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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Anyone going to the SC RSD conference in August? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/126186-sc-rsd-conference-august.html)

firegirl 06-29-2010 12:42 PM

Anyone going to the SC RSD conference in August?
 
I was just checking to see if anyone is going. It is August 14th in Greenville, SC. More info is on the SCRSD website. Registration is $35. Last year i took my boyfriend of 12 years. It meant sooo much for him to drive 3 hours, spend the weekend in Greenville, & go to the conference. I must say that we were disappointed with the speakers. The main RSD talked about fibromyalgia half the time & the RSD info was very basic. Then, they had a psych doctor speak who talked about 30 min. on how we should feel guilty having RSD. That made everyone in there mad. There were supposed to be patient stories, which never happened. If I lived closer, I would probably go just to go. But, I am not driving 3 hours & paying for a hotel, gas, & food for the weekend. Don't mean to discourage people from going, I just want them to know what to expect. You can learn just as much typing RSD into Google & reading for 5 minutes. Some people may enjoy it if they are very new to RSD. I talked to other patients during breaks & they agreed that his suggested treatments were too invasive & expensive.

kathy d 06-29-2010 02:03 PM

Dear Firegirl,
What? We should feel guilty about having RSD??? Was that doc crazy? I hope you spoke to him after the conference or at least mailed him a letter saying we should NOT be guilty because we are the people in pain!! I wonder if you can recall his wording and his address so we could ALL bombard him with our points of view. It would teach him to mess with us and putting out incorrect information to all.
Amen.
kathy d

Jimking 06-29-2010 02:46 PM

I'm a little confused. Why would the doctor state that those with RSD should feel guilty? Did he give a reason?

firegirl 06-30-2010 12:25 PM

All my RSD brain can remember was him saying we should feel guilty that we cant function as much as we would like to. He said that was ok to feel guilty.He said we were affecting others lives negatively, but that we had to. So, it was ok to feel guilty. My bf looked at me in amazement many times during his speech. It was a psych doc that deals with pain. He should have used his time to teach us coping techniques, not make us feel bad about ourselves. We talked to other patients about it during the next break at the conference & they felt the same way. It's too bad bc we were all looking forward to RSD related psych info.

Jimking 06-30-2010 12:57 PM

Quote:

Originally Posted by firegirl (Post 670245)
All my RSD brain can remember was him saying we should feel guilty that we cant function as much as we would like to. He said that was ok to feel guilty.He said we were affecting others lives negatively, but that we had to. So, it was ok to feel guilty. My bf looked at me in amazement many times during his speech. It was a psych doc that deals with pain. He should have used his time to teach us coping techniques, not make us feel bad about ourselves. We talked to other patients about it during the next break at the conference & they felt the same way. It's too bad bc we were all looking forward to RSD related psych info.

I think I understand what he was saying. Many of those with RSD feel a great amount of guilt because of the possible burden put on others, the fact that most people just do not understand the disease at all, and not just layman but doctors too, adding more complexity to an already bad situation thus adding more guilt to many.


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