Phantom pain is pain that feels like it's coming from a body part that's no longer there. Doctors once believed this post-amputation phenomenon was a psychological problem, but experts now recognize that these real sensations originate in the spinal cord and brain.
Most people who've had a limb removed report that it sometimes feels as if the amputated limb is still there. This painless phenomenon, known as phantom limb sensation, isn't the same as phantom pain.
For some people, phantom pain gets better over time without treatment. For others, managing phantom pain can be challenging. You and your doctor can work together to treat phantom pain effectively with medication or other therapies.
Characteristics of phantom pain include:
- Onset within the first week after amputation, though it can be delayed by months or longer
- Pain that comes and goes or is continuous
- Symptoms affecting the part of the limb farthest from the body, such as the foot of an amputated leg
- Pain that may be described as shooting, stabbing, cramping, pins and needles, crushing, throbbing, or burning
The exact cause of phantom pain is unclear, but it appears to come from the spinal cord and brain. During imaging scans — such as magnetic resonance imaging (MRI) or positron emission tomography (PET) — portions of the brain that had been neurologically connected to the nerves of the amputated limb show activity when the person feels phantom pain.
Many experts believe phantom pain may be at least partially explained as a response to mixed signals from the brain. After an amputation, areas of the spinal cord and brain lose input from the missing limb and adjust to this detachment in unpredictable ways. The result can trigger the body's most basic message that something is not right: pain.
Studies also show that after an amputation the brain may remap that part of the body's sensory circuitry to another part of the body. In other words, because the amputated area is no longer able to receive sensory information, the information is referred elsewhere — from a missing hand to a still-present cheek, for example.
So when the cheek is touched, it's as though the missing hand is also being touched. Because this is yet another version of tangled sensory wires, the result can be pain.
A number of other factors are believed to contribute to phantom pain, including damaged nerve endings, scar tissue at the site of the amputation and the physical memory of pre-amputation pain in the affected area.
Not everyone who has an amputation develops phantom pain. Some factors that may increase your risk of phantom pain include:
- Pain before amputation. Some researchers have found that people who had pain in a limb before amputation are likely to have it afterward. This may be because the brain holds on to the memory of the pain and keeps sending pain signals, even after the limb is removed.
- Residual limb pain. People who have persistent pain in the remaining part of the limb usually have phantom pain, too. Residual limb pain can be caused by an abnormal growth on damaged nerve endings (neuroma) that often results in painful nerve activity.
Because the risk of developing phantom pain is higher for people who have experienced pain in the limb before amputation, some doctors recommend regional anesthesia (spinal or epidural) in the hours or days leading up to amputation. This may reduce pain immediately following surgery and reduce the risk of lasting phantom limb pain.
Although there's no medical test to diagnose phantom pain, doctors identify the condition based on your symptoms and the circumstances, such as trauma or surgery, which occurred before the pain started.
Describing your pain precisely can help your doctor pinpoint your problem. Even though it's common to have phantom pain and residual limb pain at the same time, treatments for these two problems may differ — so an accurate diagnosis is important.
Finding a treatment to relieve your phantom pain can be difficult. Doctors usually begin with medications and then may add noninvasive therapies, such as acupuncture.
More-invasive options include injections or implanted devices. Surgery is done only as a last resort.
You may not have control over whether you develop phantom pain after surgery, but you can reduce your discomfort and improve your quality of life. One or more of these approaches may help you get through a flare-up of phantom pain:
- Look for distractions. Find activities that take your focus off the pain, such as reading or listening to music.
- Stay physically active. Get your exercise by doing activities that you enjoy, such as gardening, walking, swimming or cycling.
- Take your medications. Follow your doctor's directions in taking prescribed and over-the-counter pain medications. If you try herbal and other alternative medications, be sure to tell your doctor.
- Find ways to relax. Practice activities that reduce your emotional and muscular tension. Take a warm bath — not too hot, as heat may aggravate the pain. Lie down and follow helpful relaxation techniques, such as rhythmic breathing, meditation or visualization.
- Seek support from other people. Find ways to get closer to others. Call friends, or join a support group or a group involved in your favorite hobby.
Remember that managing phantom pain can make a big difference in how you feel. If one approach doesn't provide relief, try something else rather than give up.
Learning to live without a limb, especially if you have phantom pain, can be challenging. Depression often accompanies pain. You may find it helpful to talk to a counselor or therapist.
An in-person or online support group can put you in touch with others who know what you're going through. To find support, ask your doctor for a referral, either to a counselor or to a support group.
You can also contact the Amputee Coalition at www.amputee-coalition.org for information on its National Peer Network, which can put you in touch with a variety of support services, including its Peer Visitor Program. This program can connect you with someone who's been in your place and can talk to you about healing, share his or her experiences, and offer advice.