Patient Comments: Ehlers-Danlos Syndrome - Treatments

How was your Ehlers-Danlos syndrome treated?

Comment from: erink, 35-44 Female (Patient) Published: February 15

I've had 3 successful procedures that have greatly improved my pain and mobility issues. After a decade of being misdiagnosed and treated for rheumatoid arthritis with chemotherapies and biologics I sought one last opinion and finally a new, young rheumatologist shed light on what was wrong. This Ehlers-Danlos syndrome had been the problem all along. My leg pain was most disabling (could not even stand long enough to shower) and my doctor decided to do ultrasound guided injections to both knee bursa with steroid and lidocaine. The same treatment was given all along the ligaments in both feet and ankles as well. After a few weeks of healing, I was very aware that my pain had decreased significantly. This was 5 years ago already. Last month I had a procedure on my veins in my leg since my vessels and veins got incompetent and too wide; endovenous thermal ablation. It took a month to recovery but now my pain has decreased by about 60 percent, which is major. For the 1st time in over 10 years I can at least hold a job now and depend for the most part, on my body. I'd suggest talking about these treatments if your problems are similar.

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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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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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