Managing Phantom Limb Pain
About 80 percent of amputees experience phantom limb pain, which is when an amputee experiences real pain sensations that seem to be located in the missing limb. Sometimes it is described as feeling like the limb is being forced into a cramped or uncomfortable position. As time goes by, the pain often diminishes in severity and frequency, but some amputees experience some phantom pain for the remainder of their lives. Many people find that phantom pain and sensations are reduced once they are fit with a prosthesis and begin wearing it regularly.
There was a time when doctors presumed phantom limb pain was a psychological problem related to post-amputation emotional stress. Although the cause is still not clear, many experts believe it is a response to mixed signals from the brain and may also be caused by damaged nerve endings.
One prevalent theory centers on the concept of brain reorganization. This theory looks at how the brain loses input from certain nerves following amputation. Later, the neurons are reactivated and respond to input from the remaining nerves. Pressure on the residual limb might trigger a response in the part of the brain that previously responded to nerves in the missing limb, triggering sensations that are felt as if they were in the missing limb.
Phantom limb pain may develop immediately after injury or may develop weeks, months or even years later, but it is most common for pain to onset in the first few days after amputation. It is commonly described as a stabbing, throbbing, burning, or crushing feeling.
Phantom pain is not the same as phantom sensations. Phantom sensations are when amputees feel like the missing limb is still there, feeling it’s too hot or too cold, or that there is an itch that needs to be scratched. Many amputees are able to mentally move the toes of the phantom foot to help some of the sensations to dissipate. Sensations can be irritating, but they are not painful and generally disappear over time. Phantom limb sensation is the feeling that the amputated limb is still present; most amputees experience this to some degree.
Pain in the Residual Limb
You may also experience actual pain in your residual limb. Residual limb pain may be caused by many factors including overuse or issues with the fit of the socket due to residual limb changes. If you experience pain in your residual limb, contact your prosthetist or physician.
Managing Phantom Pain
Phantom limb pain may be severe enough to interfere with rehabilitation and often needs medical intervention and pain management. If you are suffering from this type of pain, you can take some solace in knowing there are potential remedies. Speak with your doctor, prosthetist, physical therapist, occupational therapist, and other amputees to decide what treatment options might be helpful for you.
Treatment with Medication
Currently, there is no medication developed specifically for phantom limb pain, but there are drugs designed for other purposes that have been found to relieve it. Many amputees may utilize medication in the early stages of amputation and work with their doctor to develop a step down program to eventually eliminate use of these medications.
- Antidepressants interfere with the way pain signals are relayed and work well for relieving phantom limb pain for many amputees.
- Anticonvulsants are thought to work by calming damaged nerves so the pain signals are either slowed down or blocked.
- Prescription pain medication can be useful in cases where the pain is severe and, in the right dosage and monitored by a physician, they can control phantom pain.
- Studies have shown that NMDA receptor antagonists, a class of anesthetics, work to block pain signals from nerves and may relieve phantom limb pain.
- Natural supplements like juniper berry, grape seed extract, vitamin E, vitamin A, B12, potassium, calcium and magnesium are helpful for some amputees.
Discuss the side effects of any medications with your doctor so that you understand if it may negatively impact using a prosthesis, and consider other options for managing phantom pain, when possible.
Noninvasive Therapies for Pain Management
The following techniques relieve phantom pain for some amputees. Try a few and figure out what works best for you.
- Heat, cold and manual manipulation
- Wrap the residual limb in a warm, soft towel
- Wrap the residual limb with a heating pad
- Wrap the residual limb in a cold pack or applying a cooling cream or gel:
- Massage the residual limb with a textured material such as a towel
- Apply an elastic bandage
- Change position
- Soak in a warm bath
- Tighten the muscles in the residual limb and slowly release them
- Transcutaneous electrical nerve stimulation (TENS) involves attaching a device to the skin near your residual limb. It sends a weak electrical current designed to interrupt the pain signals before they can reach the brain.
- Acupuncture is thought to release endorphins that react with neurotransmitters in the brain to relieve pain. Acupuncture and dry needling can also help activate and relax the muscles of the residual limb.
- Mirror therapy is effective for many individuals with one amputation, and involves placing a mirror to reflect the image of the sound limb. Moving the foot or hand of the sound limb while looking at the reflection in the mirror makes your brain think it is moving both your sound limb and your phantom limb, helping to relieve uncomfortable feelings and pain from the amputated limb.
- Visualization works similarly to mirror therapy. Envision the limb and firing the muscles in that limb. Stretch fingers or toes and imagine the limb responding.
Other Pain Management Techniques
There are some minimally invasive procedures that may relieve your pain if none of the other methods have worked for you.
- An injection of an anesthetic or pain killer directly into the residual limb has been found to work for some amputees.
- Nerve blocks, a medication injected into the spinal column where the nerve originates, can help block the pain message.
- If nothing else helps, there may be surgical intervention options.
To help you most effectively manage any phantom pain you might experience, it is a good idea to keep a log of when the pain occurs and try to identify and eliminate any triggers you can identify. Stress, anxiety, fear and fatigue are common triggers, but a sudden change in weather or the onset of illness can also trigger phantom pain.
If one method doesn’t relieve your pain, do not give up. Keep experimenting until you find the particular technique that works for you.
Speak with a Peer
AMPOWER Peer Visitors can provide insight and encouragement, including talking through their process for managing phantom pain.