Amputee Pain
Download the “Amputee Pain” Fact Sheet
ACTION TOOLS:
The Amputee Coalition of America (ACA) provides a fact sheet on steps to effective amputee advocacy and links to ACA’s advocacy center.
Additionally, ACA released results of a consumer survey completed by the Limb Loss Research & Statistics Program (LLR&SP), a collaboration of the ACA and the Johns Hopkins Bloomberg School of Public Health, in its publication, People With Amputation Speak Out With the Amputee Coalition of America.
The purpose of the multi-year research project, funded by the National Center on Birth Defects and Developmental Disabilities (NCBDDD), a division of the Centers for Disease Control and Prevention (CDC), was to determine how well people with limb loss were functioning in their everyday lives and what services they may need, but are not getting. The four main conclusions of this research are:
- The majority of community-dwelling amputees are living independently.
- Pain and depressed mood are the most common secondary conditions associated with limb loss.
- Among the sample of amputees surveyed, the majority reported wearing a prosthesis daily.
- A significant number of amputees reported barriers to accessing physical and emotional health care during the past year.
The complete report is available as a free download here from the ACA website.
Arthritis Pain
Download the “Arthritis Pain” Fact Sheet
ACTION TOOLS:
The Centers for Disease Control (CDC) is committed to leading strategic public health efforts to promote well-being, prevent chronic disease, and achieve health equity. With $13 million in Fiscal Year 2010 funding, CDC is worked with the Arthritis Foundation, the National Association of Chronic Disease Directors (NACDD), the Directors of Health Promotion and Education, state arthritis program directors, and other partners. These efforts included implementing the National Arthritis Action Plan: A Public Health Strategy, developed in 1999 by CDC, the Arthritis Foundation, the Association of State and Territorial Health Officials, and 90 other organizations. By carrying out the strategies in the action plan, CDC and its partners are moving toward achieving the first-ever arthritis-related national objectives outlined in Healthy People 2010. Click here for more information about the state-based action plan and local contacts.
The Arthritis Foundation also sponsors the “Kids Get Arthritis Too” website, a place where kids, teens and tweens can learn about juvenile arthritis (JA), doctor visits, growing up with JA and more. July is National Juvenile Arthritis Month and a perfect time to increase awareness of one of the most common chronic childhood diseases that often goes undetected or is misdiagnosed.
Projected State-Specific Increases in Self-Reported Doctor-Diagnosed Arthritis and Arthritis-Attributable Activity Limitations, United States, 2005–2030
State-based prevalence data can be used to support local pain advocacy efforts.
Because U.S.adults are living longer and the number of persons in older age groups is growing, the number of U.S. adults living with chronic conditions such as arthritis likely will increase. The number of U.S.adults with doctor-diagnosed arthritis has been projected to reach nearly 67 million adults by the year 2030, including 25 million adults who are expected to have arthritis-attributable activity limitations. The results indicate that, among 50 states, the median projected increase in doctor-diagnosed arthritis from 2005 to 2030 will be 34%; a total of 10 states are projected to have increases of 50% to 99%, and three states are projected to see their numbers more than double. Click here to access a complete state-specific listing that was published in the May 4, 2007 MMWR Weekly.
State-Specific Prevalence of Arthritis-Attributable Work Limitation, United States, 2003
One of the Healthy People 2010 objectives calls for a reduction in the proportion of adults with doctor-diagnosed arthritis who are limited in their ability to work for pay because of arthritis. Persons who are limited in their work by arthritis are considered to have arthritis-attributable work limitation (AAWL). In the United States, AAWL affects one in 20 working-age adults (aged 18–64 years) and one in three working-age adults with self-reported, doctor-diagnosed arthritis.
State-specific prevalence of AAWL among all working-age adults ranged from 3.4% (Hawaii) to 15.0% (Kentucky) (median among states: 6.7%) in 2003. Among those with self-reported, doctor-diagnosed arthritis, the prevalence of AAWL ranged from 25.1% (Nevada) to 51.3% (Kentucky) (median among states: 33.0%). In every state, persons with work limitations attributed to arthritis reported being employed less frequently than working-age adults in the state overall and persons with arthritis but not work limitations. Click here to access a complete state-specific listing that was published in the October 12, 2007 issue of MMWR.
