I'm in pain

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Hi everyone!  I'm new to the forum and looking for answers, advice and support.  I have a connective tissue disorder called Marfan Syndrome.  My left knee was reconstructed 40 years ago.  I was told it was bone on bone about 10 years ago and was put in $$$$ knee brace.  My right knee was also braced because of hypermobility.  I started having knee pain (left knee) over a month ago and it got progressively worse to the point I had to get crutches.  Over a week ago I received a cortisone shot and it did not help at all.  I have pain even at rest.  The worse pain is on a scale of about 100....it's like a knife and it sends me into orbit.  Has my knee reached the end of its mileage?  How do I get through this pain?  I appreciate any input.  Thanks!

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  • Posted

    I also wanted to add the pain is affecting my left hip.  It feels inflamed and the pain runs up my outer thigh as well.  It is hard to get comfortable when trying to go to sleep.  I sleep with an ice pack.
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  • Posted

    hi, both my sisters had marfan syndrome not many people have heard of it,i  feel so sorry for you.both my sisters worked but 20 years ago.the doctors  were not very interested in them.i know this does not help you ,with your problem,but i hope you have lots of response. pam 
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    • Posted

      Thank you Pam for responding.  There are new thearpies on the horrizon, i.e. Stem Cell injections into the joint.  I am hopefull that this will one day soon be approved in the U.S..  In the meantime, I hope the docs are willing to keep me as comfortable as possible.  The pain is almost more than I can bear.  If I move, especially at night, I get a sharp pain.  It is hard to find a comfortable/painless postion.  I'm holding on to see the ortho this Thursday...hoping to get some relief.  
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  • Posted

    I believe you have answered your own question. If you have been going through all kinds of treatments to avoid surgery for a number of years, it might possible be the right thing to discuss that alternative and any others that may be available.
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