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1 Understanding Chronic Pain

Jim was forty-six when he had the accident at work. He and Mary had been married for twenty-two years at that point and had deep, abiding love for one another and their two kids, Mandi, age twenty-two, and Ross, age sixteen. Jim worked as a psychologist in private practice, doing consulting for a large hospital. The accident happened when Jim was in front of the hospital. A disgruntled family member got into an altercation with an employee, and Jim tried to intercede. He was thrown to the floor, fracturing his back and rupturing two discs, they would come to learn. “Why hadn’t he just minded his own darn business?” Mary would find herself asking late at night when she was unable to sleep. She would become enraged that their life had been irrevocably damaged that day, all because her gallant husband felt the need to be a hero.

Amy and Chris had been together for four years. Things had started off idyllically—they clicked immediately and had similar goals of success, romance, and eventually marriage and kids. Now, after her diagnosis of fibromyalgia, there was only a shell of their relationship. They didn’t go out, have fun, or even relate to one another. They couldn’t talk without fighting, it seemed. Amy felt that deep in Chris’s heart, he didn’t believe she really hurt like she did. He just didn’t get it. Neither did her mom, her boss, or most of her friends. Chris felt powerless to help her and frustrated that she didn’t seem to want to help herself. In the last nine months—since the prescriptions took hold— she was downright stoned a good part of the time. He’d be damned if he’d put up with a drug addict in his life.

These two families are confronting chronic pain, and in this book their stories will help us to illustrate the challenges of living with this widespread but underrecognized phenomenon. It is estimated that more than 70 million Americans are afflicted with chronic pain. Each person’s journey is different, but some common themes run through them all. As with Jim and Amy, when a person develops chronic pain, everyone that person lives with or has a close relationship with is likely to suffer.

A range of difficult and stressful emotions often accompany the pain problem, such as fear, helplessness, frustration, anxiety, depression, grief, and anger. Lifestyle changes and prolonged stress brought on by Jim’s condition are taking a heavy physical, mental, emotional, and spiritual toll on Mary, Mandi, and Ross, and causing communication to break down. Chris’s attitudes toward Amy’s pain and her dependence on prescription painkillers have caused a rift between them and threatened their relationship. But there are many things families can do to better cope with the unbalancing effects of chronic pain. A good starting point is to learn as much as you can about chronic pain and your family member’s specific condition.

A Pain Primer

Pain is an intriguing phenomenon, the source of consternation, irritation, and suffering for millions since the beginning of time. It alerts us that something is wrong—that there is damage or threat of damage to our tissues. Pain is usually produced at the site of an injury and is processed in our complex, computerlike nervous system, causing a vast array of physical and emotional responses. The simplest response is to withdraw from the source of pain and then to protect the area that hurts.

Pain occurs in the body as a result of the interaction of nerve cells, the spinal cord, and the brain (together known as the nervous system). Interactions of a multitude of chemicals, including endorphins, prostaglandins, and neurotransmitters, with electrical impulses coming from the nerve cells create the pain experience, and also pain relief. The brain is exquisitely complex. The part of the brain that processes pain impulses, mainly the thalamus, interacts with other areas of the brain that govern memory, emotions, alertness, movement, blood pressure, hormone levels, and hundreds of other functions. The net effect, in a split second—a composite result of many inputs and outputs—is the experience of pain. Needless to say, this system is efficient beyond that of the most sophisticated computer; however, in the case of chronic pain, the system has gone awry.

There are two types of pain, acute and chronic. In acute pain, the computer functions properly, as it was meant to. With chronic pain, on the other hand, it is as if the computer has been affected by a nasty virus, turning previously healthy and necessary mechanisms into overactive and inefficient impulses that disrupt normal function. Acute pain is time-limited—usually gone within a few hours to days. It may last weeks to a few months, but it eventually goes away. Acute pain can be associated with fractured bones, sore teeth, bruises, cuts, surgeries and their aftermath, infections, and a variety of other injuries and conditions. It exists when there has been damage, and as the damage heals, the pain subsides and eventually resolves, and life returns to the way it was before. Acute pain is part of the body’s “response-to-injury” system, which causes us to try to put an end to the offending, pain-causing experience. We also learn from painful experiences and are less likely to do something that causes pain (although later, as we explain addiction, you will see that this is not true in all cases).

