lisashea
10-18-2006, 04:49 PM
In September of 2001 I sprained my left ankle by standing up from my chair. I had sprained the same ankle numerous times over the years so this was not anything new. Boy was I wrong! The pain in my ankle did not improve and seemed to be spreading up my leg. Within 6 weeks I was told that I had a neurological disease called Reflex Sympathetic Dystrophy-RSD (also known as Chronic Regional Pain Syndrome-CRPS). I was told that the only help I could get was pain management. There was no cure.
There were no books on the disease, nor was there any support from the medical people at the hospital which is why I turned to the Internet. I began researching the disease and found several websites that focused on RSD. They seemed to all provide the same depressing information. All focused on the standard medical approaches to disease. I was more interested in finding alternative therapies that could “cure” the disease not just manage the pain. I was searching to cure the incurable and I was not going to stop until I did.
As a result of my internet searching, I found an incredible website that had a very active RSD community. It was the braintalk forums run by John Lester (http://brain.hastypastry.net/forums/). This site was a portal to support groups for every possible neurological disease imaginable. The RSD community welcomed me and became my family. They truly understood what I felt and was experiencing and had so much information that I knew I had found the “right” place. When you have a disease like RSD, you are house-bound and cut off from the world. The internet was my only connection to people. I could post a message and within minutes would get several responses.
It was here that I first learned about alternative treatments for RSD as well as the latest research and that there was hope in finding a cure to this incurable, incredibly painful disease. I followed the case of a man from Michigan who was trying Hyperbaric Oxygen Therapy. His experience gave me the courage to try this treatment myself. Unfortunately, I did not have the same results as him but at least I had a place to call home; a place where I could turn to for advice and suggestions. I found HOPE.
I learned about so many types of treatments from people all over the world. Members posted from Hong Kong, St. John, Virgin Islands, England, as well as all over the United States and Canada. This rare disease didn’t seem so rare anymore. I had met hundreds of people who were suffering just like me. We were all desperate for a cure and willing to try just about anything. The stories that I read gave me the courage and confidence to try.
As I tried each of the treatments (acupuncture, ketamine, herbology, applied kineisiology, cranial sacral, passive yoga, aqua therapy, chiropractic,…), I began to post my results and began to be a “helper” to others, not just a receiver of information.
Writing about my symptoms and pain was like a therapy session in many ways. I would pour my heart and soul into words. Everything that was running around in my head, scrambled and chaotic, was somehow organized. It came out of me and into reality; a freeing experience, like seeing the words made it ok to feel the feelings.
I had written in a journal throughout my life so writing on the internet was simply a different place to put my words. Instead of in my little book, my words were being posted on the internet for the world to see. I didn’t care about privacy. I cared about connecting to people and that was not possible being stuck at home, unable to drive or socialize or interact with the world.
I would go back and reread what I had posted and think WOW – that is a really moving story. WOW – that’s my story! Oh my God – I really am going thru this ****. This is not just a nightmare. This is real. This is my life! My feelings of frustration, depression and struggle to survive came through loud and clear through my own words. It really validated all of my feelings and thoughts and that made me feel sane.
Just the idea of helping someone else made me feel better too. I knew that somehow what I had experienced could help someone else in some way, somehow because reading other’s storied had helped me. Reading others stories made me feel like I wasn’t alone or crazy or imagining the intense pain that I was in. Someone else understood me. I was not alone in the battle.
RSD causes very strange symptoms and it made me think that I was loosing my mind or that my mind was playing tricks on me. Reading another person’s story with the same descriptions was such a relief. I wasn’t alone and someone else understood. We may not have been able to take away each other’s pain but just knowing that someone else in the world experienced it was somehow a comfort.
I found that other people’s stories inspired me to fight for a cure. If someone else could keep up the fight then so could I. We could fight the same battle together. I found allies in a battle that I had been fighting alone. What a difference that makes.
I also found people who chose not to fight anymore. A few gave up and ended their lives. We all grieved the loss together and shared our feelings of sorrow, wishing that we could have done more to help.
There were very few stories of success with RSD but the few that I did read made me truly believe that if someone could be cured then there was no reason why I couldn’t. I am so grateful to all the people who were willing to share their knowledge and experiences so openly with me. I was inspired and supported by so many “strangers” that I had met. Strangers that became very good friends.
I attempted to start a RSD support group, locally in Mansfield, MA, but never found a group of people capable of physically meeting. Everyone was housebound and the only means of support was using the internet. As a result of my interest in starting a group, many RSD websites posted my name and phone number looking for participants. Now I was not only writing about RSD but talking to people on the phone from all over the world all due to the Internet.
