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Pain Action Guide

Reading this could help ease your pain.

As a person with pain, you have:

• The right to have your report of pain taken seriously and to be treated with dignity and respect by doctors, nurses, pharmacists and other healthcare professionals
• The right to have your pain thoroughly assessed and promptly treated
• The right to be informed by your doctor about what may be causing your pain, possible treatments, and the benefits risks and costs of each
• The right to participate actively in decisions about how to manage your pain
• The right to have your pain reassessed regularly and your treatment adjusted if your pain has not been eased
• The right to be referred to a pain specialist if your pain persists
• The right to get clear and prompt answers to your questions, take time to make decisions, and refuse a particular type of treatment if you choose

Although not always required by law, these are the rights you should expect, and if necessary demand, for your pain care.

How serious is the pain problem?

More than 50 million Americans suffer from chronic pain, and each year another 25 million experience acute pain from injuries or surgery. Although most pain can be greatly eased with proper pain management, much of it goes untreated, undertreated, or improperly treated. No one should have to suffer needlessly when the knowledge and ability to manage most pain is available.

Once your pain is under control, you’ll be able to sleep better, focus on work, enjoy relationships with family and friends, and take part in social activities. Also, if your pain has been caused by an injury or surgery, your recovery may be faster once your pain is managed.

Finding good pain care and taking control of your pain can be hard work. Learn all you can about pain and possible treatments. Be persistent, insist on your rights, and don’t give up.

New pain standards for healthcare facilities

Most hospitals, nursing homes, and other healthcare facilities are now required to assess and treat pain, as well as inform patients about their rights to effective pain care under new pain management standards set by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) that went into effect on January 1, 2001.

Know the facts

• Pain is not something you “just have to live with.” Treatments are available to lessen most pain. If untreated, pain can worsen other health problems, slow recovery, and interfere with healing. Get help right away. Don’t let anyone say your pain is “in your head”
• Not all doctors know how to treat pain. If your doctor is unable to treat your pain effectively ask him or her to consult with a specialist, or consider switching doctors
• Pain medications rarely cause addiction. Morphine and similar pain medications, called opioids, can be highly effective for certain conditions. Unless you have a history of substance abuse, there is little risk of addiction when these medications are properly prescribed by a doctor and taken as directed. Physical dependence—which is not addiction—may occur as a result of taking these medications. If you need to stop these medications, it is wise to taper off them gradually
• Most side effects from opioid pain medications can be managed. Nausea, drowsiness, itching, and other side effects caused by morphine and similar opioid medications usually last only a few days. Constipation, the most difficult to manage side effect, can usually be relieved with laxatives, adequate fluid intake, and attention to diet.
• If you act quickly when pain starts, you can often prevent it from getting worse. Take your medications when you first begin to experience pain. If your pain does get worse, talk with your doctor. Your doctor may safely prescribe higher doses or change the prescription. Non-drug therapies such as relaxation training and others can also help give you relief.

How do I talk with my doctor or nurse about pain?

1. Speak up! Tell your doctor, nurse, or social worker that you’re in pain. It's not a sign of weakness to talk about your pain.
2. Tell your doctor, nurse, or social worker where it hurts. Do you have pain in one place or several places? Does the pain seem to move around?
3. Describe how much your pain hurts. Use a scale from 0 to 10, where zero means no pain at all and 10 means the worst pain you can imagine. Explain when your pain is the highest, lowest and how it is right now.
4. Describe what makes your pain better or worse. Is the pain always there? Does it go away? Does it get worse when you move in certain ways? Do other things make it better or worse?
5. Describe what your pain feels like. Use specific words like sharp, stabbing, dull, aching, burning, shock-like, tingling, throbbing, deep, pressing, etc.
6. Explain how the pain affects your daily life. Can you sleep? Work? Exercise? Participate in social activities? Concentrate? How does it affect your mood?
7. Tell your doctor, nurse, or social worker about past treatments for pain. Have you taken prescription medication or had surgery? Tried massage? Applied heat or cold? Exercised? Taken over-the-counter medications? Vitamin supplements?

