What Is Complex Regional Pain Syndrome?

Complex Regional Pain Syndrome is 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 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. ​

How It Begins

It can develop from surgery gone wrong, a needle being poked in the wrong spot, an injury, or just appear one day. CRPS is reliable in that every patient has a different combination of symptoms, varying timeline, a wide array of pain triggers that may change on daily basis, and a different origin story. Some have it in one location, others have the pain full body. One CRPS patient may live at a daily level 5, while others a daily pain level 8.

Where It Begins

CRPS begins in the sympathetic nervous system. The brain gets a pain signal that it misinterprets as being more dangerous & more painful than 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. People with CRPS struggle with brain fog — which affects short-term memory, the ability to find the right words, get easily distracted or off-track mid conversation, and more. Our brains spend so much time trying to deal with the pain that somedays it simply cannot handle other tasks.  

Healthy Pain vs. CRPS Pain

For healthy people, pain is a sign that you need to change something, see a doctor, rest, etc. For people with CRPS, pain is as normal as breathing and we have to constantly ask our brains to compartmentalize it. Feeling like you’re screaming on the inside and maintaining an “I’m fine” mask on the outside is necessary for getting through every day, but can be extremely tiring to do every day. People with CRPS don’t have another choice though. Our lives go from thinking very little about mundane tasks such as how to pick up a coffee mug, to having to analyze every action before we do it in order to perform basic routines with as little pain consequence as possible. Every action has a consequence, but we can minimize the consequence on occasion. For this reason, some patients may have an elevated fear of additional pain such as spraining an ankle or getting burned while cooking, develop anxiety and/or depression, and more. CRPS infects every aspect of our lives and everyone in it. Constant Pain Becomes the New Reality. ​

Medical Care

Doctors know very little about this condition. 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, but it does not mean they are addicted. Medication can mean the difference between being able to put clothes on or do dishes or make lunch or stand up and being unable to function. A lot of people, can no longer work. Some can, which is awesome, but that's not the case for everyone.

​CRPS does not disable everyone who has it, but CRPS can be a disability if your case is severe enough. While it is not traditional, partnering with a service dog for CRPS can be a last hope for independence. A a service dog can be trained to help the handler perform tasks that would otherwise cause flares, such as dragging a laundry basket so the handler doesn’t have to carry it, and thereby preventing the flare up before it starts. These dogs also do tasks that are difficult or impossible for their handler to do because of the limitations on their mobility from the CRPS. CRPS service dogs most often perform mobility-based tasks, but can be cross-trained to provide various psychiatric tasks, including grounding, finding exits, and more.

Ways to Learn More

• Check our CRPS Resources page for several CRPS organizations who offer further information on how CRPS impacts a person, assistance finding a doctor or mental health support, and more. 
• Book a coaching session with me to ask one on one questions about your CRPS experience, get advice for handling certain types of flares, and explore the idea of a service dog if it is something which interests you. I offer these in 1 or 2 hour sessions - if you know you have a lot of questions, I recommend the 2 hour.