Phantom Limb Pain
- Paige Bierma, M.A., and Chris Woolston, M.S.
- Posted March 11, 2013
It was only a couple of weeks after Christian Bagge came home from the war in Iraq that the torment began. Lying in his hospital bed at Brooke Army Medical Center in San Antonio, Bagge suddenly felt a crushing pain in his feet. His feet, however, were not there. After the 23-year-old National Guard soldier's unit was hit by two bombs on an Iraqi road in June 2005, Bagge woke up in a military hospital in Germany with one leg amputated above the knee and the other below the knee.
It was when the Texas hospital began to wean Bagge off narcotics that the mysterious pain began. "It came on suddenly and feels like someone is smashing my toes with a hammer," says the Oregon-born youth.
What Bagge was experiencing is called phantom limb pain (PLP), a puzzling condition that's receiving increased attention as more and more U.S. vets come home from Iraq and Afghanistan with missing limbs.
A mysterious pain
As reported in the British Journal of Anaesthesia, almost all amputees feel at least some sensations in the missing limb. At first, the phantom limb feels intact, even movable. While a few lucky patients merely feel mild tingling or sensations of heat or cold, 60 to 80 percent of amputees suffer actual pain.
Phantom limb pain sometimes mimics the pain that afflicted the limb before it was amputated. In other cases, it creates new agony unlike anything a person has ever felt before. Some patients with the condition even feel as if the missing limb has been twisted or distorted into impossible positions. In Bagge's case, the pain was severe. "On the pain scale of one to 10, I'd say it was a six or a seven," he says. "But then again, my '10' is getting both of my legs blown off."
James Roper, M.D., is the chief of physical medicine and rehabilitation at the Birmingham Veterans Affairs Medical Center, where he has worked with hundreds of amputees over the years. "The most common description of phantom pain is that it's like a severe cramping, as if someone's foot is being crushed in a vise," says Roper. "Other patients tell me it's like a red-hot, searing, burning, or a sharp shooting pain." Many times the brain seems to reproduce the pain the patient felt in that limb before it was amputated. "I'll have veterans tell me, 'It feels like when I first got shot,' " Roper says.
Phantom limb pain usually shows up within days of the amputation. However, some people first feel the pain years or even decades after losing a limb. One patient, described in a 1999 issue of the journal Pain, felt new pain in a lower leg that hadn't existed for 44 years. It's no wonder a 2004 report from the American Pain Foundation called the condition "one of the most mysterious forms of pain known in medicine."
But progress has been made. Not long ago, people with phantom limb pain were often told that they were either imagining things or going crazy. While many questions remain, there's no longer any doubt that phantom limb pain is a physical problem arising from the severed nerves that once connected the missing limb.
Here's a leading theory, as best researchers can explain it: The nerves remaining in the stump continue to send messages to the brain, and the brain scrambles to process the information. As explained by the American Pain Foundation, the brain has a hard time fathoming the loss of a limb, so it tries to re-create the limb using the nerve signals as a guide. For reasons that nobody understands, the brain often translates those signals into pain. It's as if the brain needs strong, impossible-to-ignore reassurance that the limb still exists.
"The experience of the pain is just as real as if the limb were still there," says Roper. "But the truth is, there isn't a very good explanation yet as to exactly what causes it."
Zeroing in on treatment
At this time, there is no single treatment for phantom limb pain. Doctors typically have to sort through many different possibilities to find the best approach for each individual patient.
Christian Bagge and his doctors tried many different treatments, and most of them were not very effective, according to the Oregon native. "We tried tons of stuff: hot and cold baths, heating pads, self-massage, electrical nerve stimulation, and drugs," he says. "Some of the stuff that worked for other guys didn't work for me, and vice versa." While the hot and cold baths seemed to work and self-massage helped as well, Bagge says his worst pain usually came on at night. At that point, narcotic pain medications were his first choice.
Treatment can be extremely challenging, according to Roper. "We're a lot better off than we were after World War II," he says, noting that advances in research, better pain medications, and state-of-the-art prosthetics have greatly helped today's amputees. "But there is still much room for improvement."
According to reports from the American Pain Foundation, medications that calm nerves are a standard treatment. Options include anti-seizure drugs such as carbamazepine (Tegretol, Epitol) or tricyclic antidepressants such as amitriptyline. Some painkillers, including opioids and lidocaine, may also be effective. Often its a trial and error process to find what works best, and there are several drugs within these categories of medication that can be combined for effective pain relief.
Medications can be combined with alternative pain-relieving therapies, including transcutaneous electrical nerve stimulation (TENS), acupuncture, or biofeedback. While these techniques haven't been thoroughly tested for how well they relieve phantom limb pain, a small 2005 study published in Applied Psychophysiology and Biofeedback suggests that biofeedback can bring relief.
