Patient Comments: Ehlers-Danlos Syndrome - Symptoms

What symptoms have you or someone you know experienced with Ehlers-Danlos syndrome?

Comment from: LC, 45-54 Female (Patient) Published: May 24

I have had multiple knee dislocations since I was 11. That led to my first knee surgery at 17. Throughout my life I have had multiple ankle, wrist, and shoulder dislocations. Since they were treated independently as they occurred, I was diagnosed with Ehlers-Danlos syndrome type 3 at the age of 48. Now at 59, I'm also having the joints in my lower back giving me trouble, that's besides the elbows, wrists, shoulders, and knee pain. The only thing that really has helped for the pain is ice packs. I also take Naprelan (NSAID) occasionally. This one doesn't hurt my stomach, since it gets digested in the intestines. Swimming helps my back pain and keeps most of my muscles tight. I also do mild weight exercises at the gym to keep my muscle strength. My 2 kids have been on swimming teams since they were 5 years old (they are 20 and 27 now) and I believe that prevented them from having my chronic knee dislocations. One exception, they couldn't do the butterfly stroke because it would dislocate their shoulders. I truly believe swimming helps!

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Comment from: Concerned Parent, 25-34 Female (Caregiver) Published: February 23

My daughter has Ehlers-Danlos syndrome type 3. She is currently in the hospital experiencing weakness on the left side and severe nerve pain in her feet when she tries to walk. Her symptoms present like a stroke, but the numerous tests do not show she had one. They are giving her Neurontin and muscle relaxers and she has been able to walk some.

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Ehlers-Danlos Syndrome - Treatments Question: How was your Ehlers-Danlos syndrome treated?
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 - Experience Question: What lifestyle changes have you experienced that has helped symptoms of Ehlers-Danlos syndrome?

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