Chronic pain continues beyond three to six months and has outlived any useful function. It should have gone away, but persists. It is the exaggerated response of the nervous system to damage, as in Jim’s case, but also to other conditions and situations that occur in the brain, as Amy experiences. It is often pain out of proportion to the prior injury or damage. Sometimes a condition will develop for no apparent reason, and there is not even a clear physical basis for the protracted pain. This is not to say that the pain is in any way unreal or imagined, which was the crux of the problem for Chris, who just didn’t buy that Amy’s pain was real. In actuality, Amy’s body simply responded differently over time to certain conditions, damage, or injury. The result is pain that won’t quit.

Pain, as we experience it, is the net effect of tissue disturbance, transmission to and from the brain, and extensive processing and modifying of the pain signal. With chronic pain, the signal and its transmission are often distorted. So, despite the fact that Jim’s broken back had healed and the “need” for pain (protection, withdrawal, avoiding further injury) had passed, he still was hurting.

Chronic pain is usually neuropathic, meaning associated with disturbances of the nervous system. Often the character of chronic pain differs from that of acute pain (called nociceptive pain), which is usually sharp, aching, or throbbing, and comes from sprains, fractures, burns, bruises, or other forms of tissue damage. Jim experienced a burning sensation and troublesome numbness, especially traveling into his right leg. Neuropathic pain can have a lightning-bolt sensation or an electrical quality. With neuropathic pain, people may experience allodynia, which is pain from something that normally doesn’t cause pain, such as light touch or a breeze across the skin. Also associated with neuropathic pain is hyperalgesia, meaning more pain than would normally be caused by a stimulus. This kind of pain may be difficult to localize, and the source of the pain may be widespread or changing. Amy had excruciating tenderness at certain trigger points, a hallmark of fibromyalgia.

Chronic pain is pain that continues beyond three to six months, has outlived any useful function, and may or may not have a clear physical basis.

Amy’s pain, as with many others who experience chronic pain, was a part of a phenomenon called central pain. This is the result of poorly understood changes in the nervous system’s perception of pain. With central pain, the “volume knob” for the perception of pain is turned up higher than normal. It is the increased “volume” that causes a normally light-touch sensation to be an awful sensation for Amy.

The worst news about chronic pain is that—though it may wax and wane—in most cases it doesn’t go away. Chronic pain is one of the major reasons people go to doctors and is said to be the most costly health care problem in America. Countless others like Chris, Mary, Mandi, and Ross are affected by living in a household with or caring for someone with chronic pain. Obviously, if you are reading this book, your life has been affected significantly by chronic pain.

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Who Is Your Person with Pain? __________________________________

You are probably reading this with a specific person, perhaps more than one person, in mind. Identify the person in your life who has chronic pain and describe your relationship with him/her/them.

From this point on, where you see _______________, write in the name of the person(s) you identified in this exercise.

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Types of Chronic Pain _________________________________________

Here is just a partial list of the many potential causes of chronic pain. Find the cause(s) of _______________’s pain and check it/them off or write them in the space provided if the causes are not listed.

____ Back, neck, and joint pain, which can result from tension, muscle injury, nerve damage, disc disease, or arthritis.

____ Burn pain, which can continue long after a burn wound has healed.

____ Chronic pelvic pain, which refers to any pain in your pelvic region (the area between your belly button and your hips) from tumors, infections, or scar tissue.

____ Cancer pain, which can result from the growth of a tumor with pressure on nerves, from treatment of the disease (chemotherapy or radiation treatments), or from other effects on the body.

____ Infections that didn’t respond to treatment, which can occur almost anywhere in the body.

____ Chronic abdominal pain (with or without physical explanation or findings), ulcers, gallbladder disease, pancreatitis, and gastroesophageal reflux disease (GERD).

