Patient Comments: Ehlers-Danlos Syndrome - Experience

Question:

What lifestyle changes have you experienced that has helped symptoms of Ehlers-Danlos syndrome? Submit Your Comment

Comment from: crazy dave, 55-64 Male (Patient) Published: October 29

I was diagnosed with Ehlers-Danlos syndrome (EDS) at 11 years of age. Hypermobility of joints has caused many dislocations of shoulders, knees, and fingers. I am now 62, and I can tell you that the best remedy is low impact exercise and a lot of it. The stronger the muscles are, the more support the joints have. Please try to back off the narcotics, if humanly possible and get plenty of vitamin D and protein in your diet. Good luck!

Comment from: Mommaofmany, 35-44 Female (Patient) Published: October 16

I only discovered the name Ehlers-Danlos syndrome a couple of years ago. I have always subluxated and dislocated easily, especially my right knee and hip. Bruising easily, bad teeth, very fast births, joint pain, all add up to EDS Type 3. Nearly ten years ago, I had such pain in my joints that I couldn't stand to be touched, even by my children! Everything hurt. I read about kombucha, a cultured tea that helped joint pain, so I tried it. It took about 3 weeks, but I noticed that my pain was gone! Later, I thought it was a fluke, and I got lazy and stopped drinking it. The pain came back. Now, ten years later, I am a faithful kombucha drinker. The subluxations and the dislocations continue, I still bruise easily and all the rest, but I am joint pain free, with no medication. I have changed my diet some, too, to reduce inflammation, but the pain was gone once I used kombucha, even when my diet was full of processed foods.

Comment from: Madora Pennington, 35-44 Female (Patient) Published: August 28

Daily injections of vitamin C have helped my Ehlers-Danlos syndrome (EDS) symptoms immensely. A lot of our symptoms are symptoms of vitamin C deficiency. I've also done prolotherapy, platelet rich plasma shots, shots of amino acids that build collagen and physical therapy on a power plate - that machine rocks. It stimulates the nervous system too, which led to a lot of healing. But Vitamin C made the biggest difference. Healing takes time. I swear the shots hurt less as I healed and got stronger. They hardly burn anymore. Not because I got used to them, because I've healed so much. I've done shots of daily vitamin C for several years. I'm still hypermobile. But all my symptoms are better with vitamin C - fatigue, energy, insomnia, bruising, skin tearing, and hypotonia.

Comment from: luminousowl, 45-54 Female (Caregiver) Published: July 03

My clients with Ehlers-Danlos syndrome have found much improvement and pain relief from drinking nettle tea (this helps assimilate iron).