Kicking a soccer ball without shoes does not usually lead to complex regional pain syndrome (CRPS), but for one 13-year-old girl the seemingly innocuous incident yielded a sprain, hairline fracture and a lot of misery. After a year of largely unsuccessful therapy, the young woman ended up in the capable hands of Anita L. Davis, PT, DPT, a physical therapy coordinator at Jacksonville, FL-based Brooks Rehabilitation.
Nine sessions filled with weight-bearing exercises, resisted walking, balance drills and jumping activities helped the girl return to running and kicking a soccer ball. All the while, pain ratings gradually decreased.
Unlikely triggers are all part of the chronic pain landscape, but most CRPS conditions stem from traumatic injuries and sprains, with fractures and post-surgical complications topping the list of causes. "I have seen cases where an arthroscope on an ankle just to debride some tissue led to CRPS," said Dr. Davis. "A routine bunionectomy may yield complications that lead to the condition."
Diane Hartley, PT, DPT, recalls one patient who got hit in the heel with a grocery cart, yet another minor event that led to major suffering. "Trauma is the number-one cause," said Dr. Hartley, owner of Hartley Physical Therapy, St. Petersburg, FL. "With the grocery cart, the heel cord was not torn. It was a minor soft-tissue injury that developed into severe CRPS."
Severe cases are Dr. Hartley's specialty, and she believes that for too long therapists believed such patients were beyond help. Rehab specialists often treaded too lightly because they feared exacerbating symptoms.
"You should not be afraid to exercise patients," said Dr. Hartley. "Moderation is the key. If you overstimulate the sympathetic nervous system with pain, then you are going to have more pain - and the CRPS is going to get worse."
But how much pain is too much? Rachel Feinberg, PT, DPT, believes PTs are operating under a fundamental misconception that pain will worsen CRPS. "We are taught not to put people in high levels of pain," said Dr. Feinberg, director of physical therapy, Feinberg Medical Group, Palo Alto, CA. "But until you understand the disease, you must know that part of the treatment is, unfortunately, to cause people a lot of pain - and have them work through that high level of pain."
Symptoms and Strategies
Dr. Feinberg contends that the most difficult part of treating CRPS is dealing with subjective levels of intense pain. This subjectivity can lead to disbelief among many medical professionals, many of whom are not familiar with complex chronic pain diseases such as CRPS.
"There are objective symptoms such as temperature, sweating and color changes," explained Dr. Feinberg. "But if these symptoms are not present during the 15 minutes that patients are in the doctor's office, the patient can sound like a hypochondriac. Sometimes CRPS is not sparked by a traumatic event. You can get if from a hangnail or stubbing your toe. If the doctor is not familiar with CRPS, it can look like the patient is making it up."
Patients usually arrive at Dr. Feinberg's office after referrals from orthopedic physicians, pain management docs, physiatrists or anesthesiologists. One patient came her way after trigger-finger surgery proved unsuccessful. In fact, the surgery made the woman's right hand worse, leaving her unable to use her third, fourth and fifth digits.
The index finger and thumb were only operating at about 10 percent of normal, with all fingers in a contracted position. The first strategy was a heavy dose of education. "Some patients think they are going crazy, so I assure them that symptoms are normal, which calms them down," said Dr. Feinberg. "I move on to relaxation breathing, which includes mental imagery, because I am going to ask them to work through high levels of pain. At that point, I see where they are starting from. If it's an upper extremity, I see how much range of motion they are capable of. If it's lower extremity, I see how much weight they can bear."
Dr. Feinberg typically does not touch patients or force movements when working through CRPS manual therapy. Instead, she leaves patients in control, believing that this ability to dictate the pace ultimately pushes boundaries.
"Desensitization follows," added Dr. Feinberg. "This can include rubbing hands against a piece of cloth or jeans. We continue to build from there."
Building a foundation for healing can often involve reforming the crucial mind-body connection. In the case of CRPS, these brain-based methods include innovations such as mirror box therapy, originally used for phantom-limb syndrome. Dr. Feinberg used it with her hand patient, and she believes it has potential.
Imagine standing at a full-length mirror, but the mirror is facing the right hand, and blocking the left hand. It may be a bit hard to visualize, but the mirror makes the right hand look like the left hand.
"You are looking in the mirror and seeing your right hand, but actually you are seeing a left hand that is OK and moving well," explained Dr. Feinberg. "You are using the vision pathway to trick the brain into thinking that your left hand is OK. You are changing a pathway in the brain that has been sending inhibitory and painful signals. You are telling it through the vision pathway that you are fine."
Cure or Manage?
The stakes are high with CRPS, because cases left untreated can lead to severe disability. "I've heard of people who have even committed suicide," lamented Dr. Hartley.
"There are people who can't walk again because they can't have any limb touch the ground. They don't leave their house because clothing can't touch their skin," she said.
With so much riding on successful treatment, just how much can be done? In most cases, there are no quick fixes. For Dr. Hartley, who herself suffered from CRPS brought on by a whiplash injury, diagnosis came early but recovery took a long time. "It took me several years," she revealed. "The key was balancing proper sleep with pain control, all while exercising - but not to the point that it overstimulated the sympathetic nervous system."
Can CRPS be totally cured? Ask three PTs and you are likely to get three different answers. In Dr. Hartley's opinion, the answer is an unequivocal yes. "You can be totally cured," she said. "I have absolutely no signs or symptoms of CRPS, and I've gone through several other surgeries to different parts of the body, plus other bad traumas. It won't be quick, but patients can overcome it."
Dr. Feinberg disagreed, contending that minimizing and managing the condition is the best hope. "I do not think CRPS is curable," she said. "In the very best case, it is in remission and you can get back to almost your full life. That is even rare from what I have seen, but I tend to see the worst cases. Usually it is more about managing the symptoms. I compare it to diabetes because patients can usually relate to that, although they are completely different from a clinical perspective."
Dr. Davis took a middle ground on the question, preferring to peg full recovery as a lack of clinically significant symptoms.
"I think we can take CRPS patients to a point where they don't present with signs and symptoms strong enough to meet the diagnostic criteria," said Dr. Davis. "They may still have small impairments in strength, mobility, temperature or color from time to time, but it would be clinically insignificant. With my young lady who played soccer, her temperature differences on discharge were less than a degree, which is within normal range. And her color differences were much better."
Functionally, she's playing like a young teenager again, added Dr. Davis.
"We've definitely got her on the right track. However, as she progresses to adulthood, that ankle may be vulnerable if it gets sprained again in the future. Under the right circumstances, some of those patterned reflexes of pain may initiate much more readily in her than in somebody else who has not had her previous experience."
Greg Thompson is a freelance writer in Fort Collins, CO.