Phantom limb pain after amputation: causes, treatment and coping

After an arm, leg or other body part is amputated, the brain can continue to behave as if it is still there. The NHS defines phantom limb sensations as sensations that seem to be coming from the amputated limb. Occasionally these are painful, and that is phantom limb pain.

A hospital patient information leaflet makes a useful distinction. Phantom sensation is experienced by nearly all amputees: the feeling that the limb is still there, sometimes only parts of it, with itching, aching or pressure. These sensations are generally not painful. Phantom pain is when the missing limb feels shortened or in an awkward position, or hurts with a burning, aching, itching, cramping, sharp, stabbing or shooting quality.

Phantom limb pain is also separate from stump pain, which comes from the remaining part of the limb. The NHS says stump pain can have many causes, including rubbing or sores where the stump touches a prosthetic limb, nerve damage during surgery and the development of neuromas, which are thickened nerve tissue.

The causes are not fully understood. The leaflet describes three main theories. The peripheral theory says nerve endings around the stump form clusters called neuromas that generate abnormal electrical impulses which the brain interprets as pain. The spinal theory proposes that the lack of sensory input from the amputated limb causes chemical changes in the central nervous system and confusion in regions of the brain. The central theory says the brain keeps a memory of the amputated limb and its link to nerve signals, and the symptoms arise when it tries to recreate that memory but gets no feedback.

The NHS notes that the central idea is linked to why mental imagery and mirror techniques may help: researchers think the brain looks to receive feedback from the amputated limb and these exercises may provide a substitute for the missing feedback.

Triggers differ between people. The leaflet lists stressful emotions, thinking about the amputation or seeing others in pain, physical triggers such as movement of the stump, and changes in temperature.

Descriptions vary widely. The sources mention a range of sensations that people experience, which can come and go.

• Burning, aching, cramping or itching in the missing limb.

• Sharp, stabbing or shooting pain, or brief flashes like an electric shock.

• The limb feeling shortened, twisted or in an awkward position.

• Constant severe pain in some people.

• Pain that flares with stress, temperature change or movement of the stump.

The leaflet advises telling your doctor or healthcare professional if you have any phantom pain, so that they can refer you for treatment if needed. It is also worth telling the team if the pain is affecting sleep, mood or your ability to use a prosthesis, because the type and amount of pain can guide what is prescribed.

Phantom pain can feel very real, and the leaflet notes it can at times be debilitating, leading to anxiety, depression and difficulty adapting. If you are low or anxious, mention it to your GP or care team. The NHS lists slow wound healing and wound infection among the complications of amputation, so new redness, swelling, discharge or fever in the stump is a different problem from phantom pain and should be assessed promptly.

The NHS says phantom limb pain will usually improve over time and that treatments are available. No single treatment suits everyone, as the leaflet points out, and a team will usually try an approach, review it and adjust. Keeping a daily log of when pain occurs and what seems to trigger or relieve it can help the team see patterns.

The leaflet suggests gentle touching of the residual limb or the same area on the remaining limb for phantom sensations, distraction techniques, and attention to stress, smoking, diet and exercise. Many people find that a regular routine of desensitisation, such as tapping and rubbing the end of the residual limb, prepares the stump for a prosthesis.

One practical warning from the leaflet is worth repeating. Because phantom sensations feel real, it is easy to think the limb is still there and try to stand on it, so take care when standing or transferring because of the risk of a fall.

The NHS stresses the psychological side. Many people who have had an amputation report grief and bereavement, similar to the death of a loved one, and it says that coming to terms with the psychological impact is often as important as coping with the physical demands. Talking therapies and peer support, including support organisations such as the Limbless Association which the leaflet lists, can help.

The NHS says stump and phantom limb pain will usually improve over time. It is not possible to say how long that will take for any one person, and for some people the pain is a longer-lasting problem. If it persists, tell your care team: treatments can be reviewed and changed, and the leaflet notes that everyone’s pain experience is different.

If neuromas are thought to be causing pain, the NHS says further surgery may be needed to remove the affected cluster of nerves, which is considered only when other approaches have not worked.

After an amputation the NHS provides rehabilitation, which it describes as an important part of recovery, and compression garments are fitted once the wound has healed. Pain that continues can be raised with your GP or the team looking after your prosthesis, who can review medicines and refer you on.

Some people choose to see a private pain specialist or physiotherapist as well. The sensible approach is to keep one team in the lead, so that medicines and treatments are coordinated, and to tell every clinician what you have already tried.