Living a Healthy Life with Chronic Pain (28 page)

G
OOD COMMUNICATION IS A NECESSITY
when you have a long-term condition. It is the lifeblood of all relationships, and relationships are a lifeline to healthy coping when you are self-managing chronic pain. Your health care team in particular must understand you. And when you don’t understand advice or recommendations from your doctors and other health professionals, serious problems can result.

One of the keys to getting good health care is to communicate well with your health care providers. This important self-management tool can be a challenge. You may be afraid to talk freely or feel there is not enough time during an appointment. Health professionals may use words you do not understand, or you may not want to share personal and possibly embarrassing information. These fears and feelings can hinder communication with your providers and harm your health.

Providers share the responsibility for poor communication. They sometimes feel too busy or important to take the time to talk with and know their patients. They may ignore or tune out questions. Their actions or inaction might offend you.

Although you do not have to become best friends with your providers, you should expect them to be attentive and caring. You also want them to be able to explain things clearly. But explanations aren’t always easy with chronic pain conditions. Providers are often perplexed about this complex health problem. You may think that you can only get the best care by going to specialists. This may be true in some cases, but it can also greatly complicate the care you receive. You may be seeing several specialists. They may not get to really know you and may not be aware of what your other care providers are doing, thinking, or prescribing. These are good reasons to have a primary provider, or a medical “home.” A relationship with a health care provider is much like a business partnership or even a marriage. Establishing and maintaining this long-term relationship may take some effort, but it can make a large difference to your health.

Many of us would like our healthcare providers to be like warmhearted computers—gigantic brains, stuffed with knowledge about the human body and mind (especially ours). We want our providers to analyze the situation, read our minds, make a perfect diagnosis, come up with a treatment plan, and tell us what to expect. At the same time, we want them to be warm and caring and to make us feel as though we are their most important patient.

Most providers wish they were just that sort of person. Unfortunately, no one provider can be all things to all patients. Providers are human. They have bad days, they get headaches, they get tired, and they get sore feet. They have families who demand their time and attention, and they may get frustrated by paperwork, electronic record keeping, and large bureaucracies.

Doctors and other health care professionals entered the health care system because they wanted to help people, and they took extensive training in order to be able to do so. They may be frustrated when they do not have all the answers about chronic pain. Many times they must take their satisfaction from improvements rather than cures, or even from slowing the decline of some conditions. Undoubtedly, you have been frustrated, angry, or depressed about your condition from time to time, but your doctor and other providers have probably felt similar emotions about their inability to cure your condition. In this, you are truly partners.

To keep the lines of communication open, be clear about what you want from your providers. You should feel comfortable expressing your fears, asking questions that you may think are “stupid,” and negotiating a treatment plan to satisfy you both.

Doctors and other providers are typically on very tight schedules. This becomes painfully clear when you have to wait in the doctor’s office because of an emergency or a late patient that has delayed your appointment. This sometimes causes both patients and doctors to feel rushed. Time is a threat to a good patient-provider relationship. Both you and your provider would probably greatly welcome more face-to-face time. When time is short, the resulting anxiety can bring about rushed communication. “You” messages and misunderstandings
are common in these situations. (See
Chapter 10
,
pages 170
–
172
.)

One way to get the most from your visit is to take PART. This acronym stands for Prepare, Ask, Repeat, Take action. In this section of the chapter, we explain more about taking PART.

People with chronic pain are often referred to multiple health care providers. That’s because no single provider has all the answers. This means that you have appointments with people who do not know your pain history. The importance of communicating clearly and directly with all these providers cannot be emphasized enough.

Pain is a personal experience. The pain you have is only felt by you. Your pain can’t be compared to another person’s, and only you can know how much pain you feel, when you feel it, and how it affects you physically, emotionally, and socially. While this may sound very basic, think about the frustration you feel when you try to describe your pain to your doctor. Not easy, is it? At the same time, your doctor and other providers can be frustrated because they are desperately trying to understand your pain problem better. Very often, there are no blood screens, X-rays, or other tests to help them sort out the problem. Doctors can use these tools to rule out other diseases but they cannot use them to assess your pain. They are relying on your communication to help them. No matter what kind of pain you have, it is important to describe it and any related symptoms precisely. This reduces everybody’s frustration level. The following guidelines can help you gather detailed information about your pain that will make your visits with a healthcare provider more productive:

• Pain Profile:
  When you go to a doctor or other provider’s office, have a written “pain profile” with you so you are ready to answer questions about your pain. Whether you have had pain for six months or six years, it can be hard to remember details if you are not prepared. Before going to a new appointment, answer the questions in
  Figure 11.1
  on
  page 182
  . By being as specific as possible, you can help your doctor better understand the nature of your pain. This is part of being a good self-manager, because you are helping to develop the best plan of care for you. Once your health provider knows your pain history, you usually will not need to review your entire pain profile except to report changes.
  

