Reflex Sympathetic Dystrophy
At the age of 17 I fell and snapped my right ankle. As it healed something was wrong but nobody could figure out what it was. As time went by the pain remained. I knew people who broke bones but they never experienced the pain that followed me. So the doctor appointments started and I got to the point that I could barely walk. The doctors had ideas of what it could be but they could not find what they had hoped was there. Something to show why I am in constant pain. The bone scans and x-rays showed nothing. CT scans were pointless. One doctor thought he saw something, that he thought may be contributing to the pain and discomfort, but it ended up being nothing. But, before we figured it was nothing, I had to endure a steroid shot between he bones in my right lower limb. That was a huge mistake because from then on I was confined to a wheelchair. The symptoms escalated as it got to the point that my skin burned and nothing could touch my lower limb. As the days went by my fear did not cease. The more doctors that said they could not figure it out raised my stress level. I finally gave up hope and came to the conclusion that it was something that I had to suck up.
When all had failed I was transferred to a new specialist at Slocum Orthopedic. I had never worked with a pain specialist before so it was a new experience. The day of the appointment made me nervous but I was ready to get the help I had hoped for. The first appointment was so much easier that I had expected. The Doctor talked with me for almost 2 hours. I told him everything. And it blew me away when he listened like he actually cared. Like he wanted to help me. He examined my lower right limb and was pretty positive that the unending pain was because of a nerve disease called RSD(Reflex Sympathetic Dystrophy).
Just knowing what it was was so comforting. He explained that the nerves never reset after the break and that means that I must live with the feeling of my ankle being broken 24/7. It was nice to know that it is not all in my head. That there is something that can help.
Complex Regional Pain Syndrome:
Reflex Sympathetic Dystrophy
Symptoms:
~The main symptom is pain but that may also include the feeling of your skin burning as there is nothing that can be done to aid that pain.
~The disease gets worse as time goes by and is typically caused by an injury.
~The disease has a big chance of spreading and may take over the whole limb and possibly the whole body.
There are 3 stages of RSD.
The First Stage lasts typically for about 1-3 months.
~The skin temperature changes and can change rather quickly to warm then cold then warm again.
~The hair may grow faster.
~Then comes the muscle problems and joint pains.
~There is a severe burning feeling and is sensitive to any touch including water or a breeze.
~Skin becomes purple, blotchy, may sweat more and gets swollen.
The Second Stage lasts 3-6 months.
~The changes continue and don't subside .
~Nails be become brittle.
~Pain intensifies.
~Hair may drastically slow down its growth.
~Joints become still and weak.
The Last Stage is when the disease has become irreversible.
~There is very limited movement because of the muscles and tendons tighten.
~The burning intensifies and continues most of the time.
~Muscle becomes weak and simple movement may be increasingly difficult.
~Limb may turn purple more often and can become deformed as the swelling gets worse.
~The entire limb has unending pain and may continue to spread throughout the rest of your body.
I am in the last stage(Stage 3) of the disease. The pain is chronic and there is no hope that it will get better. Luckily some of the pain is manageable. I have a SCS(Spinal Cord Stimulator). There are wires in my spine that consist of 8 electrodes on each lead. 2 leads stimulate the nerve endings and help block some of the pain signals to my brain. The pain is still there and has a very large chance of causing the person increased depression and anxiety.
Unfortunately, I have had some complications regarding the disease. It has spread throughout my whole right leg from my toes to my upper right hip. The pain is excruciating but I have been able to get out of the wheelchair and attempt to have a life.
It is something that I must live with and I have been able to suck it up so far. At times you may see a tear roll down my cheek as I try to hide the pain.
Unfortunately, I will be cut open next month because the implant has malfunctioned again. The lead has a kink and is electrocuting me in my back. The recovery lasts up to a year and sometimes many years till the tissue holds the wires in place.
Because of this I have ended up in the psych ward twice. It just becomes too much and hard to bare. I don't get upset as much as I used to. It is hard but I have learned to deal with it. That doesn't mean that it is easy or that I am fine. I just know that, no matter what, I must go on. I can't let this stop me. I will try my best to not let this stop me.
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
~Kahlil Gibran
