How do you explain RSD to friends/family?
 

I unfortunately may have an RSD diagnosis soon and want to tell certain people in my life. I have already tortured many friends/family over the last 8 months trying to describe RSD. I've sent them to websites but some people can't even handle that. Some of you have been living with this for so long and must have had to come up with a simple explanation that isn't too technical.

For people who can handle it I'll send them to this site that describes what it feels like: http://www.rsdhope.org/Showpage.asp?...3&PGCT_ID=4415

Thanks for any help you can provide.

Andrea wrote this paper and it explains it wonderfully. here is the link to it...

http://neurotalk.psychcentral.com/thread63213.html

It is the best written I have come across for the simple ordinary person. :)

Great ..very informative and a big help in the description of our 4 headed friend... We can also add that unfortuantely you have been diagnosised with a neuromuscular condition which is very painful..there is no cure but lots of hope and pain relief treaments offered..Ask them to keep praying and much hope for future advancements..finally saying..that you will be okay as long as they support you and keep their love for you flowing as you will need it...

Lets us know how else we can help you!!

Kathy:grouphug:

You'll separate your friends from your True friends in this great divide!

Some, might care enough to want to know, and do the "homework" to figure it out.

Others, just don't care enough. Let those go, Before they hurt YOU!

This is a serious subject, and having rsd/tos, then another serious accident, I've had this for going on 27 years,..
You just learn, that some were Never your friends! (I think that's a blessing).

Pete
asb

I like your description Kathy - very simple yet effective.

When I'm with my friends I try NOT to talk about my RSD. It's too depressing. I'd much rather talk about other things. It helps get my mind off of my illness and all the pain. And no one wants to hear about it, anyway. So I tend to keep my RSD to myself for the most part when I'm out socially. That's what this board is helpful for. When I need to talk about my RSD I come here. (Not that my friends don't care - they do, very much so. I just don't want to ruin good times with talk of MY issues very often - it's a bore!...)

When I first became sick, I joined the RSDSA. My membership package included some great pamphets that I shared with my husband that helped him better understand my pain and other symptoms. He has remained my best friend and greatest supporter throughout this saga...3 and a half years and still counting....

Sandy

Thanks Sandy...

Thanks to all of you for good advice!

hannah1234: That's a great informative post by Andrea.
keep smilin: Most anyone can understand this explanation!
AintSoBad: I think I'm already experiencing the great divide w/'friends'.
SandyRI: Yes, I don't want to be Debby Downer too, but some are interested. I plan to join RSDSA.

Thanks again, it feels good to talk to people who know about this.

I say it's a complicated dystrophy or syndrome that effects ones nervous system causing extreme pain in a limb

My Neurosurgeon said to tell it like this-People can relate to it.

Everyone has heard of Muscular dystrophy (dystrophy meaning malfunction)
Well I have Nerve Dystrophy- a malfunction of the Nervous System
You can see muscular dystrophy, but for me one of the hardest things is that you cannot see my problems some of the time.
This has worked for me for 2 years-Hope it helps you-Carol

I've referred family to this post;

http://neurotalk.psychcentral.com/thread63213.html