Communicator - Volume 3 No. 1 - February 2002
Phantom Pain - An Update
Financial Assistance for Prostheses and Other Assistive Devices
Phantom Pain - An Update
Whenever two or more amputees gather, the conversation sooner or later turns to the subject of phantom pain and what to do about it. Although many scientists have studied phantom pain and much has been written about it, because it is a complicated phenomenon that occurs in the brain and not in the residual limb, scientists have failed to come up with a therapy that successfully eliminates it. What remains are a wide variety of therapies that may or may not help any given individual.
Allan Larson, a below-elbow amputee who is affiliated with the Saskatoon Amputee Support Group, Inc. in Saskatchewan, Canada, has assembled the following excellent list of these therapies. You may want to duplicate this article to distribute to your members.
Acupuncture is a healing art that has been practiced in China for several thousand years to treat a variety of ailments, including chronic pain. Acupuncture involves the insertion of tiny needles into the skin at specific sites. The needle is then twirled for a few minutes or a low electrical current is applied. It is not fully understood how acupuncture works - the Chinese healing art stresses the energy flow of the Ch'i, or life force, while western medicine suggests it stimulates the production of the body's natural painkillers called endorphins.
Anesthetics: Preoperative: Epidural Blockade
When amputation surgery is performed, whether caused by trauma or disease, the amputee is often in pain before the surgery commences. It is thought that this pain imprints on the brain and creates a "pain path" which then causes phantom limb pain after the limb is removed. By using an epidural, an injection of anesthetic to the spine, usually for a period of 72 hours prior to the surgery, the message of pain is blocked from reaching the brain and creating a "pain path." It has been reported that people who have an epidural blockade prior to surgery experience less pain during the postoperative period, as well as a reduction in the frequency and severity of phantom limb pain. It is also thought that the epidural reduces pain by cutting off the pain messages associated with the surgery, which still register in the brain even though the patient is unconscious.
Postoperative: Local Anesthetic (examples: Lidocaine, Marcaine, Novocaine, Pontocaine, Xylocaine)
These medications act on nerve cells by making them incapable of transmitting pain messages for a short period of time. They may be given as spinal (a small needle into the spinal column, in the lower back), epidural (a small needle and catheter into the spinal column, in the lower or mid-back), by local injection or a wide variety of nerve blocks. These may be used to relieve trigger points and reduce stump pain.
Advocates of biofeedback feel that phantom pain may happen because of anxiety, which may increase muscle tension and contribute to the pain cycle. "Hyperactive muscles" cause irritation in the cut ends of the nerves in the residual limb. Electrodes are attached to the residual limb which detect when the muscle is tensed and trigger a flashing light or buzzer to provide feedback. Once the amputee has become aware of the muscle tension they learn to relax the muscle. When an appropriate decrease in muscle tension is reached the feedback stops. The focus of this treatment is to teach the muscle(s) how to relax, thereby relieving the pain.
Some amputees may find relief through chiropractic - which means "treatment by hand. "Chiropractic does not involve drugs or surgery, but instead concentrates on the spine in relation to the total body. Doctors of chiropractic, or chiropractors, specialize in the understanding and treatment of the different parts of the spine: bone (vertebrae), muscles and nerves. When a vertebral joint is not working properly it can create an imbalance which disturbs the nervous system. This can lead to excess strain being placed on other joints, resulting in some form of pain. Through manual adjustment, or manipulation of the spine, chiropractic works to correct misalignments of the spine thus alleviating pain.
Applying cold to the residual limb may help alleviate some of the discomfort associated with phantom limb pain or muscle spasms. Refreshing coolness can be administered through cold compresses, ice packs or cool baths. Amputees may also wish to try a cooling cream or gel. One newer product available is Biofreeze, which is an analgesic cryotherapy gel made from the extract of a South American holly shrub. Biofreeze creates a cooling sensation within the skin that can last several hours. Another gel, Glenalgesic Blue, is a topical pain fighter for the prompt and temporary relief of muscular aches and pains, containing menthol, alcohol and camphor. [See also Heat.]
