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.
Although phantom pain occurs most often in people who've had an arm or leg removed, the disorder may also occur after surgeries to remove other body parts, such as the breast, penis, eye or tongue.
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.
Most people who've had a limb removed report that it sometimes feels as if their amputated limb is still there. This painless phenomenon, known as phantom limb sensation, can also occur in people who were born without limbs. Phantom limb sensations may include feelings of coldness, warmth or itchiness or tingling — but should not be confused with phantom pain. Similarly, pain from the remaining stump of an amputated limb is not phantom pain. By definition, phantom pain feels as if it comes from a body part that no longer remains.
Characteristics of phantom pain include:
The exact cause of phantom pain is unclear, but it appears to originate in 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 also is 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.
It's still unknown why some people develop phantom pain after an amputation while others do not. Some factors that may increase your risk of phantom pain include:
Preparing for your appointment
Because phantom sensation and phantom pain are common after an amputation, it's likely your doctor will ask you about these symptoms during follow-up visits after your surgery. If you develop pain from the amputated limb before your doctor raises the issue, call your doctor. Depending on the severity of your symptoms and on your response to initial treatments, your doctor may refer you to a specialized pain center.
What you can do
For phantom pain, some basic questions to ask your doctor include:
What pain relief therapies do you recommend?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask any other questions that arise.
Tests and diagnosis
Although there's no medical test to diagnose phantom pain, doctors can identify the condition by collecting information about your symptoms and the circumstances (such as trauma or surgery) that 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 stump pain at the same time, treatments for these two problems may differ.
Treatments and drugs
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 or transcutaneous electrical nerve stimulation (TENS). More-invasive options include injections or implanted devices. Surgery is done only as a last resort.
Medications used in the treatment of phantom pain include:
Minimally invasive therapies
On the horizon
Lifestyle and home remedies
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:
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.
Coping and support
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. Or, 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 also can 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.
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 few hours or days leading up to amputation. This may reduce pain immediately following surgery and reduce the risk of lasting phantom limb pain.
Two drugs have shown promise in preventing phantom pain:
Last Updated: 2011-10-27
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