People living with chronic pain have a variety of medical and non-medical health care providers to choose from, including primary care physicians, anesthesiologists, physiatrists, pain medicine specialists, rheumatologists, chiropractors, acupuncturists, massage therapists, and many others. Many of you have seen multiple specialists and still have considerable pain. The likelihood is that you will end up where you started—with your primary care provider.

Challenges in Primary Care
After you’ve had chronic pain for an extended period of time and have run the gamut of tests, treatments and specialists, where can you turn? Your primary care provider may be a logical choice. Your primary care provider often knows you and your family because of years of treatment for common problems (eg, coughs, ankle sprains) as well as chronic medical illnesses (eg, diabetes, hypertension). The issue then becomes how you can best communicate and interact with your primary care provider, especially when he or she often has the least expertise in pain and the least time to deal with the problem. Knowing how to interact with your doctor, nurse practitioner, or physician assistant can help you avoid frustration.

Primary care providers practice differently than in the times of Marcus Welby, MD. We would all like the compassion, thoughtful care, time and commitment shown by Dr. Kildare, but the practice of medicine has changed. During your 15-minute office visit, your doctor must answer phone messages, deal with prescription refills, review lab results, take care of emergencies, oversee nurse practitioners and take care of you. Is it any wonder that 15 minutes seems like a shorter period of time than in the past?

In addition, many patients may not understand why a primary care provider will not order an MRI or prescribe the latest medication advertised on television. These issues — which create friction between doctors and patients — lead to much dissatisfaction within both groups. It’s important to remember that some decisions are not always the doctor’s choice. Managed care, health insurance and Medicare restrict access to expensive procedures and the newest or most expensive drugs.

We can lament the deplorable state of medicine today and get angry at our health insurance or the managed care organization, but the reality is that you have a medical problem causing pain. Your primary care provider has not chosen to limit your access to tests or drugs, but he or she may deny access because of insurance issues. There is a place for complaining and standing up for your right to quality medical care, but being angry with your doctor will not get you the results you want. It may get you the requested MRI, but it leaves you with an adversarial relationship with one of the best advocates for your care — the primary care provider.

What Can You Do?
Given the realities of medical practice today — a reality that often is dissatisfying for both the doctor and the patient — what can you do? You are the person suffering with pain. What’s the best way to deal with medical care and your primary care provider?

Following are some tips and suggestions that can help you find your way through the maze of medical care and improve your pain.

Managing Your Pain
Once you have been seen, tested, referred, and treated again and you still have pain, the likelihood of your pain having an easy fix is small. Chronic pain patients rarely have their pain go away completely. Even the most sophisticated treatment in major pain centers may only relieve pain by about 30%.

Understanding that you may not have an easy solution should not be seen as a prognosis of endless suffering, but rather acknowledgement of the reality of your medical condition.

For example, if you are diagnosed with diabetes, you may be unhappy and ask for another test or a second opinion, but accepting the reality that you have diabetes allows you to adapt to your disease. With diabetes, you must learn a new diet, an exercise regimen, home glucose monitoring, and other adjustments in lifestyle. Similarly, a person with chronic pain must learn new skills such as pacing activities, work modification, or different leisure activities. Pain may change your independence. If the pain is in your back, you many not be able to sit for prolonged periods of time, lift your children, sleep through the night or work 60 hours a week.

If you do not adapt to the realities of diabetes, you suffer the consequences, including pain, fatigue, poor overall health and a shorter life span. If you do not adapt to chronic pain, your pain increases and your life becomes more restricted. You spend more time recovering from flare-ups and have less quality of life.

Your doctor may suggest lifestyle modifications that he or she unfortunately may preface with the words, “You will need to learn to live with this pain.” Doctors should never tell patients these dreaded words. We do not tell patients, “You will need to learn to live with your diabetes.” Instead, we say, “I am sorry to have to inform you that your test shows you have developed diabetes. Now let’s work together to get control over this disease.” This is what health care providers should say about chronic pain as well. At the same time, you should understand that an endless search for a total fix — a fix that is extraordinarily unlikely — only delays the needed lifestyle changes.

Ensuring There’s Enough Time
Doctors never have enough time and people in pain need more time. Try to schedule your next appointment for the first appointment in the morning or the last appointment in the afternoon. The first and last appointments of the day often get more time. The appointment is still just 15 minutes, but your doctor probably isn’t late for the first appointment and will not make you feel as rushed. The last appointment gets more time because there are no more patients to see after your visit.

Organizing Information for Your Appointment
Chronic pain often is complicated by other problems, including insomnia, depression, anxiety, disability and other medical issues. All of these problems are important and you expect them to be addressed during your appointment. The National Pain Foundation’s Personal Pain Inventory can help you organize your medical history and the Personal Pain Journal can help you track good and bad days and activities and flare-ups.

