Patient Comments: Ehlers-Danlos Syndrome - Treatments

How was your Ehlers-Danlos syndrome treated?

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: 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: 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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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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