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Who has had joint replacement? Was it successful? I am 37 and had bilateral total knee replacements, and I still have debilitating pain and loss of function. I am I unable to work or do much of anything.
I’m so sorry to hear about that. 🙁 I was hit and run over by a truck and my left knee is in bad shape. But I hear this so often (and know that we are prone to osteoporosis and high pain levels), so I just try to get by! I do know of one patient who has had most every joint replaced that she has! She is doing “OK”, but she seems to be a rare bird in this crowd! Do you have a good pain doctor?
Dr. Diana,
My pain management doctor is okay. He at least knows what EDS is and has several other patients with EDS. That is a start, right? Lol. He a typical pain management doctor-suspicious of everything. Pain management is a loose term. I have two types of pain, tolerable and intolerable. I don’t remember any more what it feels like to not be in pain, and my tolerable level is someone else’s debilating pain. Everyday is a struggle and I am on two high dose narcotics. They only take the edge off. I am going to have to go on disability. It is a hard thing. I love being a microbiologist and I am good at it. I really love teaching students and doctors. I am in mourning of all the things I like to do, but can’t. I feel like EDS has taken all from me. I really worry for my kids and their future.I completely understand, Lab-Scientist-Lady!!! Mourning is a journey, and I still struggle with it at times. I’ve decided that if my path has changed, I need to make the best of it, so I decided to throw myself into getting “real” answers instead of “symptomatic help” for me, sure, but mainly for my kids and everyone else suffering. My research indicates that many of our problems are avoidable. I think doctors relied on “genetic defect, therefore you need to live with it” for too long. I pray that my work will make this condition a nuisance — loose joints. That is what it “should be”, right? 😉
I completely understand, Lab-Scientist-Lady!!! Mourning is a journey, and I still struggle with it at times. I’ve decided that if my path has changed, I need to make the best of it, so I decided to throw myself into getting “real” answers instead of “symptomatic help” for me, sure, but mainly for my kids and everyone else suffering. My research indicates that many of our problems are avoidable. I think doctors relied on “genetic defect, therefore you need to live with it” for too long. I pray that my work will make this condition a nuisance — loose joints. That is what it “should be”, right? 😉
I appreciate what you are doing. I have been told several times now that there is nothing you can do about it. I asked my PCP if I should try to see a spinal doctor to help keep my back problems from getting worst? She said why? You can’t doing anything to stop it? I was hoping she could help me create a treatment plan. Instead she told me just to accept it and not to waste my time. What was the first thing you did after your diagnosis?
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