• Write down and prioritize the issues you need to discuss with your provider. This list will help keep you and provider focused. If there isn’t time to address everything, you can discuss less important issues during the next visit. It is better to have your concerns dealt with appropriately rather than rushed through to cover everything.
• Make a list of your medications. It’s important to write down what you are taking, what you have tried in past, what works or doesn’t work, and what has caused a bad reaction. We all expect our providers to have comprehensive notes and an infinite memory of our last interaction. I know I expect that when I see my doctor; however, such information isn’t as easy to access as you might expect. You may have called in with a problem and your doctor changed your medication over the phone or, if you visited the ER, another provider may have made changes. This means your medical record contains a series of notes and information from more than one source. Because time is critical, make it easier by keeping your own list of medications so the provider doesn’t have to spend time looking for them in the chart.
• If your doctor has outlined a list of options and future trials for your pain management, bring the list with you to each visit. This way you both will know where to go with the next treatment.

Scheduling your Next Appointment
Your provider may suggest scheduling appointments only if problems develop. Chronic pain is persistent and requires regular office visits, just as patients with diabetes or hypertension need regular visits. If your doctor does not suggest a recheck appointment, gently ask if it would be okay if you schedule another visit in four to six weeks. A regularly scheduled appointment not only allows you and your provider to address other items on your list, discuss new problems or follow up with any other concerns, but also to monitor the medications you are taking.

Special Considerations Regarding Opioids
Pain specialists often prescribe opioids (eg, narcotic medications) for chronic pain. Primary care providers, however, often are uncomfortable with these medications. Even if your pain specialist has prescribed opioids for long-term pain management, your primary care provider may refuse to continue this treatment.

Opioids can make pain worse in patients with chronic daily headaches. Opioids also are not recommended for patients with fibromyalgia, as noted in recent guidelines published by the American Pain Society. Doctors, especially in primary care, may feel that the risks outweigh the benefits of opioids — not only for the patient, but also for themselves. Doctors believe that state medical boards and the Drug Enforcement Administration (DEA) are monitoring their prescribing practices more than ever before.

It’s important to understand several key issues related to the use of opioids that can help you discuss this topic with your primary care provider.

• Follow the instructions. Make sure you follow the instructions of your doctor. By prescribing a medication, your doctor believes you have entered into an agreement with him or her. Most doctors take this agreement very seriously and you should take it seriously as well. If your medication is prescribed to last 30 days, you should not run out before then. Taking extra medication and calling in early for refills alerts the provider to a possible problem. If you have a pain flare and need more medication, discuss this with your provider.
• Track your activity. Opioids are used to reduce pain. One of the ways your doctor determines how useful the opioids are is by monitoring your function. Opioids should increase your activity. For example, if opioids are working, you should spend less time resting and more time engaged in social activities and family interactions and possibly even return to work. Track your activity so that you can give an accurate picture of your activities to your provider. Taking morphine may decrease your pain, but if your function does not improve, it will not be enough to continue the opioid. Increasing function is the key to success in any treatment for chronic pain, and it is your responsibility to follow and report on your function.
• Allow time for your provider to get to know you. You may want opioids because they worked when you went to your pain specialist, but your primary care provider may refuse to prescribe them. Your provider’s denial may be dogmatic — he or she may say, “I never prescribe opioids to patients,” or it may be related to fear about the drugs. Allow the doctor time to get to know you and get comfortable with your situation. After this period of familiarity, there may be an opportunity to talk about opioids with your provider. The best way to do this is by suggesting a short-term trial of the opioid and outlining the functional outcome you hope to achieve (eg, see the kids play soccer, return to work). Working with your doctor and starting a conversation may lead to a trial of these drugs.

A Lasting Partnership
Despite rapid advancement in pain research and treatment options, patients and doctors are increasingly frustrated with chronic pain, especially in the primary care setting. The vast number of people living with chronic pain and the lack of providers trained in pain management means that primary care providers must work with those suffering with this chronic disease. In my view, returning the care to the primary provider is best — primary care providers often know the patients better than any other provider. There is no doubt that we primary care providers will need to learn about the new treatment options available to treat this disease. Updating and education is a way of life for primary care.

At the same time, patients must assume more responsibility in their care, which is the key to recovery. The best diabetic care provided by national experts will fail miserably without patients taking an active role in diet, exercise, weight loss, medications and glucose monitoring. All chronic disease management requires active patient involvement. It is not enough to take your medication and go to your chiropractor for an adjustment. These treatments may help, but without exercise, depression management, attention to family interactions, and pacing your activities, treatment will fail. Both you and your provider have responsibilities that will lead to adapting to a life with pain. This new life may not be what you would have chosen — no more than a person chooses diabetes — but with adaptation to chronic pain, meaningful, vital life is very much possible.