I can honestly say that if I had not turned to the internet to research my disease, I would not be where I am today. It all began as a source of information (stories told by other people). I was searching for help – found it and then returned the help by sharing my story. I have been told by my chiropractor that he has had several patients who found him because of reading my story on the internet. As a result, they too have found the help they needed and will share their story which in turn will help others. I am so grateful to be where I am today and hope that my story can inspire other’s and teaches them to never give up.
There were no books on the disease, nor was there any support from the medical people at the hospital which is why I turned to the Internet. I began researching the disease and found several websites that focused on RSD. They seemed to all provide the same depressing information. All focused on the standard medical approaches to disease. I was more interested in finding alternative therapies that could “cure” the disease not just manage the pain. I was searching to cure the incurable and I was not going to stop until I did.
As a result of my internet searching, I found an incredible website that had a very active RSD community. It was the braintalk forums run by John Lester (http://brain.hastypastry.net/forums/). This site was a portal to support groups for every possible neurological disease imaginable. The RSD community welcomed me and became my family. They truly understood what I felt and was experiencing and had so much information that I knew I had found the “right” place. When you have a disease like RSD, you are house-bound and cut off from the world. The internet was my only connection to people. I could post a message and within minutes would get several responses.
It was here that I first learned about alternative treatments for RSD as well as the latest research and that there was hope in finding a cure to this incurable, incredibly painful disease. I followed the case of a man from Michigan who was trying Hyperbaric Oxygen Therapy. His experience gave me the courage to try this treatment myself. Unfortunately, I did not have the same results as him but at least I had a place to call home; a place where I could turn to for advice and suggestions. I found HOPE.
I learned about so many types of treatments from people all over the world. Members posted from Hong Kong, St. John, Virgin Islands, England, as well as all over the United States and Canada. This rare disease didn’t seem so rare anymore. I had met hundreds of people who were suffering just like me. We were all desperate for a cure and willing to try just about anything. The stories that I read gave me the courage and confidence to try.
As I tried each of the treatments (acupuncture, ketamine, herbology, applied kineisiology, cranial sacral, passive yoga, aqua therapy, chiropractic,…), I began to post my results and began to be a “helper” to others, not just a receiver of information.
Writing about my symptoms and pain was like a therapy session in many ways. I would pour my heart and soul into words. Everything that was running around in my head, scrambled and chaotic, was somehow organized. It came out of me and into reality; a freeing experience, like seeing the words made it ok to feel the feelings.
I had written in a journal throughout my life so writing on the internet was simply a different place to put my words. Instead of in my little book, my words were being posted on the internet for the world to see. I didn’t care about privacy. I cared about connecting to people and that was not possible being stuck at home, unable to drive or socialize or interact with the world.
I would go back and reread what I had posted and think WOW – that is a really moving story. WOW – that’s my story! Oh my God – I really am going thru this ****. This is not just a nightmare. This is real. This is my life! My feelings of frustration, depression and struggle to survive came through loud and clear through my own words. It really validated all of my feelings and thoughts and that made me feel sane.
Just the idea of helping someone else made me feel better too. I knew that somehow what I had experienced could help someone else in some way, somehow because reading other’s storied had helped me. Reading others stories made me feel like I wasn’t alone or crazy or imagining the intense pain that I was in. Someone else understood me. I was not alone in the battle.
RSD causes very strange symptoms and it made me think that I was loosing my mind or that my mind was playing tricks on me. Reading another person’s story with the same descriptions was such a relief. I wasn’t alone and someone else understood. We may not have been able to take away each other’s pain but just knowing that someone else in the world experienced it was somehow a comfort.
I found that other people’s stories inspired me to fight for a cure. If someone else could keep up the fight then so could I. We could fight the same battle together. I found allies in a battle that I had been fighting alone. What a difference that makes.
I also found people who chose not to fight anymore. A few gave up and ended their lives. We all grieved the loss together and shared our feelings of sorrow, wishing that we could have done more to help.
There were very few stories of success with RSD but the few that I did read made me truly believe that if someone could be cured then there was no reason why I couldn’t. I am so grateful to all the people who were willing to share their knowledge and experiences so openly with me. I was inspired and supported by so many “strangers” that I had met. Strangers that became very good friends.
I attempted to start a RSD support group, locally in Mansfield, MA, but never found a group of people capable of physically meeting. Everyone was housebound and the only means of support was using the internet. As a result of my interest in starting a group, many RSD websites posted my name and phone number looking for participants. Now I was not only writing about RSD but talking to people on the phone from all over the world all due to the Internet.
I can honestly say that if I had not turned to the internet to research my disease, I would not be where I am today. It all began as a source of information (stories told by other people). I was searching for help – found it and then returned the help by sharing my story. I have been told by my chiropractor that he has had several patients who found him because of reading my story on the internet. As a result, they too have found the help they needed and will share their story which in turn will help others. I am so grateful to be where I am today and hope that my story can inspire other’s and teaches them to never give up.