Patient Comments: Ehlers-Danlos Syndrome - Treatments

Question:How was your Ehlers-Danlos syndrome treated?

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.

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.

Comment from: Jason, 35-44 Male (Patient) Published: September 30

I am a 38 year old male, and was diagnosed with Hypermobile Ehlers-Danlos syndrome in 1987 at the age of 14. I was fortunate to be diagnosed so young. Being diagnosed so young slowed the degeneration of my joints, but did not stop it. I am treated with a daily regiment of pain killers, and anti inflammatory meds. Those are to maintain some sense of mobility on a daily basis. For more severe flare ups of my knees, hips, or ankles there are usually steriod injections, or oral steroids.

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.

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.

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.

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.

Comment from: JoeBrewer, 25-34 Male (Patient) Published: November 14

I was in the US ARMY when I was diagnosed with Ehlers-Danlos syndrome. Since then I was medical boarded out as when I ran often my knees would "pop" while it was what they called a minor subluxation, I called it major pain. I have dealt with it as best I can. I lost any ability to jump. To those suffering, I hope soon doctors learn more about this. You will find many whom want to give you some over the counter medications and truly lack the understanding of the pain you feel. I was on Lortab for some time to help but now have Tramadol which is doing nothing. I know have turned to alcohol as the doctors have failed me.


Patient Comments

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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 - Treatments Question: What treatments or lifestyle changes have you experienced that has helped symptoms of Ehlers-Danlos syndrome?

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