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New links are marked for one month with a small flashing bulb:
There is a wonderful site that features artists' paintings whose themes are related to chronic pain and the horrible physical, emotional, and spiritual damage it causes. The artwork is diverse and far-reaching, yet each one captures the message it was created in order to portray, and is as unique as each CRPS patients' perceptions and feelings. It's called PainExhibit.com. Here's a New York Times article on the site. Please check it out - I think you'll be glad you did.
Those of you who subscribe to my monthly newsletter on CRPS Research Advances (an excellent idea if you want to stay informed about your horrible illness) know that, every month, a different art item, along with information about it, is at the top of issue. Want to subscribe? It's one short email each month with a link to the newsletter, which averages about a dozen articles, usually published within the previous couple of months. To subscribe (it's free, of course), please leave me a message via the guestbook.
Also - the Dana Foundation, which sponsors research into the brain, has published two short, easy primers about chronic pain and about the way pain is perceived. These PDF files are low-level, highly illustrated, and should clear up anyone's lack of clarity on these important concepts. Regardless of your current level of understanding, these are highly recommended!
Here are the links to the articles: 1. chronic pain 2. pain perception
ACTION Ontario a superlative site from Canada, in coordination with severeal hospitals in the Toronto area.
Alliance of State Pain Initiatives a national network of interdisciplinary, state-based organizations dedicated to transforming the culture of pain care.
American Academy of Orofacial Pain "dedicated to alleviating pain and suffering through the promotion of excellence in education, research and patient care in the field of orofacial pain and associated disorders."
American Academy of Physical Medicine and Rehabilitation "national medical society representing more than 7,000 physicians (physiatrists) specializing in the field of physical medicine and rehabilitation. "
American Association for the Treatment of Opioid Dependence "a nonprofit organization for healthcare professionals founded in 1984 to enhance the quality of patient care in addiction treatment programs by promoting the growth and development of comprehensive medication-assisted therapy services throughout the United States and internationally."
American Pain Institute a small physician group with several locations in south LA; their website features a great series of narrated animations that explain the great majorioty of medical procedures used to treat CRPS/RSD.
American Physical Therapy Association an "organization representing more than 66,000 members. Its goal is to foster advancements in physical therapy practice, research, and education".
American Society of Interventional Pain Physicians "The society serves more than 3,500 members nationwide with advocacy efforts, educational programs, publications, and communications."
American Society of Pain Management Nursing like so many other sites involving nurses, this is a highly detailed, pragmatic site with a great bibliography, lots of educational opportunities, and a cool State of the Science section.
Australian Pain Society a really great, well-researched and -balanced site that outlines the problems of chronic pain and points out all
Bandolier: List of Systematic Reviews on Pain Topics huge list; organized by Author but searchable
A Call to Revolutionize Chronic Pain Care in America a 12-point document released by the Mayday Fund, an excellent organization which funds fellowships for pain physicians in training.
Cannabis Works Differently and Variably "This is the main result from a research study, out of the University of Oxford in England. MRI scans of the brain activity of the experiment’s volunteer subjects, recorded a definite calming of the pain centers of the brain when patients used the drug. "
Center for the Study of Pain at the Univ. of Toronto - "The vision of the UTCSP is to be a key academic voice and a leader, both nationally and internationally, in pain research and education."
Centers for Pain Control "strives to deliver the highest quality pain management services with the most stringent professional standards, and unparalleled attention to clinical excellence and patient safety."
Chronic Non-Malignant Pain a series of authoritative reviews on many aspects of chronic pain from the excellent Bandolier site at Oxford Univ. Headings include evidence, analgesics, neuropathic pain, fibromyalgia, and "other interventions or conditions".
ChronicPain.org "Chronicpain.org purpose is to lessen the suffering of people with chronic pain by educating pain sufferers, health care professionals, and the public about chronic pain and its management."
Chronic Pain Association of Canada "Canada's largest independent, not-for-profit charitable organization serving people affected by pain, through education, information, and support advocacy. "
Chronic Pain Australia - a new site! "Chronic Pain Australia receives NO FUNDING from government. This means that we are all volunteers, and together we have achieved a great deal including partnering with the Australian Pain Society and the Faculty of Pain Medicine to develop Australia's First National Pain Strategy."
11 Chronic Pain Control Techniques "Learning to relax takes practice, especially when you are in pain, but it is definitely worth it to be able to release muscle tension throughout the body and start to remove attention from the pain."
