Living with Pain
The social costs of pain, especially chronic pain, affect not only the person in pain but also friends, coworkers, and especially the family. Pain makes everything about that life different. Family members find that their relationship with their loved one changes, and to the extent that they must take on new roles (as caregiver and morale booster) and greater responsibilities in the family (e.g., grocery shopping, chores, errands), the burden on them increases. They may observe not just physical but also psychological changes. Often “a person in pain withdraws emotionally from the spouse or partner and other family members. A family member’s negative reaction to this withdrawal is a natural response. In the long term, pain may change nearly every aspect of family life, and to the extent that the person in pain cannot work, the family’s financial stability may be threatened. Heightened stress may affect the children, who do not understand why their parent is withdrawn, irritable, and no longer the willing playmate of the past.
At the same time, continued emotional support is vital to the functioning of a family member in pain and to aiding in his or her rehabilitation. People who report family disharmony and lack of support do not benefit from pain treatment to the same extent as those with strong family support.
Institutes of Medicine, Relieving Pain in America, 2011
There are times when my pain medication stops working and the horrible nerve pain takes over, ripping through my innocent leg. I lay on my bed trapped, trapped by pain. I feel fear, afraid the pain will never cease, afraid I’ll go insane. I cry out to God begging for mercy. What have I done to deserve this fate? I feel like an innocent man condemned. I am trapped in a cage of pain, a cage made of rebar. I cannot tolerate it another second. I try a desperate escape by pushing my face through the bars, but I can go no further. I’m trapped in hell.
Visit PainExhibit.org an online educational, visual arts exhibit created by Mark Collen, which displays from artists with chronic pain with their art expressing some facet of the pain experience. The mission of PainExhibit.org is to educate healthcare providers and the public about chronic pain through art, and to give voice to the many who suffer in silence.
A Voice of Pain: Real People – Real Stories
Maggie Buckley – Maggie is a PAINS participant and founder of Women With Pain Coalition DBA The Pain Community; she lives with the complex condition Ehlers-Danlos Syndrome.
Judy Foreman – Author Judy Foreman will publish and book on pain in 2013; in this podcast she discusses her own experience living with pain and learning how undertreated and misunderstood it is.
Seth Haney – Seth attended and spoke at the 2012 PAINS meeting in Kansas City and spoke about the challenges of navigating the health care system to find answers and help.
As a person with pain, you have the right to:
- Have your report of pain taken seriously and be treated with dignity and respect by doctors, nurses, pharmacists and other healthcare professionals.
- Have your pain thoroughly assessed and promptly treated.
- Be informed by your healthcare professional about what may be causing your pain, possible treatments and the benefits, risks and costs of each.
- Participate actively in decisions about how to manage your pain.
- Have your pain reassessed regularly and your treatment adjusted if your pain has not been eased.
- Be referred to a pain specialist if your pain persists.
- Get clear and prompt answers to your questions, take time to make decisions and refuse a particular type of treatment if you choose.
- Have a treatment plan that takes into consideration the whole person: mind, body, and spirit, as well as the family and community environment.
How Should My Pain Be Treated?
Coordination of care by the primary medical clinician and the person with pain is vital to good pain care. Communication among the clinician team members and the primary coordinating medical clinician is also a critical component of integrative care. Most often, people with chronic pain (pain that persists over time) get the best result with a combination of therapies and providers that address the physical, functional, emotional, and spiritual aspects of pain. Listed alphabetically, possible therapies might include:
A pain reliever that can be bought over-the-counter. It is often effective in managing mild to moderate pain. When taken as directed, it is usually safe. Side effects can include damage to the liver or kidneys if the drug is taken in high doses or for too long.
One of the oldest therapies known. It involves the insertion of fine needles into the skin at designated points. Acupuncture is thought to work by restoring the body’s energy flow and allowing the body to regain balance and heal itself.
Pain medications,called analgesics, work best if taken before the pain becomes severe. Once pain becomes severe, it takes more time and more medication to bring it under control. These include: acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), and opioids.
The therapeutic use of art making, within a professional relationship, by people who experience illness, trauma, or challenges in living, and by people who seek personal development. Through creating art and reflecting on the art products and processes, people can increase awareness of self and others cope with symptoms, stress, and traumatic experiences; enhance cognitive abilities; and enjoy the life-affirming pleasures of making art.
