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  #1  
January 5th, 2010, 06:15 PM
frgsonmysox's Avatar Platinum Supermommy
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Around a year ago I began having issues with my elbow. I would go to straighten it and there would be immense pain, a pop, and then it would straighten. I was told it was due to the Ehlers-Danlos and was placed in physical and occupational therapy. For the past year I've been in and out of PT and OT, used hot and cold treatments, compression therapy, and drug therapy. My elbow, and both wrists have not been able to be rehabilitated. I DID rehabilitate my legs after losing my ability to walk last October. I've been trying to get an appt with Ortho to discuss surgery but they kept denying my referral. My doctor finally had me come back in to discuss other options, and took one look at my elbow and freaked out. He said it's pretty much completely destroyed. He thinks the joint is completely gone, the muscle, tendons, and ligaments are torn, and he's not sure they WILL be able to fix it. I have an MRI on Thursday to see the extent of the damage but he assured me if it can be fixed it will have to happen surgically. My wrists are not as bad and may require pins/wires, or a fusion.

I know I've talked about EDS on here before, but it's hard to really picture what it's like. I took some pictures to give you a slight idea of the damage.

**This is my left wrist, the worse of the two. A STUPID friggin doctor decided he would treat me as an RA patient because he didn't want me to be affected insurance wise as an EDS patient (even though my insurance is tricare and therefore not an issue). I trusted him to not do anything that would be BAD for my EDS but he did it anyway. I was given a cortizone shot in my wrist that completely destroyed it, and was only told afterwards the EDS patients should not use steroid treatments as it erodes our joints quicker. This is the damage left. This is my wrist in normal relaxed mode, I can no longer bend it the other way at all.

And this is the range of motion I have in it.

This is my right wrist, its not as bad, but it has lost some range of motion. However, the bone protrudes quite a bit, as you can see (it's not super clear in this picture).


And this is my elbow. I have both arms raised so you can see how bent it is. It's permanently in this position. This is my dominant arm and I have now had to learn to use my left hand to feed myself and so forth as my arm no longer bends to reach my face. (you can also see how bent my wrist is) Ignore my face, Chris got me mid blink.



I tried to get a picture so you could see how swollen it is. You can see my bone, and then next to it is a huge mass of swollen tissue.


And this is me trying to supine my arms. My good elbow is supined, but my bad one no longer can. The joint is so bad I can't turn my arm over palm side up any longer, I can only swing it out and in, using my shoulder.



EDS is so poorly known about that it's sort of a passion of mine to get people to hear about it and realize that it's a horrible condition that CAN be treated if more people demanded it. There is a treatment that is promising in the UK that is not legal to use here - lobbyist and the such....
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  #2  
January 5th, 2010, 06:19 PM
Emm17's Avatar Platinum Supermommy
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Oh wow.....I have heard you mention it before, but you're right, I didnt realize what it was about.

Im sorry you have to go though this. I hope you can find a better treatment for it.
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  #3  
January 5th, 2010, 06:31 PM
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That looks so incredibly painful. I can't imagine how hard it is to handle especially with kiddos running around. I hope you are able to get some relief soon.
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  #4  
January 5th, 2010, 06:34 PM
lilflower
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This really makes me want to cry. I cannot imagine the amount of pain that causes in daily life, much less the hassle. ((hugs))
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  #5  
January 5th, 2010, 07:34 PM
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I just wanted to post to say - I'm so sorry! My mommy has EDS =( I have watched her suffer from it my entire life. She feared for me having it, and fears with each child I have. I do not *understand* from experience but I understand from observation - and I am sorry you're having to go through it.

My mom is also 44 and has already had one total knee replacement. She had it about a year ago, and mentions daily how it was the best decision she ever made in her life.

