Patient Comments: Ehlers-Danlos Syndrome - Treatments

How was your Ehlers-Danlos syndrome treated?

Comment from: Cheryl, 35-44 Female (Patient) Published: April 30

A couple of years ago I finally found out I have Ehlers-Danlos syndrome. Same as many of you, I have had knee surgeries, shots, ankle sprains, popping in and out of joints. Every morning I have to pop my knees and ankles 'back into place' before leaving the bed. Too much ibuprofen led me to prescription NSAIDS. I use gels, creams, and Biofreeze on knees on top of drugs. Now my doctor wants me to change to prescription cream. Helps some, but nothing seems to work for taking away the pain. People don't believe you are in pain when you look normal. All I see is that it will get worse. I am 53 years old now, I don't know how much longer I can go on.

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Comment from: BC Lady, 55-64 Female (Patient) Published: November 05

As a child-teenager my knees easily dislocated, so I couldn't do contact or field sports, skiing, or gymnastics. Later my shoulders would easily pop too. My skin is very soft and stretchy, cuts bleed easily, and scars do form; eventually a dermatologist diagnosed me with Ehlers Danlos syndrome when I was about 45. I've had major/minor orthopedic surgery on my knees every decade starting in my 20s; both knees have 6 inch scars. I started strength training at 36 and have kept it up all these years (I'm a very fit 60 plus lady now. The gym workouts made a big difference to my quality of life; having strong muscles surrounding the patella and shoulder joints meant I no longer dislocated anything. Stronger, dense bones helped too. However, my gums receded more than population norms and I now have early arthritis. Still continued (Mediterranean) diet and exercise and a disciplined life have left me stronger and healthier. My heart is good, I've remained slim and there are many other health benefits. Advice: had I been diagnosed sooner I would have started strength training earlier and maybe avoided so much surgery.

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Comment from: TiaEstrella, 55-64 Female (Patient) Published: March 11

I am 62, diagnosed with Ehlers-Danlos hypermobility about 15 years ago. I believe I inherited the syndrome through my mother"s family, which has a long history of being double-jointed. My children and grandchildren appear to be symptom free. After too many years on Celebrex, Ultram, naproxen and other heavy-duty painkillers, a doctor of naturopathy helped me to wean off the drugs. I experienced more pain relief through non-processed natural foods and nutrition than I ever received from the drugs. Of course, nutrition does not cure EDS. In recent years I have received physical therapy and wear leg braces to minimize dislocations. My service dog enables mobility without the wheelchair. I continue very mild exercises and remain drug-free with careful nutritional discipline.

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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: 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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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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