The Lingering Mystery of Complex Regional Pain Syndrome

Philip Getson, DO, is on a crusade. His mission is to correct many of the misconceptions about complex regional pain syndrome (CRPS). It's going to be a long mission. As Getson himself was quick to admit, there a lot of things about CRPS that even he still doesn’t know. He’s not alone. CRPS is a mysterious condition even among pain professionals; difficult to diagnose, difficult to treat, and with presenting symptoms that can be all over the map—from vomiting blood to sweating, hoarseness to irritable bowel syndrome.

Borrowing from the author of Conversations with God, Neale Donald Walsch, Getson opened with a look at who knows what versus what they think they know. There are those who don't know, but don't know that they don’t know. "They're called innocents," said Getson. "They are the willing, and those are the people I'm trying to reach out to. There are those who don't know, but they think they know. "Walsch calls them dangerous," Getson said. "I call them referring doctors. They are the ones responsible for keeping me busy."

Little is known about CRPS. Time and again, Getson closed a line of discussion by saying, "Of course, there are very few if any clinical papers on this." But he and some of his colleagues, including Drexel University's Robert J. Schwartzman, MD, are working to change that. "When I complain about the lack of clinical research papers on CRPS, people often say, 'Well, why don't you write a paper on it, then?' Someday,” he said with a sigh.

Though fascinated by the pathophysiology of CRPS, Getson's Friday session instead focused on the clinical application. Upon identifying a CRPS patient, the most important thing, according to Getson, is to tell the patient that you know what is wrong them. "That’s 50 percent of the battle right there," he says. "Being able to tell them what they have is a major step in the right direction, because we know that people who don't know what they're suffering from don't do well."

The average patient diagnosed with CRPS sees 4.8 physicians before arriving at the proper diagnosis, but Getson said that most of the patients he has diagnosed have seen many more than that. Because of the range and variety of the symptoms CRPS patients can experience, many physicians work backwards.

The long list of symptoms related to CRPS include pain, skin hypersensitivity, sweat disturbance/edema, motor disturbances, pain from stimulation that doesn't normally provoke pain; increased sensitivity to sensory stimulation, pain disproportionate to any inciting event, abnormal skin color or temperature, abnormal hair growth, dystonia, tremor, or weakness—the list goes on and on. Though it's a misconception that CRPS pain doesn't spread, Getson contends that it does in most cases, sometimes up to eight years after the initial diagnosis. "I see spread in about 70 percent of the patients I see. And I can tell you that the second limb is almost always worse than the first.”

Properly diagnosing CRPS is like solving a mystery. "You're asking a bunch of questions that no one has ever asked them. Once you pull at the data together, you realize that all of the different things they're dealing with play into the pain. This is not an impossible diagnosis to make.”

But it can be very confusing, Getson says, because there are virtually no patients who can be described as having all the "classic" symptoms of CRPS. "To take the kind of history you need to take [to identify CRPS], most physicians don't have time. Or, more correctly, we don't take the time. I don't take insurance; I ask patients to pay cash. So I'll have 90 minutes with a patient and really get a thorough look at the medical record.”

Getson had strong words for both the insurance industry and medical schools. The former, he said, are often an obstacle to successful treatment. For example, Getson does not recommend using triple-phase bone scans as a diagnostic tool for potential CRPS patients, even though this was long considered the gold standard test. He says he has tested 100 patients who turned out to have CRPS, but that only four came back positive. "I don’t do them," he says, "because I don’t like sticking CRPS patients with a needle, and I don't like putting a bullet in the gun of the insurance company. The test is going to come back negative, and then I'll have to write a 3-page letter explaining why they're wrong, which I really don't want to do."

Instead, Getson prefers thermography, a non-invasive test. "You can stand someone in front of a camera and know that they have CRPS. Beyond helping diagnose CRPS, the test has good predictive value." Getson says that the test can often predict which limb CRPS is going to spread to next in a given patient. "We’d like to be able to use this to set up a roadblock to the nerve before it becomes problematic, but we know the insurance companies aren't going to let that happen. But at the very least, we can know where the spread is going and prevent it from flourishing by getting in early."

As for medical schools, Getson says that when he asks medical students how much training they've received on CRPS in 6 years of schooling, they’ll either say 'none,' or 'about five minutes.' This is a condition that affects anywhere from 1.5 million to 10 million people. If we split the difference, let's say it's 5 million people. We have to know more about this. We have to be able to find it and treat it earlier."

Getson is not a big proponent of most pharmaceutical treatments for CRPS, stating that all have their limitations. Ketamine is his treatment of choice for many patients. "Ketamine, to me, is not the be-all and end-all [treatment], but it's the best of what we have right now." Getson also talked about complementary and alternative therapies, which he says have often been successful in treating his patients. He emphasized the psychological aspects of CRPS as well. "Almost 80 percent of the CRPS patients I see are women. [When they come in during a flare-up], my first question is, 'Did you have an injury since I last saw you?' My second question is, 'What’s going on at home?'"