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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 07-09-2018, 12:11 PM   #1
BioBased
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I was so fed up with telling doctors I thought I have it in both hands and then getting nothing for a response, that I email begged my PCP for hand xrays on Thursday, had the xrays on Friday and the radiologist’s report on Saturday, and yes I am not crazy, I have it in both hands. I feel vindicated, but not victorious. Why? Because I also know I have it in my gut, my eyes and my eyebrows. There is no scientific way to prove these complaints are CRPS related, but damn they make my life miserable. I was just lucky that I had a fall in 2015, because there were hand xrays to compare. No CRPS, back then nothing.

I truly believe if I had never taken LDN I would be in a nursing home waiting to die.
My reason for writing this post is to tell you, don’t give up. And if you think it is CRPS, it probably is.
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Old 07-09-2018, 09:24 PM   #2
catra121
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I am so sorry. I know that feeling well when you know something to be but can't get people to listen. Right now I have a bit of the opposite going on with my shoulder. Deep down...I feel that is NOT rsd...but I can't get anyone to listen. It's hard to describe but when you have rsd...you KNOW what that feels like and this is just different and I feel like if they really looked they would find some kind of a bad tear or detachment in there because almost 3 years later and I cannot lift that arm without a terrible ripped/tearing pain and the only thing that makes it better is pressure on that spot along my scapula. My husband found an article about an obscure type of muscle tear that is almost always sports related...often in water skiers...but it fits my symptoms almost exactly and when I fell that arm got stuck as I fell and I ended up turning mid air because it got jerked (much as one might imagine an arm getting pulled when, say, water skiing). So we'll see what the Dr thinks of that Thursday. I have to take some notes so I remember to ask about it.
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Old 07-11-2018, 10:22 AM   #3
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Quote:
Originally Posted by catra121 View Post
I am so sorry. I know that feeling well when you know something to be but can't get people to listen. Right now I have a bit of the opposite going on with my shoulder. Deep down...I feel that is NOT rsd...but I can't get anyone to listen. It's hard to describe but when you have rsd...you KNOW what that feels like and this is just different and I feel like if they really looked they would find some kind of a bad tear or detachment in there because almost 3 years later and I cannot lift that arm without a terrible ripped/tearing pain and the only thing that makes it better is pressure on that spot along my scapula. My husband found an article about an obscure type of muscle tear that is almost always sports related...often in water skiers...but it fits my symptoms almost exactly and when I fell that arm got stuck as I fell and I ended up turning mid air because it got jerked (much as one might imagine an arm getting pulled when, say, water skiing). So we'll see what the Dr thinks of that Thursday. I have to take some notes so I remember to ask about it.
Please let us know. I visited my surgeon, just to confirm that it is RSD, not arthritis (he said I have none)and told him about my other issues, and his reply, you are not wrong, you know your body. So good luck, I hope you get a diagnostic test to help you confirm.
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