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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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#1 | ||
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I have finally been diagnosed with CRPS after almost 10 years of pain. I just got the diagnosis today. So to all the DRs over the years that have said its all in my head and I just want pain meds because Im a junky I am vindicated. Now its a matter of finding the right treatment for me. I have had 1 sympathetic block that only worked for a couple days and my PM wants to do another one.
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#2 | ||
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It's like a double edge sword. But you truly can't address a health issue properly until you get a diagnosis. I remember having mixed feelings when I got my diagnosis. But the anger turned to resolve. And things CAN get better.
This is a great website to learn about CRPS, to vent when you have a bad day, and to get support. Curious, who gave you your diagnosis and how did they come to that conclusion? Good luck to you Allanira! Last edited by birchlake; 04-11-2013 at 07:21 PM. |
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#3 | ||
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10 years is ridiculous, after all, this condition has been known for 150 years. Sometimes I get the feeling many doctors know what it is or have a hunch but blow many patients off because they do not want to deal with it. Without a diagnoses its easier for a doctor to make a claim that a patient is faking, somewhat, but many with a diagnoses have also been accused of drug seeking and "its all in your head" mumbo jumbo. As I've stated in other threads "Who the heck ever fakes this disease?" let alone most layman never ever heard of it. And if a fake did know about it, it would be one condition a faker would not even attempt!!
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#4 | ||
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I think sometimes the longer you wait for a diagnosis, the more likely it is you've accepted the potential future duration of your pain, and therefore the more uplifting it can be. Don't get me wrong, noone wants this diagnosis, but having any diagnosis is a result after waiting so long with people disbelieving you. Having a name for it doesn't make the pain worse, at least you get to know what it is and what you can or can't do about it. My congratulations (and commiserations) to you. I had the same result at the end of March after 4 years of high level pain and 14 since it all started. I don't like having CRPS, but I did want to dance and say "Stick that in your pipe and smoke it" to the doctors who had treated me like a drugseeker.
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#5 | ||
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I also just finally got diagnosed and posted a thread double edge sword. I am also bothered to read that many can go into remission if it is treated early. Since I had docs thinking I was faking seizures and my pain now for almost 3 years, it is now going to be harder to treat. I had a seizure once in the bath and was drowning and my daughter saved my life and they still thought I was faking. Then they said it was conversion disorder and in my mind I felt they were still trying to tell me it was all in my head. I ended up with a really good psychiatrist who squashed all those theories. I really like my new primary care physician but even she has never heard of this disease and had to be taught. I hope she has also done her own research. I haven't seen her yet since I just got diagnosed but I plan on seeing her next week. I really do understand all of the emotions that comes with finally being diagnosed!!!!
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#6 | ||
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I have mainly had all military DRs except here and there when they sent me off base to a civilian DR. The PCM that I have right now is about to get stationed in Germany. It sucks. The first DR I get that actually listened to me and treated me like a real person is leaving. I don't know who my next PCM is going to be and if the next one will LISTEN to me. My PM won't prescribe any meds. He does shots only. If someone had listened to me when I had been in the Military and had just gotten back from Iraq then I could have gone into remission and not been hurting so much all these years. But hey I'm just a junky that wants a fix. Atleast that's what they were saying. Now they can't. Also has anyone ever put in for disability for this condition in the USA?
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