Patient Comments: Ehlers-Danlos Syndrome - Treatments

How was your Ehlers-Danlos syndrome treated?

Comment from: emelou47, 25-34 Female (Caregiver) Published: February 08

My partner was told as a child aged 10 to 15 she had Ehlers-Danlos syndrome and at the moment at the age of 30 she is losing muscle strength in her arms legs and is having severe back pain. So far nothing seems to be easing the pain she is in. I just want to be able to support her in the best possible way.

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Comment from: Daisy, 25-34 Female (Patient) Published: October 30

This is my first Bartholin cyst. I've had it for 3 weeks now and have been treating it with witch hazel, tea tree oil and 5 percent iodine. It is no bigger than a small pea but won't seem to pop or go away. I can only guess that it hasn't gotten any bigger or infected because I started treating it immediately. The idea of getting it lanced does not appeal to me but I may not have a choice.

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Comment from: amcariboo, 35-44 Female (Patient) Published: January 08

I was diagnosed 6 years ago with EDS (Ehlers-Danlos syndrome). I have since 2001 undergone 10 surgeries. One was for my shoulder which separated and also for uterine prolapse. The prolapse happened when I was 25 and I had to get a hysterectomy. I was grateful to have been able to have had two daughters even though they were early due to the fact my body cannot support the weight of a child. My hips now dislocate at will and have had to call 911 once because it did not willingly pop back in. What I have is the looks I get. I am bruised from head to toe and I look like I have been beaten. I have also had to have a heart ablation. I hope that my children do not have this as no one else in my family does. We think my grandmother had it but, we do not know for sure. I wish every day for a new way to cope but, as of now I just take my medications like a good girl and appreciate the days when I can function and do stuff with my daughters.

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Comment from: lochmessy, 55-64 Female (Patient) Published: June 17

I have type 3 Ehlers-Danlos syndrome (EDS). I was adopted, so not diagnosed until late 40s. I have had about 20 operations, as I was not diagnosed and a lot of surgery went wrong and had to be redone. I live on pain killers, go to a pain doctor constantly. I suffer mostly and not always silently.

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Comment from: Just Me, 55-64 Female (Patient) Published: January 06

I was an athlete in high school then my shoulders started dislocating. The surgeon did not diagnose, he just rotated my shoulder in the socket and pinned it. The result is that at 55, my back is always tweaked. The good news is, as I get older, I am in less pain than when I was younger. I wasn't diagnosed with Ehlers-Danlos until I was 21.

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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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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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