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  Reflex Sympathetic Dystrophy and Paula Abdul and me
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   Author  Topic: Reflex Sympathetic Dystrophy and Paula Abdul and me  (Read 291 times)
f.r.o.d.o.
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Reflex Sympathetic Dystrophy and Paula Abdul and me
« on: June 25, 2005, 05:46:30 pm »
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My dear A& F friends .. I was so happy when Paula Abdul came out stating she has RSD.. it has helped people like me not feel like we are invisible with this dreaded syndrome.
I am trying to find other people out there who have chronic pain syndrome called Reflex Sympathetic Dystrophy. I have it and wanted to see if there are other people who need information or guidence about it.
anyone?
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Re:Reflex Sympathetic Dystrophy and Paula Abdul and me
« Reply #1 on: June 26, 2005, 03:25:20 am »
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Frodomyhero, I'm so sorry to hear of your struggle with Reflex Sympatheic Dystophy. What are the symptoms?
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Araknid
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Re:Reflex Sympathetic Dystrophy and Paula Abdul and me
« Reply #2 on: June 26, 2005, 03:17:55 pm »
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I hadn't even heard of it. And I'm sorry, it sounds painful

If you don't mind me asking...

Type one or type two? And how long have you had it?
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Re:Reflex Sympathetic Dystrophy and Paula Abdul and me
« Reply #3 on: June 27, 2005, 09:07:13 pm »
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Quote from: Le Deux Machina on June 26, 2005, 03:25:20 am   

Frodomyhero, I'm so sorry to hear of your struggle with Reflex Sympatheic Dystophy. :-* What are the symptoms?
------------------------------------------------------------------------
[quote author=Araknid;start=0#msg890502 date=1119770720]
I hadn't even heard of it. And I'm sorry, it sounds painful
If you don't mind me asking...
Type one or type two? And how long have you had it?

Quote:

Aww.. thank you both for your concern. If you go to the website
www.rsds.org it has an incredible amount of information about this.
Also. I'm featured in a book by Elanis Jury called "Positive Options for Reflex Sympathetic Dystrophy" and it talks about options people have to help themselves navigate through life with this.
People have two kinds of nervous systems autonomic and sympathetic.
My sympathetic system is on the "on " mode all the time, telling me I have pain in areas where I don't have any trauma. so I've had to learn to "calm' the pain by making it something different or change my focus to something else. It takes a lot of concentration and there are days where I just can't do it.. so I praise the good days and lumber through the bad days...
If you know anyone who's afflicted with this , I'd love to talk to them.
thanks
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Re:Reflex Sympathetic Dystrophy and Paula Abdul and me
« Reply #4 on: June 29, 2005, 12:58:32 am »
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Quote from: frodomyhero on June 27, 2005, 09:07:13 pm   

Also. I'm featured in a book by Elanis Jury called "Positive Options for Reflex Sympathetic Dystrophy" and it talks about options people have to help themselves navigate through life with this.

Wow. Just, wow.

It sounds like a terrible problem. Hopefully the good days will become more plentiful.
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Kari Grace
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Re:Reflex Sympathetic Dystrophy and Paula Abdul and me
« Reply #5 on: June 29, 2005, 03:42:09 pm »
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Oh, my dear! That sounds completely terrible. I'm so sorry to hear that you have to live with something like this! I hope you have more good days than bad days soon!
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Re:Reflex Sympathetic Dystrophy and Paula Abdul and me
« Reply #6 on: June 29, 2005, 11:46:01 pm »
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I just wanted to Frankie who pmed me about websites where I could find other people ..thank you and I've already started talking...
They are great sites because people share ideas and facts about how to cope and it's wonderful.. thank you.
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Re:Reflex Sympathetic Dystrophy and Paula Abdul and me
« Reply #7 on: June 30, 2005, 06:11:39 am »
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Hey, no problem.
I know how frustrating it is not to be able to talk about something cause others can't really understand 
It sounds like a very painful disease and I'm sorry for everyone who has to deal with it 
I really hope it will get better for you somehow.
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Re:Reflex Sympathetic Dystrophy and Paula Abdul and me
« Reply #8 on: June 30, 2005, 06:26:20 am »
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That was so great of you, Frankie.

Hopefully they will find a cure for RSD, soon. Is there anything that you can take to ease the pain?
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Re:Reflex Sympathetic Dystrophy and Paula Abdul and me
« Reply #9 on: June 30, 2005, 10:25:55 pm »
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Quote from: Araknid on June 26, 2005, 03:17:55 pm   

I hadn't even heard of it. And I'm sorry, it sounds painful :-\

If you don't mind me asking...

Type one or type two? And how long have you had it?
I'm not sure I understand what you mean by type one or two?
I've had what my doctor described as "one of the worst cases I've seen"
simply because I couldn't walk,I was in  a wheelchair and if someone just blew on my skin, I went through the ceiling with pain... forget socks and shoes..
but I was lucky... I had several interventions plus esperimental drug therapy and physical therapy, bio-feedback, accupuncture and medical message..and I'm back at work.. I'm not 100% , I don't know if I ever will be , but I'm better than I was..
Does that help you?
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