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Coping With Painful Neuropathy

by Wendy J. Meyeroff

One of the most prevalent complications of diabetes is neuropathy, or damage to the nerves. According to the National Diabetes Information Clearinghouse, up to 70% of people with diabetes develop neuropathy, particularly the longer they live with diabetes. While neuropathy can affect any nerve in the body, it very commonly affects those in the feet and legs and sometimes the hands and arms. This type of neuropathy is called peripheral neuropathy, and it can cause a range of unpleasant sensations, including tingling, burning, numbness, and pain. Treating the pain that can result from peripheral neuropathy is often difficult.

“Pain is a disease in and of itself. It tires you out. You can’t get away from it; it follows you everywhere,” says Norman Latov, MD, PhD, professor of neurology at the Weill Cornell Medical College in New York City and an expert on peripheral neuropathy.

Understanding the pain
“The pains that develop with neuropathy are what we call errant signals; they aren’t providing a realistic look at what is or isn’t disturbing us,” says Paul Arnstein, RN, PhD, clinical nurse specialist for pain relief at Massachusetts General Hospital in Boston.

Errant signals can be positive or negative. “A positive signal is when something bothers or hurts you even when there’s no tissue damage, such as a burning pain when there’s nothing hot,” says Arnstein. Another type of positive signal is when a pain is perceived as much stronger than it is. Typical examples are when even a light linen shirt hurts to wear, or the slightest touch makes someone scream.

A negative errant signal should hurt — but doesn’t. A typical example is the person who can’t tell when a pot handle is too hot and just keeps holding the pot even though it’s burning him. “Numbness is another negative pain signal,” says Arnstein, who notes that it’s one that’s known for causing problems in people with diabetes. “They can’t feel if they pick up a splinter in their foot, so one of the things we teach people with diabetic neuropathy is to carefully examine their feet every night. If they can’t do it themselves, they need to have someone help them,” he says. People with numb feet should also always wear shoes or slippers (except in bed and while bathing) to avoid injuring their feet.

Medicines
Sometimes a mild neuropathy will respond to an over-the-counter drug such as a nonsteroidal anti-inflammatory drug (NSAID). Aspirin and ibuprofen are examples. However, even in prescription forms (such as Celebrex), NSAIDs “typically aren’t very helpful,” says A. Gordon Smith, MD, associate professor of neurology and pathology at the University of Utah School of Medicine in Salt Lake City.

So experts keep seeking other pain relievers. “More commonly, we use what are called neuropathic pain agents, most often antiseizure medicines like Lyrica and Neurontin. Certain antidepressants are another option,” says Smith. (Lyrica is the brand name of the drug pregabalin; Neurontin is the brand name of gabapentin. These drugs are also referred to as anticonvulsants.)

Latov offers this advice for saving money on medicines: “Ask your doctor if there’s a similar but older drug you might try. Older drugs tend to have a generic version, which is likely to cost less,” he says. As an example, Neurontin is an older drug than Lyrica and is available as a generic.

Some products for neuropathic pain relief are applied topically, or on the skin. A lidocaine patch (available by prescription) is one way to provide topical relief. Another, according to Smith, is “creams containing capsaicin, a natural substance that releases heat. It [relieves pain by damaging] the tips of the nerves that carry pain messages to the brain.” However, it also causes a burning sensation on the skin where it is applied for the first several days to weeks of application, and some people find that difficult to tolerate. (With continued use, the burning sensation should diminish.) A variety of brands and strengths of capsaicin cream are sold over the counter. “There’s a high-dose capsaicin in development,” Smith adds, “but it would be have to be applied in the doctor’s office.” The advantage of topical applications is that they don’t have systemic side effects.

Opiates offer pain relief but have numerous side effects, not the least of which is the potential for addiction. One option that’s now available, says Latov, is a spinal pump for delivering opiates. “Unlike an oral tablet, in which a relatively small amount actually reaches the spinal cord or brain, the pump allows the medicine to be injected directly into the spinal fluid.” That means you need less of the opiate to be effective, but the pump requires surgery to insert and carries its own risks.

