I have a problem called complex regional pain syndrome or CRPS. I’d kinda like to know how my symptoms compare to others. Is there a way to figure that out?

Complex regional pain syndrome (CRPS) is a disorder that can cause severe pain and disability. However, as painful and disabling as the condition is, there is not a lot that doctors know about it. More women get it than men. It occurs after about one to two percent of all bone fractures. It is most common (up to 35 percent) after certain types of wrist fractures.

CRPS more commonly affects the hand or foot, but may spread further up the affected limb and even into the opposite limb. The common symptoms of CRPS are unrelenting burning or aching pain, skin sensitivity, swelling, discoloration, sweating, and temperature changes. If the condition becomes chronic, dystrophy or deterioration of the bones and muscles in the affected body part may occur.

Many patients like a road map to help them navigate life’s many twists and turns. Having a painful condition like complex regional pain syndrome (CRPS) often puts people in the frame of mind of making comparisons. Finding out that others suffer as much (if not more) than we do helps the human mind accept and adapt to suffering.

There are several different tools doctors use to evaluate CRPS. Some just address the pain intensity. Others measure function, disability, and impairments caused by the pain and other symptoms.

Just recently, a group of rehabilitation researchers from around the world put together and tested a scale designed to measure severity of CRPS symptoms. They call it the Complex Regional Pain Syndrome Severity Score or CSS.

The CSS is a simple test that can be given easily yet still reflects diagnostic features of CRPS (e.g., pain, sweating, skin color changes). It was tested on 114 people with a known diagnosis of CRPS and compared with 41 patients with nerve pain that was not caused by CRPS. Most of the CRPS patients had a history of fracture or crush injury leading to the development of CRPS.

The test consisted of a checklist of signs and symptoms common with this condition. Self-reported symptoms included differences in temperature, skin color, sweating, and swelling from one side (involved side) to the other (uninvolved side). A second section of the test evaluates signs observed by the examiner such as exaggerated levels of pain with pinprick test, differences in skin temperature felt by the examiner, and decreased range-of-motion of the involved part (hand, foot).

Higher test scores meant more severe pain and other symptoms. Patients with CRPS had much higher test scores than the patients in the nerve pain but non CRPS group. Statistical analysis showed that this new scoring system for severity of CRPS is reliable and valid. In other words, it can be used dependably to identify people with CRPS and provide a picture of the severity of their condition. Used over time, it can also show changes or fluctuations in individual cases.