Back Pain
Download the “Back Pain” Fact Sheet
ACTION TOOLS:
The American Osteopathic Association has recently launched the “Break Through Your Pain” campaign, that includes tip sheets on chronic back, neck and knee pain. Click here for more information.
In June 2010, the American Pain Foundation (APF) launched a “Spotlight on Low-Back Pain.” As a part of this effort, APF created an online manual to educate consumers about back pain and arm them with information to talk with their health care providers about prevention and treatment. As with other pain conditions, it can take time and patience to find answers, but these articles offer tips to help you advocate for quality symptom management. The module covers the basics of low-back pain, prevention tips, pain management and questions to ask your health care provider.
The International Association for the Study of Pain (IASP) declared October 2009-October 2010 “Global Year Against Musculoskeletal Pain.” As a part of this awareness-raising effort, IASP has developed videos, press releases and fact sheets – many of them translated into multiple languages — that can be distributed around the world. Click here to access the IASP resources for musculoskeletal pain.
Burn Pain
Download the “Burn Pain” Fact Sheet
ACTION TOOLS:
According to the American Burn Association, an estimated 450,000 burn injuries receive medical treatment each year.iAmerican Burn Association. Burn Incidence and Treatment in the US: 2011 Fact Sheet. http://ameriburn.org/resources_factsheet.php. Accessed May 27, 2011. A burn injury is one of the most painful injuries a person can endure, and the subsequent wound debridement required to heal a burn injury is often more painful than the initial injury.iiPatterson, D. R., & Ptacek, J. T. (1997). Baseline pain as a moderator of hypnotic analgesia for burn injury treatment. Journal of Consulting and Clinical Psychology, 65, p 60-67.
Burn pain is difficult to control because of its unique characteristics, its changing patterns, and its various components. In addition, there is pain involved in the treatment of burns as the wounds must be cleansed and the dressings changed. Studies have found that the management of burn pain can be inadequate, and have recommended more aggressive treatment for pain resulting from burns.iiiHealth Extra-Burn Pain. Cleveland Clinic Foundation. http://www.clevelandclinic.org/health/health-info/docs/3600/3660.asp?index=12063&src=newsp. Accessed May 27, 2011.
Pain resulting from burn injuries can be challenging to treat because burns differ in their types and severity. There are three types of burns:ivHealth Extra-Burn Pain. Cleveland Clinic Foundation. http://www.clevelandclinic.org/health/health-info/docs/3600/3660.asp?index=12063&src=newsp. Accessed May 27, 2011.
- First-degree burns are considered mild compared to other burns. They result in pain and reddening of the epidermis (outer layer of the skin).
- Second-degree burns affect the epidermis and the dermis (lower layer of skin). They cause pain, redness, swelling, and blistering.
- Third-degree burns go through the dermis and affect deeper tissues. They result in white or blackened, charred skin that might be numb.
Cancer Pain
Download the “Cancer Pain” Fact Sheet
ACTION TOOLS:
Pain management and palliative care are a focus of the American Cancer Society Cancer Action Network. This arm of the American Cancer Society provides opportunities to volunteer and advocate for better cancer care and better pain care.
C-Change is comprised of the nation’s key cancer leaders from government, business, and nonprofit sectors. The organization recently added a new module to their web-based Cancer Core Competency toolkit, providing methods, tools, and insights for strengthening the cancer knowledge and skills for non-oncology health professionals focused on pain and palliative care.
The Lance Armstrong Foundation – LIVESTRONG offers comprehensive information on their website surrounding cancer pain, including a questionnaire and patient navigation resources. Click here to access this resource.
In 2010, the American Pain Foundation (APF) released the report “Breakthrough Cancer Pain: Mending the Break in the Continuum of Care,” as well as the results of a corresponding cancer patient and provider survey. Visit the APF’s news room to view the report, fact sheets and a topic brief.
