How do you describe your RSD to others?
 

Just curious... I am always having people ask me "how'd you hurt your arm?", "what did you do to both of your arms?", etc, etc, etc... all asking me "what is wrong?"...

So, how do you tell people what is wrong with you (what your dx is) easily?

Quite often at physical therapy I have other patients ask me what is wrong with my arms, legs, etc, and I have to try and easily tell them basically what is wrong... It is hard for people to understand, and they get lost, or ask a bunch of questions. I don't mind answering the questions, though, if I have time! :)

When I was explaining it to a lady today, she just couldn't comprehend what I meant... and she thought I was *too young* to have it! :rolleyes:

SO, I have told people "it is a neurological syndrome, a chronic pain syndrome, and that basically your nerves are sending wrong messages to your brain, saying they are hurting...".

People wonder why I am at physical therapy for it. So, I try and tell them that I have lost a lot of movement, I need desensitization, strengthening and stretching; because physical therapy is known to work and you've got to keep the affected extremity moving.

So, how do you easily tell other people what RSD is, and what is wrong?!

Hey

Wow - well I wish I knew that one! unfortunatly I don't... any ideas would be brill! When I'm being mature I tend to say that I have a disease that is a rheumo- neuro condition - where my joints don't work properly because the movement parts of my brain are over written with pain signals so my nerves don't send out the right messages.

Then again - if I'm being immature - then it's far easier ..

"well.. I fell out of a plane"
"the raging bull hit me really hard and I must have flown 50 ft!"
"honestly... this is what happens when you let your sister drive the car"
etc...

it can be fun and so less anooying thant rying to explain it!

Rosiexxxxxx

Hey Rosie,

:ROTFLMAO:- really, you are a very funny woman (amusing, I mean) - your poor sister :p

I must try that approach. Usually, because absolutely no one gets it, I just say it's a nerve disorder, like having nerve toothache all the time in my arm...have you noticed the glazed look in people's eyes if you say "Reflex Sympathetic Dystrophy" :D

all the best!

:D :D :D :D LOL, Rosie!

If only people realized how serious the condition really is.


Yes, Artist! I have noticed... :p

LOL!!!!

seriously - try it - it works brilliantly! so much better than trying to give some random acquaintance the full medical history (and in October 2003 I saw my GP who increased my tablets.. but then in November he added DF118s etc...)

there are so many different things you can use as well (depedning on who you want to impress)..

buildings are always good (falling/ them falling on top of you etc0
ladders (over, under, off of)
driving (sisters, sheep, monkeys, other cars driven by any of those)

etc etc

........and you get to realise if they were really listening or only asking to be polite (when they just go poor thing or something after you told them about your brave fight against the three gorillas that were trying to steal your purse who then beat you up with 10ft banana trees - then they aren't listening)

Rxxxxxxxxxxxxxxxx

You are making me laugh, and laugh, and laugh!!!
 

Oh!, you are making me laugh so hard, Rosie!!!!!!!!! :D :D :D :D :D I am cracking up reading your posts! :D :D

On a serious note, I have started making up a little brochure/ card to tell about RSD. Maybe I should work on that... then, if people are really interested they can read it.

Oh, I did tell someone they should look up RSD or CRPS on google... I dunno if the guy did or not, but later on he was asking me more about RSD... he seemed genuinely interested in it.

Some people don't know what they're asking when they ask "what happened to you?". A LONG story!

"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!!
 

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

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