Once, on the old “Dick Van Dyke Show,” Van Dyke said sympathetically, “Aw, Stace-I know how you feel!” His brother wailed in angry frustration, “Nobody knows how I feel!” Pain is an intensely personal issue, as anyone who has ever felt great pain can agree.
Although widely regarded as the universal complaint of the misunderstood, in the case of amputees suffering chronic pain, such a cry is heartfelt, authentic, and frequent.
In a 2005 study of 914 persons with limb loss, performed for the Bloomberg School of Public Health at Johns Hopkins University*, the authors found that 95 percent of surveyed amputees reported experiencing one or more types of amputation-related pain in the previous four weeks. Phantom pain was reported most often (79.9 percent); 67.7 percent reported residual limb pain and 62.3 percent back pain. A large proportion of persons with phantom pain and residual limb pain reported experiencing severe pain (rating 7-10).
Outside of the survey setting, attempts to communicate and describe such pain seem woefully inadequate, and short of getting inside the amputee’s skin, it’s impossible to fully understand the nature, extent, and severity of the chronic pain he or she may experience.
How then, when even identifying, defining, and characterizing the different types and degrees of pain is difficult, can we arrive at solutions for addressing and alleviating such pain?
Is Chronic Pain in the Head Rather than the Tissues?
In a presentation at the American Academy of Orthotists and Prosthetists (the Academy) annual meeting in March 2008, Harry W. Layton, CPO, LPO, cited a 1998 article** about patients who went to the doctor with a variety of symptoms-but not pain-and were later diagnosed with cancer. These patients all began to report pain almost immediately following the diagnosis, even though their sensory input couldn’t have changed. The knowledge that they had a potentially terminal disease raised their arousal level and changed their interpretation of the same sensory information.
As Layton explains, it is our brain that decides whether to give us pain, in amounts that are often unrelated to the severity of the injury. “Pain is relative and unique to each individual’s experience,” Layton says. “Chronic pain usually isn’t about the tissue. Pain can persist after tissues have had plenty of time to heal. Instead, the brain is receiving a faulty message.. .and is therefore creating pain.”
“If you don’t have a head, you can’t feel pain,” points out Clay Kelly, MD, chief of service for physical medicine and rehabilitation at the Louis Stokes-Cleveland Veterans’ Affairs Medical Center. “Heightened awareness and expectation of pain sometimes can cause a patient to feel or experience more pain. But the most critical factor in treating pain is trying to find out exactly what is causing pain; without a cause, there’s no effective treatment. And that can sometimes be very difficult.”
Jo Baroli, PT, agrees. “There are physiological symptoms with any trauma. I don’t agree with the idea that ‘Oh, it’s just in your head.’ Yes, pain is in the brain because that’s where the messages are perceived. It’s not imaginary. But perception of those symptoms varies widely in terms of how the messages are to be interpreted and coped with. Hopefully we can affect the physiological as well as the psychological. I think that if you just attempt to address one and not the other, you’re going to come up short.”
Sandy Fletchall, FAOTA, OTR/L, CHT, MPA, who specializes in working with traumatic amputees at Capabilities for Living in Lakeland, Tennessee, observes that theories of pain management continue to evolve so quickly it’s hard to keep up.
She provides patients with an explanation of pain tailored to today’s computer-savvy population. “I tell them they’re just getting too much information to their hard drive, and instead of shutting down, it’s actually frayed a CD, and we’re going to have to burn a new one.”
Whether it begins in the head or not, the body’s sympathetic response to pain will create changes if not handled well, Fletchall warns. “Muscles become atrophied, joints become fibrotic, calcium accumulates in the bones, and blood flow decreases.
“When you are in a sympathetic response 24-7, you do have tissue changes.”
But since pain is such an individual experience, even when things are handled well, there are some individuals who, “for reasons we can’t figure out,” says Fletchall, “we can’t quite get to the switch to turn off their sympathetic system. It’s an individual response that can vary widely.”
Ann Kobiela Ketz, MN, RN, AOCNS, CPT, AN, USA, serving in the 212th Combat Support Hospital and Landstuhl Regional Medical Center, Germany, also reports on the individual aspect of pain in her recent short survey of 30 service members at Brooke Army Medical Center (BAMC), San Antonio, Texas.