The International Association for the Study of Pain (IASP) declared 2008-09 as the Year Against Cancer Pain to focus attention on the pain and suffering faced by people with cancer. Through this campaign, IASP provided a voice to those with cancer-related pain by “Raising Awareness, Improving Treatment, and Growing Support.” Throughout the year, IASP’s members and chapters will organized various programs and events designed to highlight the issues associated with cancer pain. Specifically, these efforts encouraged and promoted:
- Proper assessment and management of cancer pain by knowledgeable clinicians
- Increased access to appropriate treatments for cancer pain
- More research on the underlying biology of cancer pain
- Development of new therapies to relieve the pain and suffering of cancer patients
IASP and its chapters initiated Global Year media efforts in support of this program to educate health care providers, government leaders and agencies, and the general public about the issues surrounding cancer pain. Fact sheets include:
- Cancer Pain in Older People
- Caregivers and Cancer Pain
Click here for more information, including fact sheets in multiple languages, published data on cancer pain and other resources.
The American Cancer Society provides statewide and site-specific incidence of cancer in their annually published “Cancer Facts & Figures” report. This report offers a wealth of information, including African American and Hispanic statistics.
The National Cancer Institute has developed Pain: PDQ for cancer patients and their families. Click here to view this free resource.
The Leukemia & Lymphoma Society offers opportunities to advocate for increased access, improvements in cancer care, and research for a cure. Extensive information about cancer pain is available on their website. Additionally, a toolbox for advocates can be found here on the organization’s website.
The Pancreatic Cancer Action Network provides information about cancer pain on its website, as well as opportunities to advocate for increased pancreatic cancer research. Click here for more information.
Complementary & Alternative Medicine (CAM) & Pain
ACTION TOOLS:
The National Center for Complementary and Alternative Medicine offers a fact sheet about the use of CAM and pain.
Diabetic Neuropathy Pain
Download the “Diabetic Neuropathy” Fact Sheet
ACTION TOOLS:
The American Diabetes Association offers an “Advocacy” section on their website. The organization’s legislative priorities include: access to health care, eliminating discrimination, disparities, funding for research and programs and prevention. For more information about getting involved, visit: http://www.diabetes.org/advocate/our-priorities/
Ehlers-Danlos Syndrome (EDS) Pain
Download the “EDS Pain” Fact Sheet
ACTION TOOLS:
Ehlers-Danlos Syndrome Network C.A.R.E.S. offers advocacy materials on their website to help raise awareness of the disease and to help with efforts to fund research.
Fibromyalgia Pain
Download the “Fibromyalgia Pain” Fact Sheet
ACTION TOOLS:
Several organizations participate in efforts to raise awareness of fibromyalgia and related disorders surrounding May 12 observances. These include:
The National Fibromyalgia & Chronic Pain Association has taken over the National Fibromyalgia Association’s “Leaders Against Pain” coalition. This coalition seeks state-based advocacy volunteers to lead efforts in media and legislative advocacy efforts. For more information, visit: http://www.fmcpaware.org/
The American Chronic Pain Association offers a Fibromyalgia Symptom Checklist, Online Fibro Log, Patient Handbook, Tip Pamphlet and more that can be used for advocacy and education outreach.
The American Pain Foundation has developed a “Fibromyalgia Toolkit” that includes information about the condition, tips for talking to health care providers and the brochure “Unraveling Fibromyalgia: New Directions in Research and Advocacy.”
The Chronic Pain Research Alliance (CPRA), formerly the Overlapping Conditions Alliance, is dedicated to alleviating the significant human suffering caused by prevalent, neglected and poorly understood chronic pain conditions that frequently co-occur and disproportionately affect women, by advocating for, and supporting, innovative collaborative scientific research on these disorders. These conditions include vulvodynia, temporomandibular disorders, endometriosis, fibromyalgia, interstitial cystitis/painful bladder syndrome, irritable bowel syndrome, chronic headache and chronic fatigue syndrome.
CPRA is comprised of the Endometriosis Association, the TMJ Association, Chronic Fatigue and Immune Dysfunction Association (CFIDS) Association of America, and the National Vulvodynia Association. The six conditions targeted by the Campaign to End Chronic Pain in Women – chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular disorders and vulvodynia – either solely affect women, or affect women at least four times more often than men.
In May of 2010, the Alliance issued a report “Chronic Pain in Women: Neglect, Dismissal and Discrimination.” Detailed information about disease prevalence, research and disease burden can be found in this report, as well as policy recommendations to improve pain care for women.
