extremely painful. After visiting a local orthopedist, she suspected that EDS Hypermobility Type 3 may be my issue. She referred me to another doctor for an official work-up and diagnosis. He was certain I had EDS within minutes of starting the exam. Currently I am doing physical therapy to strengthen my core (hopefully to make my muscles be able to make my joints more stable), but I haven't had any improvement so far that I can tell. Medication wise I take an extended release medicine (Oxycontin) three times a day, along with an anti-inflammatory and another pain medicine (oxycodone IR) for breakthrough pain. This is not the life I had imagined I'd have, but I try to stay positive in the face of pain and accept my situation without letting it own me.

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Comment from: cooperfan, 35-44 Female (Patient) Published: October 15

I have had symptoms of Ehlers-Danlos syndrome my whole life. For the longest time my mom was told it was growing pains, but the first sign was actually my knee cap dislocating. It did that for years and was very painful. I have dislocated my elbow, knee and both thumbs. I sprain very easily but have never broken a bone. I fall, trip, bump into things and bruise easily. My pain has gotten worse as I have gotten older. The pinnacle so far was my back surgery in 2012. I now have fibromyalgia as well. I was told people with chronic pain often get this. It was hard to find a doctor who believed me and I actually started to doubt myself thinking, maybe it really is in my head. Thankfully I found a doctor who diagnosed me in minutes with Ehlers-Danlos, hypermobility type. As painful as it is, it is such a relief to know it is a real thing and not in my head. I now use a walker to get around and have found a doctor that is trying to help me.

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Ehlers-Danlos Syndrome - Treatments Question: How was your Ehlers-Danlos syndrome treated?
Ehlers-Danlos Syndrome - Diagnosis Question: How was your Ehlers-Danlos syndrome diagnosed?
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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