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 10-03-2007, 07:06 PM #1
wakegirl wakegirl is offline
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Default has anyone ever done the whole in person group thing?

i am asking because my doctor asked if i would be willing to meet with a group of newbies and try to help them.
my question is if you have attended a group meeting was it a just a question answer set up or was there a whole power point program
i guess my question is do you think it would be more helpful to just answer questions they have and go from there or should i have the information laid out before we start
any input would be appritiated, i have been playing this game so long i dont really remember what would have helped when i started down this uncertain path
thanks in advance
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rsd following a botched epideral for knee surgery 1993
remission from 99-2003 shoulder dislocation 2003
CRPS Type 2 scs (cervicle 2005) (lumbar 2007)
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Old 10-03-2007, 08:10 PM #2
tayla4me tayla4me is offline
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Hello wakegirl,

Yes, this is a part of the treatment in the pain management group I attend.
Our meetings are informal with everyone sitting around in a circle in comfy chairs and drinking coffee.
Questions just flow and there is usually someone who has an answer that may help but having said that it does sometimes depend on the dynamic of a particular group.
I have left some that were turning into massive 'pity parties'--these are NOT what is needed but unfortunately there will always be the odd person to whom this illness thing is a big competition with the others.
Cheers Tayla
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Old 10-03-2007, 08:40 PM #3
carose carose is offline
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others not only helps them, but it helps you so it is a win-win. I belong to a wonderful support group.Since you will be helping newbies it would be helpful to sit down and talk about some things that apply to most of us. Such as depression, because of pain. People not understanding. Hyper feeling with touch and how to lessen these feeling ( the first time I took a shower I thought the water felt like needles being driven into my skin- short shower)Maybe a few books that they can read and of course US Allow a short period for Q&A found out what they would like to go into more depth with for the next meeting. Our leader has speakers about every three or four months, but she always had a topic and does not allow it to become a pity party. She encourages us to share what helps us. Also she tries to have a hand out on some new research or med or something of interest. We have light refreshments, usually veggies and dip with a drink. We pay $10. a year, if we can afford it, otherwise it is free. Hope this helps, I'll be happy to share more about our meetings if you are interested.Carose
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Old 10-03-2007, 09:40 PM #4
debbiehub debbiehub is offline
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I co-chair a group once a month- If you contact Jim Brotch at the RSDSA site he may be able to give you some free handouts- We usaully start by going around the table and letting people speak for about 10 minutes- Then we TRY to stick to a topic like strategies in dealing with pain- There is a book "positive options for RSD that may be helpful and I think Jim has a list of topics. We try to not let anyone dominate the floor but sometimes we get off track on a different subject. I look forward to our group and a few if us are starting to meet in the middle of the month for lunch. You know the saying Misery loves company- Its so true to see your not alone!

Hope that helps
debbie
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Old 10-05-2007, 02:12 AM #5
wakegirl wakegirl is offline
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Default thank you for the help

it sounds like the best idea is to gather some basic information that will answer some of their questions, then allow sometime for each of them to talk about where they are now, and then opening it up to a q&a

i think i can handle that. i agreed when my doctor asked and then i started to get nervous that i might not be the right person. i honestly thought the reason she asked me was because i was the last one on the list and everyone else had said no. i spoke with her today and i called her on it and i was wrong, i was the only one she thought of for this group. apparently it is like 5 people who between the age of 12 and 30 who have been diagnosed and transfered into her care in the last couple of months who are all having a hard time adjusting

anyway thank you for your responses i will certainly spend a little while at a few of those must have rsd bookmarked websites and gather some information. since these guys are so young my guess is the first thing they did when they got a dx was get on the internet and start searching for answers and for information. sense ajustment is their current issue i at least have a better idea of why she asked me.

you guys rock even for the random questions i feel compelled to ask
thanks so much
__________________
rsd following a botched epideral for knee surgery 1993
remission from 99-2003 shoulder dislocation 2003
CRPS Type 2 scs (cervicle 2005) (lumbar 2007)
Strong mind Strong body
.
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Old 10-05-2007, 10:42 AM #6
screwballpookie screwballpookie is offline
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I have no groups in my area that i know of if there was any I would be going to them every chance I get.I live in Iowa and that I know of most people in my area have never heard of rsd. I would love to attend a group if I knew of any nearby.

Tracy
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