My name is Allison and I live with Complex Regional Pain Syndrome that resulted from failed back surgery. It was all supposed to be routine. I suffered two disc herniations in July of 2015. My condition worsened over time as I continued to work as a Personal Support Worker in a nursing home. My condition declined to the point of having severe sciatica and cauda equina syndrome. I was hospitalized in November 2015 because I was no longer able to void (urinate) and I was numb in my groin, pelvis and perineal area. My hospitalization resulted in having back surgery to remove the disc protrusion. Everything was supposed to be routine, everything was supposed to return to normal. What I didn’t know is that normal would never be the same for me again.
When I woke up from surgery all that I could feel was intense, excruciating, and life changing pain in my feet. A cold I have never felt before. My nurse chalked it up to the anesthetic working it’s way through my body. At the time I didn’t know there could be another reason. I wasn’t healing properly from surgery and I wasn’t receiving help from my doctor or my neurosurgeon. In the spring of 2016 my doctor finally referred me to an internist to try and figure out what was happening. By this point my feet were permanently freezing cold, they turned blue and purple and had poor arterial colour return. I was experiencing a pain I had never felt before, a pain I don’t wish on my worst enemy. Nothing helped.
The internist looked me over for an hour, the longest any of my doctors had spent with me since prior to being diagnosed with disc herniations. He asked me a thousand questions, or at least it felt like that many lol. At the end of the appointment he wrote letters on a piece of paper and told me I had Complex Regionsl Pain Syndrome. He also told me that I should go home and google what it was because describing it would be too difficult a task for him.
Usually people stay away from reading the Internet when it comes to learning medical information. Often times the Internet will paint a picture of an awful prognosis far from what you are currently experiencing. A nightmare of symptoms and diagnoses. The only difference is with me I am living a nightmare. A nightmare with no cure, no known treatments , and a high risk of the symptoms spreading throughout your body.
My family doctor had never even heard of CRPS, and she had no interest in learning about it either. She referred me again to a specialist who runs a pain clinic a few cities over from me. Since then he has been providing me different treatments, all of which have failed. I have had two nerve block injections both of which were unsuccessful. I am receiving care from a kinesiologist and a psychologist, as well as my main doctor who is an anesthesiologist.
Since being diagnosed with CRPS my entire life has been altered. I will no longer live a second without pain, I will lose sleep, cry, scream and beg for help. I will not be able to return to the career that I loved. I have to use a cane to walk because my body is crooked from scoliosis and I have falls due to tremors, a symptom of CRPS. My husband will no longer have the same wife he knew to be active and full of life.
My purpose for this blog is to have an outlet to say what I truly feel without the fear of reprimand. A place where people can ask the questions that they are too nervous to ask their doctors. A place where people will understand when I have a day where all I do is cry, and days when all I do is fight. What I can promise is I will be honest, open and truthful. I won’t BS what I am going through, because we do enough faking in real life. It won’t always be pretty, but it will always be the truth.