“What I found was very similar to other studies: pain, and the efficacy of treatment for pain, is different for everyone. Every single patient needs to be looked at individually by their doctor or prosthetist in order to find the right mix of treatments.” Although this uniquely individual perception of pain can make diagnosis and treatment more difficult, there should be a sense of urgency accompanying such attempts, says Kevin Carroll, MS, CP, FAAOP.
“This is not imaginary. Something neurological is creating this awful severe pain-something underlying is going on, and we can’t afford to miss it. It’s serious; it leads to depression and in some cases, even suicide.”
The Johns Hopkins study supports this link between pain and depression and urges further studies of the relationship: “Across all pain types, depressive symptoms were found to be a significant predictor of the level of pain intensity and bothersomeness.”
Stephen Brown, MD, a physical medicine and rehabilitation (PM&R) physician and transtibial amputee, also stresses the importance of early and aggressive attention to pain complaints in the amputee.
“It’s best to catch it early-nip it in the bud before it continues to smolder and set up. Once it turns into chronic pain syndrome, then you’re in a whole different ball park. The patient has been on a variety of different narcotics, and the brain chemistry gets messed up. It’s really hard to break the chronic pain syndrome once they get into that mode, with a lot of other psychosocial issues going on. That’s why I usually refer them to a specialist in pain-an anesthesiologist, for example.” The same rule applies to phantom pain, Brown explains.
“Phantom pain is an old term for residual nerve pain. Phantom pain or neuropathic pain can have a lot of manifestations. The doctor who amputated my leg was a colonel in the Air Force in Vietnam; he would tell people just make sure your fit’s right, do cutaneous sensation therapy, and try not to feed into it because the more you feed into it, the more of an issue pain may become. Get it checked before it becomes an acute or chronic issue.”
Can Pain Be Quantified?
How can one assess, measure, and compare pain when everyone experiences it in ways too different to describe-with standards that vary with each person’s different threshold of pain?
Fletchall works with clients on clear definitions of their pain. “They need to find a way to tell me exactly what they’re feeling-not just ‘pain,’ but a specific sensation we can identify and deal with-stabbing, throbbing, burning, electrical tingling.”
Some pain management physicians provide a list of 25 to 50 adjectives that patients can select; based on their choices, trauma specialists can better understand and identify muscle cramps, neuromas, permanently compromised nerves, edema with neuroma, and respond accordingly.
Kelly agrees that pain is very personal. “Although some people can tolerate more pain than others, it’s really impossible to know how much pain a person is in. We rely completely on their account and treat them accordingly because there’s no objective way to biopsy that pain.”
“What makes it extra tough for the clinician,” Brown adds, “is that there are no real studies to confirm it. You can do X-rays, lab tests-there’s nothing clinically that’s going to show. That’s where the art of medicine comes in-identifying what’s real and what’s not. And that gets harder to distinguish the more chronic it becomes.”
What’s the answer? “Probably better education and getting amputees referred to people who deal with amputees,” Brown says.
Whose Job Is It?
Management of the amputee’s pain is increasingly evolving into his or her own responsibility and Baroli regards that as poignant. “Patients have to be their own best advocate for their own management and lifestyle-and maintain that responsibility for their lifetime.”
Pam Forducey, PhD, ABPP, stresses the importance of support groups in helping patients cope with limb loss and pain at all different phases of rehabilitation recovery, which spans one’s entire life. “Historically, we have considered rehabilitation as a medical model, but now, with a consumer-driven model of healthcare, the consumer is the advocate for himself across the continuum of care from the hospital to the home setting.
“I think the key is getting the consumer early into rehabilitation, and unfortunately, the reality is that if there’s not insurance, rehab is very limited. Lengths of stay have declined significantly over the last ten years and because of that it’s paramount that the patient be proactive and highly engaged.” In addition to amputee support or pain management groups, she notes, “The Internet offers many resources in the form of chat rooms and sites where patients can learn and become more sophisticated and educated about what their options are.”
Brown also finds that ultimate responsibility for their comfort often rests with the amputees themselves. His own experience with neuropathic pain resulted from his desire to wear a brand new prosthesis while accompanying his son to Boy Scout camp, where Brown served as a scout leader.
“Since I left my backup leg at home, all I had was the new one, and I had to pound around on it all day. It’s one thing to have soft tissue pain, and it’s another thing to get the nerves irritated. Because I didn’t want to stop, I paid the price. My problem was overuse on a brand new leg; all the kinks hadn’t been worked out as far as fitting right.