Chronic Pain from eMedicineHealth succinct, well organized 10-page review of what it is, types, treatments, prognoses, etc.
Chronic Pain Harms The Brain"in a new study, investigators at Northwestern University's Feinberg School of Medicine have identified a clue that may explain how suffering long-term pain could trigger these other pain-related symptoms."
Chronic Pain Revolutions Forums a series of discussion forums for any people suffering from chronic pain
Cleveland Clinic Pain Management Dept. the pain center at Cleveland Clinic, a nonprofit multispecialty academic medical center that integrates clinical and hospital care with research and education. It's also one of the top 10 hospitals in the country.
Considerations for improving assay sensitivity in chronic pain clinical trials: IMMPACT recommendations written by at least 25 authors, this paper summarizes the authors' conclusions about where the all-important reports go.
Consumer Guide for Managing Chronic Pain very good, holistic approach to handling chronic pain from many different aspects
Costal Bend Chronic Pain Center a Donald Rhodes site, selling his patented machine claimed to cure RSD.
Dee's Pain Management Page by a doctoral candidate, very complete but dated - not recently updated
Denial of Chronic Pain, The very intriguing essay from the Pulsus site (the Canadian medical peer review publisher)
EFNS Guidedlines on Neuropathic Pain Assessment: Revised 2009 a review of the various ways practitioners use to try and measure the intensity of chronic pain patients' pain levels
EFNS Guidelines on the Pharmacological Treatment of Neuropathic Pain published in 2010, this updates the 2005 review on the same topic - 33 pages.
European Federation of IASP® Chapters "a multidisciplinary professional organisation in the field of pain research and medicine, consisting of the 36 chapters of the International Association for the Study of Pain (IASP®), which are the IASP approved official National Pain Societies in each country."
For Some, Deep Brain Stimulation Brings Lasting Improvement in Neuropathic Pain "About two-thirds of eligible patients who undergo DBS achieve significant and lasting benefits in terms of pain, quality of life, and overall health, according to the report."
Foundation for Peripheral Neuropathy "works to educate the public and healthcare professionals, provide state-of-the-art treatment for patients with peripheral neuropathy, and serves as a catalyst for advancing innovative therapeutic developments and accelerating a cure for painful neuropathies."
Geriatric Pain "a one-stop resource, sharing free best-practice tools and resources that support recommendations for good pain assessment and management in older adults, including implementation of quality improvement processes focused on pain management."
Guidelines on the Management of Neuropathic Pain published by the Irish group "The Clinical Resource Efficiency Support Team (CREST)" - 32 pages.
Holistic Integrative Medicine and Health Care The Continuum Center for Health and Healing, part of the Beth-Israel Medical Center, which features holistic and alternative methods for dealing with medical issues, particularly chronic pain.
Hospice Foundation of America hospice is a special concept of care designed to provide comfort and support to patients and their families. Patients are referred to hospice when life expectancy is approximately six months or less.
How to Cope with Pain A unique site that focuses on non-pharmacological methods for dealing with pain, such as breathing/relaxation exercises, guided imagery, stress management, and sleep hygiene.
How to Describe your Pain to Doctors a 2-page article, with four previously published articles cites, on how to describe pain.
How to Talk to Your Doctor about Chronic Pain from CNN, a very good list of suggestions on talking to your doctor about your chronic pain, and why these various factors are important.
InfoMIN Chronic Pain, CFS, FMS and other resources from Lois Randall; covers many chronic pain sources incl. CFS, fibro., RSD, IBS, etc.
Integrative Pain Medicine from the superb Beth-Israel Dept. of Pain and Palliative Care, an article on dietary factors which can aid in the treatment of chronic pain from any source.
International Association for Cannabis as Medicine (IACM) a scientific society that advocates the improvement of the legal situation for the use of the hemp plant (Cannabis sativa L.) and its pharmacologically most important compounds, the cannabinoids. Check out the "Science" page, which summarizes research around the world on cannabis as an analgesic.
International Association for the Study of Pain (IASP), The non-profit prof. org'n., open to anyone with interest in pain therapy.
International Myopain Society "The “International MYOPAIN Society” [IMS] is a nonprofit, international, interdisciplinary medical organization for research scientists, physicians, other health care professionals, individuals in training toward a health-related career, institutions, foundations, and commercial companies interested in exchanging ideas, conducting research, or learning more about soft tissue pain syndromes like myofascial pain syndrome and fibromyalgia syndrome."
