About Me

June, 2005

Hi!

Welcome to RSD Escape. I've only had this site up for over two years now and I'm excited at the response that I've gotten from RSD'ers, friends and family, and other people who suffer from chronic pain all around the world.

My name is Savanna and I'm 17 years old. I live in Virginia (By the way, a lot of people who don't live in the U.S. have asked me where VA is...it's near the east coast of the U.S.) where I am now a junior at a local high school which I can only attend on a part-time basis due to the RSD. I have had Reflex Sympathetic Dystrophy (RSD) going on three years now.

Here's my story....

In late October of 2002, when I was 14 years old, I was doing a handstand and accidentally fell, twisting my foot under as I landed and hurting my left toes and part of my foot. I am so accident-prone, so it wasn't like this incident was unusual. When I went to the doctor the next day, it was decided that I had a sprain and should be off crutches in a week or two.

Unfortunately, this injury never seemed to heal. The pain started changing and quickly grew worse every day. I developed burning sensations, shooting pains, and extreme sensitivity to any kind of touch. My whole foot and ankle started turning strange colors and it was almost always ice-cold.

I kept getting referred to different doctors because no one knew what was wrong. I had x-rays and an MRI which showed that I did not have a fracture or even a sprain. I started to dread doctor appointments because doctors either thought I was exaggerating the pain or just looked perplexed because they had not seen any cases like mine.

A little more than a month after my initial injury, I received the diagnosis of RSD. (This was actually considered a really early diagnosis, but I've come to realize that the diagnosis does not really matter if the doctors never want to treat you or lack the knowledge to treat you). Of course, I was excited, thinking that doctors would now know what to do. I was wrong. Not many doctors knew what RSD was, much less how to treat it.

My RSD has continued to spread and is now full-body. I'm in pain from my toes to my head, even my face and throat hurts. Because I don't have enough strength in my legs to stand and because the pain is so unbearable, I am unfortunately now confined to a wheelchair 100% of the time. However, I am trying many different treatments in hopes that something will help.

However, I might have written about the basic medical facts, but I haven't really explained what it is like to live with RSD every day, all the time.

First of all, it can be really frustrating and not JUST because of the pain. It can be awfully discouraging when doctors abandon you because a treatment doesn't work or even the mention of RSD scares them. Many times, I have felt like I should apologize to them because I had RSD. I didn't want to get RSD and make it difficult for them. Some doctors tried to help me, but eventually they didn't know what to do anymore and sent me to someone else. I got so tired of being passed from doctor to doctor. Every time this happened and another doctor couldn't help me, it was like a another letdown.

Please don't misunderstand me. I don't mean to sound like every doctor was awful. In fact, there were many doctors who were very kind and they just did not understand RSD or didn't know what else to do with me. It's just that it gets really depressing when I have gone to more doctors than I can count and yet no one knows what to do. And the same thing happens with friends. Some friends wanted to help me and encourage me, but they didn't know how to do it.

Most of my friends were originally supportive, but even my closest friends started to fade away as the RSD continued. I now value both my remaining old friendships and my newly formed friendships so much more. Even with my family and friends though, I was still really down until I was searching the Internet one day and found an online support group for RSD kids. At first, I was a bit hesitant to join the group because I wasn't really sure what to expect, but I've now developed many friendships with chronic pain kids since I joined this group. I now realize how much experiencing pain can be a really strong bond between friends. I guess this is why I can talk more to them, than "pain-free" people.

But, I have not only developed friendships on the Internet, I have also switched schools various times and churches this past year. I'm staying in touch with my old classmates and a few teachers. Both my old and new schools are wonderful. My youth group is great and we're all becoming close friends. I have found so many people that help support me, especially my family. My old schools have been amazing and have done so much for me that I can't even begin to explain it. (And to any of my classmates, teachers, friends, and family- thank you all so much! )

But, for awhile after my diagnosis, I really struggled with trying to cope with the pain and all the things that went along with it, so I know how many people can make such thoughtless comments without even realizing that their remarks can be cruel. I have definitely learned who my real friends are. People who I never thought of as close friends have turned out to be really kind and thoughtful, yet some of my best friends have basically deserted me.

