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CHRONIC PAIN: INFORMATION RESOURCES ON THE INTERNET LISA A. MCGUIRE ABSTRACT. Chronic pain is pain that lasts longer than one month after onset, or pain that recurs after onset of injury or illness. Millions of Americans suffer from chronic pain conditions, whether from diseases such as diabetes or HIV infection, or as a result from injured nerves, bones, or other tissues. The socioeconomic burden of chronic pain is immense. Estimates of the economic impact alone from healthcare expenses, lost productivity, and lost wages are $100 billion annually. This article provides a general overview of non-cancer causes of chronic pain symptoms, conditions, disease burden, and treatments. Authoritative web sites for chronic pain information and patient resources are included. KEYWORDS. Chronic pain, pain medicine, pain management AUTHOR. Lisa A. McGuire, MLIS (email@example.com) is Liaison Librarian, Bio- Medical Library, University of Minnesota, 301 Diehl Hall, 505 Essex St. SE., Minneapolis, MN 55455. INTRODUCTION Feeling pain is a universal component of being human. Without the experience of pain, humans would find it difficult to recognize illness or injury. Sometimes we experience pain that lasts a short time and dissipates once the body heals. This is called acute pain. Other times we may have a condition that causes longer-lasting pain, this is referred to as chronic pain. Chronic health conditions such as fibromyalgia or diabetes often have chronic pain as a hallmark of that condition. Sometimes chronic pain is experienced without evidence of injury or disease. Whatever the source, chronic pain can be a debilitating condition for patients and their families. This article will focus its attention on non-malignant, or non-cancer causes of chronic pain. Chronic pain has been defined as pain that lasts more than one month after the onset of injury or disease, or pain that recurs off and on for a period of months or years, or is a result of an incurable health condition such as arthritis or diabetes. Pain symptoms can vary widely depending on the source of the pain. One of the cruel ironies regarding chronic pain is that the experience of chronic pain can desensitize the nervous system to the pain sensation. As pain is felt, nerves and cells that are used to send the pain signals to the brain are stimulated. The repeated stimulation that occurs with a chronic pain condition can cause these nerves and cells to remain active or “on’ all the time. This results in a person with a chronic pain condition having a lower threshold for painful stimuli than someone who does not experience chronic pain. Pain intensity is also affected by this constant stimulation of pain cells and receptors. Persons with chronic pain conditions may feel more fearful or nervous of experiencing pain. Constantly feeling nervous or anxious about experiencing pain increases production of prostaglandins, which can intensify the pain sensation.1 Pain incidence in the United States is staggeringly high. Recent estimates conclude that pain affects more Americans than diabetes, heart disease, and cancer combined. Data from national surveys show that among adults age 20 and over who reported pain, 42% of those reported pain that lasted a year or more. The most commonly reported pain locations included low back (27%), followed by headache or migraine (15%), neck pain (15%), and facial pain (4%).2 Back and lower extremity pain is exceedingly common in our modern world with a high rate of disability among active and sedentary people. Back pain can be localized in the spine, with injuries to the discs or bone. Back pain that spreads to the legs is called sciatica and is also very common. Hip and knee pain is often caused by arthritis or bursitis, while foot pain can be a result of damage to nerves (neuropathy), plantar fasciitis, or vascular diseases to name a few.3 Most of us will experience a headache at some point in our life but for millions of Americans headaches can be a weekly, monthly or even daily occurrence. Chronic, recurring headache conditions are often quite disabling. The World Health Organization ranks migraines as one of the top twenty causes of disability worldwide.4 Headaches that are the primary disorder include cluster, migraine, and tension-type headache. Secondary disorder headaches, or those that are a symptom of another medical problem include rebound headache and sinus headaches. No matter what the cause, recurring headaches are extremely costly to society. More than one million lost school days occur annually, with 160 million lost work days are due to headache disorders. The vast majority of chronic headache sufferers never seek treatment from medical professionals which results in headaches that become increasingly intractable and difficult to treat.5 Like back pain, pain in the shoulder or neck is also very common. Poor posture while sitting at a computer or straining the neck forward to better read a computer screen can be a cause of neck pain. Myofascial pain