Phantom Pain

 

What is phantom pain? What does it feel like? How long will it last?

Phantom pain is the term used to describe sensations felt by amputees, which may include tingling, itching, twisting, cramping, pins-and-needles, stabbing pains, pressure, a sense of fullness (as if the limb was still there, but slightly swollen), and so on. The ghost-limb sensations can be similar to what a non-amputee feels when his/her foot has “fallen asleep” to the point of being numb, then sensation comes back painfully. The majority of amputees experience these sensations to some degree.

Often the feeling is very localized. An amputee may describe the sensation as being in a specific location, such as ‘on the bottom of the big toe’ or ‘on the right side of the shin, right below the knee, going down in a straight line.’ If they were to point at where the sensation was felt, the phantom limb may be shorter in comparison to where the real limb would be. Amputees may feel as though they can ‘wiggle their toes’ or ‘count on their fingers.’

The phantom sensations are intermittent (they come and go, unpredictably.) New amputees tend to have frequent and intense sensations several times every day, often continuously for a few hours at a time. As the years pass after an amputation, the sensations will generally become less frequent, and less intense, and bouts of pain last for a shorter amount of time. However, despite medical literature that says “both the phantom sensations and pain gradually resolve with time,” many amputees report that the phantom pain never completely disappears.

I will use my own experience to illustrate some of the points of this article: My right leg was amputated above the knee in 1982 because of bone cancer (I was a teenager). I still have phantom sensation. Most days, I have no sensations (except anytime I talk about it, or write about it, my leg tingles all over, in a not-quite painful way.) I have mild pain for a few minutes a week at random intervals. About once every three or four months, I have pain that is bad enough to disrupt my sleep, or make it hard for me to focus on a task.

 

What causes phantom sensations?

The exact cause is not known. There are different theories. One touches on brain re-organization: After an amputation, the brain loses input from the missing nerves. However, the neurons later become active again, responding to input from the nerves that remain. Thus, pressure on the stump might trigger a response in the part of the brain that used to respond to nerves in the missing limb, thus sensations are felt as if they were in the missing limb. Researchers have also shown that if those parts of the brain are stimulated with electrodes, the amputee feels sensation in their missing limb. (Article about this study. Abstract) Also, if body parts next to the amputated part are touched, phantom sensation may be felt. (The “hard-wired brain” theory.)

One abstract notes: “burning phantom pain is probably related to decreased blood flow in the residual limb [stump], while cramping phantom pain is mainly related to spikelike muscle spasms in the major muscles of the residual limb. Little support is provided for psychological causes, but the expression of phantom pain does appear to be influences by psychological mechanisms.” In other words, it is not all in your head, but our thoughts and emotions do influence the sensations.

The manufacturer of Farabloc claims that phantom pain is caused by external electrical and magnetic fields irritating the severed nerve endings of the stump.

Overview of theories of phantom pain, and pain pathways in general is here.

 

When does phantom pain flare up? What causes a bout of pain?

·     Stimulation of / pressure on the stump.

o       Prosthetic pressure. Sometimes a prosthesis (artificial limb) will put pressure on nerves in the stump, which will then cause phantom limb sensations. (Note, pressure can also cause seemingly unrelated symptoms, like nausea. These symptoms often can be better understood by consulting an acupuncturist about what acupressure points and meridians are in that area of the body. The acupuncturist may be able to recommend changes in the fit of the prosthesis to avoid these symptoms.)

o       Pressure on other parts of the body or the head may trigger phantom sensations. (Again, explore acupressure points)

·     Back pain.

o       I notice that if I sit for a long time with really bad posture on soft and squishy chairs, where my weight is on my tailbone, then I’ll have a lot of intense phantom pain over the next day or two. Massage on and around my sacrum helps a lot! So does putting a heating pad on my sacrum (that’s the large bony area at the base of the spine (not the tailbone, but just above there.)  It’s possible that chiropractic work could help as well.

