I found this last week and read it to my husband. He said it explained pretty well how he felt. I thought the exercises to do with the kids to show how RSD makes you feel when you try to do something were great, for kids and adults!! I hope this helps, keep strong. Each day brings something new and the best we all can do is HOPE.
It wont let me post a link since I am a new poster, so just google Froggy and Heather explain RSD and it shows up, its on angelfire. (I copied the whole thing it is below, but all credit goes to the author!)


FROGGY AND HEATHER EXPLAIN RSD TO CHILDREN

Learning to understand my mother's RSD and how to deal with it has been very hard for me. I have learned alot about Reflex Sympathetic Dystrophy over the past few years from my mom and from all our RSD friends. I have met alot of other children who's parents or family members have RSD too and I know from talking to them that they are all as scared and confused as I am about RSD and how we can learn to deal with it and how we can help our parents who have it. With mommy's help, we are making this page to help explain RSD in a way that children can understand. We are hoping that it will help many children understand what is going on and admit how they feel. And most of all, we are hoping that other children who see this page will realize they are not alone!!{{HUGS}}-Heather and Mommy!!

WHAT IS REFLEX SYMPATHETIC DYSTROPHY??
Reflex Sympathetic Dystrophy (also called RSD or CRPS) is a disease that many people get after an injury, operation or accident. It can effect a person's nerves, skin, muscles, blood vessels and bones. We all have two kinds of nerves in our bodies. One kind helps you move the different parts of your body and does what you want them to ( open your mouth to eat ice cream!!! and move your hand to bring the ice cream to your mouth!!) These nerves will listen to what you tell them in your mind that you want them to do. The others kind of nerves you can not boss around. You can not tell them what to do. They make your heart beat, brain think, and make our lungs breathe. We can not make them stop even if we want them to!! These nerves also make you swell, bleed and feel pain when you get hurt. If you are lucky, once you heal, the bleeding, swelling and pain go away. But NOT when you have RSD!! These nerves forget to tell your brain to stop swelling and to stop feeling pain. The nerves start acting real funny and do things that they shouldn't like make your feel way too much pain, swell, get cold or hot all the time and just wont stop making you feel bad.

WHAT DOES IT FEEL LIKE WHEN YOU HAVE RSD??
RSD feels differently for different people. People can have RSD in different parts of their bodies. Some can have it in one or two arms or hands, Some can have it in one or two legs. Some people can have it in their whole body and need a wheelchair to get around. I couldn't understand how it might feel to have RSD so mommy and I played a few games.

To show me what it felt like to have RSD in an arm, mommy had me put on a pair of very thick gloves. Then she told me to try to do things like tie my shoes, pour a glass of milk, turn on the sink, open the door, button my shirt, comb my hair, feed my cats and take 50cents out of her wallet. Boy, was it hard!! I could barely do any of it!!

Then mommy had me try something she does at OT. She filled a bowl with uncooked rice and hid some small objects in it like a button, penny, beads, key, snap and more and had me try to get them out WITHOUT using my other hand to help!!! It was ALOT harder than it looked and I learned why my mommy has so much trouble doing things for herself since her RSD is in her hand and arm too.

Then mommy taught me what it might feel like to have RSD in your legs by having me hop thru our whole apartment on one leg!! I could NOT do it!! I kept falling!!

After that she had me sit with my legs crossed until they fell asleep and had me get up and try to walk! Again, I could NOT do it!! I kept falling!! My feet just wouldn't do what I wanted them to do!! Mommy said that is what it is like when you have RSD - your body does not do what you want it to. When my legs started to wake up they hurt from pins and needles!! Mom said to imagine if they never ever stopped to hurt just like with RSD. I know the pain in my legs wasn't as bad as RSD but I still could not wait for them to wake up and stop hurting me!! In RSD they dont stop hurting

IS RSD CONTAGIOUS? WILL I GET IT TOO? WILL MY FRIENDS CATCH IT IF THEY COME OVER TO PLAY WITH ME??
You can not catch RSD from touching or being near a person who has it. Just because your parent or relative has it does not mean you will get it too if you get hurt so try not to worry.

When I got hurt and had to go to the Emergency Room this summer, I was crying because I was so scared that I would get RSD now too. Mommy promised me that not everyone who gets hurt gets RSD. She also made me feel ALOT better when she reminded me that because we know all about her RSD we know what to do when I get hurt and that we will make sure to see a doctor right away if I ever don't heal right.

WILL THEY DIE NOW THAT THEY HAVE RSD??
NO!!!!!! Reflex Sympathetic Dystrophy does not kill you!!

WILL THEY GET WORSE? WHY DO THEY FEEL GOOD SOME DAYS BUT ALOT WORSE ON OTHERS??
Reflex Sympathetic Dystrophy can spread to other parts of the body for some poeple but others never get it in more places. There is no way of knowing if it will spread but if they get treated soon after they get RSD they have a great chance of getting better and not worse!!

