Recently, I have been diagnosed with something known as RSD (Reflex Sympathetic Disorder). Now, I’m not posting this to make anyone feel sorry for me. That’s the last thing that I want. I’ve been posting almost non-stop lately to my personal pages and talking to people about my own debilitating syndrome, but it’s not to garner attention for myself. It’s to make people aware that this horrible thing occurs. Now, beware, for as you continue, this will be one of my longest blog posts, on record for the site… lol And I will be posting a little bit here later about what RSD is and what its about…
But first, I want to thank, congratulate, and sympathize with each and every being (because animals, too, suffer disabilities) on this planet that lives with a disability and still manages to push forward. It takes a strong, able being who has been either: disabled all of their lives or lived a normal life and became disabled later, to push on, fight their disability, and fight to be recognized not for their differences, but because they are normal and deserve every bit of respect that everyone else gets.
Now, onto RSD… Reflex Sympathetic Disorder, also known as Chronic Regional Pain Syndrome (CRPS) is a invisible disease that affects millions world wide. It is a malfunction of the central nervous system that causes pain and additional symptoms, such as: dramatic changes in skin coloration and temperature of affected limbs, intense burning pain, skin sensitivity, sweating, swelling and stiffness of affected joints, changes in skin texture, motor disability, and softened bone structures.
Often, this pain spreads from the original injury site (which can simply be a finger or toe) to include the entire leg or arm and can sometimes spread to include the opposite extremity or other parts of the body.
Currently, there is no real known cause of RSD/CRPS, although in some cases the sympathetic nervous system plays an important role in sustaining the pain. Although, that is only one theory. The only other theory is a triggering of the immune response, which leads to the characteristic inflammatory symptoms known to affect those with RSD/CRPS.
But I won’t bore you all with all of the medical terminologies and scientific things that I find so interesting. If you happen to be more interested in the symptoms, cause and treatment of RSD, please visit this link.
Now, my story of how I developed RSD is often the story of many others. It started as a simple injury, something I didn’t give much thought to. While I was working at my local retail store in June 2011, I dropped a can of vegetables on the top of my right foot. It hurt, but I dropped things on my feet numerous times a night, so no big deal. I reported it to a few employees and managers, but went about my regular routine.
The next night, I noticed I was having some pain while walking. I thought I was just developing a bruise, but when I took off my shoe to check during one of my breaks, I noticed a peculiar bump on my foot. I pressed on it, pain. At first, I thought it was a break. So I reported it to my managers and took myself to the doctor the next day. My x-rays were clear, so my doctor assumed it was a Hematoma (swelling of a blood vessel) and attempted to treat me for it.
When the treatment didn’t work, I was sent to an Orthopedic Doctor to have testing and MRI’s done. We decided that it was a ganglion cyst. However, I was just starting the first phases of RSD. I was having unusual pains in my feet that weren’t associated with the cyst that had formed. My ankle was often stiff and hard to move. But it was easily written off as me favoring my injury. So we continued treatment, trying to remove the cyst without surgery. I was put on medications, shot directly with anesthesia and steroids. For a little while, the cyst went away. It seemed to be getting better. Then it popped right back up, bigger than it was before. That was when we decided surgery was my only option and I got ready for my short trip to the hospital for a surgery that took a little less than an hour.
Surgery day came and went… I had some unusual discoloration of my foot right after the surgery. (My foot actually turned purple and my nurses commented on it.) While I was getting out of my groggy state, my Orthopedic Doctor actually came in with pictures that he took of my foot while he was preforming surgery. Actually very interesting to see your foot cut open, I’m not going to lie about that one. It was found that my cyst had developed very near a nerve and when it would swell up, it would more than likely hit the nerve and was causing my rather serious pain. “So,” I thought, “this should fix me!”
Everything seemed normal, pain from surgery, all of that. My six weeks of healing period went away… I continued working, as I had been doing on and off as the pain permitted. My intense swelling continued, stiffness now and then. I actually ended up quitting my job at the retail store because of it. I was taking time off more than I was working… So I quit and tried something that I wasn’t on my feet so much for.
My swelling continued for over a year before my RSD finally flared to massive proportions. In October 2012 I was walking down my steps when I felt a sharp pain in my incision site that shot like lightning up my leg. I lost all motor function of my leg for a good 10minutes before I managed to carefully get back on my feet and limp myself through the day. I went to the hospital a day later for the pain and swelling, making sure I didn’t fracture any bones. No fractures or breaks. So I was sent away with a diagnosis of a sprain.
I continued to have massive pain and swelling… I could feel the pain graduating up my leg, along my ankle, behind my knee and along my thigh. I started having random muscle spasms throughout my leg that often left me unable to move my leg at all. Nights became painful to sleep, constantly readjusting as my leg went into spasms. And it wasn’t unusual for my foot to feel cold and then suddenly become a burning inferno.
I was lucky to find my doctor, who completely listened to all of my symptoms and diagnosed me with RSD. He has been extremely supportive of me through this whole situation and is moving me along to visit Neurologists and Pain Management specialists that can assist me in this on-going battle. Something that I have recently applied to disability for to try and get help for all of this, because ultimately my accident left me with no job to do at all.
It’s crazy how such a simple injury and turn into such a hugely disastrous monster. And to me, as terrifying as this is with the thought of potentially loosing my foot or leg… I’m actually completely engrossed in the magical movements of my own body. Despite the disability, I find it amazing to see the muscles move sporadically under the skin, to watch my skin as it swells and turns colors… Just to feel alive, honestly. The human body has amazing processes, even when it isn’t the proper functions of the body. And to me, it’s just another Magical thing being presented to me in this life.
It’s not fun… It’s often painful. It often makes me unable to do all of the things I have done in my life so far and unable to do a lot of the things I wanted to do in the future. Its scary, mesmerizing, emotionally difficult. But it is magic. And I’m looking forward to my experience with it, as crazy as that sounds. As hard as it may be… As much as I will struggle through on my way to potentially recovering… I will enjoy this magical experience.