·     Illness. I especially notice that pain flares with a fever. If I have a fever of over 101 degrees, I have raging phantom pain. I normally wouldn’t treat a fever, since I figure it’s the body’s immune system at work. But, when the pain gets bad enough, I’ll take an ibuprofen to drop the fever, then the pain is better. (Note that ibuprofen isn’t usually helpful for relieving phantom pain… here its effectiveness is that it relieves the fever, and that relieves the pain)

·     Change in the weather, especially decreased atmospheric pressure.

·     Magnetic fields. One study noted that phantom pain flared up in the presence of magnetic fields. 

·     Stress. Inactivity.

·     Anemia?? Sometimes I have more phantom pain just after my menstrual period. (Though not always.) I have wondered if it is hormonal, but haven’t found any references to that affect. I also thought it might be that I was mildly anemic. There are a couple of studies that did show some connection between iron count in your blood and phantom pain. Since decreased blood flow to the stump can cause phantom sensations, it seems logical that decreased oxygen in the blood could aggravate sensation.

·     One article referred to an increase of pain with urination, defecation, or sexual intercourse. I have not experienced this.

 

Can phantom pain be prevented or minimized?

I assume most people reading this site already have amputations and already experience phantom pain. However, just for reference, I will note that there are a few things being done to try to prevent pain: one is preoperative blocks (i.e. having pain medication for 72 hours before the amputation). Another is the Ertl procedure, a surgical procedure which may help reduce stump pain, phantom pain, and lead to easier prosthetic use.

 

What does mainstream medicine offer to treat phantom pain?

Over-the-counter pain relievers do little to affect phantom sensations. Some more heavy duty medications may help with it (e.g. opioids like morphine) but these carry a large variety of side effects. I, personally, would not choose to begin to use a medication with dependency issues or significant side effects. Knowing that this will be a chronic pain that lessens over time motivates me to find non-drug ways to treat it.

For reference, medications to treat phantom pain are listed here. They also mention nerve blocks, and spinal cord stimulation. Other medication info here. Another site mentions that “continuous electrical stimulation through electrodes surgically implanted into the thalamus [an area in the brain] has been found to provide relief of this pain in some patients.” A 1980 report evaluated 50 different treatments for phantom limb pain, including surgical interventions, medications, physical therapy, and psychological treatments. None were very effective in the long-term.

Drinking alcohol does have some effect on phantom pain. But a little alcohol doesn’t seem to make a difference to me… once, long ago, I got _really_ drunk, and that was enough to dull out the sensations. Clearly, self-treating recurrent phantom pain with these large amounts of alcohol could lead to alcoholism and all the resulting problems.

 

What does alternative medicine offer?

 

What can you do for yourself at home?

 

Redefining Pain as Sensation

One of the most helpful tools for coping with these sensations is simply to change your way of thinking about them.

Just re-defining “phantom pain” as “phantom sensation” can make a big difference.

 

Pain as an Ally

It is possible to view phantom pain as an ally. In general, our pain receptors are allies: having the nerves in our hand tell us that something is too hot to touch helps us avoid severe burns; feeling muscle tension and soreness helps to tell us that we’re over-doing exercise, and are risking injury. To many amputees, phantom limb sensation seems utterly pointless, because we feel like there’s nothing useful or helpful it is telling us, it just hurts!

However, this sensation can also be a sign to you that you need to take care of yourself by changing position and exercising and so on.

With an understanding of Chinese qi energy and the meridians it travels upon, phantom pain can also indicate other imbalances in your health and well-being. For example, phantom pain in a “big toe: may indicate an imbalance in the spleen meridian, but pain on the inside of your heel would indicate that the kidney meridian was out of balance.

Also, if you can accept the phantom feelings rather than push them away, some people have found they are helpful sensations when using a prosthetic limb, helping the user “feel” where the prosthetic limb ends. This may help when walking, so they can “feel” when the limb touches the ground without needing to look to verify it.

 

For other info relevant to amputees, click here

 

Janelle Durham, 2004