Now shes having more problems with her hips, and hands again. =(

And also - yay you for going through the pregnancies with it! My mom got a tubal because she couldnt tolerate what pregnancy did to her, and I am an only child. You are definately a strong, valiant woman.
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  #7  
January 5th, 2010, 07:43 PM
frgsonmysox's Avatar Platinum Supermommy
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Quote:
Originally Posted by RawrDiino View Post
I just wanted to post to say - I'm so sorry! My mommy has EDS =( I have watched her suffer from it my entire life. She feared for me having it, and fears with each child I have. I do not *understand* from experience but I understand from observation - and I am sorry you're having to go through it.

My mom is also 44 and has already had one total knee replacement. She had it about a year ago, and mentions daily how it was the best decision she ever made in her life.

Now shes having more problems with her hips, and hands again. =(

And also - yay you for going through the pregnancies with it! My mom got a tubal because she couldnt tolerate what pregnancy did to her, and I am an only child. You are definately a strong, valiant woman.
Thats amazing that you mom has it! Not good amazing, but its so rare I hear of anyone else having it. Sometimes it's quite lonely.

I get asked all the time why I keep having and wanting more kids. EDS has already taken away so many of my dreams, having a large family and having more kids is one dream I will NOT let it take from me. I may not always be able to do everything for my kids - but I still do quite a bit for them and with them. And since I now know what EDS is and can look for it there are certain things I can do to prevent my kids from having the same issues as me.
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  #8  
January 5th, 2010, 09:43 PM
..Penelope..'s Avatar Platinum Supermommy
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I'm so sorry
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  #9  
January 5th, 2010, 10:39 PM
SusieQ2's Avatar Jersey Girl
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Oh Beth that's awful. I know there's been a lot of talk around here lately about medical malpractice suits and I'm normally not a big supporter of such suits but it sounds like you'd have a case against the Dr who gave you that shot. He did something that cause you permanent damage even though there was evidence saying that it wasn't a safe or effective treatment for people with EDS.
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  #10  
January 6th, 2010, 09:29 AM
irishxrose
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Oh Beth. I'm so sorry sweetie. I sincerely hope they can fix your elbow and wrists, and if not fix them completely, at least a little bit to alleviate the pain. I can't even imagine the pain you go through each day. You are so strong!

Love you!
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  #11  
January 6th, 2010, 10:10 AM
TheOtherMichelle's Avatar Platinum Supermommy
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I'm so sorry! I can't imagine how debilitating that is. I will pray that there is something that can be done to help your elbow at least a little bit.

Would you ever consider a malpractice suit against that doctor? A chunk of money could help you with medical costs that tricare doesn't cover or give you better options for PT or alternative treatments.

I knew someone a few years ago with EDS, but from the outside you couldn't tell there was a problem, so it did not appear nearly as severe as yours.
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  #12  
January 6th, 2010, 10:21 AM
frgsonmysox's Avatar Platinum Supermommy
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There are 12 types of EDS, mine is the less severe form. Had I known I had EDS I could have taken precautions to preserve my joints, but I wasn't diagnosed until I began having really bad issues - and then most of what I've learned has been self taught as a lot of doctors dont know much about it. Based off my EDS board, I'm very lucky with how my body has handled it.

Chris and I aren't sue type people. It sounds stupid because we're both angry at the doctor but I don't think suing will do us any good. My wrist is what it is now. I would have needed surgery eventually, now I just need it sooner. And we don't have the funds to sue anyway
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  #13  
January 6th, 2010, 01:16 PM
SweetSimpleThings's Avatar Platinum Supermommy
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Beth, are there any groups working on promoting education/changing the rules. I mean, the treatment in the UK, is there any where your friends and family (and perhaps us) can go to add support to a petition to allow testing in the US??
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  #14  
January 6th, 2010, 01:29 PM
frgsonmysox's Avatar Platinum Supermommy
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As far as I know there is no petition. EDNF.org is the main source of information and legislation. Mainly it's trying to spread awareness so that other treatment options can be discovered and approved.
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