By Scott McNutt
The Who, What, and Why of the Phantom
Several studies show that between 50 and 80 percent of people with limb loss report experiencing some form of phantom limb sensation at least once, and many people say they have severe phantom limb pain that recurs regularly.
Phantom limb pain is a common problem for amputees, and if you experience it, don’t hesitate to speak up about it. Many people with limb loss are familiar with it, and your healthcare professionals need to know that you are experiencing it. Be assured, no one will think that you are crazy.
Additionally, learning about others’ experiences with it can allow you to see your phantom limb pain as less weird or scary, and you might pick up ideas for treatments you haven’t considered. Furthermore, your healthcare team must be informed of it to help you develop a systematic approach to address it.
Mary Ann Miknevich, MD, a physiatrist with the University of Pittsburgh Medical Center who works with patients with limb loss and moderates local amputee support groups, says her patients have reported numerous types of phantom limb pain, including, but not limited to
- Electric shock
Amputees also often experience other, non-painful feelings (although some can be irritating) in their missing limb, such as movement, pressure, or itching. Again, the incidence of these sensations ranges from rare to frequent. Miknevich notes that, among her patients, if phantom sensation does not present shortly after amputation, it usually doesn’t occur later.
Why phantom limb pain occurs and exactly how it does so are still unclear, although Miknevich says recent studies point to a couple of new theories. One is that neuromas—small, painful bulbs that sometimes form on damaged nerve endings—may generate sporadic nerve activity that the brain interprets as coming from the missing limb.
“The more important theory,” the doctor says, “is that it is believed that a reorganization occurs (after amputation) in the cortex of the brain so that nerves that once communicated with the amputated limb now make new connections to muscles or other fibers in the stump.”
She adds that following peripheral nerve injury, such as occurs with amputation, the mechanism that inhibits pain signals in the spine may fail, allowing the nerves to go haywire, which could be a factor in phantom pain.
The upshot of these theories may be that phantom limb pain springs from more than one source, which could explain why healthcare professionals pursue so many different methods of treating it.
Striking Back at the Phantom
The list of potential medical treatments for phantom limb pain is lengthy, spanning noninvasive methods to deeply invasive ones. These include
- Brain stimulation
- Nerve blocks
- NMDA (N-methyl-D-aspartate) receptor antagonists
- Painkiller injections
- Neurectomy (surgery to sever nerves)
- Spinal cord stimulation
- Residual limb revision
- TENS (transcutaneous electrical nerve stimulation) therapy
- Virtual reality therapy
Your physician can explain each of these treatments and outline their potential benefits, risks, pitfalls, and side effects. However, Miknevich points out two important caveats to consider before you search out treatments for phantom limb pain. First, you and your physician must determine that what you are experiencing is phantom limb pain, because psychological factors may be in play that mimic its presentation.
“One of the toughest things is to separate the emotional part of what is going on from the physical pain,” Miknevich explains. “When you are under stress or tension, all types of pain seems to be worse. If you’re already in pain, then your tolerance for anything is less; it’s like being tortured on a continual basis.”
Therefore, a discussion with your healthcare professional about all your symptoms and other potential contributors to your condition is imperative before seeking remedies for your pain.
Second, Miknevich cautions that patients for whom phantom limb pain has been nonexistent or minimal should be aware that, if it suddenly occurs or worsens, a physiological cause might be the culprit. Some of her patients have had abnormal pressure on their residual limbs, which presented as phantom limb pain, because of poorly fitting or misaligned prosthetic sockets. Others have had additional circulatory blockage causing ischemic pain, which increased the severity of their phantom limb pain.
“I recently had a patient who suddenly developed phantom limb pain, and he had developed a very large neuroma in his residual limb,” she says. “It’s important if you notice a change in your phantom pain to alert your physician and your limb maker.”
A number of psychological and alternative therapies are options to medical interventions:
- Guided imagery therapy helps amputees focus on soothing mental images to alleviate their phantom limb pain, and other relaxation techniques, such as controlled breathing, offer similar approaches.
- Hypnosis may soothe some people’s pain, and distraction therapy may take their mind off it.
- Biofeedback teaches patients to control bodily processes that are normally involuntary, which may help them suppress phantom limb sensations.
- Acupuncture, which stimulates pressure points on the body with needles, has been successfully used by some amputees for relief.
- Mirror-box therapy, which shows patients a mirror image of their sound limb so they can practice “controlling” their missing limb, has also benefited some.
There are still other avenues to explore before pursuing medical treatment, including lifestyle remedies. These methods do not require a medical professional’s involvement. They include keeping a journal of phantom pain occurrences. This can help amputees identify triggers for the pain and avoid them in the future. For some, simply rubbing, massaging, or applying a shrinker to the residual limb reduces the sensation. For others, a full-body massage helps. Cold packs, heating pads, exercise, diet, and lifestyle changes (such as quitting smoking or drinking) may also reduce the frequency or intensity of the pain. Some people use more unexpected measures: Miknevich recalls a patient in one of her support groups who talked to his pain.
“He would say, ‘Go away! You are not there!’ and that works for him,” she says.
Beware the Phantom’s Fellow Fiends
As noted in the earlier example conversation, some phantom limb pain sufferers try herbal supplements. Miknevich counsels that people with limb loss should consult with their physicians before taking any dietary supplements to ensure that the products don’t interfere with or have adverse interactions with prescribed medications they are taking.
Clearly, there are almost as many ways to attempt solving phantom limb pain as there are people suffering from it. However, while herbal supplements may not be hazardous to your health (as long as you consult with your physician about their use), other dangers lurk on the fringes of acceptable medical treatments.
“There are unscrupulous people out there who are looking to take advantage of people and make money on them,” Miknevich says.
She warns about promises of miracle cures for phantom limb pain. Consider that if your agony makes you desperate for relief, that desperation can make you easy prey for con artists.
Ultimately, there exists no cookie-cutter cure for phantom limb pain. It may take a combination of treatments and strategies to achieve some measure of relief. So, the best course of action is to discuss methods of addressing your phantom limb pain with others who also grapple with the condition and to consult with your physician to devise a comprehensive approach to cope with it.