Patient Comments: Ehlers-Danlos Syndrome - Share Your Experience

Question:

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

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.

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!

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.

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.

Comment from: Late Diagnosis, Female (Patient) Published: July 24

I was diagnosed with Ehlers-Danlos a little over 2 years ago. I had never heard the name before. Doctors passed around the term Marfan when I was 12 when I first dislocated my knee. Since then, I have dislocated my knee several more times and have had two surgeries. The first resulted in my patella dislocating in the opposite direction. After the second, I have been fortunate not to have any more but have severe pain. I have subluxed my shoulder, dislocated my thumb, and sprained my ankles in both directions more times than I can count. Being diagnosed with Ehlers-Danlos syndrome was sort of a relief for me. I always felt there had to be a reason I was different. Why was I in pain all the time and having so many injuries? I felt I was crazy. I also have a bicuspid heart valve and have had scares with dilatations. Very recently, a relative of mine who is only 5 years old was diagnosed with EDS. I was sad to hear about it, but I hope her early diagnosis helps her in many ways.

Comment from: Nurse, 13-18 Female (Caregiver) Published: June 24

I have been a nurse in pediatric units of a large mid-west hospital for 15 years. We see EDS (Ehlers-Danlos syndrome) patients rarely because they are handled mostly on outpatient services. One of the continuing problems has always been pain management which I note is the issue with adults as well. The other issue we see is mobility problems affecting getting around at school. The best predictor of success seems to be parental involvement and the kid's personality; the more upbeat the kid, the better they do.

Comment from: hboots68, 13-18 Female (Caregiver) Published: March 27

My 16 year old daughter went to a pain specialist the other day, and he said that she probably has Ehlers-Danlos syndrome (EDS). He has requested a referral to the children's hospital to see a specialist, but that will take at least 6 months or more. She was told that she has fibromyalgia and hypermobile joints when she was 12. She has fibromyalgia and now we believe she also has EDS. This makes it hard to treat since what is good for one is not good for the other. They changed some of her medications and gave her tramadol for the pain. Hopefully we can get this under control so that she can live a semi-normal life.

Comment from: Mowy, 75 or over Female (Patient) Published: December 16

I have had Ehlers forever. They have my shoulder tied into my shoulder bone. My veins pop. I have always had a problem going up and down stairs. Now my intestines are popping out. I have passed this on to my children.

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

I was diagnosed 4 years ago with Ehlers-Danlos syndrome (hypermobility) after a lifelong struggle with this disorder. I wasn't diagnosed until after I had my 6 children (two of whom I lost). Now, three of my four surviving children also have this disorder.

Comment from: frustrated mom, 25-34 Female (Caregiver) Published: August 05

My daughter has suffered with EDS diagnosed 4 years ago, prior to formal diagnosis she had symptoms for years. She is 28 and has 24 surgeries. Mostly shoulder, jaw and knees. Now her hip dislocates, she has been to the ED several times given an ice pack and is labeled a pain med seeker. She is very depressed.

Comment from: BrittanyMarie, 13-18 Female (Patient) Published: July 29

I was diagnosed when I was 11 With the hyper mobility type. I started having real troubles maybe a year later. My dad also has the hyper mobility type so little to say I got it from him. I have a hard time getting up in the mornings and have a lot of body pain. When I was 11 it was causing my body to only lock up from my shoulders to my torso but then bu the time I was 15 my whole body I mean WHOLE body was locking up. It really hurts to move sometimes. Working out is almost impossible due to the pain I have to endure. I have a loose shoulder that's only getting worse and I also have a horrible knee problem, my cartilage has been worn down due to me trying to work out. I didn't listen to my doctor either about the weight. If you have any kind of EDS, keep the fat off, I am now struggling to get it all off. If you don't you'll be in a lot of pain like I am. We are planning surgery hopefully for my shoulder and the hopefully for my hands because my glove is loose. I have also been told by MANY doctors that if you have EDS put off getting surgery as long as you can. The fixes are never permanent they are only temporary. But as soon as they fix something you will never be the same. Your skin will take longer to heal so put it off as long as you can.

Comment from: VisualEyez, 19-24 Female (Patient) Published: July 26

Daughter was just diagnosed with EDS - benign version. We had never heard of this before and didn't even know the questions to ask. She is 22. She is very flexible, scars easily, and has history of joint pain. We have read about issues with gastrointestinal problems which has landed her in the emergency room a few times without explanation and exploratory surgery for possible ovarian cyst rupture. She has issues with anesthesia (has woken up during procedures). There is family history of aortic aneurysms. I'm just concerned that some how these are all involved but are being overlooked. We are doing our best to find someone in the area that is more familiar with this syndrome.

Comment from: virgo40, 45-54 Female (Caregiver) Published: May 31

I have a sister who has Ehlers-Danlo and it is heart breaking. She has so many scars from falling as a child. It is anxiety-producing whenever she has to have surgery. We always have concerns about sutures/staples holding etc. She just had knee surgery for a torn patella tendon. We're all very worried.

Comment from: MomofThree, 19-24 Male (Caregiver) Published: May 31

My son was just diagnosed with EDS III. We live in Chicago and are desperate to find a physician who can treat him.

Comment from: siboydzz, 45-54 Female (Patient) Published: April 09

Since I was a teenager I've had dislocated joints. Even during pregnancy they were dislocated. I always told my physicians about my hypermobility, but no one seemed to be listening. When I started to have bleeding in the knee joints, I saw hematologists, knee surgeons, and they were clueless. Only a rheumatologist knew that I had EDS. I was wrongly diagnosed with scleroderma before. I have pain daily. But nobody can see it.

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