Friday, 18 January 2013

How Do You Cope With Neuropathy?

Today's post from (see link below) will go over old ground for some people but provide very useful information for others. It talks about neuropathy from a cancer patient's point of view but whatever the cause of your neuropathy, you may recognize much of what is described. The description is well written and goes on to discuss why neuropathy happens and what some of the common treatments are. Personal accounts are always useful because they can reassure you that you're not alone in dealing with this disease and show you how others are coping.

Coping with Peripheral Neuropathy

By Eleanor Mayfield

It began with numbness and tingling in her feet. The numbness made it difficult for her to maintain her balance, especially in the dark. Gradually, the discomfort worsened. Sometimes she had sharp, burning pains in her feet. “Sometimes it would feel like I was walking on rocks.”

What Jacqueline Cohen, PhD, is describing are some of the classic symptoms of peripheral neuropathy (PN). Dr. Cohen, a 64-year-old professor at Carnegie Mellon University in Pittsburgh and a four-year survivor of chronic myeloid leukemia, has developed PN as a side effect of Gleevec® (imatinib mesylate), the drug she takes daily to keep her cancer in check.

Dr. Cohen is one of thousands of cancer patients and survivors across the country who are coping with PN, a side effect associated with many chemotherapy drugs.

What is peripheral neuropathy?

Neuropathy means “disease of the nerves.” The brain and the spinal cord make up the central nervous system. The peripheral nerves are those that branch out from the spinal cord into the trunk and the extremities (arms and legs).

“The peripheral nervous system is like the body’s electrical wiring,” says Tina Tockarshewsky, executive director of the Neuropathy Association, a New York–based national voluntary organization serving patients with neuropathy resulting from cancer treatment or other causes. “When the peripheral nerves are damaged, the electrical system goes haywire. Sometimes there are sparks, and sometimes the lights go out.”

Pain and numbness, particularly in the hands and feet, are hallmark symptoms of PN. The condition can also cause a wide variety of other symptoms, depending on which nerves are damaged.

These symptoms may begin during or after cancer treatment. They tend to worsen over time, and they may persist for a year or more after treatment is completed. For many patients, damaged nerves do eventually heal and symptoms clear up. For others, however, the nerve damage—and the symptoms—may be permanent.

How is peripheral neuropathy treated?

No medications have been approved by the U.S. Food and Drug Administration to treat PN related to cancer treatment. Doctors may prescribe anti seizure medications or antidepressants to treat painful neuropathy in cancer patients, says Frank S. Lieberman, MD, an associate professor of neurology and medical oncology at the University of Pittsburgh Cancer Institute. Dr. Lieberman recently prescribed Lyrica®(pregabalin), an anti seizure drug, to Jacqueline Cohen, who says the medication has helped relieve the pain in her feet.

Other treatments that patients with painful neuropathy may find helpful, says Dr. Lieberman, include anesthetic skin patches, opioid pain relievers, acupuncture, and transcutaneous nerve stimulation (a procedure in which low-voltage electric current is passed through electrodes adhered to the skin).

Arthur D. Forman, MD, an associate professor of neuro-oncology at the University of Texas M. D. Anderson Cancer Center in Houston, says he recommends to his patients supplements of alpha-lipoic acid (ALA), an antioxidant. In people with PN symptoms caused by diabetes, some studies have shown that ALA may provide relief. A study is currently under way to test its effectiveness in patients with PN caused by cancer treatment. Other supplements whose effectiveness is being studied are vitamins B6 and B12 and acetyl L carnitine.

Dr. Forman advises against using supplements called “growth factors” that may be marketed as promoting nerve healing. “Nerves need time to heal,” he says. “Trying to make them heal quickly may do more harm than good.”

Patients should know, Dr. Forman adds, that even as damaged nerves begin to heal, PN symptoms may continue to worsen for a while because the new nerve cells are “irritable.”

Can peripheral neuropathy be avoided?

Doctors can adjust the way chemotherapy is delivered to minimize or reduce the risk of PN, says Dr. Lieberman. For example, smaller, more frequent doses of chemotherapy may result in less PN than larger, less frequent doses. Taking a time out from chemotherapy—that is, stopping treatment for a while and then restarting it—may also help reduce PN.

What can patients do to cope with the symptoms of peripheral neuropathy?

Understanding what causes PN symptoms can reduce feelings of fear and panic and help patients feel more in control, says Dr. Forman. In addition, some simple lifestyle changes can help patients deal with its effects on daily life.
Use a night-light to reduce the risk of stumbling in the dark.
Install grab bars in the shower or sit on a stool while showering.
Sleep with the head elevated 30 degrees to reduce dizziness on rising.
Use specially designed utensils to make it easier to eat with numb fingers.

Tips from a Patient

Audrey Youngelson hasn’t let either metastatic breast cancer or peripheral neuropathy slow her down. “I have cancer,” Audrey says, “but cancer doesn’t have me.” The 72-year-old travel agent from New City, New York, recently returned from a trip to Egypt, where she toured the pyramids on a motorized folding scooter.

“It doesn’t matter where I am—I have neuropathy,” she says. “So why not enjoy life as much as I can?”

Audrey developed PN symptoms after being treated for breast cancer with surgery and radiation therapy in 1985. Whether her treatment caused the neuropathy has never been clear—officially, it is considered idiopathic, or of unknown cause.

She offers this advice to other cancer patients affected by PN:
Talk to your healthcare providers about your neuropathy symptoms. Be assertive in asking to be referred to a neurologist who is an expert in PN.
Keep trying treatments until you find one that works for you.
Make use of adaptations and assistive devices to help you function. Unable to operate a car’s foot pedals because of painful neuropathy in her feet, Audrey drives a car equipped with hand controls.
Don’t hesitate to ask others for help when you need it.
Join a support group where you can share your experiences and learn from others coping with the same condition.

Symptoms of Peripheral Neuropathy
Depending on which nerves are damaged, symptoms of peripheral neuropathy may include the following:

Blurred vision
Cramping, pain, or weakness of muscles
Decreased sensitivity to heat or cold
Difficulty with fine motor tasks (such as buttoning, picking up small objects, and turning pages)
Difficulty passing urine
Dizziness, loss of balance, stumbling, or tripping when walking
Hearing loss or ringing in the ears (tinnitus)
Increased sensitivity to pain
Loss of feeling (numbness) in the extremities (fingers, toes, hands, feet, arms, and legs)
Loss of sensitivity to heat and cold
Muscle cramping, pain, or weakness
Painful, electric shock–like sensations in the spine
Tingling or burning sensations in the extremities (“pins and needles”)

Medications That May Be Prescribed to Treat Painful Neuropathy
Antidepressants Aventyl,® Pamelor® (nortriptyline)

Cymbalta® (duloxetine)

Effexor® (venlafaxine)

Elavil® (amitriptyline)

Antiseizure medications Lyrica® (pregabalin)

Neurontin® (gabapentin)

Tegretol® (carbamazepine)
Local anesthetics Lidoderm® (lidocaine patch)
Opioid analgesics Kadian® (morphine extended release)

OxyContin® (oxycodone extended release)

Percocet® (oxycodone/acetaminophen)

Ultram® (tramadol)

A Resource for Patients
Neuropathy Association

The Neuropathy Association is a nonprofit organization providing patient education and support, volunteer-led support groups, and advocacy for patients with neuropathy.

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