Chiropractory is a healthcare profession that deals primarily with musculoskeletal and nervous system disorders and their affect on health. Chiropractors practice a drug-free, hands-on approach to treatment that may include manipulation of joints and soft tissues.
Creative Arts Therapies
Creative Arts Therapists are human service professionals who use arts modalities and creative processes for the purpose of easing disability and illness and optimizing health and wellness.
The psychotherapeutic use of movement to further the emotional, cognitive, physical and social integration of the individual. It is an embodied approach predicated on the empirically-supported concept of bi-directional mind/body integration. It is biopsychosocial, informed by systems theory, and various theories of therapy.
The intentional and systematic use of drama/theater processes to achieve psychological growth and change. The tools are derived from theater, the goals are rooted in psychotherapy.
Professional therapeutic massage is a method of manipulating the soft tissues of the body to relieve pain, release tension, and restore function. is a method of manipulating the soft tissues of the body to relieve pain, release tension, and restore function.
Are based on the idea that the mind and body work together as a unit. Mind/body techniques can relieve pain by reducing stress (which helps the immune system). A few of these techniques include biofeedback, hypnosis, guided imagery, prayer and meditation.
Rhythmic movement found in yoga, tai chi, and qigong encourage deep breathing and concentration, aiding in relaxation and reducing stress levels.
The clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.
Nonsteroidal anti-inflammatory drugs (NSAIDs)
Pain relievers that are available over-the-counter (such as aspirin, ibuprofen, and naproxen sodium), or by prescription. NSAIDs are often used to treat mild to moderate pain. Side effects include stomach problems and some may increase the risk of heart attack or stroke. They can also be used with other medicines to treat severe pain.
Prescription medications used to relieve moderate to severe pain. They can be used safely if taken as prescribed. Opioids are sometimes combined with aspirin or acetaminophen. Common side effects include nausea, itching (usually only for the first week or two) and constipation (often requiring use of a bowel stimulant). Sleepiness, confusion or breathing problems can occur and should be immediately reported to your doctor. Additionally, research has shown that in some cases, opioid medications themselves can contribute to and worsen chronic pain. Journal of Opioid Management. 2008 May-Jun; 4(3):123-30.
Other medications used to treat pain
Some anti-depressants, anti-convulsants and anti-inflammatory steroids are helpful for treating pain. They are often used in combination with analgesics.
Other pain therapies
Healthcare professionals can evaluate whether other therapies could improve your pain relief and give you information about what you can expect. Surgery, medicine injected into the spine, nerves or muscles, pumps that give a constant flow of medicine, and electrical stimulators are examples of other therapies.
Physical and occupational therapy
Treat common muscle, joint and spine problems to decrease pain and improve quality of life. Some methods include: exercises for strengthening and stretching; retraining in activities of daily living such as lifting or housework; electrical stimulation of muscles; ultrasound; massage, joint movement and correction of posture problems. Aquatic therapy in a swimming pool is sometimes especially helpful.
A form therapy in which a selected poem, which may be created by the patient, is used to evoke feelings and responses for discussion in a therapeutic setting.
Cognitive behavioral therapy, dialectic therapy, insight-oriented therapy, mindfulness, and others can be an important part of a pain management plan, especially if ongoing pain produces emotional challenges. Learning to cope with the emotional and social consequences of pain cannot only reduce your pain level but improves your quality of life.
Application of a heating pad or ice pack can reduce pain. Heat should not be applied for more than 30 minutes, and should usually be followed by ice.
Topical pain relievers
Gels, lotions, or self-adhesive patches available over-the-counter or by prescription which may help for some pain conditions.
PAINS, Academic Consortium for Complementary and Alternative Health Care
Integrated Pain Management
A New Approach: Integrated Pain Management
Recognizing that chronic pain is complex—far more than a physical sensation—the Institute of Medicine (IOM) report recommends a “bio-psychosocial” approach to pain management—one that takes into consideration the whole person: mind, body, and spirit, as well as the family and community environment.
The PAINS alliance supports this recommendation and takes it a step further by embracing an integrated model of pain management. Comprehensive pain programs that utilize this model have been shown to be safe, effective in treating pain, and cost-effective [SOURCE: Gatchel, 2006].
This common sense approach is also good medicine.