Cranial Sacral Therapy
This type of therapy, involving the study of bone and joint misalignment related to the head, has been practiced by many different cultures for thousands of years. Therapeutic touch is applied to the head, and meditation and visualization techniques may also be used in conjunction with cranial sacral therapy. A therapist treating phantom pain may "massage" the missing limb, as well as encourage visualization of the lost limb in an effort to help amputees release any sense of grief, loss or anger towards the missing limb(s).
The nerves in the stump of the amputated limb can be very sensitive, especially directly following the amputation. Not only does desensitization reduce nerve sensitivity, it can also reduce pain and discomfort overall. Rubbing the stump with a piece of terry cloth, gently manipulating the stump manually, tapping the stump, or using a vibrator can all help to desensitize the nerves, alleviating sensation and pain. [See also Massage.]
Dietary and Herbal Supplements
Some amputees have found certain dietary supplements or homeopathic food products help reduce phantom limb pain. Examples of dietary supplements amputees have tried include: potassium;calcium; magnesium, and injections of Vitamin B12. Certain herbal products have also been found useful by some amputees including juniper berries (interestingly called "ghost-berry" by Native Americans). Antioxidants such as Pycnogenol (a pine bark extract sold in Canada as a food product) and Grape Seed Extract are extremely concentrated bioflavonoids, which until 1936 were known as Vitamin P. Antioxidants attack free radicals, which are unstable atoms inside our bodies that attack all body tissues, degrade collagen and reprogram DNA. Free radicals are believed to be the underlying cause in many diseases. Antioxidants are found in high concentrations in grape seeds and pine bark, and in lesser amounts in grape skins, cranberries, lemon-tree bark and hazelnut tree leaves. Antioxidants are available in liquid and pill form.
*Amputees should always consult their doctor before taking any supplements or herbs, as these are not harmless, but can have powerful side effects. They may also interfere or conflict with other medications being taken at the same time.
Another theory behind phantom limb pain suggests that it occurs because the nerves in the residual limb lack the stimulus once provided by the missing limb. One electrical treatment, transcutaneous electrical nerve stimulation (TENS), uses low current at a low-frequency oscillation to stimulate the nerves and provide pain relief. The amputee feels a gentle tingling without increased muscle tension. Depending on the severity of pain, the small-battery operated device can be used for 20 minutes to a few hours of stimulation, several times daily, and the amputee can be taught how and when to apply treatment. Because TENS can cause arrhythmia, it should not be used by people with advanced heart disease or a pacemaker. Your doctor will advise if this is suitable for you.
Exercise increases circulation and stimulates the production of endorphins (chemicals naturally produced in the brain that kill pain). Many amputees find that moderate and frequent exercise can help to reduce phantom pain. Flexing and relaxing the muscles on the residual limb also helps some amputees.
Farabloc is a fabric which contains extremely thin steel threads but looks and feels like linen. The makers state that Farabloc has a shielding effect from ions and magnetic influences, which protects damaged nerve endings. It stimulates blood circulation and produces a pleasant feeling of warmth. It can be cut and sewn, washed and ironed like any other fabric, and is available in blanket forms of various sizes. People may have socks, sheaths, or custom residual limb covers made from Farabloc or the material may be incorporated directly into a prosthetic socket.
Applying soothing warmth has been reported to help deal with occasional bouts of phantom limb pain. Warm baths, a heating pack, a Magic Bag, or wrapping the stump in warm, soft fabric to increase circulation are all examples of how heat can be used. There are also rubs and gels which generate heat, such as Rub A535 or Tiger Balm. More advanced forms of heat therapy can be used under the guidance of a trained professional. Some amputees alternate between applying heat and cold. [See also Cold.]
Keeping a Journal
Some amputees write down dates and times as well as other factors that may be present when they experience phantom limb pain, such as stress. A record kept over time may indicate factors that influence or trigger the occurrence, frequency or severity of an attack of phantom limb pain in the same way that migraine sufferers have found that certain foods trigger their migraines.
Magnets have been used for thousands of years to treat many conditions, including recently phantom limb pain. Magnetic therapy involves applying a magnetic field to the body to relieve pain and speed up the healing process. The application of electromagnetic fields have been shown to affect cell permeability and improve oxygen delivery to the cells, which can lead to better absorption of nutrients, improved circulation, and clearance of waste products. Magnets may also reduce inflammation and pain, and promote healing. The magnets are usually incorporated into bracelets, belts, or fabric straps, and are available in differing strengths and sizes. These products are available from several companies such as Nikken and Bioflow. (It is recommended that you consult your doctor before trying magnetic therapy to ensure it is a good choice for you.)