Headache & Migraine Pain
Download the “Headache & Migraine” Fact Sheet
ACTION TOOLS:
The Alliance for Headache Disorders Advocacy (AHDA) is comprised of nonprofit organizations who are concerned about the health of patients with headache disorders including migraine disease, cluster headaches, chronic daily headache, new daily persistent headache, and tension-type headaches. The AHDA is dedicated to advocacy efforts that can result in better treatment for all headache disorder patients.
HIV/AIDS Pain
Download the “HIV/AIDS Pain” Fact Sheet
ACTION TOOLS:
The Open Society Foundations has published several reports that address pain and HIV/AIDS, including “Easing the Pain: Successes and Challenges in International Palliative Care,” and “Palliative Care as a Human Right: A Fact Sheet.” These materials can be used to support pain advocacy efforts and are available through the organization’s website, www.soros.org.
AIDS Education and Training Centers has developed an HIV/AIDS Chronic Pain Toolkit for health care professionals.
The World Health Organization (WHO) Pain & Palliative Care Communications Program published “The Urgency of Pain Control in Adults with HIV/AIDS.”
The Centers for Disease Control and Prevention (CDC) has published Fact Sheets about HIV/AIDS and: African-Americans, Hispanics/Latinos, Asians and Pacific Islanders and American Indian/Alaska Natives, as well as HIV/AIDS and women that can be used for advocacy efforts. These can be found at: http://www.cdc.gov/hiv/resources/factsheets/index.htm
Multiple Sclerosis Pain
Download the “MS Pain” Fact Sheet
ACTION TOOLS:
The National Multiple Sclerosis (MS) Society offers an “Activist Toolkit” on their website, with tips for storytelling, sample letters, and ways to raise awareness of issues related to MS.
The MS Society also has a 50-state network of local chapters, where assistance is provided to over a million people annually. Chapters encourage personal empowerment with employment counseling, family programs, volunteer opportunities, and advocacy issues. Click here to locate your local chapter and find out if they are interested in raising awareness of pain issues related to MS.
People with MS may also experience Trigeminal Neuralgia. Click here to download the Trigeminal Neuralgia Fact Sheet.
Pelvic Pain
Download the “Pelvic Pain” Fact Sheet
ACTION TOOLS:
The Interstitial Cystitis Association (ICA) has created an Advocacy Toolkit, a Research Toolkit and an IC Health Care Provider Toolkit that include fact sheets, template letters to elected officials and more.
The Chronic Pain Research Alliance (CPRA), formerly the Overlapping Conditions Alliance, is dedicated to alleviating the significant human suffering caused by prevalent, neglected and poorly understood chronic pain conditions that frequently co-occur and disproportionately affect women, by advocating for, and supporting, innovative collaborative scientific research on these disorders. These conditions include vulvodynia, temporomandibular disorders, endometriosis, fibromyalgia, interstitial cystitis/painful bladder syndrome, irritable bowel syndrome, chronic headache and chronic fatigue syndrome.
The CPRA is comprised of the Endometriosis Association, the TMJ Association, Chronic Fatigue and Immune Dysfunction Association (CFIDS) Association of America, and the National Vulvodynia Association. The six conditions targeted by the Campaign to End Chronic Pain in Women – chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular disorders and vulvodynia – either solely affect women, or affect women at least four times more often than men.
In May of 2010, the Alliance issued a report “Chronic Pain in Women: Neglect, Dismissal and Discrimination.” Detailed information about disease prevalence, research and disease burden can be found in this report, as well as policy recommendations to improve pain care for women.
The Office of Research on Women’s Health (ORWH) at the National Institute’s of Health (NIH), in partnership with other federal and non-federal partners, announced the launch of the “Vulvodynia Awareness Campaign” on October 24, 2007. A vulvodynia fact sheet can be downloaded here.
Reflex Sympathetic Dystrophy Syndrome (RSDS)/Complex Regional Pain Syndrome (CRPS) Pain
Download the “RSDS/CRPS Pain” Fact Sheet
ACTION TOOLS:
From the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA):
In Pain, Out of Work and Can’t Pay the Bills: A Resource Directory for People with CRPS
Anyone who has Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), or has a family member or friend afflicted with it, knows how physically, emotionally, and financially devastating it can be. RSDSA constantly gets requests for help, and although there is not a simple solution, there are many programs that may help you. Click here to access the directory.