Introduction to Chronic Pain part of Beth-Israel (Albert Einstein College of Medicine)'s Stoppain.org site, a great intro for newcomers to chronic pain.
iSTOP: The Institute for the Study and Treatment of Pain "a non-profit organization dedicated to research, treatment, training, and education in chronic pain. Led by the research and clinical practice of Dr. Chan Gunn, iSTOP developed Intramuscular Stimulation (GunnIMS), a total system for the diagnosis and treatment of soft-tissue pain."
JAN - Job Accommodation Network "the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues."
Managing Chronic Pain in Adults with or in Recovery From Substance Use Disorders from SAMHSA, a comprehensive (128 pp) guide on just what the title says. This is a difficult population to treat, but there's nothing about being an addict - in recovery or not - that deprives them of the same pain relief we all seek.
Mayday Pain Project, The " includes information, research, and resources on a variety of subjects relating to pain; however, many links are to sources of information via the mass media or other resources that may or may not be evidence-based."
Medical Pain Management "founded in 1992 by the Physicians of Rockford Anesthesiologist Associated, LLC. Over the years, MPMS expanded and relocated to its outpatient clinic offering state-of-the art technology and the latest in diagnostic and therapeutic techniques to provide a center of excellence for pain management."
Medicine.net a general purpose site for medical advice, particularly good on pain issues
MedlinePlus: Pain sponsored by NIH, an excellent resource for those suffering pain for any reason - many great links for loads of information.
Medtronic Pain Therapies an introduction to neurostimulation and intrathecal drug delivery; Medtronic manufacturers manufacturers the great majority of the devices used for these therapies, especially SCS.
Mesana Clinic a major MD clinic, specializing in Tx of chronic pain
National Chronic Pain Outreach temporarily out of service from Mass. General
National Foundation for the Treatment of Pain information & lobbying for chronic pain issues
National Fibromyalgia Association working to support people with fibromyalgia and other chronic pain illnesses.
National Fibromyalgia & Chronic Pain Association "a not for profit organization working to support people who have chronic pain illnesses and their families and friends by contributing to caring, professional, and community relationships."
National Headache Association a source of help to sufferers' families, physicians who treat headache sufferers, allied healthcare professionals and to the public.
National Hospice and Palliative Care Organization Hospice believes that death is an integral part of the life cycle and that intensive palliative care focuses on pain relief, comfort and enhanced quality of life as appropriate goals for the terminally ill.
National Multiple Sclerosis Society a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis.
National Organization for Rare Disorders a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them.
National Pain Foundation very professional site - "on-line education and support community" for patients, families, physicians
The neural basis of chronic pain, its plasticity and modulation not as heavy as it sounds; still, be prepared to think hard!
Neuropathy Association, The "We have 50,000 active members and supporters, with approximately 120 support groups throughout the United States and abroad providing public awareness, patient support, education and advocacy."
NIH Pain Consortium "Pain Index - The National Institutes of Health consists of many different institutes and centers. This is an index to various NIH publications about pain symptoms, conditions and treatments."
NINDS Chronic Pain Information Page lots of current information from the NIH institute that deals with chronic pain, CRPS, etc.
N. Amer. Chronic Pain Assoc. of Canada a registered Canadian Charity and Affiliate of the American Chronic Pain Association
Oxford Pain Internet Site summaries of systematic reviews in Pain Relief; it's also the home site for Bandolier, their journal
Oxford Pain Research huge research effort at Oxford into the mechanisms, etiology, Dx, Tx, and other data about chronic pain
Our Chronic Pain Mission eclectic site with much great info, but with clear right-wing slant
PainACTION.com "provides free access to pain journals, responses to common questions, and interactive support and educational tools. From the same organization that produces PainEDU."
Pain Alliance Europe "Pain Alliance Europe, PAE is represented by a board. At the moment the board of PAE has 6 members and 1 candidate member who is co-opting with the board. The candidate member will be nominated at the next General Assembly."
PainCare a chronic pain clinic in NH; much good information on their site.
Pain as the Fifth Vital Sign written in the smooth, caring style of the good nursing journals. Worth a careful read.
Pain as the Fifth Vital Sign Toolkit from the Dept. of Veterans Affairs, a great 57-pg guide on how the DVA is implementing the rule we all know that pain must be assessed in addition to temperature, b.p., respiratory rate, and pulse.