syndromes are a series of conditions with aching muscular pain as a hallmark.6 Repetitive strain and overuse injuries are also common causes of neck, hand, and wrist pain. One of the most common repetitive strain conditions is carpal tunnel syndrome. Often time these types of painful syndromes can be prevented by undergoing an ergonomic assessment in the workplace. Setting up a monitor, mouse and chair in the proper position can result in better posture and positioning of the head, neck, hand, and wrist that can prevent chronic pain due to occupational injuries. Persistent pain in the head, face, or neck may also be caused by what is referred to as a neuropathic pain condition. Neuropathic pain syndromes can be caused by trauma, medical illness such as diabetes or HIV infection, or repetitive injuries such as carpal tunnel syndrome, to name a few. While the precise cause of neuropathic pain syndromes is not fully understood, it is believed that this type of chronic pain occurs when nerves are injured or damaged. Symptoms of these painful conditions include experiencing a burning sensation, or an electric, shock-like sensation to the touch. Once damaged, nerves can continue to send pain messages to the brain, even when an injury to say, a tooth, has been repaired by a procedure such as a root canal, which is called atypical odontalgia or phantom tooth pain. Another chronic pain condition that often affects the face is trigeminal neuralgia (TN). The trigeminal nerve is the main nerve that decodes sensations to the face. When affected with TN, sufferers are often afraid to perform such routine activities such as shaving, or brushing hair in hopes of avoiding the shock-like pain sensation.7 The burden of chronic pain conditions on society in the United States is immense. From an economic standpoint, the annual costs including healthcare expenses, lost wages, and lower productivity from chronic pain is estimated to be $100 billion.8 Besides the economic impacts of chronic pain on society, the psychological and social impacts of chronic pain on an individual and their family is also vast. Many chronic pain sufferers indicate a lower quality of life from their condition. Over 75% of chronic pain patients reported feeling depressed, have disturbed sleep patterns, lower energy levels, and an increased inability to concentrate.9 People often cannot work steady hours or help with household chores. Spouses or partners of chronic pain patients often have additional responsibilities at home, may need to get a new job or work additional hours at a current job, or have added child- care duties. This often results in spouses or partners of chronic pain sufferers feeling depressed, chronically fatigued and resentful towards their spouse/partner in the first place. Children of chronic pain patients may also feel resentful, angry or sad over the changes that chronic pain often make on quality family time. Chronic pain often can negatively affect a person’s relationships with family, friends, and co-workers.10 A “front-line” physician such as a family practice doctor, internist, or pediatrician is often seen first for a painful condition or injury. If acute pain turns into a chronic condition in and of itself or if the pain is due to a chronic disease state, patients are often referred to specialists for continued treatment. Pain medicine is a board-certified specialty from the American Board of Pain Medicine (ABPM). Physicians with this certification come from fields such as anesthesiology, neurology, psychiatry and many others. They are required to pass a rigorous examination from the ABPM to receive this specialization in pain medicine.11 Other specialties within clinical medicine such as anesthesiology, physical medicine & rehabilitation, neurology, and psychiatry also provide a separate certification examination in pain medicine from within their respective accrediting boards. Patients can usually search for a physician certified in pain medicine (sometimes referred to as a diplomate) on an accrediting board’s web site. Treatments for chronic pain conditions are varied and dependent on the cause of the pain. Medications, psychological counseling, physical therapy, occupational therapy, complementary and alternative therapies, and surgical procedures may all play a role in alleviating chronic pain and allowing a patient to manage symptoms in order to retain a higher quality of life. Lifestyle changes are also important for the chronic pain sufferer. Maintaining a regular sleep and exercise schedule is important, as well as refraining from using alcohol and tobacco. Often times treatment regimens for chronic pain do not entirely eliminate the pain condition. Instead, the goal is to reduce pain intensity and duration to maintain a higher quality of life.12 Another option for treating chronic pain is enrolling in a multidisciplinary pain program. A multidisciplinary pain program focuses on teaching the patient how to cope and live with a chronic pain condition with the goal of improving a patient’s quality of life. A pain