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

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 :D



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?)

ooops - stupid dragon...
 

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?

Usually I just say it's an old injury. If they persist then I tell them it's a neurological condition caused by an injury getting progressively worse instead of better.

I get asked quite a bit since I have to wrap my hand to keep it from hurting. I've tried gloves but they cause pain.

Try explaining that your nerves are overactive, and constantly send the wrong messages to your brain saying "pain".

To quote frogga:
"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."

Maybe your brother could understand that?

Or do you think he could understand some of what DayDreamer said?

How old is he? I have siblings and some understand. Reading this might help:
http://www.rsds.org/pdf/Recog_Undrstd_TreatRSD_530.pdf
(I am actually going to print some of these out for other people)

Also came across this:
http://www.rsdescape.com/RSD%20In%20Children.htm

I just sing " BRAIN DAMAGE" [Dark side of the moon] to people who think i am normal and should able to get and go! Its saves me explaining to people who do not understand whats its like.I used to go around like a loop,repeating the same things all the time. Sometimes i felt like a doctor mouthing medical jargon.

My guts hurt!
 

These posts are soooo funny!

I'm sure I'm not the only one with this problem; a lot of my in laws could care less what I have. All they know is that I'm a "leech of the system". Then when one of them has a minor surgery it's as if the end of the world has come and I could not possibly understand the pain they are in. What?

Try this: one of my children needed to do a research paper for her high school physiology class. She decided to do it on RSD. After two weeks of research and questioning my pm doctor, she had an epiphany. She came up to me one night, wrapped her arms around my neck and said, "daddy, I had no idea. I'm so sorry for not understanding for so long", and then gave me a great big kiss. That made up for a lot of time spent in quite desperation as my family went along, not noticing the suffering. :)

it depends if they are interested at all
 

sometimes i say

, my nervous system became infected when i broke my leg, there was an open would and the tissue infection infected my nervous system.
this is eaisly accepted. They can visulize this. it ends a lot of fruitless talk becaue if really explained no one ever gets it.
or really doesnt want to know.

sorry but im a little down today, but it is a good question to post. thanks dc

JetJock,

I love that !

I'm hoping one day my 2 sons (14 and 15) will have an epiphany like that

I find that no matter how I explain it, people only get it if they spend several days with me under the same roof, or they do their own research on the internet. Even still, some people are just not empathetic. Some seem to harbor the feeling that illness is a choice, if that makes sense? Even with diseases like cancer.

Thats because if they view diesases as a chioce..that lets them off the hook of chosing to not have to suffer with it themselves..Deep I know but I thing holds merit..


Kathy:hug:

People look confused and perplexed when I try to explain RSD...it's so exasperating to try and convey what it is.....
Often I will suggest that they look it up on the 'net for a complete picture of the disease..

Lately, I have been saying it is similar to neuropathy..I also tell them the nerves in my body are short-circuiting, causing deterioration of muscle, bone, etc, along with excruciating pain....particulary burn pain....
they seem to understand this....sometimes :o

I have tried to explain every way I could and noone really understands. Finally, when I decided to call it nerve cancer people could understand. If someone thinks about it they are similar. Once you have this it can only go into remission. When it decides to spread there is no stopping it. The constant pain is similar, and we all know what the rest of the story is.

opinions...
 

We are going to have a real tough funeral to attend. Alot of distant family and people there do not know or understand what is wrong with my hand/arm and give hugs. OUCH! My husband came up with the idea last night that maybe I should where a sling, then I have a visible problem. Do any of you do this? Other ideas?

How do you describe your RSD to others?
 

This is a fundamental question for us all!

I remember asking my neurologist how to answer it when I was first ill. She pulled out her textbook from medical and opened the page to a chart of pain levels. She said, "Tell people you have one of the worst neurological diseases you can have. And then tell them this". She showed me this chart that had pain levels, of which she pointed out three. She said, "Labor without pain meds is a Level 10. Cancer is a Level 30. RSD is a Level 40. There is no known condition in medicine with a higher pain level than RSD. That is what we were taught in medical school. That's what you can tell people".

Can you imagine? So that's what I tell people.

But here's another wonderful resource I've found that I have given to people who need to understand what I'm living with. A woman with RSD who is also a journalist wrote an article for a newspaper in Long Beach, CA called the Grunion Gazette dated August 13, 2009 titled "Documentary Aims to Raise Awareness of Disorder". The author, Jeanine Enriquez, tells what it's like to have RSD and the impact it has had on her life. You can find the article on the internet. It's a great way to let others know what you have in human terms.

These are two ways I try to describe this horrible beast that inhabits our bodies! If only we could make it vanish!

Freezing your arm is a BAD thing. It was something I instinctually did afrter the RSD kicked in and before I was diagnosed. (It took hypnotherapy to break me of it.) It will just make your pain go up higher to your shoulder, and down your back. And people will be more likely to TOUCH a limb that has signs of injury. Keep your hubby on the side of your effected limb as a barrier. If someone goes to shake your hand, give them your "good" one. I shake with my left to everyone's confusion. I give one sided hugs. Your relatives will have to know sooner or later. If you can't stand to be touched, a quick "sorry, I can't, nerve pain..." works. If lidoderm patches work for you, slap on a couple and wear long sleeves. If you use pain meds, take them beforehand, so you're at a lower pain baseline when you arrive.

You crack me up...thats sooooo good
I too use responses...what ever you think of at that particular moment. This is great. I even can get confused is it the FM or the RSD

But you dont look sick
 

This is a FABulous site if you havent already found it.

http://www.butyoudontlooksick.com/fr...k-com-readers/

1 T-shirt will say it all -

I have

RSD/CRPS - http://en.wikipedia.org/wiki/Complex..._pain_syndrome

FM - http://en.wikipedia.org/wiki/Fibromyalgia

TOS - http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome

CFS - http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

DYSTONIA - http://en.wikipedia.org/wiki/Dystonia

MYFACSIAL PAIN - http://en.wikipedia.org/wiki/Myofascial_pain_syndrome

Did I miss anything? Dont ask...its all in my brain