What is Complex Regional Pain Syndrome?
Complex Regional Pain Syndrome a severe pain condition that affects the nervous system. It is recorded as the worst form of chronic pain possible. It has many different names, including Reflex Sympathetic Dystrophy (the old name) and Hand-Shoulder Syndrome. No matter the name, it is the same condition. People think it is rare, but it is rare only because doctors are not educated about it.
It can develop from surgery gone wrong, a needle being poked in the wrong spot, an injury, or just appear one day. Mine was from an injury that stretched out nerves in my right shoulder. I never got the right treatment or the right diagnosis despite seeing over 14 doctors in a 4 year time span. Mine is now full-body. That is not always the case for every CRPS patient. Every patient presents differently. Different combination of symptoms, varying timeline, and a wide array of pain origins.
CRPS begins in the sympathetic nervous system. The brain gets a pain signal that is misinterprets as being more dangerous & more painful that it actually is. It sends out the wrong level of troops to "put out the fire" so to speak. This perpetuates a NEVER-ENDING pain feedback loop. Your brain & body are now convinced that you are in severe pain ALL THE TIME, even long after the initial injury has healed. Suddenly EVERYTHING becomes a red alert pain signal, even things that are small like paper cuts and things that shouldn't hurt, like hugs or the touch of clothing. Over time, if left untreated or not caught in time, the CRPS spread into the central nervous system & re-writes how your CNS processes information. Everything becomes affected - muscles, memory, concentration, internal organs, sleep cycles, and other health problems may become exacerbated. Constant Pain Becomes the New Reality.
Doctors know very little about this condition. New research found a link to CRPS being genetic at its core. Patients know more because we spend our time researching it & talking to other patients, and yet - doctors dismiss us & our knowledge. They will try a battery of nerve medication. They may try other treatments like pain pumps or Ketamine infusions. CRPS patients become dependent on medications just to be able to function during the day. Just to be able to put clothes on or do dishes or make lunch or STAND UP. A lot of people, myself included, can no longer work. Some can, which is awesome, but that's not the case for everyone. For some, having a service dog becomes the last hope for independence. I was one of those people.
At the beginning, I trained Robbie with no aid from medications or pain pumps. Doctors refused to help me & told me I had "no options". They wouldn't prescribe me pain relief medication due to my young age (23). I'd wake up every day & train Robbie in excruciating pain because I knew he was my best shot at regaining independence. I live on the pain scale at a daily 8/10 and being at 9/10 or 10/10 is totally normal. I learned how to adapt. Robbie helped to keep me strong, and he helps help me in ways I couldn't have dreamed possible. With Robbie, I got my life back. Not the same life, but in many ways, this new life is more fulfilling and balanced for me.
It can develop from surgery gone wrong, a needle being poked in the wrong spot, an injury, or just appear one day. Mine was from an injury that stretched out nerves in my right shoulder. I never got the right treatment or the right diagnosis despite seeing over 14 doctors in a 4 year time span. Mine is now full-body. That is not always the case for every CRPS patient. Every patient presents differently. Different combination of symptoms, varying timeline, and a wide array of pain origins.
CRPS begins in the sympathetic nervous system. The brain gets a pain signal that is misinterprets as being more dangerous & more painful that it actually is. It sends out the wrong level of troops to "put out the fire" so to speak. This perpetuates a NEVER-ENDING pain feedback loop. Your brain & body are now convinced that you are in severe pain ALL THE TIME, even long after the initial injury has healed. Suddenly EVERYTHING becomes a red alert pain signal, even things that are small like paper cuts and things that shouldn't hurt, like hugs or the touch of clothing. Over time, if left untreated or not caught in time, the CRPS spread into the central nervous system & re-writes how your CNS processes information. Everything becomes affected - muscles, memory, concentration, internal organs, sleep cycles, and other health problems may become exacerbated. Constant Pain Becomes the New Reality.
Doctors know very little about this condition. New research found a link to CRPS being genetic at its core. Patients know more because we spend our time researching it & talking to other patients, and yet - doctors dismiss us & our knowledge. They will try a battery of nerve medication. They may try other treatments like pain pumps or Ketamine infusions. CRPS patients become dependent on medications just to be able to function during the day. Just to be able to put clothes on or do dishes or make lunch or STAND UP. A lot of people, myself included, can no longer work. Some can, which is awesome, but that's not the case for everyone. For some, having a service dog becomes the last hope for independence. I was one of those people.
At the beginning, I trained Robbie with no aid from medications or pain pumps. Doctors refused to help me & told me I had "no options". They wouldn't prescribe me pain relief medication due to my young age (23). I'd wake up every day & train Robbie in excruciating pain because I knew he was my best shot at regaining independence. I live on the pain scale at a daily 8/10 and being at 9/10 or 10/10 is totally normal. I learned how to adapt. Robbie helped to keep me strong, and he helps help me in ways I couldn't have dreamed possible. With Robbie, I got my life back. Not the same life, but in many ways, this new life is more fulfilling and balanced for me.
CRPS isn't my only life-long condition. I was born with a rare genetic syndrome called Triple X Syndrome (also known as Trisomy X). It means that I was born with three X chromosomes instead of the normal two. This affects my ability to develop and maintain muscle tone, makes my ligaments and tendons move and over-stretch more easily, and I'm more prone to injury from simple movements. Additionally, I developed Temporomandibular Joint Disorder (TMJ or TMD) in my late teens, and it's been heavily complicated by CRPS spreading into my face and jaw. My jaw has dislocated 5x in 12 years. The first 2 were pre-CRPS and easily fixed. The final 3 were complicated by the CRPS making my jaw spasm and freeze open, making it much harder to put back in place. The last one doctors left me dislocated for a month and a half, then put in back in, wired my jaw shut for 2-3 weeks, then did surgery so it can't dislocate on the left side anymore. The right side maintains that potential, but hasn't yet, and I do what I can to mitigate that risk. I developed PTSD from how doctors treated me during my years of seeking treatment for CRPS, and compounded by my jaw problems and subsequent failure of doctors again.
Robbie was trained in a variety of tasks that helped me manage my disability caused by the CRPS and issues complicated by the TMJ and Triple X. Read more about those tasks here. Not everyone is disabled by CRPS. Mine was a disability from the start because it severely altered my ability to work and take care of myself independently, and over time it spread to being full body, which took even more of my independence and capabilities. It took me 10 years to find a job I could do, with my own business, Disabled Advantage.
In 2021, we had to retire Robbie due to a shoulder injury. I'm spending my days training his successor, Austin, as well as helping others with CRPS or chronic conditions learn to train their dogs, either for mobility work or as a companion, through my business, Disabled Advantage Dog Training & Consulting, LLC.
Robbie was trained in a variety of tasks that helped me manage my disability caused by the CRPS and issues complicated by the TMJ and Triple X. Read more about those tasks here. Not everyone is disabled by CRPS. Mine was a disability from the start because it severely altered my ability to work and take care of myself independently, and over time it spread to being full body, which took even more of my independence and capabilities. It took me 10 years to find a job I could do, with my own business, Disabled Advantage.
In 2021, we had to retire Robbie due to a shoulder injury. I'm spending my days training his successor, Austin, as well as helping others with CRPS or chronic conditions learn to train their dogs, either for mobility work or as a companion, through my business, Disabled Advantage Dog Training & Consulting, LLC.