For the past seven years, Stuart Smith has been caring for his wife, Ellen, who suffers from congestive heart failure and Elhers-Danlos syndrome, a genetic disorder that that affects the connective tissues—mainly the skin, joints and blood vessel walls. Every day, Ellen feels pain in her back and joints and can't perform simple tasks like cutting her own food because the pain is so severe.
“It's as much emotional pain as it is physical pain,” says Smith, who lives in N. Scituate, Rhode Island. “I don't think there's anything more frustrating in the world or emotionally pain-inducing than seeing somebody you love in pain.”
Approximately 100 million Americans suffer from chronic pain, which occurs when pain signals in the body consistently fire in the nervous system for weeks, months or years, according to the American Academy of Pain Medicine. The emotional side effects can be just as unforgiving, causing a variety of conditions like depression, fear and anxiety.
Many rely on pain pills prescribed by their healthcare providers, which minimize the intensity of pain signals reaching the brain, including areas of the brain that control emotion. But no pain medicine is without side effects like nausea, fatigue and potential liver or kidney damage. Even over-the-counter drugs like aspirin or ibuprofen (Advil™, Motrin™) taken over long periods of time have been linked with an increased risk of cardiovascular disease.
Although painkillers work wonders, most people dealing with chronic pain can do better. There are many alternative approaches that can be safely combined with their medication regimen, self-care and caregiver support. While they may not be able to deliver the knockout punch to defeat the pain, at least they can help someone in pain go the distance.
People with heart disease and chronic pain are commonly prescribed painkillers called opioids or narcotics like codeine, oxycodone or hydrocodone, says Lynn R. Webster, M.D., clinical researcher and president of the American Academy of Pain Medicine.
“All people with chronic illness, whether they have heart disease, diabetes or cancer, are also at risk of having chronic pain,” he says. “Opioids may be one of the medications that are prescribed. We know that we have a prescription drug problem in this country and a tragic number of people die from the use of these medications.”
The misuse and abuse of prescription painkillers accounted for more than 475,000 hospital emergency room visits in 2009. Worse yet, nearly 15,000 people died from prescription painkiller overdoses in the United States in 2008, more than cocaine and heroin combined, according to the latest figures from the Centers for Disease Control and Prevention.
Still, pain medicines help make it a fair fight. Webster offers the following tips on how to use opioids safely and responsibly:
* Never take a pain pill that isn't prescribed. The strength or dosage may not be appropriate or you may react differently than someone else.
* Never take more medicine than prescribed. “A lot of people think if you take one pill, you get some relief, so two can be acceptable,” Webster says. “That's not the case with opioids. It can be lethal if you take more than what has been instructed or directed.”
* Avoid drinking alcohol because it increases the toxicity of opioids.
* Tell your doctors about all medicines you've been prescribed to prevent adverse drug reactions.
* Record the time the opioids are taken to avoid accidental overdoses.
* Store opioids under lock and key because they can be tempting to guests or family members.
* Talk with your local pharmacist about how to properly dispose of leftover medicines.
Pain pills are only half the story when it comes to managing chronic pain. Other treatments to consider include:
* Exercise: With limited mobility, muscles can weaken and become achy. So movement is important. Ask your healthcare provider to refer a physical or occupational therapist who can create an exercise program for your loved one and help you move the person's arms and legs to prevent atrophy and further discomfort.
* Belly breathing: Breathing from your diaphragm or abdomen activates your central nervous system, which releases endorphins, your body's own painkillers or natural opioids. Breathing from the chest—what many people do when tense—doesn't achieve the same results.
* Tension reduction: When overloading or stretching muscles then releasing them, you will experience a greater level of calmness and relaxation. If possible, try yoga.
* Visualization: Picture something pleasant, maybe a happy memory or lying on your favorite beach, to help calm you when anxious or afraid.
* Music therapy: Listen to your favorite music or nature sounds in a quiet room without any distractions for 10 to 20 minutes each day. (Consider wearing headphones to eliminate external noise.) Or make music. Play the guitar or piano. But don't give your brain other jobs to do at the same time like watching TV because it will diminish the effectiveness.
* Happy moments: It's easy to become consumed by pain. Don't forget about the rest of your life. Engage in activities you enjoy like visiting your grandchildren, seeing a movie or dining at your favorite restaurant with friends.
Source: Geralyn Datz, Ph.D., Southern Behavioral Medicine Associates
Since all medicines have toxicities, Webster suggests starting with the safest pain medications first. If the pain gets worse, call your healthcare provider. While trained to handle most levels of pain, your doctor may refer you to a pain specialist who can offer alternative therapies.
While drugs certainly help minimize pain, so can a caregiver's attitude.
“The key issue is that people who experience pain need to be believed,” Webster says. “Our mind has the ability to help us reduce about 30 percent of our pain just by the right thought processes and relationships we have with our family. That is often more therapeutic than any medicine.”
Science backs up his claim. A 2005 study—The Spouse Response Inventory by Schwartz, Jensen and Romano—involved 104 patients with chronic pain, asking them to complete a questionnaire about how their spouse responds to their pain behaviors, such as groaning. Researchers found that patients were often more severely depressed when spouses responded negatively to their pain, criticizing them or becoming irritated. But when spouses responded positively, the opposite occurred.