Pain Central Appalachian Pain Found. site - great technical articles, great resources for contacting other pain people
Pain.com "Extensive, industry-sponsored site providing free access to educational resources for professionals and patients, including: web-based CME, articles, and pain journals."
Pain Connection "aims to improve the quality of life of those suffering from chronic pain, decrease their sense of isolation and alienation, increase control of their condition and treatment, and help them to maintain their independencePain Control: A Guide for Patients and Families
Pain Control: A Guide for Those With Cancer and Their Loved Ones a really well-rounded, 38 pg guide (pdf) for both patients and caregivers of those with chronic pain.
Pain Diaries from Health.com, making a case why keeping a pain diary, along with several independent variables, may help us pinpoint just what factors stimulate our pain, which is known to be different individually.
PainEDU.org "PainEDU.org is supported by Endo Pharmaceuticals, Inc. and Actavis Elizabeth, LLC. PainEDU is an educational website for clinicians, teaching about pain assessment and management. This site is a comprehensive resource and is based on the latest scientific information about pain treatment."
Paineurope.com "A comprehensive portal of information on pain and its management"
Pain: Hope Through Research the NINDS' section on pain. AQ really great place to start if you want to know a lot of background information on pain, what it is, how it originates, etc.
Pain Killers an excellent, 3pg article based on an interview with Dr. Russell Portenoy of Beth-Israel, on the evolution of attitudes and methods involved with pain relief in the general patient population.
PainKnowledge.org "offers innovative, interactive, and practical activities providing guidance in pain assessment, and offer proven strategies for pain management, all with the aim of improving patient outcomes."
Painlab concentrates primarily on medications; the "Focus on Medications" pages are terrific.
PainLink archives of Amer. Pain Soc. from 1995-2001 - although dated, there's still much good stuff here.
Pain Management (Cleveland Clinic) "Chronic pain can rule your life, interfering with your ability to work, sleep and enjoy your family and friends. When chronic pain disrupts your quality of life and does not improve with standard treatments, Cleveland Clinic Pain Management specialists are among the most experienced in the world, treating more than 10,000 patients each year."
Pain Management Health Center from WebMD, a large, multifaceted site, including "hot topics in pain management (PM)," "latest headlines", "managing your chronic pain", "today on WebMD videos", a large Pain Management Guide, and much more!
Pain Management Online useful site; accompanies a chain of pain mngmt. clinics
Pain Management Plan (from the Arthritis Foundation) small model template for a plan for dealing with chronic pain
Pain Management Resource Guide (Massachusetts) very good; part of the Div. of Prof. Licensure site
Pain Map from HeadInjury.com, a very detailed map of the brain and the various injuries that can befall it
Pain Medicine and Palliative Care from Beth-Israel Hospital's Dept. of Pain Medicine and Palliative Care
Pain Net, Inc. information, training, holistic Tx of chronic pain
PainPathways.org Pain Pathways is a quarterly publication - "the first, only and ultimate pain magazine! This quarterly resource not only provides in-depth information on current treatments, therapies and research studies but also connects people who live with pain, both personally and professionally."
Pain & Policy Studies Group (Univ. of Wisconsin) an excellent, multidisciplinary group which lobbies for sufferers of chronic pain
Pain Relief Foundation "in the UK - established as a registered charity in 1979, in response to the need for specialized research into the causes and treatment of chronic pain in humans."
Pain Relief Network "a public network of patients and their family members, physicians, attorneys, and activists who are working toward affording all people in pain dignity and compassion in the treatment of their medical conditions."
Pain Research Center University of Utah a top-tier organization which provides services, education, and carries out research on chronic pain of all kinds. Excellent site for newcomers to the world of chronic pain and their families.
Pain Research Institute intimately connected with the Pain Relief Foundation (see several items above this). "The Institute is part of the Division of Neurological Science in the School of Clinical Sciences, and sees over 3000 patients each year."
Pain Research at Oxford "Pain Research at Oxford is pretty complex, even for those of us who have worked here for years. We have our academic home in the University of Oxford , the Nuffield Department of Anaesthetics and the Medical School"
Pain Resource Center "The Consumer Care Division of Bayer HealthCare is one of the leading suppliers of non-prescription (OTC) drug products and dietary supplements."
Pain Resources for Patients and Their Families a really excellent collection of links, maintained by the Utah group (above). It was clearly carefully edited, and is not just a huge list of links.
Pain Web, The "The website for health professionals" current news, slideshows, meetings, case reports, etc.