RSDSA is also active in awareness and advocacy activities. For information about participating in an “Achilles Walk” and other awareness activities, visit the RSDSA’s Advocacy page.
Shingles & Postherpetic Neuralgia (PHN) Pain
Download the “Shingles & PHN Pain” Fact Sheet
ACTION TOOLS:
In 2009, the Visiting Nurse Associations of America (VNAA) and the National Council on Aging (NCOA) announced the re-launch of AfterShingles.com, an online resource offering tools and information to help educate consumers about shingles and postherpetic neuralgia (PHN), or after-shingles pain, its impact on people’s lives and steps to take to help manage the conditions. More information can be found at: http://www.aftershingles.com/default.aspx
The American Pain Foundation has developed a “Spotlight on Shingles” that includes fact sheets, resources and a Webinar.
Sickle Cell Pain
Download the “Sickle Cell Pain” Fact Sheet
ACTION TOOLS:
The Sickle Cell Disease Association of America is looking for volunteers to help raise awareness and advocate!
The Sickle Cell Information Center has posted a number of brochures, videos and presentations on their website, including a PowerPoint about sickle cell pain management. Additionally, leadership from the Sickle Cell Information Center has recently published an updated edition of “Hope And Destiny: The Patient And Parent’s Guide To Sickle Cell Disease And Sickle Cell Trait.” Resources are available at www.scinfo.org.
Sleep & Pain
Download the “Sleep & Pain” Fact Sheet
ACTION TOOLS:
The American Chronic Pain Association offers the Live Better with Pain Log. This visual pain log, with a specific item about sleep (or lack thereof) allows a person with pain to assess their activities of daily living on a scale with a range of emotions, activities and visual images depicted. This completed pain log can then be taken to a health care provider to provide an accurate history of pain and sleep to aid his or her diagnosis and treatment.
The American Sleep Association offers a “Sleep Disorder Screening Questionnaire” that can be completed and discussed with health care professionals.
The American Sleep Apnea Association has an Advocacy Action Network and Legislative Action and Media center that can be accessed through the organization’s website.
Temporomandibular Joint Disfunction (TMJD) Pain
Download the “TMJD Pain” Fact Sheet
ACTION TOOLS:
The Chronic Pain Research Alliance (CPRA), formerly the Overlapping Conditions Alliance, is dedicated to alleviating the significant human suffering caused by prevalent, neglected and poorly understood chronic pain conditions that frequently co-occur and disproportionately affect women, by advocating for, and supporting, innovative collaborative scientific research on these disorders. These conditions include vulvodynia, temporomandibular disorders, endometriosis, fibromyalgia, interstitial cystitis/painful bladder syndrome, irritable bowel syndrome, chronic headache and chronic fatigue syndrome.
CPRA is comprised of the Endometriosis Association, the TMJ Association, Chronic Fatigue and Immune Dysfunction Association (CFIDS) Association of America, and the National Vulvodynia Association. The six conditions targeted by the Campaign to End Chronic Pain in Women – chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular disorders and vulvodynia – either solely affect women, or affect women at least four times more often than men.
In May of 2010, the Alliance issued a report “Chronic Pain in Women: Neglect, Dismissal and Discrimination.” Detailed information about disease prevalence, research and disease burden can be found in this report, as well as policy recommendations to improve pain care for women.
Trigeminal Neuralgia Pain
Download the “Trigeminal Neuralgia Pain” Fact Sheet
ACTION TOOLS:
Trigeminal Neuralgia (TN), also called tic douloureux, is a chronic neruopathic pain condition that causes extreme, sporadic, sudden burning or shock-like face pain that lasts anywhere from a few seconds to as long as two minutes per episode. The intensity of pain can be physically and mentally incapacitating. TN may be part of the normal aging process—as blood vessels lengthen they can come to rest and pulsate against a nerve.
Trigeminal Neuralgia is also sometimes found in people with Multiple Sclerosis. Click here to download the Multiple Sclerosis Fact Sheet.
