Lauren describes her Ehlers-Danlos symptoms

Type 3 Ehlers Danlos Syndrome
Written By:  Lcervetto
lcervetto_2Hi I’m Lauren I’m not looking for sympathy just understanding. I was diagnosed with EDS at age 15. I would always get hurt really easily and would always complain about my joints hurting. I enjoyed running and that kept me in pretty good shape but at age 17 my left shoulder was hurting more then usual and kept popping out of socket. Eventually it wouldn’t go back in and stayed out for 3 weeks before I had surgery on 8/1/11. As my left shoulder got stronger my right got weaker and I had another surgery on 9/23/11. Then I thought I could just deal with the pain and get back to running and have my shoulders redone every couple of years,but my right leg started to turn in when I put weight on it and then my hip started to pop out I had surgery for that on 8/16/12 and after that on my left leg in 12/6/12. I spent over seven and a half months on crouches  learning to walk again. I made it through and now my hands have gotten bad I wear braces at night and when their bad during the day but there’s no surgery to but them back together if they get worse. It’s hard to explain that the surgeries were just to hold me together and that not a day goes by that I’m not in pain. Friends and family don’t know what it’s like to try and sleep when you can’t distract yourself from the pain you’re in. Or that you Can’t sit still because you are in pain. My family thinks that because I don’t want pain meds that I’m not In pain but its because when the meds fade if they work at all the pain is still there and I’m afraid if I took pain meds to control the pain I’m in ill get addicted to them”

 

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  • Lauren,

    I, too, was a runner from 11 until my 20’s. At 32, I have two children and don’t like the idea of taking narcotic pain meds, but I do have to live every day for them. I have found some relief without huge side effects in amatryptaline. It doesn’t eliminate all the pain, but it does help! I still use big pain meds for the really bad nights and have found that if I can take the edge off with half a pain pill, I am able to function much better than without. What I find most challenging is the short temper I have as a result of my high pain. The combination of amatryptaline and reducing that sharp edge helps with my mood.

    Gentle hugs!

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