Integrated Pain Management (IPM):
- Is informed by evidence
- Is patient-centered and reaffirms the importance of a healing, covenantal partnership between practitioner and patient
- Focuses on the whole person—mind, body, spirit, in the context of the individual’s community/environment
- Brings together all appropriate therapeutic approaches and healthcare professionals to reduce pain, improve function, and achieve optimal health and healing
- Supports the individualization of care, recognizing that no single treatment or paradigm may be perfectly suited for every patient, especially those in chronic pain
Today, most pain policies focus on single modality treatments, particularly on issues related to opioid analgesics and the prevention of their diversion, misuse and abuse. PAINS recommends that, as pain policies are developed at the state and federal level, it is imperative that an integrated approach be considered and supported.
In May 2010, the Pain Management Task Force of the Office of the Army Surgeon General issued a report called, Providing a Standardized DoD and VHA Vision and Approach to Pain Management to Optimize Care for Warriors and their Families, which mandated integrated pain management. The report called for a comprehensive pain management strategy that is “holistic, multidisciplinary, and multimodal in its approach, utilizes state of the art/science modalities and technologies, and provides optimal quality of life for soldiers and other patients with acute and chronic pain.”
All people in the United States are deserving of this model of care.
For an example of how one the PAINS participating organizations is advancing this important new direction at the state level, see the Missouri Primary Care Association Relieving Pain in Missouri “A Patient-Centered Pain Care Initiative.”
Talk to Your Legislator
How to Write an Advocacy Letter: Easing your frustration and clearing your cache
by Celeste Cooper, RN and Pain Advocate
Advocacy comes in many forms and from many places, an individual, an organization, support of a family member, friend or colleague, all with a mutual goal of raising awareness for their shared concern. Being an advocate allows us the opportunity to release, rather than internalize, our frustration, fear, anger or feelings of helplessness. Our voice is our best tool, because help will not arrive if we assume someone else has called 9-1-1.
The links below are provided to help you contact your federal, state and local representatives as well as regulatory agencies and medical associations. Do you know of others we should list here? Email us at firstname.lastname@example.org.
Federal Agencies and Medical Associations
- Food & Drug Administration (FDA)
- FDA Docket Management (find and comment on dockets)
- FDA Science and Research
- The Center for Disease Control (CDC)
- CDC Office of Science Quality
- The National Institute of Health (NIH)
- NIH – Clinical Trials
- NIH Office of Rare Diseases Research (ORDR)
- National Institute of Neurological Disorders and Stroke (NINDS)
- National Institute of Allergy and Infectious Diseases (NIAID)
- NIH – Pain Consortium – Email
- NIH – Interagency Pain Research Coordinating Committee (Will take comments and questions)
- The American Medical Association
- The American Osteopathic Association
- The American Civil Liberties Union
People affected by pain, healthcare organizations and professionals, regulatory officials, licensing boards, and legislators all have a role to play in promoting a balanced approach to pain care policy and practice. The first step to raising awareness is to be well-informed. Check out the stellar resources below, provided by the University of Wisconsin Pain & Policy Studies Group (PPSG), State Pain Policy Advocacy Network (SPPAN), American Cancer Society Cancer Action Network (ACS CAN), LiveSTRONG Foundation, and PAINS.
- Achieving Balance in State Pain Policy: A Progress Report Card (CY 2013). This report by PPSG contains a grade for each state and the District of Columbia, which represents the extent that state policies can support pain management and patient care. PPSG researchers evaluated the content of state laws and regulatory policies to determine the presence of language that could enhance or impede pain management.
- Achieving Balance in State and Federal Pain Policies: A Guide to Evaluation (CY 2013). In this companion document, the PPSG policy evaluation method and criteria are explained, as is the governing medico-legal principle of Balance, which signifies that efforts to prevent drug diversion and abuse should not interfere with medical practice and patient care. A pain policy profile is presented for each state, describing the laws and regulatory policies identified as having the potential either to encourage or interfere in pain management, including the prescribing of pain medicine. It also contains a primer on regulatory systems and pain management, a discussion of other factors that should be considered when addressing patient pain care, as well as ideas about actions that state legislatures and agencies can take to improve pain. Finally, for the first time, PPSG’s policy evaluation included laws and regulatory policies governing nursing practice.