PainWorld Australian site on chronic pain - info on treatments, trials, page for newcomers, etc. Very complete.
Partners Against Pain "site offers a wide variety of evidence-based resources for healthcare professionals and patients. "
Patient Advocate Foundation a multipurpose site, all in the interest of providing resources for chronic pain patients. It "provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness. "
Patient Self-Help from the site of Dr. Forest Tennant, this links to a series of pdf articles directed toward patients with intractable pain (like us). Some are great, like how to find a good pain doc; some aren't, like the one on "electricity controls" which advocates, among other treatments, wearing copper bracelets.
Peripheral Neuropathy a major piece on peripheral neuropathy, mostly in the context of HIV illness, but it's the same syndrome and hurts just as much in either syndrome.
Persistent Pain - Pain Self Management "Information on chronic pain self management, support groups and pain toolkit"
Physicians4Patients "made by physicians - for patients". It's essentially a physician-mediated online support group. Better than it sounds.
PostOperative Pain Management (Virtual Anaesthesia Textbook) from GE HealthCare, a complete, fascinating, but not overly rigorous, textbook on anesthesia, formatted with minimal text and many links. A great resource.
Power Of Pain Foundation the POPF "provides community based services that address needs of chronic pain patients with Neuropathy conditions such as RSD/CRPS, post cancer pain, fibromyalgia, diabetic neuropathy, lyme, lupus, and more."
Power Over Your Pain lots of good information, but it's geared solely toward SCS, and almost reads as a sophisticated advertisement for the technology. No surprise, since the site is maintained by Saint Jude Neuromodulation Systems, Inc., a dba for Advanced Neuromodulation Systems. They were warned about quality control problems by the FDA in 2009.
Practical Pain Management a monthly magazine for healthcare professionals, with many very good articles each month that are directly relevant to those of us with CRPS/RSD.
Preventing chronic pain with stress management from healthcanal.com, a very good review on ways to reduce stress and thus reduce pain levels.
RCN Pain Forum by the Royal College of Nursing in the UK
Relief of Chronic Non-Malignant Pain long, easily read paper by Oxford's pain research P.I., Prof. Henry McQuay - excellent!
Rest Ministries a service ministry for people who live with chronic pain
Sceptor Pain Foundation is committed to providing access to pain management and treatment resources.
The Societal Impact of Pain (SIP) "The "Societal Impact of Pain" (SIP) is an international platform created in 2010 as a joint initiative of EFIC and the pharmaceutical Grünenthal GmbH."
Society of Critical Care Medicine "devoted exclusively to the advancement of multi-professional intensive care through excellence in patient care, education, research, and advocacy. "
Society for Pain Practice Management a professional society, "the objectives of the Society are to promote the health and wellness of mankind by advancing the art and science of the specialty of Pain Management."
Specialist Pain Physio "Physiotherapy for pain and injury in London - Practical Solutions for Painful Conditions". An organization in the UK with four clinics in and around London which treat CRPS as part of their daily routine. And remember, since it's in the UK, it's all free.
Tame the Pain a good site, but sponsored by Medtronic®, with the obvious slant toward SCS and similar therapies
TNA-The Facial Pain Association "the mission of the TNA-The Facial Pain Association is to serve as an advocate for patients living with trigeminal neuralgia (TN) and related facial pain conditions by providing information, encouraging research, and offering support."
Understanding Pain as the Fifth Vital Sign a pdf of a PowerPoint for nurses (19 slides). Very good for all audiences.
U.S. Pain Foundation "believes strongly in the importance of connecting those who share the feelings, frustrations, and daily challenges of living with pain. "
Virtual Anæsthesia Textbook "the goal is to create and maintain, using a familiar 'textbook' style, a comprehensive set of links to all known anesthesia related internet information." This is a huge, well-organized resource!
Visiting the ER for Chronic Pain "How to reduce stress and suspicion when seeking chronic pain medications." A very readable, 3-page guide on increasing your chances of a successful ER visit by chronic pain patients. Especially useful is a list of five specific suggestions.
WebMD Pain Management Health Center "offers current information on chronic pain treatments, as well as natural ways to manage chronic pain. One feature is an online support group."
WIP-World Institute of Pain "founded in 1993 as a worldwide organization that aims to promote the best practice of pain medicine for the 21st century." Mainly for physicians, but lots of great information.Worldwide Congress on Pain all you ever wanted to know about chronic pain!