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Old 10-28-2013, 12:20 AM
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SloRian SloRian is offline
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Join Date: Apr 2013
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SloRian SloRian is offline
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Join Date: Apr 2013
Location: Phoenix, AZ
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Quote:
Originally Posted by AZ-Di View Post
I agree Bram, I wish they could stick with one name. When I use both CRPS/RSD it seems to confuse lay people. They get a look on their face as if
"do you have both or are your Dr.s not sure which one"? And then so many letters. I realize that CRPS should be the universal name and that RSD is old school. But in a way Complex regional pain syndrome makes it sound like there is pain in one region. Then I wonder if people just think "oh, your (arm/foot) hurts so take a tylenol or an aspirin and get on with it." I just wonder if including the word "dystrophy" helps with understanding. Any thoughts?

Quote:
Originally Posted by RSD RENEE View Post
I tell people that I have rsd and that it's not muscular dystropy, but nerve dystrophy.
I read somewhere that if you say that, people may understand it better. I've tried and it did seem to help with some people.
We started out using CRPS because that's what the doctor called it - he said it was the newer name. He pronounced it "crips" instead of just saying the letters. However, I tended to see more info on RSD, plus my sister said she hated hearing something that sounded like "crypts", plus frankly, "Complex Regional Pain Syndrome" has the same "feel" as Chronic Fatigue Syndrome - the first sounds like you just kind of hurt all over a bit, instead of the terrible, devastating pain that it really is, and the second sounds like you're just a bit run down, instead of the terrible devastating fatigue that it really is. I think RSD, when you say what the letters stand for, just sounds more impressive. It's hard enough to get people to understand even an inkling of what this is, so whatever help we can get, I use. We've switched to RSD.

I might start using the muscular dystrophy explanation - that might help, because people understand that MD is a terrible disease.
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