• Pain Language:
  Although the word
  pain
  means many things to many people, specific kinds of words are commonly used for specific types of pain conditions. For example,
  throbbing
  ,
  pounding
  , and
  splitting
  are words frequently used by people who have headaches.
  Burning
  ,
  tingling
  , and
  jumping
  can describe pain that is associated with some kinds of nerve involvement. People with arthritis sometimes use the words achy, sore, or tiring. The words you use to describe your pain can sometimes point to a type of pain problem, so a rich vocabulary can be very helpful.
  Figure 11.2
  lists typical words to describe pain sensations and the emotions that pain can cause. Place a mark next to each one that describes your pain. If there are other words that you use to describe your pain, add them to the list. Bring the list with you when you see your doctor or other providers.
  

• Pain Intensity:
  Just as words describe the quality of your pain, numbers can help describe the intensity or strength of your pain. There are several ways to measure or monitor pain intensity with numbers. One is a 0 to 5 scale (
  Figure 11.2
  , top left). Another is to use a 0 to 10 scale, with 0 indicating no pain at all and 10 as the worst pain you have ever experienced (see
  Figure 11.3
  ). When the doctor asks, “How bad is your pain now?” you can answer, “Well, on a scale from 0 to 10, I’d say it’s a 5 or 6 right now.” That is much more precise than saying, “Well, it’s bad but not as bad as it gets.” A numbering scale provides a point of comparison. It is also a good way for you to monitor your pain levels when you are trying to pace your activities (see
  Chapter 6
  ,
  page 108
  ). It’s important to understand that your rating only applies to your pain, not anyone else’s. Your rating of 6 might be very different from another person’s rating of 6.
  

Figure 11.3

• Pain Effects:
  In addition to the pain profile, think about how pain affects your everyday physical, mental, and social functioning. Does it affect your ability to walk, sit, do personal care, or get in and out of bed or a chair? Can you complete job responsibilities, prepare and enjoy meals, participate in leisure and family activities, and enjoy sexual intimacy? This is all important information for your health care provider. Come to your appointments prepared to talk about the specifics of how pain affects your activities and your life.
  

If you have a chronic pain condition, you will likely have regular appointments with your primary care doctor or other members of your pain team. Before each of these appointments, prepare an agenda. What are the reasons for the visit? What do you expect from your health care provider?

Before every appointment, write a list of your concerns or questions. After you walked out of the provider’s office have you ever thought to yourself, “Why didn’t I ask about …?” or “I forgot to mention …” Making a list beforehand helps ensure that your main concerns get addressed. Be realistic. If you have 13 different problems, your provider probably cannot deal with all of them in one visit. Star or highlight the two or three most important items.

Give the list to your health care provider at the beginning of the visit and explain that you have starred your most important concerns. By calling attention to the starred items, you let the provider know which items are the most important to you. But by providing the complete list, you let the provider see everything in case there is something medically important that is not starred. If you wait until the end of your appointment to bring up concerns, there will not be time to discuss them.

Here is an example. Your doctor asks, “What brings you in today?” You might say something like, “I have a lot of things I want to discuss this visit” (glancing at his or her watch and thinking of the appointment schedule, the doctor immediately begins to feel anxious), “but I know that we have a limited amount of time. The things
that most concern me are my shoulder pain, my dizziness, and the side effects from one of the medications I’m taking” (the doctor feels relieved because the concerns are focused and potentially manageable within the appointment time available).

There are two other things you can do to prepare before your visit. List all your medications and their dosages and bring the list to all your appointments. If this is too difficult, put all your meds in a bag and bring them with you. Do not forget vitamins and over-the-counter medications and supplements.

The final thing to prepare is your story. Visit time is short. When the provider asks how you are feeling, some people will go on for several minutes about this and that symptom. It is better to be specific and succinct. Say, for example, “I think that overall my pain is about the same, but now I have more trouble sleeping and I’m feeling a bit depressed about things.” Be prepared to describe your symptoms in detail, including:

• When they started
  

• How long they last
  

• Where they are located
  

• What makes them better or worse
  

• Whether you have had similar problems before
  

• Whether you have changed your diet, exercise, or medications in a way that might contribute to the symptoms
  

• What worries you most about the symptoms
  

• What you think might be causing the symptoms
  

If you were given a new medication or treatment during a previous visit, be ready to report how it went. If you are going to several providers, bring the results of all tests you have had in the past six months.

In telling your story, talk about trends: Are you getting better or worse, or are you the same? Also talk about frequency and degree: Are your symptoms more or less frequent or intense? For example, “In general, I am slowly getting better. I mostly feel the pain first thing in the morning and after I go grocery shopping. Last week, though, my pain did not get better over the course of the day, which is why I’m here.”

Be as open as you can in sharing your thoughts, feelings, and fears. Remember, your provider is not a mind reader. If you are worried, explain why: “I’m worried that I may not be able to work,” or “I’m worried I have cancer because no one can find the cause of my pain,” or “My father had similar symptoms before he died.” The more open you are, the more likely your provider can help. If you have a problem, don’t wait for the provider to “discover” it. State your concern immediately. For example, “I’m worried about this mole on my chest.”

The more specific you can be (without overdoing it with irrelevant details), the clearer a picture your health care provider will have of your problem, and the less time will be wasted for both of you.

Share your hunches or guesses about what might be causing your symptoms, as they often provide vital clues to an accurate diagnosis. Even if it turns out that your guesses are not correct, it gives your provider the opportunity to reassure you or address your hidden concerns.