____ Inflammatory bowel disease, irritable bowel syndrome, or other intestinal problems.

____ Bursitis, which can affect any joint, most commonly knees, shoulders, hips, elbows, or wrists.

____ Head and facial pain, which can be caused by dental problems, temporomandibular joint (TMJ) disorders, trigeminal neuralgia, or conditions affecting the nerves in the face.

____ Chronic headaches, such as migraines, cluster headaches, and tension headaches.

____ Multiple sclerosis, which can include numbness, aching, or pain.

____ Angina or chest pain from heart disease.

____ Uterine fibroid tumors (growths in the womb that can be associated with bleeding).

____ Chronic obstructive pulmonary disease (COPD) or emphysema.

____ Peripheral vascular disease (inadequate blood circulation to arms and legs).

____ Ankylosing spondylitis (severe arthritis with restriction of spinal movement).

____ Myofascial pain syndromes (heightened experience of pain coming from the brain, which impacts soft tissue and muscles). This includes fibromyalgia, which is characterized by tenderness in multiple trigger points, widespread muscle pain, fatigue, and stiffness.

____ Whiplash that doesn’t go away after an accident.

____ Broken bones that healed incompletely or in the wrong position.

____ Arthritis (rheumatoid, osteo, or other forms), which can affect any joint, including hips, knees, neck, back, fingers, wrists, and feet.

____ Neuropathy from a variety of conditions, including HIV/AIDS, injury, and cancer.

____ Other: ________________________________________________

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ALL PAIN IS REAL

Since chronic pain frequently cannot be seen or measured, unlike a broken arm (acute pain), doctors, colleagues, friends, or family members sometimes question or doubt the sufferer’s pain. Chris is a good example of this, doubting the validity of Amy’s fibromyalgia pain. In order to be helpful, it is extremely important to acknowledge that all pain is real. The nervous system is made up of electrical circuits modified by chemical neurotransmitters, and the sum total of how these billions of cells interact is our essence—our joy, fear, sight, smell, and all sensations, as well as the experience of pain.

The Subjective Nature of Pain

For some people, like Amy and Jim, chronic pain can be disabling, while for others it is merely annoying. Jim stays in bed when he hurts; Amy pushes through the pain some days and goes about her business. Each person’s unique experience of pain is based on many factors, including:

Age. Ethnicity.

Religion. Circumstances (context).

Stereotypes.

Prior experience with pain.

Gender.

Culture.

Environment.

Attitudes.

Social influences.

Hormone levels.

There are countless examples of how these factors can influence a person’s perception of pain. For instance, studies have identified a number of gender differences regarding pain perception. Women are likely to experience pain more often and with greater intensity, while men are less likely to seek help for and express their pain (suffering in silence with a “stiff upper lip”). Attitudes toward and expressions of pain also vary among different cultures. For example, Western cultures tend to have a much lower threshold for pain than some Asian cultures, where pain is viewed as having spiritual meaning.

Prior painful experiences can also influence pain perception. Jim expected to have so much pain at a family picnic, because he had previously, that he just refused to get up and go with Mary and the kids—another serious disappointment for this damaged family. In fact, Jim would come to learn that believing that his pain would be worse based on the last time he was up and around for four hours actually created more pain for him and more suffering for his family.

And just as the experience of pain is entirely subjective for Jim, the responses of Mary and the kids (and other family, friends, coworkers) to his pain vary widely.

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Pain Is Subjective _____________________________________________

Describe how the personal factors listed on the previous page may have affected _______________’s experience of pain. Include any factors not listed that you believe affected his or her pain.

Describe your personal issues and assumptions about pain. How do these things affect your feelings about _______________’s pain?

Manifestations of Chronic Pain

Chronic pain can be a troublesome annoyance or a devastating curse that interrupts life functions, relationships, employment, and most things in life that bring people satisfaction. In Jim’s case, it took over his life and the lives of his family, it consumed them, and it threatened Jim’s well-being and the well-being of Mary, Mandi, and Ross. For Amy, traditional pain management (medication and physical interventions) did not help sufficiently. She developed a constellation of troubling symptoms.

Pain Manifestations ___________________________________________

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Here is a list of some of the manifestations of chronic pain. Please check off those you believe _______________ has experienced.

