How rare is CRPS?

Although the exact number is difficult to determine due to a number of factors, it has been theorized that between 5 and 8 million people worldwide suffer from Complex Regional Pain Syndrome (CRPS).

Considering the global population has exceeded 8 billion people, the rough estimate of those suffering from CRPS ranges from 0.06% to 0.1% of people around the world. 

Taking into account all the people who do not have access to superior medical care, the relative failure of such superior medical care when it comes to the accurate and timely diagnoses of CRPS, and all the people in underdeveloped and underprivileged areas who may never have been to a doctor, clinic or hospital, never mind diagnosed, it stands to reason that that number may be much, much higher. 

Why is the number of people suffering from CRPS so difficult to estimate?

• Estimates do not factor in all the people who do not have access to superior medical care
• The relative failure of accurate and timely diagnoses of CRPS
• A substantial, if not the majority of, CRPS patients are often misdiagnosed due to a widespread lack of familiarity with the condition – The number of doctors who specialize in CRPS is very few
• There is no dedicated diagnostic test for CRPS
• Estimates do not factor in people in underdeveloped and underprivileged areas who may never have been to a doctor

Which populations are most affected by CRPS?

While our current understanding of CRPS has come a long way since the early definitions of the neurological disease, it is still not complete. As CRPS is such a rare disease and there are few studies on the condition, our access to statistical data is quite limited. Most data comes from retrospective reviews of medical databases.

Gender

Several studies have shown that many more women seem to suffer from CRPS than men (about 75 percent more).

According to The National Library of Medicine’s PubMed Central¹, the retrospective analysis of the Nationwide Inpatient Sample database from 2007 to 2011 found that out of 33,406,123 total patients in the study, 22,533 patients or 0.07% were discharged with a diagnosis of CRPS. Population factors that were associated with CRPS included female gender, Caucasian race, higher median household income, and the presence of comorbidities such as depression, drug abuse, and headache. Conditions such as obesity, diabetes, hypothyroidism, and anemia were associated with lower rates of CRPS.

Age

Symptoms of this disease may start to appear at any time in life.

CRPS has been diagnosed in very young children and usually peaks around midlife. Our clinic has treated patients of all ages, ranging from elementary children to patients in their 50s or 60s.

It is a chronic disease that often worsens over time. Alarmingly, 35 percent of sufferers eventually report symptoms throughout the body. The disease may remain localized, spread slowly over years, or progress rapidly like a wildfire out of control.

According to rarediseases.org², in the pediatric population, the onset of CRPS usually occurs in early adolescence with the lower end of the range falling between 7 to 9 years. In adults, the age of onset is highly variable from 37 to 70 years of age.

1 Taylor, S., Noor, N., Urits, I., Paladini, A., Sadhu, M. S., Gibb, C., Carlson, T., Myrcik, D., Varrassi, G., & Viswanath, O. (2021). Complex Regional Pain Syndrome: A Comprehensive Review. Pain and Therapy, 10(2), 875–892. https://doi.org/10.1007/s40122-021-00279-4

2 Complex Regional Pain Syndrome – Symptoms, causes, treatment | NORD. (n.d.). National Organization for Rare Disorders. https://rarediseases.org/rare-diseases/reflex-sympathetic-dystrophy-syndrome/