program takes a team approach to health care with physicians from physical medicine and rehabilitation, neurology, anesthesiology, and psychiatry, along with nurses, psychologists, physical and occupational therapists, family counselors, and other health or social support workers in an integrative system of care and support.13 These types of programs are usually offered in a hospital or a rehabilitation center and may require a concentrated time commitment of two weeks or more of daily attendance. Since there is a significant time commitment for these programs, choosing one within commuting distance of one’s home is very important. Some programs offer inpatient services, others do not. Family members are also usually included in the care process with support groups and counseling offered. Today chronic pain sufferers and their families have access to a large amount of information resources on the Internet. This is due in part to the evolution of pain medicine and pain management as specialties within many clinical medicine fields. This increased awareness may also result in patients finding information sources on the Internet that are created by drug companies, biomedical device manufacturers, or companies offering a “miracle cure” that attempt to persuade readers with examples of “evidence” for treatments that may be little more than advertisements. This list below contains authoritative information resources on chronic pain for patients and families. WEB RESOURCES ON CHRONIC PAIN The Merck Manual Home Edition. Pain – Introduction. < http://www.merck.com/mmhe/sec06/ch078/ch078a.html?qt=pain&alt=sh> The Merck Manual Home Edition is a popular general consumer health reference book which is available for free online. Each article is updated and revised by physicians in a timely manner. This introductory article on pain provides a good overview of the differences between acute and chronic pain and the pain pathways that exist in the human nervous system. American Pain Foundation. Pain Facts and Figures. < http://www.painfoundation.org/newsroom/reporter-resources/pain-facts- figures.html> The American Pain Foundation is a non-profit organization whose mission is to serve people suffering with pain through information, advocacy and support. This site includes a library of articles on pain conditions, links to web sites organized by conditions, and a locator tool to link patients with organizations that provide support and information. The Newsroom section of this site contains statistical data on pain conditions and burden of disease of use to health reporters. National Institute of Neurological Disorders and Stroke. Pain: Hope Through Research <http://www.ninds.nih.gov/disorders/chronic_pain/detail_chronic_pain.htm#125113 084> The National Institute of Neurological Disorders and Stroke (NINDS) is part of the National Institutes of Health. NINDS is charged with reducing the burden of neurological disease among all segments of society. This site from NINDS has overview information on pain, definitions of acute versus chronic pain, a history of pain treatments from ancient times to the present, an A-Z listing of pain conditions, treatments, and medications, as well as a listing of organizations that support patients with various conditions. National Pain Foundation. Headache Overview < http://www.nationalpainfoundation.org/cat/12/headache> The National Pain Foundation is a non-profit organization whose mission is to advance functional recovery of persons in pain through information, education, and support. All information on the NPF web site is peer-reviewed. The Diseases & Conditions section of their web site lists several pain conditions besides headache, including fibromyalgia and cancer pain. Each condition is described in detail with sections on causes, signs & symptoms, diagnosis, prognosis, therapies, a glossary, and articles that address various components of the condition. The Providers section of the web site offers a Clinical Content area that is intended for practitioners, but consumers can easily understand much of the information here as well. The content is mirrored from the Diseases & Conditions area but with additional citations and articles written by physicians. American Academy of Physical Medicine and Rehabilitation. Overview of Neck Pain < http://www.aapmr.org/condtreat/pain/neckpain.htm> The American Academy of Physical Medicine and Rehabilitation is the society that represents physical medicine and rehabilitation physicians who are also known as physiatrists. Physiatrists are experts at diagnosing and treating pain by viewing the patient holistically. This site lists conditions and treatments that physical medicine and rehabilitation physicians routinely diagnose and treat. The site also has an online directory that can consumers can use to identify physiatrists in the United States and other countries. American Academy of Pain Medicine. AAPM Facts and Figures on Pain. < http://www.painmed.org/patient/facts.html> The American Academy of Pain Medicine (AAPM) is an organization for