Complementary therapies
Nowadays, more and more people experiencing neuropathic pain, as well as some doctors, are willing to explore less traditional pain fighters. “Some people do better with holistic therapies,” Smith acknowledges. “If the person has already used a certain therapy, it’s more likely that that therapy will relieve their neuropathic pain,” he says. So, for example, if you’ve used acupuncture previously to fight knee pain, consider that for your neuropathic pain as well.

A number of botanical and dietary supplements have been studied for neuropathic pain relief, perhaps most notably the antioxidant alpha-lipoic acid. But while some studies have had promising results, at present, no dietary supplements are routinely recommended by most health-care practitioners for the treatment of neuropathic pain. If you wish to explore this option, discuss it with your doctor to make sure you’re using a safe approach and are not taking any medicines that could interact with a dietary supplement. You can also learn more about the use of complementary therapies and nutritional supplements for neuropathic pain in these resources:

  • The Web site of the National Center for Complementary and Alternative Medicine, http://nccam.nih.gov/
  • The book “The American Diabetes Association Guide to Herbs and Nutritional Supplements” by Laura Shane-McWhorter, PharmD, BCPS, FASCP, BC-ADM, CDE, published by the American Diabetes Association in 2009

(For more neuropathy resources, click here.

Beyond supplements, there are many other complementary therapies that may offer pain relief. “It could be self-hypnosis, visualization, deep breathing, yoga, prayer,” says Susan Ouellette, CRNP, a mental health professional at the VA Medical Center in Baltimore, MD. There are all sorts of alternatives and the key is to find one that works for you.

What about surgery?
Many people figure when all else fails, try surgery. One option mentioned earlier is a spinal pump, but that doesn’t truly cure the pain; it only masks it. A similar approach is a procedure performed in pain centers called interventional therapy. “A spinal stimulator produces an electric current, which interferes with other pain sensations. The stimulator is implanted next to the spinal cord and produces pulses which you can control remotely,” says Latov.

Before doing this or any surgery, though, you must get an accurate diagnosis. “You don’t want to operate, after all, if the pain isn’t likely to respond to surgery,” says Jack Stern, MD, assistant clinical professor of neurosurgery at Yale University School of Medicine in Connecticut. “Patients with neuropathic pain usually describe it as ‘burning’ or ‘gnawing.’ Many pains that are more likely to respond to surgery, like a herniated disc, are felt as ’sharp’ and ’shooting,’” he says.

Fighting depression
Recognizing and treating the physical aspects of chronic neuropathic pain is important, but so is finding ways to cope with the mental health aspects of the problem.

“For many, chronic pain is depressing, period. It colors their day. It takes away their joy in life. It makes them feel helpless,” says Ouellette. “Even when the pain is gone, they’re waiting for it to come back. It becomes the central issue of their life.”

As a result, you may deprive yourself of daily pleasures, like going to the movies with a friend or going to a beloved niece’s wedding, because you’re so afraid that’s when the pain will return. That leads to social isolation — and even more depression. “Eventually you can’t tell which came first, the pain or the depression, but it doesn’t matter. The bottom line is you need to break that cycle,” says Ouellette.

Antidepressants may help, but they’re far more effective as part of a complete mental health program. Another part of that program is allowing yourself to grieve for what you’ve lost. Ouellette notes that for many people, having peripheral neuropathy means that something has died: their functionality, maybe even their ability to be independent. To move on, those losses must be recognized. According to Ouellette, “It’s all right to be angry; just don’t let the anger take over.” When you are ready to look forward, Ouellette suggests saying to yourself, “OK, something in my life has altered. Now, how do I deal with it?”

Mental health enhancers
For Mims Cushing, who has had neuropathy from unknown causes since 1999, part of dealing with it is putting her regular activities on hold when she feels her symptoms worsening. When you are having a lousy day, she recommends, find a way to take time out and do something you enjoy. “My book has a whole chapter on hobbies; escape your symptoms through distraction. We do hobbies because we love them, and what could be more uplifting?” (Cushing cowrote the book “You Can Cope with Peripheral Neuropathy” [Demos Health, 2009], with Dr. Latov.)

Cushing also offers this advice: “When you’re having a terrible day, don’t fight. Accept it. Instead of focusing on what’s hurting, look for one thing that went well.” It needn’t be anything phenomenal. Reminding yourself that you put all the laundry away is fine.

