Patient Comments: Ehlers-Danlos Syndrome - Treatments

How was your Ehlers-Danlos syndrome treated?

Comment from: James Aquila, 35-44 Male (Patient) Published: March 22

I have Type III Ehlers-Danlos syndrome, which I inherited from my father. I have been using Solomon's seal and hyaluronic acid to support my joints, tendons, and ligaments. They are really helping with the inflammation, spasms, and pain. They do not provide total relief, but are worth the time and effort. I also take prescription medication because supplements can only do so much. I only use the supplements with the full knowledge of my physician to prevent any unwanted interactions.

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Comment from: christielucy, 35-44 Male (Patient) Published: December 02

I had a karmic reaction when I was pretending to kick some one. My hamstring tightened immediately and I hobbled off quite defeated. The pain is in my hamstring but travels through around my hip into my groin. I am not sure if I should bother my doctor with this but some movements cause light popping even now.

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

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