Figure: Lower limb amputee experiencing phantom pain
Typical phantom pain sensations: cramping / twisting, burning / tingling, stabbing, & shocking / shooting
Body of Post:
Virtually all amputees experience at least some sensations which seem to emanate from the amputated portion of a limb. These sensations may be intermittent or continuous and range in intensity from nearly nothing to excruciatingly painful. They are frequently described as itchy, warmth, unusual position, “pins & needles.” etc. An amputee may experience only one or many of these sensations simultaneously or at separate times.
Phantom limb pain occurs when the sensations which seem to come from the amputated portion of a limb are sufficiently intense for the amputee to consider them painful. Phantom pain has been reported from most organs including the breasts. The most common descriptions of phantom limb pain are cramping / twisting, burning / tingling, stabbing, & shocking / shooting
Just as with phantom sensations, an amputee may experience only one or many of these sensations simultaneously or at separate times. The pain may be intermittent or continuous and intensity generally varies tremendously over time.
Our surveys of many thousands of US veterans have proven that nearly all amputees experience phantom pain with about half finding it debilitating at times. Most of those want treatment but few tell their health care providers that they have the problem let alone request treatment for it. Those who find it debilitating tend to “self-medicate” to excess with alcohol, and other drugs.
And why won’t amputees tell their health care providers they have phantom pain and want treatment for it? Thousands of amputees anonymously told us that (a) they don’t want their health care providers to think they are nuts, (b) the “word” in the amputee community is that any time a health care provider is told about phantom pain, the provider’s trust in the patient goes to nearly zero – and many are referred to psychiatrists, (c) when treatment is provided, it is not only ineffective, but is frequently horrible (including major surgeries, etc.), and (d) they want to return to their pre-amputation activities so don’t want reports of phantom pain to interfere with prosthetic provision.
Why did amputees tell us about their pain but not their health care providers? Because our surveys were all anonymous! The literature shows that only about ½ of 1 percent of amputees voluntarily discuss phantom pain with their health care providers and only about five percent will admit to having it when directly asked by those providers.
As the actual incidence of phantom pain severe enough to interfere significantly with daily activities and normal life is over 30 percent, this disconnect creates a terrible problem.
There is a very sad cycle in the health care community in which each generation of health care providers discovers that phantom pain is a real problem, thinks they can treat it and then finds out they can’t. The vast majority of providers working with amputees today never knew about the hard lessons learned during past wars when it finally became apparent that phantom pain was a truly debilitating problem with few or no effective treatments.
The reality is that treatments for phantom pain are less than one percent effective when they are not based on known physical mechanisms. When treatments are based on known mechanisms, they are highly efficacious.
The physical mechanisms for the two most common descriptions of phantom limb pain are now known (burning / tingling and cramping / twisting) and efficacious interventions have been developed and tested. Phantom pain has also been shown NOT to be a psychological aberration.
The next two blogs will cover (a) mechanisms underlying phantom limb pain and (b) efficacious treatments.
Supporting publications:
Sherman R: Special review: Published treatments of phantom limb pain. Am. J. Physical Med. 59(5): 232 ‑ 244, 1980.
Sherman R, Sherman C: Prevalence and characteristics of chronic phantom limb pain among American veterans. Am. J. Phys. Med. 62:227 ‑238, 1983.
Sherman R, Sherman C, Parker L: Chronic phantom and stump pain among American veterans: Results of a survey. Pain 18:83 ‑ 95, 1984.
Sherman R, Sherman C: A comparison of phantom sensations among amputees whose amputations were of civilian and military origins. Pain 21:91 ‑ 97, 1985.
Sherman R, Arena J: Phantom Limb Pain: Mechanisms, incidence, and treatment. Critical Reviews in Physical and Rehabilitation Medicine 4: 1‑26, 1992.
Sherman R, Devor M, Jones C, Katz J, Marbach J: Phantom pain, New York, Plenum Press; 1996. (Book)
Sherman R: Pain Assessment and Intervention from a Psychophysiological Perspective. Association for Applied Psychophysiology, Wheat Ridge Colorado, 2012. (Book)