When family and friends ask, "what's wrong with you?" or say things like, "There's got to be a way to fix it." when you are talking about RSD..how do you respond? What do you say that can relate what's going on? I sometimes just wish people wouldn't ask, because even when I try to explain it as simply as possible I get looks like I haven't tried hard enough to "fix it" or that I make no sense.
It's frustrating. I don't want attention or sympathy from others. I DO need understanding when I tell someone, "no I can't physically do that right now."

How do you handle these situations?

Hello Terralyn...

I understand your frustration... I do believe there are times, the least we say the better..as we try to explain what RSD is and how it affects us and what we have tried to better ourselves..the more it brings on my questions and conversation about it..I'm like you.. No added attention, please.. I think best said as I suffer from an incurable neurological illness,, it has changed my life but I'm okay....

We owe it only to ourselves the contentment of our efforts and peace of mind..others will just have to understand that.. RSD is hard enuf for us to understand and live with... We don't not need added pressure from others..

Bless you..and have a wonderful, pain less.. Night,

Kathy..

Hi Terralyn,
Sorry you have some tough questions coming at you. I usually tell people that what I have is called reflex sympathetic dystrophy and that it is nerve damage in my body. The pain signal that comes from our brains just will not shut off in my body and continually sends out a pain signal that never stops 24/7 (then they will usually look at you like you have five heads lol). I ask them if they have ever hurt their funny bone in their elbow and if they ever experienced that burning pain when it happens? Most people can relate to that and then I say "Well, that is what rsd feels like." And let them know ours does not stop. Most people then reply they never heard about it before and I tell them neither did I but it has been documented since the Civil War days. You can also throw in there is no cure for this disease but you never give up hope that one day God will bless you and it will go away forever! Most people do not understand what chronic pain like we have is or what we go through each day in order to survive and try to put on a happy face around others.

Most times I get people asking me why I am using a wheelchair or what do I have that I need a cane for...I guess because on the outside (at least to them) I look ok but if they felt what we do inside they would be lying on the floor curled up like a baby hysterical crying lol!!!! I also do tell them that having this disease is not for wimpy people haha.

Other times when people ask me how I am feeling I ask them "Well, how long do you have?" or I say "Boy, that is a loaded question?" Usually that shuts them up as most people really don't care about what is going on with you. I do try to educate people so as next time they see someone disabled they won't say rude things to them AND they learn about rsd. Hope this helps you out. Just shrug it off and keep on moving in a positive direction;.)
Take care,
kathy d

well I have had this question asked daily. and my family are the most difficult to teach. as they believe their pain is equivalent . I suffered their injuries to the back long before RSD. so now I just say I'm doing or you don't want to know so don't ask. strangers on the other hand I find it easier. start very simply by saying a I've suffered a very rare type of nerve damage that is progressive and has no cure. then I take it from their cue. if they ask what is its nature i tell them the name of it RSD. then explain it as a computer or car with electrical damage. but its my nerves and it affects all parts of the body. and i go into detail with how each person responds or questions. but the answer to how are you or how do you feel . I don't like answering. my wife and aunt don't like (I'm alive, or I'm doing) but when i tell them what is really happening they feel bad about it. the rest of my family huh,, don't ask. my best friend saw me have a severe flare where it was in my whole body at the same time with my other back and nerve issues. she said why don't i just see the specialist in this field.. so ignorant like a child but some cannot be taught so don't try...

I usually try to simplify my explanation of RSD as much as possible and only elaborate when people are really interested in being educated about it. Generally I go with something like, "I have RSD (reflex sympathetic dystrophy) and it's essentially a malfunction of my central nervous system that causes me to be in intense pain all the time." I know this doesn't even touch the surface in terms of a description of RSD...but for those who aren't really interested it is usually good enough. Oddly enough...I don't tend to get too many people saying things like, "You look fine." They may think it but I haven't ever had anyone say it to my face or question the severity of it (besides work comp and the crappy people at work who CAUSED my accident with their petty behavior of course but they would do that if both your legs were cut off so I don't count them and they certainly don't care about being educated about the condition). I definitely feel blessed to have family and friends who always supported me through this and even though I know they don't truly understand what it is like to live with this monster every day, they have never questioned the severity or made me feel like less of a person when I can't do something.

Since I typically have my service dog with me if I go out in public you would assume that people would know that there was obviously a reason. Not so. The usual comment is "How long will you have the dog before you have to give her up?" Or, "What a wonderful thing you are doing training a dog to help someone." If I am not in the mood to give CRPS 101 I just smile or I reply that she is my service dog. Usually the blood drains out of the person's face in embarrassment. The next question is usually, "What type of service dog is she?" I reply that she is a" mobility service dog." Some people ask what is wrong with me. If that happens I always politely answer that I have CRPS, a neurological disease.

My friends know not to hug me or have children run up to me and bump me. They all know the specifics of CRPS and how it effects me. I have not had too many issues with acquaintances, friends and strangers. Most of my issues have been with doctors who are ignorant or threatened because I am more knowledgeable regarding treatments than many of them.

For the first two years I did not have time to even think about what people thought because my entire life was consumed with research since the treatments offered were not having much effect, or those treatments required extensive research just to protect myself from them.

I am so focused now on remission that what anyone thinks does not even reach the radar screen.

At one point I had a one page summary for those interested but now since all of my friends are aware I don't keep it handy.

As for the ignorance and comments from doctors, I have elevated dumping doctors to an art form.

Sometimes it is just better to move on.

Thanks everyone for your insight. I'm so glad I found this forum!