Medical scientists have some, but not all, of the answers about phantom limb pain. It is a diagnosis of exclusion, meaning it is diagnosed after all other possibilities are ruled out, such as infection, skin breakdown, nerve injury, poor circulation, bone abnormality, or improper prosthetic fit. Someone experiencing this phenomenon will undoubtedly have questions they need answered. Here is the truth about phantom limb pain after amputation.

What is phantom limb pain?
To have “phantom limb pain” is to feel pain localized to a removed body part, as though the part is still there. This isn’t to be confused with “phantom sensation,” which is a pain-free feeling such as the limb moving or having an itch, common among all amputees.

Phantom limb pain can range from tingling or pins and needles to a terrible crushing, twisting, burning, or shooting pain. Between 60-80% of amputees experience it.

Is it just psychological?
No, it is physiological. Phantom limb pain may be “in your head” literally, but not proverbially. There are several theories about its causes, many involving the nerve endings at the site of the amputation, and neurons in the brain and spinal cord. Research is still ongoing.

It often does cause psychological distress, including anxiety and depression from a lower quality of life.

Why do some amputees get phantom limb pain, and others don’t?
One theory suggests that if the limb had long-term pain before the amputation, it is more likely to result in phantom limb pain after. Other theories look at demographics like age and gender. Doctors don’t have the answer yet, except to say that the brain and nerves behave unpredictably after something as traumatic as an amputation.
Will it last forever?

Usually, it does not last. For many people, it begins immediately after amputation and the severe pain is resolved after the first 4-6 months. However, some amputees do experience a slower onset and/or a longer struggle.

What is the treatment for phantom limb pain?
Treatment will depend on how much pain you experience. For some people, over-the-counter pain relievers are enough, or perhaps prescription drugs like muscle relaxers, beta blockers, or antidepressants. Medications will not remove all pain, but should allow you to do more during the day and sleep better at night. Other patients see improvement from treatments involving the residual limb — physical therapy, acupuncture, massage, good stump management, and proper prosthetic care. There also are some nervous system treatments and mobile apps that could help retrain the brain, to stop the mixed signals.

Having a prosthesis that is properly fit and maintained, and preventing skin irritation on the residual limb are good steps in the right direction.

If you are experiencing phantom limb pain after amputation, talk to your doctor, prosthetist, or physical therapist about your unique experience. They will develop a treatment plan to help you overcome this hurdle.