I have learned how to hide my pain and force a smile because that is what so many people expect me to do. People are scared of pain and they don't want to see it....so I try not to show it. Frankly, I really am genuinely happy a lot of the time, but I wish that people would understand that it is impossible to always be positive when the pain seems unrelenting.

And then there is the thing that is the root of all the problems, the RSD pain. A lot of people have asked me what RSD feels like, but it can be difficult to explain to someone who has not experienced the pain. However, if you are willing to listen and try to understand, then continue to read....here is my description:

The worst part is the burning, however it doesn't really feel hot....it's kind of like a cold fire spreading up through my body. My feet and ankles can get really swollen and the skin feels tight, almost like they are about to explode. My knees get really hot and red with stabbing knife-like pains, while my feet remain horribly cold with a purple and blue tone. My skin is always dry or shiny and the hair has almost stopped growing. Sometimes, I feel deep aching, as if the actual bone aches and I can get weird tingling sensations all over my body, like spiders are crawling on them. It's literally impossible to wear any form of long pants or even capris, just having shorts or skirts on hurts (anything rubbing against my legs really hurts) , and I can't wear any form of socks or shoes. My back and arms are really hypersensitive too and wearing a shirt hurts so much! Long sleeved shirts and jackets are impossible to wear now. Even my face is hypersensitive and I don't wear much make-up anymore because it hurts so much to put on. My fingers used to be clenched shut in fists and I couldn't move them at all, but they have now opened a lot and I'm slowly gaining more use over them, but it's still extremely hard to write or type, or even do something as simple as holding a glass of water or a book. Because the RSD is now full-body, everything hurts and even a hug from a friend which is meant to be comforting is really painful. A blanket can feel crushing and a breeze is excruciating. I can't sleep most nights because of the pain, so I get tired easily. I can't weight bear at all now, but when I was able to, it felt like I was stepping on broken glass and every step was agony.

When I first got RSD, I thought the pain was bad, but now it is a thousand times worse. Out of the 1-10 scale (with one being the least pain and 10 being the worst) the pain very rarely goes below a 10, although the pain is very often off the charts! At first, I sometimes had days when the pain wasn't quite so bad, but now it's absolutely constant and so awful and overwhelming that at times, it's hard to talk and think or even remember to do something as involuntary as breathing....that's how I used to describe it. But now my pain is very slowly coming down and I'm finally making progress for the first time in almost two years because of various treatments. It's so amazing and awesome to see progress!

It is hard trying to struggle through every day and not being able to participate in things I used to do. It is hard attempting to keep a smile on, when many times I want to cry instead. And it is HARD to stay hopeful when treatment after treatment fails and the pain continues.

I know that every teenager with RSD has experienced loneliness, sleepless nights, accusations of being a hypochondriac, clueless doctors, and of course-pain. We have to stay on the sidelines of our previous little world, missing Homecoming dances, lots of school, and playing soccer or basketball with friends. We quickly get thrown out of our old life and pushed into the pain world, never having time to look back. We have grown up and matured faster than many of our friends because we have had to go through experiences that no one understands, no matter how much we try to explain to them.

However, if there is something positive about RSD, it is that we have learned how to reach out and help others in pain. RSD has taught me patience, understanding, perseverance, and hope. I've learned that RSD is a journey down a long, rocky road that we sometimes have to travel alone. Always remember that the longest journey begins with just one, single step....and remember that we can and we WILL beat this awful pain someday! (Don't ever stop believing that.)

Don't ever give up. Don't ever give in.

Loads of pain-free hugs,

Savanna

P.S. Some of the facts in this story might not be up to date. Please check the "My RSD" page for updates. Thanks!

"Although the world is full of suffering, it is also full
of the overcoming of it."

Helen Keller