There is no one answer for why people with RSD can have a good day and then some really bad days right after it. Sometimes they feel so good one day that they do ALOT more than they should and so the next few days they are in real bad shape because of it. It is like eating a whole bag of your favorite candy cause you think you can but after that last piece you have the worse belly ache ever and it lasts a long time too!!! Sometimes the person with RSD has a real bad day because the weather changed or it got too cold or hot out and this bothers ALOT of people with RSD!!! Sometimes alot of noise will bother them and make their pain real bad!!!

WHY DOES SOMEONE WITH RSD CRY ALOT?? WHY ARE THEY OFTEN CRANKY?? WHY ARE THEY ALWAYS TIRED?? WHY DO THEY FORGET ALOT OF THINGS NOW??
Reflex Sympathetic Dystrophy is more than just being in pain all the time. It causes alot of other problems too like not being able to sleep, being sad and depressed, and not being able to do the things that you used to do before you got RSD.

People with RSD cry alot because they are in so much pain and sometimes can't handle it or take it any more. They also cry because they are sad that they cant do the things they used to do ( like work, or go out special places, or even do things with you like they used to). They cry because they don't sleep well and are always exhausted. And sometimes even their medicines make they cry easy too. I know I would cry if I had RSD!!

People with RSD get cranky alot of the time!! The RSD makes them hurt alot so they get cranky because they don't feel well. They get cranky because they worry about their health and some times worry about all the doctor bills they have!! They get cranky because of how much RSD has changed their lives. Sometimes they get cranky because other people dont understand what they are going thru. Sometimes they get cranky because things like being touched or loud noises are bothering them and driving them nuts so they scream even if they don't really mean to. They are mad at the RSD - NOT at us even if they yell at us alot more now!!

People with RSD do not sleep well. The pain wakes them up alot and depending on where their RSD is, it is often hard for them to lie in bed or to get comfortable. Because of this they are often very tired. Sometimes even if we think they slept a long time, they still wake up tired because they were in a lot of pain and tossing and turning a lot so it was not a good sleep like we all need everyday. They also get tired from some of the medicines they are on and the constant pain makes them tired too.

One of the reasons people with RSD forget alot is because they are in so much pain that it is hard for them to concentrate alot of the time. Sometimes they are so tired they can't think straight. And sometimes the medicines they are on makes it hard for them to remember things well too. They can't help it that they forget alot!! I know my mommy never means to forget the things I tell her. I also know she feels bad when she does. I just try to understand and tell her again. If it is something important we make sure we write it down. But, I know my mommy will never forget about me!!!

WHY CAN'T THE DOCTORS HELP PEOPLE WITH RSD FEEL BETTER??
Unfortunately, not every doctor understands RSD or knows alot about it. Sometimes people with RSD have to go to many, many doctors before they find one who can help. The doctors can try to help the pain go away but they can hardly ever make the RSD go totally away. There are many different kinds of treatments and many different medicines they can try. BUT, since not every RSD patient gets the same help from the same medicine or treatment, the doctors have to try many, many different things on your loved one before they find something that helps them. Sometimes it will help a long time too but sometimes it only helps their pain for a short while and then they have to start all over again finding something that does help them.

IS IT OK FOR ME TO CRY AND BE SCARED??
YES!!! It is very good for you to admit how you feel and to let others know too. We are all scared of the RSD and how much it has changed our loved ones. Crying will help you feel better sometimes just like it helps the RSD patient when they cry. BUT, you have to try to talk about it and NOT cry all the time. You also have to try real hard to not be scared all the time but remember, it is good to admit when you are scared too. It is also ok to be MAD, but remember we are mad at the RSD and NOT the person who has it!! They did not mean to get it and it hurts them as much as it hurts you too. It is hard to see someone we love in pain all the time and it scares us too. Let them know how you feel and talk to other children who's parents have RSD too becuse this will help you learn more, understand more, and handle it more.

WHAT CAN I DO TO HELP??
There are many ways you can help some one with RSD no matter how young or old you are!!! First of all, be there to listen to them when they are having a bad time. Understand what bothers them and try not to do things like make loud noises when they don't feel well or leave the door open and let all the cold or hot air in if that bothers them too. You can help by trying real hard not to touch the part of their body that has RSD even if you get sad because you want to jump into their lap or give them a hug and you can't now. You can help by trying to do the things they can't around the house like take out the trash or carry things or even help them clean. You can also find new things to do together that will make them smile like maybe putting a puzzle together instead of running outside or you can even spend time together watching a new movie. Help them by letting them know you understand if they can't do things like they used to. You can help them do what they can't. You can also help by NOT asking them to do alot of things you know they shouldn't just because you want to do them. You can also help alot by letting them sleep when they are tired and making sure they eat even if they don't want too! AND, MOST OF ALL, YOU CAN HELP BY ALWAYS REMINDING THEM HOW MUCH YOU LOVE THEM!!!

We hope you find a lot of information, support, and friendship here at Pain Pal's RSD Support!! Please feel free to email us if you have any questions or concerns or just need somebody to talk to[/B]