How Do You Cope With Neuropathy

Today's post from cancerconnect.com (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
Constipation
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.

www.neuropathy.org

http://news.cancerconnect.com/coping-with-peripheral-neuropathy/

How To Cope With Neuropathic Pain

Today's excellent post from painandmentalhealth.com (see link below) gives advice as to how to manage your condition if you are suffering from chronic pain and as a result is extremely useful for people living with neuropathy. There's no doubt that chronic pain can lead to depressions and reduced quality of life but it may also depend on how you personally approach your illness. This article definitely helps put your discomfort into perspective and is not full of the usual platitudes and cliches. Worth a read.

Coping Toolkit - Pain And Mental health
PAIN AND MENTAL HEALTH : A resource for people suffering from physical pain, and the psychological distress that accompanies it. Thursday, July 3, 2014

Here are a few psychological and behavioral options for managing your pain. While many of the points below duplicate the content in the “Treatment Options” section, what is described below are meant to be “do it yourself” techniques that may be useful in addition to or in between contact with your interdisciplinary treatment team.

Improve Your Communication Skills

This could also be labeled assertiveness training or anger management. To tolerate or overcome chronic pain, you would do well to enhance the ability to state your needs – clearly, regularly, and without scaring off your support network. It may be useful to make a list of your concerns and complaints and bring this written list to read off to your physician, to aid in asserting your needs. Whereas with a caregiver you might have to talk about how you talk – and ask, “what can I do differently so that when I ask for your help, you don’t resent me for it?” You can ask those in your support network to help point out instances when your spoken message and your body language don’t match up – when you are sending mixed messages. However you approach this issue, it can feel like a fine line – being assertive without showing anger or aggression, but without presenting yourself as passive or helpless either. While the feedback may sting at first, just initiating this type of discussion can go a long way to getting your needs met (and your pain soothed).

Monitor Your Medications

You know your body and your pain better than any doctor, you are the expert – so pay attention to how long it takes for pain medications to kick in, what side effects your anti-inflammatory medication causes, or whether you have fears tied to the use of your sleep aids. That being said, you should not play doctor or pharmacist here – don’t think that regular visits to webmd.com or rxlist.com mean you can change your medication dosing around. Being informed about your medications is wise, but your concerns should be reported back to your doctor and, together, you can develop a better medication plan. But know this, you have to stick with the plan (or at least tell the doctor when you deviate) – if the left hand doesn’t know what the right hand is doing, that’s when trouble can arise.

Know Your Habits (and Limits)

It is important to know (and accept) your new physical limitations (though you certainly don’t have to like them.) To gain awareness of these limits, it can be helpful to keep a diary of sorts – to monitor your pain levels in relation to your activity, mood, diet, sleep, and stress levels (along with medication and pain treatments). By doing so, you may come to realize that certain activities or events are triggers for your pain, while others soothe the pain. Such patterns and habits may go unnoticed otherwise, because chronic pain sufferers often don’t feel the effects until some time after a trigger has occurred. The better you know how you and your body react to certain things, the easier it will be to prepare for negative triggers and seek out pain-relieving experiences.

Get Active (Exercise)
Obviously it is important to modify your desires to match your current abilities (and work within the limits set by your treatment team). Nonetheless, physical activity serves multiple purposes: a) improved physical health, b) improved sense of bodily control, c) recognition of sustained strengths and abilities, d) a sense of accomplishment, e) decreased sense of dependence, and f) development of comfort in moving the injured area. (This last point is important, as many pain patients develop an avoidant behavior pattern or begin “guarding” their injury, which in the long run has negative physical and mental effects.)

Take Back Control of Your Body

Take a few breaths deep into your stomach (diaphragm) at a slow and steady pace – you can be sure you are doing this correctly by placing a hand on your stomach and a hand on your chest, and try to make the stomach hand rise and fall more than the hand on your chest. By breathing in this manner you send your brain the message to relax. What follows is a rush of chemicals that act as natural antidepressants and pain alleviators. Combine this breathing with a release of muscle tension and a person can feel a greater sense of control of their body, and naturally reduce pain (somewhat).
There are a few ways to reduce muscle tension: a) Stretching (as you are able), b) Tensing and then relaxing muscles in groups across the body (first neck, then shoulders, and so on; this should be done only if it does not aggravate your pain), or c) Focusing the mind on muscle groups in succession and emphasizing a mental relaxation of the muscles (thinking to oneself “calm, relax” while focusing on the neck and so on).

Engages in Distraction and Pleasant Activity
 
The mind is very adept at focusing on pain, as any signal of injury is a cue to take care of oneself. However, when the pain is no longer a useful signal, the mind is also able to focus to less unpleasant sensations. This is why you rub your shin after you bang it against the bedpost in the middle of the night – the brain would rather you feel the sensation of the rubbing than the sensation of the pain, and so the pain doesn’t hurt quite so bad.