More recent research also produced similar results. One study conducted between 2012 and 2013 at Wayne State University involved 128 romantic couples, explains Laura Leong, Ph.D., a clinical psychologist in Toronto who conducted the study.
One partner from each couple was asked to dip his or her hand into a basin of cold water, which induced pain. Half of the other partners were asked to feel and behave empathically.
“The pain participants reported feeling significantly less pain than the people whose partners did not receive this special instruction,” Leong says. “The take-home message is that if a spouse feels more empathy for his or her partner, it can help the partner feel less pain and also feel better understood and supported emotionally.”
So can instilling hope, adds Geralyn Datz, Ph.D., a clinical psychologist at Southern Behavioral Medicine Associates in Hattiesburg, Miss. Roughly 90 percent of her patients experience some form of chronic pain. She says many caregivers don't understand pain and may be overwhelmed with their responsibilities so they search for a cure instead of accepting and validating the individual's pain.
“You can't know another person's pain, and a lot of [caregivers] think it can't be that bad,” Datz says. “Ask that person what would be helpful to them right now. There is going to be discomfort, tears and bad days.”
Sometimes, pain can be the result of high anxiety. Datz says many admissions to hospital emergency rooms for chest pain are not related to a heart attack or other cardiac issues. Anxiety is often the culprit.
An often simple yet overlooked technique is recording pain events. Pain may be more intense in the morning versus the afternoon or during activities like bathing or dressing. This practice, Datz says, helps patients identify the best times to take pain drugs and possibly reduce the dose or frequency.
While chronic pain can be scary, it's not fatal. “It's the powerlessness that scares people,” says Datz. “Don't despair. Have hope that this is manageable.”
Anxiety and fear often make patients more sensitive to pain, says Josephine Briggs, M.D., director at The National Center for Complementary and Alternative Medicine at the National Institutes of Health in Bethesda, Md.
There is a link between migraines and cardiovascular disease, says Alexander Feoktistov, M.D., Ph.D., director of clinical research of headache and pain management at Diamond Headache Clinic in Chicago.
He explains that migrainers—people suffering from migraine headaches—have a slightly higher risk of developing heart disease. It's important for people with a history of ischemic heart disease, heart attacks or strokes—who already have constricted vessels—to avoid some pain medicines. He points to triptans, which are used to treat migraines, as examples, because they further narrow blood vessels in the brain to relieve swelling but may cause a stroke.
Sometimes, stroke patients or those with other disabling conditions can develop an excruciating headache, called a thunderclap headache. It's often accompanied by nausea, vomiting or sensitivity to light or noise. Don't ignore it.
“This headache is a result of a hemorrhagic stroke,” Feoktistov says. “Frequently, patients develop mental status changes where they become confused and disoriented. Those are all red flags that the patient is to be brought to the emergency room.”
Another source of trouble can be over-the-counter drugs that contain acetaminophen or ibuprofen (Tylenol™ or Advil™). If patients take too much for too long they can develop rebound headaches, which are chronic, more severe and more resistant to treatment.
Feoktistov says it's important to understand the origin of a headache or what's contributing to the pain. “Never disregard [a headache] or brush it off,” he says. “Headaches can be a symptom of an underlying condition.”
“The Center is currently supporting a number of studies on alternative treatment approaches that involve mindfulness-based stress reduction,” she says, adding that one research program is focusing on the brain's role in perceiving, modifying and managing pain.
“Attention to the emotional states and all the things that go along with pain is a big part of pain management,” Briggs says. “The emotional state of the caregiver is really an important part. To be reassuring, [establishing] a supportive environment in which the fears of the patient are being addressed, is very much what some of these nontraditional approaches emphasize.”
Likewise, don't dwell on the pain. Do something, try anything. And never throw in the towel. Working proactively with healthcare providers can be very therapeutic, she says.
One of the most important points for caregivers to understand is that chronic pain impacts every aspect of the patient's life, including sleep, which is when your body repairs itself, says Ellen Slawsby, Ph.D., clinical psychologist at Pain Management Services, Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital in Boston.
She helps many patients and caregivers integrate alternative approaches into the patient's daily ritual to minimize stress or anxiety that can exacerbate pain.
One effective approach is taking full, deep breaths from 5 to 30 minutes, before or during stressful experiences like doctor visits. Do them in the car or the waiting area at the doctor's office. Find a word or phrase that helps calm or center you, repeating it with each deep breath. Some people even count their breaths.
Also consider restructuring negative thoughts. Chest pain, for example, doesn't necessarily signal a heart attack. Slawsby teaches pain patients how to replace fear with evaluation: What is real? Maybe the chest pain is the result of walking up a flight of stairs or arguing with a family member. Maybe there's no need to be distressed. Patients choose their responses, she says, instead of a knee-jerk reaction.
In this culture, many people want a quick fix. They prefer to take a pill and avoid the hard work—caring for themselves. Caregivers need to step in, she says, and encourage loved ones to walk to a neighbor's house instead of driving, eat healthy meals and perform relaxation techniques. Just like it's easier to quit smoking when paired with another smoker, she says caregivers should also practice relaxation techniques alongside their loved one to alleviate their own daily stress.
“The lovely thing is if caregivers start engaging in these techniques, they're going to feel better,” says Slawsby. “These stress management techniques and tools are good for everybody.”