In another novel approach, researchers have used mirror therapy with some success to alleviate pain in amputated hands, arms, and feet. Mirror therapy works by having a patient watch himself move his intact limb in a mirror, and positioning the mirror in such a way to give the appearance that the missing limb is still intact. No one yet knows exactly why this helps reduce pain, but some researchers suspect that brain cells on the side of the body that have not been injured are activated by this visual stimulation. Others hypothesize that the visual appearance of movement in the amputated limb may reduce the activity of pain-sensing pathways.
One thing doctors are finding over and over again though is that mirror therapy works. In one 2007 study, researchers from the Walter Reed Army Medical Center reported that 100 percent of patients suffering from phantom limb pain in their legs experienced a decrease in pain with mirror therapy, compared to only 17 percent of patients who tried the same therapy with a covered mirror and 33 percent of patients who tried mental visualization.
Besides pain-relieving therapies, overcoming phantom pain usually requires psychological treatment. Losing a limb, after all, is a traumatic and life-changing event for anyone, and patients need social support as they gradually return to their lives. According to Roper, patients have a better chance of success if they work with a team of specialists, including doctors, surgeons, psychologists, and physical and occupational therapists. Also crucial: well-fitted and functioning prosthetics.
"Based on my experience, the people who do the best in recovery seem to be the ones who have a whole team working with them and do everything they can to get active again," Roper says. "They're most likely to engage in the activities that are meaningful to them and provide them enjoyment in life. It's truly amazing what the human spirit can overcome."
Unfortunately, many amputees are still living with unnecessary pain. A 2006 study published in the Archives of Physical Medicine and Rehabilitation found that 53 percent of all patients with phantom limb pain -- 38 percent of them with severe pain -- hadn't received any treatment at all.
Most phantom sensations, including pain, tend to become less vivid over time. Many patients say that it feels like the phantom limb gradually shrinks.
For Christian Bagge, the episodes have decreased in both intensity and frequency. Whereas they used to stop him in his tracks several times a day for 10 minutes at a time, now they come on mainly at night, and only a couple of times per week.
"I think I've just gotten used to it," says Bagge, who is now 24 and walks -- even runs -- on prosthetic legs. He still receives physical therapy at the Brooke Army Medical Center and takes mild pain relievers for his nighttime pain. "I have pain during the day, but it's manageable. When you're busy doing other things, you can forget it about it. But at night, when everything is quiet, that's when the pain dial gets turned up."
The day we spoke to Bagge was the day he had officially retired from the National Guard. He plans to go back to college, maybe even law school one day, and aims to return to his teenage (pre-military) vocation of playing drums in his brother's Christian rock band -- if, he says, he can get his prosthetic legs to keep the beat. For now, he and his wife are building a new house in San Antonio, and Bagge has been booked as a motivational speaker for several gigs around the country.
Asked why he thought his phantom pain had diminished, Bagge turns to his dreams. "My theory is that my brain has finally started to accept that my limbs are gone," says Bagge. "The military psychologist here -- you know, the one every guy who comes back from war has to go to -- says that when you start dreaming about your prosthetics is when your brain really accepts it."
"And now I've started to dream that I'm running, even flying, with these legs."
Mirror Therapy for Phantom Limb Pain. New England Journal of Medicine. Volume 357, Number 21. November 22, 2007. http://content.nejm.org/cgi/content/full/357/21/2206
Hanley, M.A. et al. Self-reported treatments for lower-limb phantom pain: descriptive findings. Archives of Physical Medicine and Rehabilitation. February 2006. 87(2): 270-277.
American Pain Foundation. Questions and answers: Phantom limb pain. February 2005. http://www.painfoundation.org/page.asp?file=QandA/Phantom.htm.
Cleveland Clinic Phantom Limb Pain. December 2004.
Harden et al. Biofeedback in the treatment of phantom limb pain: a time-series analysis. Applied Psychophysiology and Biofeedback. March 2005. 30(1): 83-93.
Interview with Christian Bagge, former Oregon National Guard member, Iraq war veteran, and amputee
Interview with James Roper, M.D., Chief of Physical Medicine and Rehabilitation at Birmingham Veterans Affairs Medical Center, Alabama.
Nikolajsen, L. and T.S. Jensen. Phantom limb pain. British Journal of Anaesthesia. 2001. 87(1): 107-116.
Rajbhandari, S.M. et al. Diabetic neuropathic pain in a leg amputed 44 years previously. Pain. 1999. 83: 627-629.