Phantom pain

It’s not known exactly what causes phantom pain, but it’s thought to be related to these factors:

• Nerve damage – damage to nerves when your body part is removed can irritate and overexcite the nerve endings causing the sensations of phantom pain.
• Sensitisation in your spinal cord – this involves increased nerve activity and sensitivity in your spinal cord related to nerve damage after amputation or injury.
• Brain remapping – this is when your brain redirects sensations from the part of your body that’s been removed to another area of your body, so you might feel pain in the missing body part when nerves are stimulated in the surrounding area.
• Psychological factors – depression, anxiety and stress can trigger or contribute to phantom pain.

Phantom pain usually begins within the first few days after amputation or having a body part removed. It can be described as shooting, stabbing, throbbing, twisting, itching or burning, or it may feel like electric shocks.

The pain can range from mild to severe and it might come and go, or it can be continuous. The length of time the pain lasts differs from person to person. It can last from seconds to minutes, to hours, and even days. 

Phantom limb pain often affects the part of the limb farthest from your body, such as the foot of an amputated leg. The pain may be triggered by pressure on the remaining part of your limb or by emotional stress. 

Although phantom pain occurs most often in people who've had an arm or leg removed, it can also occur after surgeries to remove other body parts, such as your breast, penis, eye or tongue.

Some things can make phantom pain worse, including.

• being too tired
• stress
• infection
• too much pressure on your amputated arm or leg
• an artificial limb that doesn't fit properly
• swelling
• poor circulation.

There are some things that may help lessen the symptoms or reduce the risk of phantom pain.

• Control pre-amputation pain – good pain management before amputation surgery may reduce the risk of phantom pain as high levels of pain before surgery are associated with phantom pain.
• Have pre-amputation counselling – having counselling before a planned amputation is associated with lower levels of phantom pain.
• Discuss different types of anaesthesia – talk to your doctor about types of anaesthesia that are associated with a lower risk of phantom pain.
• Manage depression – effective management of depression may help as depression after removal of a limb or body part is a major contributor to phantom pain.

There’s no single treatment that works for everyone. You may need to try different medicines or non-medicine options, or a combination of both, to find one that works for you. Some studies suggest that a team approach (including GPs, surgeons, anaesthetists, pain specialists, physiotherapists and occupational specialists) is most effective in treating this condition.

Medicines

Medicines that may be used to help relieve phantom pain include:

• non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen
• carbamazepine
• gabapentin
• amitriptyline
• nortriptyline
• opioids such as codeine or morphine
• corticosteroid or anaesthetic injections.

These medicines often need to be taken for a few weeks before you experience the best pain control. If your pain doesn’t improve with one option, your doctor may suggest changing to another medicine or combining more than one medicine. Read about pain relief medications.

Non-medicine options

Some people find complementary therapies such as acupuncture and transcutaneous electrical nerve stimulation (TENS) helpful. Acupuncture is thought to stimulate your nervous system and relieve pain while TENS uses a small, battery-operated device to deliver electrical impulses to the affected area of your body to block or reduce pain signals. Read more about non-medication treatments for pain.

Exercising and moving your other limb may help relieve phantom limb pain. Sometimes psychological treatments such as cognitive behavioural therapy (CBT) can be helpful too.

Another technique, known as mirror therapy, uses a mirror to create a reflection of your healthy limb onto the amputated side which tricks your brain. The image below shows how a mirror can be used to make it appear that the missing limb is still there.

Image credit: Golan Levin via Wikimedia Commons(external link)

There are things you can do to help ease phantom limb pain and the pain in your stump after amputation.

• Slowly tighten and release the muscle in your limb.
• Massage your limb to stimulate the muscle and increase your circulation.
• Keep your limb warm.
• Exercise your limb.
• Change your position. If you’ve lost a limb, try propping up the area on a pillow or cushion.
• If you have a prosthesis (an artificial limb), take it off for a few minutes.
• Practice relaxation techniques (meditation, guided imagery, breathing exercises) to help reduce stress and anxiety which can contribute to phantom pain.
• Imagining using the part of your limb that’s been amputated may help reduce the pain.
• Do things you enjoy and that can help distract you from the pain, such as hobbies, listening to music, watching TV.

You might also find it helpful to write down when you get the phantom pain and what you were doing when it happened. This can help you find things that trigger your pain. 

Contact your healthcare provider if your phantom pain:

• doesn’t get better with treatment
• gets worse
• is severe or stops you from doing your regular everyday activities.

The Amputees Federation of New Zealand(external link) provides information, initial guidance and ongoing support for amputees, their families and caregivers.