Patient Comments: Ehlers-Danlos Syndrome - Treatments

How was your Ehlers-Danlos syndrome treated?

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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Comment from: concerned mom, 7-12 Female (Caregiver) Published: November 26

My 8 year old daughter was just diagnosed with Ehlers-Danlos syndrome and we found out the hard way she had her tonsils and adenoids taken out and during the operation she had her neck dislocated and had to wear a halo and a neck brace. Going through all this we also discovered that my youngest daughter has it and was really messed up was after her tonsils were taken out they said my daughter was faking just wanting attention when she really had a dislocated neck.

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Comment from: Lou, 13-18 Female (Caregiver) Published: November 16

My daughter was diagnosed last year with EDS, after I had a biopsy (she is needle phobic). Despite hydrotherapy and regular physio she is in pain on a daily basis and pain medication does little to relieve this. She is 17 and learning to drive but has problems with a manual and may need an automatic in order to pass her test. I can only see it getting worse as she gets older.

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Comment from: angela, 35-44 Female (Patient) Published: July 26

I am 42 and have finally been diagnosed with hyper mobility. I have been called a freak of nature' by docs, as well as been accused of drug seeking. I am in constant pain, use a wheelchair and wear braces on every joint they make a brace for. I need better pain management, but the docs around here are not familiar with EDS. I still keep looking for someone to listen to me and help me.

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Comment from: theslope, 45-54 Female (Patient) Published: April 19

I was diagnosed with Ehlers-Danlos syndrome when I was 17. I have arthritis type pain that they have me on Naporsyn for.

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Comment from: misdiagnosed?, 45-54 Male (Patient) Published: December 17

I have suspected Ehlers-Danlos syndrome since I recently dislocated my elbow by putting my arm out to stop a slip and fall. At age 50 that was my first bone break or dislocation that did not pop back by itself. I have known since a kid I could touch thumb to forearm, palms to floor, etc. I am a marginalized (by HMO) chronic pain patient of last 15 years because I do have herniated disc with pain in back, but also traumatic injury to tendon attachments in ischial tuberosity region. Doctors don't like to talk about it, so they say they give me extended release morphine for back problem. Saw a rheumatologist and he said (after I showed him my "range of motion" that I had benign hypermobility syndrome, but not EDS hypermobility because I did not have the characteristic EDS skin. I am wondering how often EDS is misdiagnosed as non EDS hypermobility syndrome? How do I get a proper diagnosis? I'd hate to die of an aortic aneurism like grandpa at age 48 because of a missed diagnosis.

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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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