CRPS Patients – How Many Are There In The United States?

INCIDENCE OF CRPS

According to the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institutes of Health (NIH) “it has been estimated that CRPS may present itself in 2-5% of individuals with peripheral nerve injury” ( See National Institutes of Health – NIH CRPS INCIDENCE   or the NINDS website as well). 

It is important to note that it states “peripheral nerve injuries”. Often times when estimating the number of CRPS patients in the United States people have misunderstood that quote and/or changed it to read everything from 2-5% of all nerve injuries to 5% of all injuries. 

This results in greatly exaggerated estimates of the number of CRPS patients. These incorrect estimates can range as high as 5 or 6 million!

NORD, The National Organization for Rare Disorders, recently officially designated CRPS as a RARE Disease. This means that they have determined that there are fewer than 200,000 CRPS patients in the United States. 

The reason a more precise number cannot be determined is due to, still, a lack of true understanding in the medical community of the trued definitions of exactly what CRPS Types I and II are despite the criteria being explicitly laid out by such people as the IASP. 

We are making headway though, amazing headway compared to ten and even five years ago. The medical community has come a long way in its understanding of our disease despite its’ complexity and let’s remember that that is why it has taken so long. Complex Regional Pain Syndrome is an extremely difficult disease to understand even for the most intelligent of physicians.