CRPS Awareness and Prevention What can we learn from each other
Part 1 of 2 America needs to take a play from the United Kingdom’s playbook when it comes to Complex Regional Pain Syndrome (CRPS). Sometimes I think that our healthcare system is too arrogant for its own good. We believe we are the best in the world, and in some things, that might be true. In regard to CRPS, there is room for much-needed improvement.
We should be taking a cue from other countries on how they treat CRPS. It always seems to this writer that we are years behind other nations. We know that early intervention can prevent the spread of CRPS, or even stop its onset. The key is early detection and aggressive treatment. However, before we can even get to treatments, we have to improve awareness and recognition among our medical providers, and society generally.
I’ve personally been faced with a doctor in an emergency department refusing to believe that CRPS is real and that I am not a drug seeker. That incident has produced a permanent trauma in my brain that, to this day, brings on anxiety. The entire experience nearly caused me to sign a DNR (Do Not Resuscitate) and give up. How many people do sign a DNR? How many give up on themselves because the medical community gave up on them? With a 70% suicide consideration rate among CRPS patients, you would think that we could do better. We will not reduce those incidents until medical providers are better educated and far more aware. There is no doubt in my mind that countless lives are lost due to the sheer ignorance of Complex Regional Pain Syndrome.
In contrast with the United States, the UK has a national treatment plan and efforts to diagnose and treat CRPS at the onset, which have been in place for a decade now. Here, we haven’t even put out a white paper. These guidelines are not written for just one type of doctor, but 30 different specialties. Each discipline is addressed in thewww.rcplondon.ac.uk/guidelines-policy/complex-regional-pain-.... It is due to be updated soon. The RCP revises its policies every five years. The CRPS protocols were last revised in 2018. Here in the United States, we’ve not even begun to have protocols, or for that matter, treatment plans nationally recognized. The federal government is slow to put anything on the books for Complex Regional Pain Syndrome. How slow? It’s been over 200 years since CRPS was first diagnosed on the battlefields of the Civil War, and yet the FDA has never approved a single treatment for it. We have achieved orphan disease status, which “should” give us better access to treatments like ketamine infusions and low-dose naltrexone to name. Yet for some, there is no access to any treatments at all.
I want to lobby for change. I need you to join me. For the medical community in the United States to know that CRPS patients exist. It needs to start in medical school, with more than a twenty-minute cursory lecture. Doctors are told to practice for the majority. If it sounds like the person has heart disease, then it’s heart disease. They say, “If it sounds like a horse, then it’s a horse.” However, sometimes there are zebras. Zebras are a medical rarity, patients who have rare diseases. Medical zebras are not spoken of enough to stay relevant in the minds of our medical providers. Unlike the UK, we do not have protocols and best practices for our providers when it comes to rare diseases. I often wonder how “rare” CRPS truly is, and how much it goes undiagnosed or misdiagnosed. The average CRPS patient will tell you that it took years, and many doctors, to finally arrive at the correct diagnosis, and the right treatment combination to allow them to have some semblance of a “normal” life.
What do I mean by “normal” life? I’m talking about bathing without help, cooking a meal, or even just walking around a grocery store. Of course, my motto is to “work smarter, not harder,” so I use my limited energy for things I truly want to achieve even if it’s only something as simple as grocery shopping.
There is an active protocol in the UK that warns doctors to look out for signs or symptoms of CRPS in instances of physical injuries. For example, orthopedic doctors are specifically told to watch out for symptoms. One recommendation states, “Surgeons should be aware that the diagnosis of CRPS can be made in patients who have only had minor soft tissue injury. It may even occur without a traumatic event. A CRPS diagnostic checklist should be available in orthopedic and plastic surgery departments, including outpatient departments and plaster rooms.” (1) This reminder to providers prevents years of undiagnosed suffering. Why do