____ Pain that has lasted for more than six months.

____ Feelings of depression, anger, worry, discouragement, and irritability.

____ Sleep difficulties.

____ Financial problems.

____ Problems relating to others, causing significant disturbance in relationships.

____ Inability to tolerate physical activities.

____ Withdrawal from social activities.

____ Inability to concentrate.

____ Poor memory.

____ Isolation from support systems, including family, friends, and coworkers.

____ A decrease in sexual activity or performance.

____ A decrease in self-esteem.

____ Secondary physical problems.

____ Problematic use of pain medications and/or alcohol or addiction.

____ Avoiding work and leisure activities.

____ Negative attitudes concerning everyday life.

____ Other: __________________________________________________________

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Write about the feelings that come up as you review this list.

The Pitfalls of Pain Management

Traditional pain management uses a multitude of interventions, including medications. Opioid medications are the primary drugs used to treat chronic pain and are often the cornerstone of pain management. Unfortunately, they carry with them a potential for side effects, decrease in function, and the development of dependence and addiction. The side effects of opioids may include cloudy thinking, drowsiness, depression, and sleep disturbance. In women, opioids and chronic pain can lower estrogen levels, even leading to early menopause and osteoporosis.

In some cases, increasing the dose of opioids can actually cause more pain, a phenomenon known as opioid-induced hyperalgesia (OIH) that occurs in some people who are on long-term opioids. The proper treatment of OIH is to discontinue opioid medications under medical supervision so the brain can “reset” and eliminate the hyperalgesic effect of the drugs.

It may amaze you to know that there are no scientifically reliable studies that justify the use of opioids for longer than three months, even though use of that length is standard operating procedure for treatment of chronic pain. There are a number of reasons for this disparity, but probably the best explanation is that opioids offer temporary relief to a permanent problem that is complex and difficult to treat. Doctors and drug companies have created an industry that promotes these powerful drugs for chronic pain, even though for many that is not the best course. Many people say they would never have started taking prescribed pain medication if they had known how much havoc it could wreak in their lives.

Additionally, as in Amy’s case, painkillers are frequently prescribed in conjunction with other habit-forming medications, such as muscle relaxants (specifically Soma), stimulants used for sleepiness caused by the opioids, antianxiety drugs, and sleeping pills. The use of medications to treat the effects of other medications can be extremely frustrating for people with chronic pain and their families. Amy ended up on so many medications that her quality of life was severely compromised, and she still had significant pain. As a nurse, Mary certainly knew that Jim was no longer benefiting from his medications, but felt helpless to change anything. After all, “he’s in pain and can’t stop them,” or so Jim told her whenever she brought it up.

Many medications are not habit-forming and may be prescribed as part of a pain management plan; these include muscle relaxants, antiseizure medicines, and antidepressants. Pain management also often includes invasive procedures such as injections (epidurals, facet blocks, and others) and surgeries, as well as nonmedication and nonsurgical techniques such as acupuncture, chiropractic, physical therapy, massage, and hydrotherapy.

Prescription Pain Medications

We’ve described potential problems with taking opioids for chronic pain. Here are the names of medications in this class and other classes of drugs with habit-forming potential:

Table 1.1a

There are a number of nonopioid medications that are used to decrease pain. Here’s a partial list:

Table 1.1b

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_______________’s Pain Management Experience _________________

List the medications that have been prescribed for _______________, as well as those he or she is using that are not prescribed (put a P next to those prescribed and an N next to those not prescribed). You can refer to the list in Tables 1.1(a) and 1.1(b).

Now list any substances _______________ has used in addition to medications.

Include alcohol, over-the-counter products, cigarettes, caffeine, and illegal drugs.

Finally, list any treatment modalities or procedures _______________ has used or undergone for pain management. Indicate “+” or “–” as to whether they were helpful or not.

As you read this chapter, your mind may be churning with frustration, fear, anger, and confusion. How did you get here, and what do you do now? Is there a way out? Indeed there is, so read on and get ready to work. In the next chapter, you will see more clearly how your life has become based on the well-being of your person with pain. And you will begin to see how you can move toward balancing your own life, regardless of how _______________ is doing.