Massaging your limb is a good way to increase blood-flow and circulation, which may help to alleviate some discomfort. Massage may also help to reduce swelling and loosen stiff muscles, which can provide some relief from pain.
Medications are useful in the treatment of pain (especially chronic pain). However, many amputees prefer to try other avenues of relief first. It is important for the amputee to understand all the possible side-effects of over-the-counter and prescription medications, including the implications of long-term use.
Anti-Inflammatory Drugs (examples: acetaminophen [Tylenol], aspirin, ibuprofen [Advil, Motrin]
Acetaminophen, aspirin and ibuprofen are all examples of medication which can reduce mild swelling or soreness, and are useful for mild to moderate pain. They are non-addictive and maybe effective for occasional bouts of phantom pain. One amputee uses Tylenol Arthritis Pain for relief from his phantom limb pain.
Anti-Depressants (examples: Amitriptyline, Elavil, Pamelor, Paxil, Prozac, Zoloft)
Developed to treat depression, many antidepressants have been found to be useful in the treatment of many chronic pain conditions, including phantom limb pain. These drugs work centrally on the brain to either block or increase certain chemicals that help regulate normal brain function.
Anti-Convulsants or Anti-Seizure Medications (examples: Tegratol, Neurontin)
These drugs have also been found useful in the treatment of phantom limb pain. They act directly on the nerves both in the residual limb and in the brain to alter neurotransmission, thus calming nerves in the residual limb which may have become over-active following amputation. These drugs are prescribed in small doses and are gradually increased to a level which promotes relief. It is also very important to decrease the dose gradually before ceasing to take the medication.
Narcotics (examples: Codeine, Demerol, Morphine, Percodan, Percocet)
These drugs mimic the pain killing chemicals released by the brain in response to pain. While they are very effective as temporary solutions for pain after surgery, trauma, or to treat cancer pain, they are highly addictive and in the majority of cases should not be used for a prolonged period. Amputees who have only an occasional severe attack of phantom pain may benefit from a limited course of this type of drug. When these drugs are taken on a regular basis the patient becomes addicted and desensitized to the drugs, requiring more of the drugs while achieving less effective pain relief.
Both physical and mental tension can make pain worse. Meditation may help to reduce phantom limb pain by relaxing tense muscles and lowering anxiety levels. The aim of meditation is to produce a state of relaxed but alert awareness, this is sometimes combined with visualization exercises that encourage people to think of pain as something remote and separate from themselves.
Some amputees may find individual or group therapy beneficial. Some have even tried hypnosis. Trained professionals can help amputees learn coping skills and can provide psychological and emotional support for dealing with pain.
Bandaging and shrinker socks apply even pressure to the residual limb which may help to reduce or alleviate phantom limb pain.
Wearing Your Artificial Limb
As well as improving circulation, putting on your artificial limb and moving around may also help alleviate phantom limb pain.
We recently received a suggestion from a support group leader for an annual meeting workshop. She wrote, "One of the things we need to expand on is that once the amputee has left the hospital or rehab and is on his way home, we need to provide support for them and the family on how to adjust to the changes they need to make in their environment. Many are low-income families or don't have anyone that can help them to adjust. . . . . Many are confused about getting those services and how to be able to get and afford equipment they will need."
It remains to be seen if such a workshop will be scheduled, but if any groups are interested in obtaining national non-profit information for prosthetic funding, there is an Amputee Coalition fact sheet available via the Web site in the Information Center. The fact sheet, compiled by MaryJo Walker, is entitled "Financial Assistance For Prostheses and Other Assistive Devices."
It outlines steps to take before the amputees starts to look for sources of assistance. Very comprehensive information is included about the services provided by Medicare, the Veterans Administration, the Civilian Health and Medical Programs of the Uniformed Services (now called TRICARE); and general information is included about state vocational rehabilitation services. state technology assistance programs, protection and advocacy/client assistance programs, private insurance, and medical discount programs. There is also a long list of non-profit organizations and providers of children's services.
It occurred to us that you might want to take a look at this fact sheet and perhaps duplicate it for your resource library or for distribution to your members. You can find it at . . .
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