Don’t forget the effect your environment can have on you. It’s very easy to use pain as an excuse not to pick things up or to clean. “If you live in a messy house, it will slop over into the way you feel,” says Cushing. “Start small. Don’t try to clean the whole bedroom. Take out one drawer and reorganize it while you’re watching your favorite TV show,” she says. Who knows? You might find once you get started, you can’t wait to proceed! And the sense of accomplishment can only help lighten your mood.

Getting support
Can’t regain your spirit alone? Find help. It doesn’t have to come from a mental health professional (although it can). Talk to friends, your doctor, or your pastor. Perhaps your local Agency on Aging can steer you to a service. (The national Web site is at www.n4a.org.) See if your doctor or an organization can steer you to people who they know have done well with neuropathy and might be willing to offer you support.

If you seek out a support group, however, remember that there’s a difference between telling others about your feelings and problems and complaining about them. Ouellette notes, “It shouldn’t just be people you can feel miserable with. The last thing you need is people to bring you down even further.”

Some support groups are run by trained professionals who can step in and redirect the discussion if a meeting is becoming a complaint session. But many others do not have a trained facilitator and rely on their members to respect the group’s ground rules and use their time together constructively.

Whether in a support group or any other situation, Cushing advises learning to recognize and avoid what she calls “toxic people.” She says, “If some people in your family upset you, don’t pretend otherwise. If you have to see them over the holidays, find a way to limit your time with them, and be prepared for a flare-up.”

Making adjustments
Can you imagine learning to enjoy living with chronic pain? Sounds impossible, doesn’t it? Yet for 14 years, Paul Arnstein has worked in a program to teach people to do just that.

“We teach people to distinguish between sensations that are really indicative of harm versus those that are just annoying,” says Arnstein. “Otherwise, you always receive the same signal: ‘This is bad and I should stop.’ Yet being less active may actually do you more harm,” he says. You gain weight, so obesity-related pain is only likely to increase. You find it harder to enjoy various activities, and that leads to sadness, despair, and isolation.

Another key is pacing. “Maybe you can no longer handle a 200-square-foot garden, so make the plot smaller — or handle a window box. Mix and match your activities. Maybe you can still kneel to weed, but only for 15 minutes. During the next 15 minutes, stand up to hand water the lawn,” says Arnstein.

“Try something new,” says Ouellette. “If five minutes of walking doesn’t give you the high that hiking used to, find a different activity.” Maybe your next adrenaline rush and/or sense of satisfaction will come from swimming or even something less aerobic, like yoga or tai chi.

Avoid overexertion. “There are washers and dryers that are elevated so they require a lot less of the bending and lifting that worsens some people’s pain,” says Arnstein. Try hanging your pots and pans on a rack, so you don’t have to lift six other items before you get the one you want. “The key is adapting,” says Ouellette.

Don’t forget the basics
When diabetes is the cause of peripheral neuropathy, one of the most important steps you can take is to keep your blood glucose level in the near-normal range as much as possible and to learn to prevent wide fluctuations in blood glucose level. “In diabetes, several things are going on: metabolic changes, where cells don’t metabolize properly; vascular impairment (not enough blood flow); poor infection fighting; poor healing; and nerve and blood vessel inflammation, causing continuous nerve damage,” says Latov. “Most drugs generally affect only one of these mechanisms at a time, so medication often isn’t enough.”

Making healthy food choices and staying physically active are, of course, key factors in staying healthy with diabetes, but other lifestyle measures and alternative therapies may help, too. “I had one patient who learned deep breathing and eventually — just by learning to take a few deep breaths when she was feeling stressed — cut her insulin in half,” Ouellette says.

If you smoke, stop. Smoking constricts the blood vessels that supply nutrients to the peripheral nerves and can worsen neuropathy symptoms. Sometimes an external support — such as an orthopedic insert or a specially designed shoe to even out an improper gait or a hand or foot brace to relieve nerve compression — can help lessen neuropathic pain.

As you can see, there are many options. “If you don’t feel your practitioner is committed to helping you find a pain relief option, don’t be afraid to get a second opinion,” Dr. Smith concludes.

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