CRPS, a New Four-Letter Word from Hell
Written by James Doulgeris for the RSDSA blog.
August 30, 2018 is the first time I ever heard the letters CRPS, and they are four letters I can assure you that you will never want to hear preceded by “You have …” as I did. This is not my story, but one about the challenges of sufferers of little understood orphan diseases told by a healthcare professional.
CRPS stands for Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy, or, RSD. There is another, more sinister, name for it, “The Suicide Disease.”
I’ll get to why shortly.
It’s now ten months later and I push through day by day. In my work as a healthcare executive and now life as a patient, I deal with a lot of doctors. Those that know, ask, or find out that I have CRPS pretty much give the same reaction – “That’s rough, sorry,” or a version of it.
Having a debilitating, chronic disease is also isolating to a degree. After people you work with professionally, colleagues, even friends, stop feeling sorry for you and realize that it won’t get better, they begin to move on without you.
The more acute my symptoms, the more I become to be viewed as who I used to be, and that’s hard to reconcile as well. This is a shared feeling that is also important to this story.
Why the “Suicide Disease?” CRPS, usually starts in a limb, which manifests as extreme pain, swelling, limited range of motion, and changes the skin and bones. The McGill pain index, a scale for rating pain, ranks CRPS higher than childbirth, amputation, and cancer. It may initially affect one limb and then spread throughout the body. Over a third of affected people report symptoms throughout their whole bodies. I am one of those.
Presently, about 200,000, or about one in 1,700 people in the U.S. are definitively diagnosed with CRPS.
Idiopathic chronic pain (pain with no definitive cause lasting for more than six months) is a primary diagnosis for more people than diabetes, heart disease, and kidney disease combined.
CRPS, it seems, is a diagnosis that may be exploding in proportion to newly found awareness among physicians and it appears that CRPS (along with its sometime companion condition called MCAS, or Mast Cell Activation Syndrome, a hyperallergic condition) are well on their way to be the diagnoses DuJour. There is, however, growing medical support stating that CRPS is significantly underdiagnosed that may further fuel this trend.
One of the primary goals of organizations supporting CRPS sufferers like RSDSA has been to increase awareness of the disease. A wave of new diagnoses bordering on an epidemic may well change the need from increasing awareness to managing it.
There is good reason. An explosive new diagnosis also creates a change in optics that can change physician reactions from “That’s rough,” to “Oh, really?”
This is not an opinion; it has some meat on the bone. The governmental and institutional overreaction to opioids, for example, has resulted in at least 40 suicides to date for CRPS patients who were taken off opiate pain meds to comply with new regulations. Take unrelenting pain, fatigue, weakness and limited mobility added to isolation and depression and that combination alone explains why CRPS is called the Suicide Disease. It is a condition that won’t kill you, and, that’s the bad news.
There is danger in the present political climate.
There is no denying that there is an opioid crisis. When government and the media decide that something that is abused by a few bad doctors accommodating “weak” people promoted by one or two greedy pharma companies is bad for everyone, good doctors get caught in the overreactive, rigid regulation and innocent people suffer and die. The CRPS community is particularly vulnerable to this mindless group-think.
While some physicians have stepped forward to be the adults in the room, pointing out that these drugs help millions and not every prescription is bad, the new rage of “guilty until proven innocent” and identity politics is a potential death sentence to those unfortunate enough to be identified as potential drug abusers who need to be saved from themselves.
Ignorance is a dangerous thing when combined with activism, power and potential political gain.
So, with all this being said, there may be hope for CRPS sufferers, both as temporary exceptions to restrictive pain medication laws and as beneficiaries of new treatments that come with a rapidly broadening market for them.
The path to sanity begins with the diagnosis of CRPS moving from an inferred diagnosis to an empirical one, a course of action requiring credible medical consensus that at least two positive empirical clinical tests must be present to confirm a diagnosis of CRPS. For example, a temperature differential of 1-degree F from one limb to another, a positive reaction to a sympathetic nerve block, and, or, peripheral demyelinating neuropathy supported by one or two of the myriad of companion symptoms. It’s a complex disease, but complexity creates a lot of choices.
The symptoms of CRPS are well documented and horrifyingly real.
Evidence-based medical protocols confirming the condition are not. And, the time is already overdue to get them in place.
Since the condition is historically rare, so are experts in it. They should be in the vanguard of establishing diagnostic protocols and teaching how to treat it on an international stage.
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James Doulgeris co-founded Osler Health in 2013 and has served as its Chief Executive since inception. He has over thirty-five years of executive healthcare management experience serving primarily as president, CEO, and director of public and private companies and healthcare providers in the hospital, ancillary provider, medical device and healthcare services sectors. He is also a highly acclaimed speaker and thought leader on healthcare subjects from population health to using healthcare analytics. In addition to being a best-selling novelist, he is widely published and interviewed for health care issues on many prominent platforms and publications.
Osler Health is a specially integrated clinical network of elite primary care physicians who work collaboratively to deliver the highest quality care at optimal cost. We are on the vanguard of medical providers making the transition from being service providers to clinical managers realized by our use of data and advanced analytics to equip, enable, and empower our participating physicians to prevent acute episodes while being highly equipped to manage them if they do happen.
Osler’s work allows us to be responsible for the totality of each patient’s care within our network to efficiently deliver the best results individually and as a population. This has made Osler one of the most successful accountable care organizations in the country with a reputation for being years ahead of the industry.