physicians who practice the specialty of pain medicine in the United States. AAPM promotes best clinical practices, research, advocacy, and continuing medical education for its members. Consumers may wish to start at the Patient Portal to research general information or to find a physician. The Clinical Information section of the web site has research findings from AAPM meeting abstracts, clinical guidelines, and updated news articles. American Board of Pain Medicine < http://www.abpm.org/> The American Board of Pain Medicine is the organization that accredits physicians with a specialization in pain medicine. Qualified candidates sit for an examination that if successfully passed designates them as diplomates in the field. The organization also accredits pain medicine residency programs in the United States. Interested consumers can search for physicians with this specialization in the Diplomates section. FamilyDoctor.org. Chronic Pain < http://familydoctor.org/online/famdocen/home/common/pain/disorders/551.html> FamilyDoctor.org is the health information portal for consumers from the American Academy of Family Physicians. The chronic pain monograph focuses on treatments for chronic pain and what patients should tell their family physician at an office visit when they experience pain. There is a link on this page to a section on FamilyDoctor.org dedicated to various pain disorders, including pain disorders in children. American Chronic Pain Association < http://www.theacpa.org/default.asp> Penney Cowan founded the American Chronic Pain Association in 1980. Ms. Cowan founded the group as a result of her experiences as a chronic pain patient, in particular her experience at a pain management program at the Cleveland Clinic. Today the organization is known for its national network of support groups. The web site has helpful articles on coping with chronic pain, information on how to choose a multidisciplinary pain program and an online video presentation on pain medications and treatments. They publish a quarterly newsletter, sell books and videos via an online store, and list pain conferences and volunteer opportunities on the events calendar. CONCLUSION Chronic pain conditions are incredibly complicated to diagnose and treat. Treatment goals more often than not focus on increasing quality of life, rather than offering a permanent cure. These Internet sites provide a wide array of information resources and support mechanisms for people with chronic pain and their caregivers, family members, and friends. Many of these sites offer health consumers a search option to find a physician who specializes in pain management. Finding a specialist in pain medicine or pain management can help increase quality of life satisfaction for the millions of Americans who live with chronic pain everyday. REFERENCES 1. Merck Manual Home Edition. “Introduction: Pain.” (August 2007). Available: <http://www.merck.com/mmhe/sec06/ch078/ch078a.html?qt=pain&alt=sh.>Acce ssed: September 18, 2009. 2. American Pain Foundation. “Pain Facts and Figures.” (July 2009). Available: <http://www.painfoundation.org/newsroom/reporter-resources/pain-facts- figures.html>. Accessed: September 18, 2009. 3. National Institute of Neurological Disorders and Stroke. “Pain: Hope Through Research.” (August 2009). Available: <http://www.ninds.nih.gov/disorders/chronic_pain/detail_chronic_pain.htm#1251 13084>. Accessed: September 25, 2009. 4. Leonardi M, Steiner TJ, Scher AT, Lipton RR. The global burden of migraine: measuring disability in headache disorders with WHO’s Classification of Functioning, Disability and Health (ICF). J Headache Pain 2005;6:429-440. 5. National Pain Foundation. “Headache Overview.” (2009). Available: <http://www.nationalpainfoundation.org/articles/737/headache-overview>. Accessed: September 25, 2009. 6. American Academy of Physical Medicine and Rehabilitation. “Overview of Neck Pain.” (2009). Available: <http://www.aapmr.org/condtreat/pain/neckpain.htm>. Accessed: September 28, 2009. 7. National Pain Foundation. “Neuropathic Pain in Head and Neck.” (2009). Available: <http://www.nationalpainfoundation.org/articles/461/neuropathic-pain- in-head-and-neck-#Treatment>. Accessed: September 28, 2009. 8. American Academy of Pain Medicine. “AAPM Facts and Figures on Pain.” (2009). Available: <http://www.painmed.org/patient/facts.html>. Accessed: September 21, 2009. 9. Ibid. 10. Brody, Jane E. “Chronic Pain: A Burden Often Shared.” Available: <http://www.nytimes.com/2007/11/13/health/13brod.html?_r=1> . Accessed: September 18, 2009. 11. American Board of Pain Medicine. (2009). Available: <http://www.abpm.org/>. Accessed: September 28, 2009. 12. FamilyDoctor.org. “Chronic Pain.” (March 2009). Available: < http://familydoctor.org/online/famdocen/home/common/pain/disorders/551.html> . Accessed: September 28, 2009. 13. American Chronic Pain Association. “Managing Chronic Pain.” (September 2009). Available: <http://www.theacpa.org/people/pain_program.asp>. Accessed September 25, 2009.
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