Tip: Write down your questions for the doctor or nurse before an appointment. Take notes at your visit. If possible, bring along a family member or friend for support.

How can I get the best results possible?

• Take control. Tell your doctor you’re in pain and take part in planning your treatment. Follow your pain management plan, ask questions, and speak up if treatment isn’t working. If necessary, seek other help. Be persistent
• Set goals. With your doctor, nurse, or social worker set realistic goals for the things you most want to do such as sleeping, working, exercising, enjoying sexual relations, etc. Begin with the easiest goals first
• Work with your doctor, nurse, or social worker to develop a pain management plan. This might include a list of medications, when to take them, and possible side effects. It may include therapies other than medication, such as meditation. Make sure you understand the plan and carry it out fully. If you don’t, you are less likely to get relief
• Keep a pain diary. Write about your level of pain at different times, how you're feeling, and what activities you can and cannot do. Keep a record of medications you're taking or any non-drug treatments. Bring the diary to your doctor visits
• Ask your doctor, nurse, or social worker about non-drug, non-surgical treatments. These could include relaxation therapy, exercise, massage, acupuncture, application of cold or heat, behavioral therapy, and other techniques
• Ask your doctor, nurse, or social worker about ways to relax and cope with pain. Your pain may feel worse if you are stressed, depressed, or anxious
• If you have questions or concerns, speak up. If you’re worried about medications or other treatments, ask your doctor or nurse. If your treatment is not working, insist that your pain be reassessed and new treatments offered. Be polite, but be firm
• If you’re having surgery, ask your doctor for a complete pain management plan beforehand. Don’t wait until after the operation to ask about your pain care
• If you’re a patient in a hospital or other facility and you’re in pain, speak up. Ask a doctor or nurse for help. If you don't get help right away, ask again. If you still don’t get help, speak to a social worker or patient advocate. As of January 1, 2001, most hospitals and healthcare facilities are required to assess and treat your pain
• Pace yourself. Once you experience some degree of control over your pain, don’t overdo it. Your body may be out of condition. Take time to gradually build up to normal activity
• If you’re not satisfied with your pain care, don’t give up. Does your doctor listen to you? Is he or she able to assess and treat your pain? If after a reasonable time the answer is “no,” ask for a referral to a pain specialist, or find another doctor.

Where can I find help?

• Start with the American Pain Foundation's website at www.painfoundation.org. If you don’t have access to a computer, call their toll-free number, 888-615-PAIN (7246)
• To find a local support group for chronic pain, contact The American Chronic Pain Association at www.theacpa.org or call 916-632-0922
• If you wish to become active in your state’s Pain Initiative Movement, visit the American Alliance of Cancer Pain Initiatives website at www.aacpi.org or call 608-265-4013

If you want to find a pain specialist:

• Ask your doctor for a referral to a good pain specialist or pain clinic
• Ask family, friends and co-workers who have had pain for a recommendation
• Ask the largest local hospital or medical school in your area if they have a pain team or can suggest a good local pain specialist or pain clinic
• If you are under a managed care program, call your representative and ask for their list of approved pain specialists
• Call a local hospice, even if you don’t need hospice care, because they can often suggest doctors who are good at pain management

Tip: Ask if the doctor belongs to any pain-related medical societies or has had special training or certification in pain medicine. Please visit www.painfoundation.org or call for information about professional organizations and certifying programs.

About the American Pain Foundation

The American Pain Foundation is an independent, nonprofit organization serving people with pain through information, education and advocacy. Their mission is to improve the quality of life for people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.

For information, please visit their website at www.painfoundation.org, call their information line at 888-615-PAIN, or email info@painfoundation.org. On their website you will find information about the causes of pain, treatment options, ways to find trained specialists, peer support, and how to cope with pain.

Their website also links to over 200 carefully selected websites on pain and related topics. If you are unable to access the Internet and need more information, write to them at:

American Pain Foundation
201 N. Charles St., Suite 710
Baltimore, MD 21201-4111

Reprinted by Permission of the American Pain Foundation
(Copyright 2000-2001 American Pain Foundation.)