This technique doesn’t always have to involve a physical distraction from the pain (like rubbing your shin, or like the TENS unit or capsaicin cream your doctor may prescribe). Engaging your mind and emotions in a hobby, activity, social interaction, artistic endeavor or otherwise pleasant behavior allows your brain to focus on those sensations and signals, and tone down the pain (in a manner of speaking). However, the more mental energy you use in this behavior, the greater the benefits – simply watching television or having a boring conversation will not reduce the pain, and it may make it feel worse. But if your mind and your emotions are engaged, the pain signals become more like background noise.

Explore the Benefits of the Pain

While this may sound like a useless task, there are lessons to be learned by your experience. Patients note that giving meaning or reason to the pain makes it more bearable (even if that reason is that the pain is punishment for past evil deeds). Focusing on the positive aspects of a situation allows people coping with stress (physical or emotional) to overcome it more easily. (A great deal of research has been done in this area tied to trauma victims with some surprising results). So, what are the benefits, what have you learned? Have you become less stubbornly independent, gotten closer with a sibling, slowed your life down, or counted your blessings (due to your pain)? Have you learned that you are a stronger person than you ever realized (or wanted to be)? Answers to these questions will make the pain less frightening and more tolerable. Instead of simply ignoring or fighting against your pain, get to know it better, see what it tells you.

Use Imagery (Daydream)

Going to your happy place is more than just an expression – it is a useful psychological coping tool. Essentially, creating an elaborate daydream can aid you in escaping (momentarily) from your unpleasant physical sensations and allow your mind to explore more pleasant images. (This is similar to the idea of distraction discussed above.) Some key points here: a) Don’t expect that imagery will completely dull the pain, b) Incorporate a toned down version of your pain into your image (maybe if you have diabetic neuropathy in reality, in your image you may be ice skating and your feet feel hot/cold and achy but the experience is pleasant), c) Imagery should not be a lifestyle choice – it is a brief vacation, but denying reality is a bad way to go, and d) Lastly, details and senses are key – practice the same image or experience repeatedly and fill in the sights, smells, sensations and so on as elaborately as possible.

Practice Good Sleep Hygiene

You brush your teeth and floss to maintain oral hygiene, but what do you do to manage your sleep hygiene? Most people don’t even think about this. But as a person dealing with pain you may notice that pain disturbs your sleep, and the more fatigued you are the worse the pain feels, and so on. So, improving your sleep will improve your pain and your ability to cope in general. Here are some tips for a better night’s rest:
The bed is a place for sleep and sex only – you don’t want your mind to associate any mentally stimulating activity (watching tv, reading, etc) with the bed.
No caffeine, nicotine, or excess alcohol (more than a glass) in the last few hours before your goal bedtime.
No physical exertion just before sleep, but do try to be as active as possible during the day to tire yourself out.
No naps (unless this is the only way to get any sleep, in which case, nap away but don’t be surprised that you’re awake at 3 am) – the body prefers 8 hours in a row and at night, but 6-8 hours daily, however you get it, is good.
Watch how your pain and medications affect your sleep – if you awake in pain, maybe the last pain pill of the evening should be taken later closer to bed, or perhaps you should set an alarm to wake at 4 am, take a pain pill, and get back to sleep. Also, consider how the side effects of your medications (sedation, discomfort, bowel distress, etc) will affect your sleep.
If you don’t fall asleep in the first 20 minutes being in bed, get up and do something else, and return to bed later when you are more tired. Lying awake in bed trying to sleep tends to be a futile task.

Vent Your Emotions

While talking to a professional is ideal, simply telling anyone how you are feeling relieves the mental and emotional burden. Expressing your feelings verbally actually has an impact on how you experience your pain. (An interesting study recently showed that yelling out “dirty” words improves patients’ pain experience.) It is understandable that there are days or situations where patients desire to feel “normal” and wish to avoid discussing their pain. However, over the long term there can be negative effects on the body and mind that arise from repressing your true feelings about a situation. So whether it is a professional or a friend, spouse, spiritual leader, or hairdresser – let your true feelings be known (from time to time).

Manage Your Stress Levels

While this is good advice for anyone, many pain patients have experienced the negative effect that psychological stress on their pain. Mental health professionals even have a special diagnosis that is used to denote whether a person’s pain is made worse by the stress in his/her life. The first step is recognizing what or who stresses you out – is it too many doctor appointments in one day, or interaction with the pharmacist? Do you notice that any discussion with your daughter raises your blood pressure (and your pain) or that an untidy living environment makes you clench your teeth?

Once you denote your triggers for stress you can begin to manage them by using: a) communication skills (such as assertiveness), b) time management, c) outsourcing or delegating of responsibility (asking for help), d) planning only one stressful activity per day, e) developing coping skills (for instance, read a magazine while in line at the pharmacy to avoid worrying about the wait time), or f) focus on the elements of your life you can control (to avoid feeling overwhelmed by things out of your control). There is no right way to manage stress – it is about finding the right tool for you. Try different techniques and discard the skills that are ineffective, but once you find something that works make it a regular part of your routine.

http://www.painandmentalhealth.com/index.php?pr=Coping_Toolkit