“I educate my patients by telling them that ‘you’re your best prosthetist.’ They’ve got to know what to do with their leg when they’re out in the sticks or on a trip with their family and they have problems with their limb. Because if it’s not working right and they’re pounding around on it, I don’t care how many painkillers they’re taking-it’s still irritating the nerves, and they’re going to pay for it.”
Approaches to Pain Management
“If you have a seasoned psychologist who understands trauma, psychological approaches are very effective,” Carroll believes. “We can easily say, ‘Well, you’ll just have to get used to living with it,’ but that’s where a psychologist can help them. We’re living in an age where we should be able to manage pain.”
One such psychological approach is to help amputee patients redefine their role.
Forducey notes that from a psychological perspective, the better patients can define their meaning, their purpose, and their role in life, the better equipped they are to cope with pain.
“My goal with amputees in therapy is to help them to redefine their sense of self-their self-efficacy. So often we define our self-worth based upon our work-or, for some folks, their family. [What] if, all of a sudden, that’s removed from them?
“Look at the behavioral definition of punishment: the onset of negative adverse reactions and the removal of positive reinforcers. Amputees are feeling in some way a sense of punishment and self-deprecation: ‘What did I do? What’s wrong with me?’ Helping them define their new sense of self is instrumental in their psychosocial recovery as well as for their attitude and their motivation in therapy. Without purpose and meaning, none of us has a reason to get up in the morning.”
Fletchall agrees and believes in the power of distracting activity. “I’m a big believer in getting them moving-returning them to activities they used to perform successfully. Getting the whole body in motion creates endorphins, assists with blood pressure, enhances medication distribution that we metabolize, and it helps with situational depression.”
Ketz says that some of the more than 700 amputee warriors from Afghanistan and Iraq find relief through activity. “They’re young, otherwise healthy, motivated, and fit, and they cope with the pain rather well within the immediate six months to a year afterward. They’re very active and they tend to be in the gym or running on the treadmill, and they also have very good access to care. They seem to deal with it with more activity and exercise
and distraction techniques. A lot of them said that if they were having pain, they would just change what they were doing-for example, get up and move instead of sitting on the couch, where someone older and less healthy might be more prone to want to take medication.”
Progressive prosthetic technology also provides an incentive and a distraction for some. Baroli stresses that the technology and the rehabilitation program must be meaningful to the patient. To illustrate his point, he describes a 25-year-old patient severely injured by a speeding car four years ago.
“He enjoys basketball and loves boxing. He is eagerly looking forward to receiving a C-Leg* and walking on his own again,” Baroi says.
Ketz also mentions military medicine studies still in progress on phantom pain in wounded warrior amputees. “These guys get very quick care, and their acute pain from their injury is managed very well. The anesthesia folks are doing a lot of studies with nerve blocks and different types of medication pre-operatively, interoperatively, and postoperatively to see if that will have an effect on the development of phantom pain down the road, as well as residual pain. They’re trying a lot of things to help prevent phantom and residual limb pain.”
Early pressure following the amputation is something Fletchall advocates strongly. “Although I didn’t keep records at the time-and now wish I had-there was a major difference between the amputees who had immediate pressure application following their amputation versus those who came to me two weeks after the amputation with massive edema and no pressure.”
The early pressure should be continued for perhaps a year or more, she cautions. “Scar tissue requires from 12 to 18 months to reach maturity. Internal scar tissues from an amputation will continue to change during that period. Applying pressure to the area helps the maturity achieve its rate faster by minimizing the bloodflow to the area.”
Carroll also recognizes the virtues of early compression therapy on the residual limb. “If you hit your finger with a hammer, what do you do? You grab and hold your finger! It feels much better instantly. It still hurts, but it takes away that throbbing sensation. I will sometimes put a vacuum type socket on there-the vacuum keeps nice compression on the limb. Even beyond the acute stage, if later on the person continues to have a painful limb, we will try some pressure with a therapeutic socket that is under compression; that also has been found to reduce some of those painful sensations that the person experiences.”
Judith Philipps Otto is a freelance writer who has assisted with marketing and public relations for various clients in the O&P profession. She has been a newspaper writer and editor and has won national and international awards as a broadcast writer-producer.
Heath Calhoun-Perspective on Pain