"In His Hands" -- I'm new to this board, but I've had RSD for a few years now. I found your post interesting, and think you've posted a good question, for what it is is worth I always explain RSD like this, and I will write nearly verbatim of what I say, just as if I am speaking to someone:

My sympathetic nervous system is involuntarily 'stuck' on over-drive. You likely don't know what this nervous system is, as most people have never heard of it -- I had never known what it was either, before developing this condition. But your sympathetic nervous system is completely different from the central nervous system -- which you likely are familiar with: you know like your brain tells hand to move, and hand moves. Well the sympathetic nervous system is the body's nervous system that reacts to outside stimulus; for instance it's your sympathetic nervous system that registers it's cold/snowy outside -- you better put a jacket on, it's also this nervous system that reacts pain sensations, and if your hand is was thrown into a pot of boiling water it is this nervous system that would make your react and respond immediately -- like ow! ... remove your hand out of the pot immediately.

The sympathetic nervous system (which in a healthy, normal functioning capacity) responds to this painful stimulus in way to warn you to protect your body by sending out the pain signals to/from your brain by sending pain signals to/from your brain, and it also reacts in a physical protection mode by automatically restricting blood vessels, for instance.

Unfortunately in the condition I have (RSD) the sympathetic nervous system is 'stuck' in a permanent malfunctioning, over-drive capacity. Meaning, my body/brain believes I am continuously being attacked by outside painful stimulus long after the stimulus is gone. My sympathetic nervous system is continuing to react just as if it is currently being attacked.

The result is it continuously sending out erroneous pain signals to/from my brain, and it continuous to do all things it would do just as if if there was painful outside stimulus there, i.e.: restricting blood vessels, etc. And, moreover, it often doesn't just stay contained to the limb/or local area where the initial injury was -- with RSD your body becomes so confused that it manifests this bizarre painful pattern throughout different limbs, and throughout your entire body.

I think this often gives them a thorough understanding of what is, and an indication of how painful and frustrating it must be to deal with. I think there is some great information on the web that helps with best defining RSD, and helps with determing the best way you can define it to others when explaining it -- and determine what works best for you. I know it can be very frustrating to try to get people to understand what on earth is *wrong* with you. Best wishes.

Thank you very much, DayDreamer! You really desribed it well! I appreciate you posting that long explanation.

Exactly!

BTW, Welcome here! It is a really helpful community here... some sweet caring people!

I must say, when I have time, I do try to tell people what it actually is in non-medical terms.

When I don't have time, or when I'm trying to explain to a child, I say that the nerves in my leg think that I'm hurt all the time, so they make my body do what it would do if I really was hurt all the time, even though I didn't get hurt. Unfortunately, this means that I'm in pain all the time like I would be if I was hurt, and sometimes, other bad things happen (which would be good if I was hurt, but are bad since I'm not. This bit only works with children 10 and up, usually ).

I don't mean to sound condescending - I've had RSDS/CRPS since I was 14, and I know that there are children who are even younger with CRPS who can understand it, but it's hard to tell a child who's never experienced chronic pain what it is like, and I don't really want to make a child understand, but I don't want them to feel like I'm being patronizing, either......does that make any sense? I've realized that being sick (I posted in the Lyme Disease forum today because my doctor thinks I have Lyme disease) is making me loopy.

Hi Their,
I want you to know you can get a tick bite, and have no neuro. SX for 2 years. It can come from the grass, wood area etc.., it doesn't have to come from any pet. I am going to have this ruled out. Here is a link on it. Hugs, Roz


http://www.ilads.org/files/burrascano_0905.pdf

Thanks for the info! I've been started on doxyclene, and my doc says that if my blood tests come back positive, I should still be ok, because it was caught early. Cross your fingers for me!

Your Welcome,
Their appears to be several people with both. Or get miss DX with one or the other. Here are some personal articles on that. Some even suggested that lyme causes RSD.

http://flash.lymenet.org/scripts/ult...=034662#000000

http://flash.lymenet.org/scripts/ult...=029767#000000

http://flash.lymenet.org/scripts/ult...=001575#000000

Haha rosie. lol those are pretty funny ways of explaining it

I don't come up with really creative ways of explaining it. I'm still working on it. Depending on the age of the person, if I know them, or whether I'm in the mood, I say either:

-I broke my feet
-Long story (if i'm just not in the mood)
-Something is wrong with the nerves to where they always tell my brain my foot is broken
or my all-time favorite
-Nothing, I'm just in a wheelchair for the fun of it (some people actually believe this)

It's funny explaining it to people that don't speak english that well. They are like "what wrong with you feet, they hurt?" Then you toss in the words "sympathetic nervous system" and "reflex sympathetic dystrophy" and "CPRS" and they make really funny faces. lol



I really need to work on better explanations.... mine kinda suck

Hey nimcjo

I love the wheelchair one - I have used that one before!!! (I get really ratty when you explain why RSD is, and then people look at me expectantly and go..... so you can't move......... WHY??? - or you're in a wheelchair.....WHY?)

Hey nimcjo

I love the wheelchair one - I have used that one before!!! (I get really ratty when you explain why RSD is, and then people look at me expectantly and go..... so you can't move......... WHY??? - or you're in a wheelchair.....WHY?)

I know we should all be educating everyone on the disease, but I just appear to be missing the evangelical ability to explain my illness to the masses and make them understand it...also... a lot of the time I don'r want tot alk about it...

I can't remeber if I ever told you the amputee story?

Lydia is one of my best mates, and before I went to uni we spent most of the time together. But I never really explained what was wrong with me - she knew I had RSD, really bad pain and couldn't really move (Spastic!) but that was about it... We were planning on going on holiday together with some more mates and attempting to search for a wheelchair accessible house....

.... we asked her dad for help... and discovered.......

.....................he thought I was only a torso!!! (I had explained that the pain was similar to phatom pains) ....."you don't need it to be wheelchair accessible, just put a baby sling across you and take Rosie's arms and legs off and carry her round the house!!!! then you can borrow any house!"

Well. after that one..........................I have always been a little better at explaining what's wrong with me to mates!!

You'll get your own style....I know I hate it but telling your mates is important - they are your best ally - mine can look at me and sort of tell what's going on and then change stuff so that either I can rest or participate etc... and they are going to be your "closest" supporters and cheer leaders..

Anyway! take care... and I still love the wheelchair one.. (when I arrived at uni they said "well it's only up 2 flights of stairs and 400 yards away!, can't you do that? NO, I CANT EVEN STAND SO THAT's going to be difficult!)

Good luck!!!

Rxxxxxxxxxxxxxxxxxxxxxxxxxx

Lol. Yeah. People do the same to me with the wheelchair thing. I finish explaining and they are like, so your in a wheelchair because....?? They sometimes think I'm paralyzed. I was kinda shocked when my friends came up and asked me if I was paralyzed. My brother actually thought so for awhile too. He still doesn't have much of a clue of what's wrong with me. He just knows I broke foot a year ago, something is wrong with both feet now, and I can't walk. Such a smart 7th grader...... yeah. I'm still working on how to explain it to him. Can't use a stupid explanation, but I have to simplify it and make sure he pays attention to the story. I'm never again gonna try using big words to explain it to him. He was giving me the funniest faces though.

BTW, does anyone have any way to explain it to a younger brother in the 7th grade in a way he will understand?