Patient Comments: Ehlers-Danlos Syndrome - Treatments

How was your Ehlers-Danlos syndrome treated?

Comment from: Terre, 65-74 Female (Patient) Published: February 24

Many of my family members along with me have hyper mobility and loose skin, especially around eyes. My brother has aortic dissection and I have severe hyper mobility and now labral tears bilateral in hips. No doctors have figured out what we have nor pay attention giving any tests. All previous diagnosis of muscular dystrophy, myasthenia gravis, rheumatoid arthritis, fibromyalgia, etc. are unfounded. I can't understand why Ehlers-Danlos syndrome should be so avoided by doctors for an obvious diagnosis!

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Comment from: Amber L., 35-44 Female (Patient) Published: May 09

I was diagnosed only a few years ago after a shoulder injury. I have dealt with painful joints as long as I can remember. My hips are constantly popping in and out of joint with an audible pop. I also have curves in my spine that cause severe back pain. My knees and ankles are always cracking. Even my elbows and ribs pop out of place. I also have the hyper-elastic skin. My doctor has me on Celebrex and tramadol, which were working. As time goes on, my symptoms are increasing at a faster rate than we expected. I can't stand for any length of time and have to switch positions frequently when sitting or lying down because I get stiff and "locked up" very quickly. I'm probably looking at a hip replacement before I'm 50. I'm 37 now. After my shoulder surgery (I was in a motorcycle accident), I spent a total of nine months in physical and aquatic therapy, but it did nothing for the pain. I'm still looking for some kind of treatment other than narcotic pain meds.

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Comment from: jamiea, 35-44 Female (Patient) Published: April 19

I am 35 and was just diagnosed with EDS type III. It has taken years of low back and neck pain, chronic headaches, fatigue, and dislocated ankles, dislocated knees, a few knee arthroscopies, and multiple doctor visits to get to this point. I chose a profession that keeps me on my feet more than 14 hours a day and lifting 150 pounds or more sometimes (little did I know it was the worst thing I could do). I went to a rheumatologist and she diagnosed my condition after a 20-minute exam. I am starting physical therapy, massage therapy, and water aerobics. As far as medication, she prescribed naproxen and Flexeril, but the Flexeril makes me so tired. I am just relieved to have a diagnosis that doesn't make me feel like a crazy person anymore. I hope that the treatments I am starting begin to help my pain and fatigue. I have told my mom and grandma to get to a rheumatologist as well, because they have suffered with these things far longer than I have.

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Comment from: Dundee, 55-64 Female (Patient) Published: December 27

I have Ehlers-Danlos syndrome the veins in my legs split when out shopping, sitting. It's hard to stop blood flow sometimes, my bowel feels like its dying sometimes. Terrible feeling, my knee and hips jump out of joint, pain is horrific hard to cope sometimes. That's why I keep going to work it helps me by concentrating on other things. I am on fentanyl patches very low dose and Panadol Osteo. I don't cope very well to a lot of pain killers as allergic to most. It even hurts lying down as joints pain so bad at night, have trouble walking as well. My grandchildren have it as well there joints re forever jumping out, same as my sons. I have since developed Sphenoid Fibrous Dysplasia a very rare condition they said it may be part of this. The fibrous growth is in head under the brain. My eye sight is forever changing, my muscles are practically nonexistent, my skin hangs and is very soft.

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Comment from: In pain, 45-54 Female (Patient) Published: December 14

My first surgery to prevent my knees from dislocating was when I was 14 years old. Five surgeries later to deal with different injuries on different joints, I deal with pain every day. People look at me and see a healthy looking person. However, all I can think about is how much pain I am in. If I feel this way at 50 years old how will I make it another 10 years. Pain is a silent killer of souls. I was only diagnosed with Ehlers-Danlos 3 years ago. I know how others feel with this disease. Most doctors have never heard of it. I feel guilty having to take pain medication. Almost like a criminal but without it I would be in bed. Sorry for all who suffer with it.

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