Chapter 1: Getting Started: From Confusion to Knowledge
Fibromyalgia for most patients begins with pain and confusion. Pervasive and persistent pain appearing with no apparent cause and not responding to typical treatments can leave the patient and care providers frustrated. Diagnostic parameters of this disorder are poorly defined due to its inherent nature. Diagnosis frequently boils down to the elimination of other possibilities, a process that can be both long and confusing. No specific medical tests apply, and no established set of symptoms exist that provide a definitive diagnosis. Confusion and doubt have been central to fibromyalgia throughout its history.
This is our purpose: To develop an individualized treatment approach, confusion must be replaced with understanding so that specific actions can be focused toward the reduction of symptoms.
There is no shortage of information about fibromyalgia and its many different treatment options. Books, websites, magazine, associations and organizations abound on this topic.
Much of the information available online is, unfortunately, of dubious quality. The problem is so pervasive that it triggered a research study of its own, a study that concluded that the majority of fibromyalgia websites are deeply flawed (Click HERE for an article on this research study). This is one of the primary motivations behind our website at http://www.fibromyalgia-treatment.com. Our goal is provide an online source for definitive research based articles and information related to fibromyalgia - so of course we urge readers to use this resource.
In addition to our website, many others provide a wealth of information. We urge those fighting fibromyalgia to use the internet as a source of knowledge and a resource for their own research and education. Step one in any effective treatment effort is going to be replacing confusion with knowledge. This process will of course be ongoing, but simply initiating it is a positive action aimed in the right direction.
Books
There have been hundreds if not thousands of books published on fibromyalgia. Below are brief reviews of 4 favorites:
The Complete Idiots Guide to Fibromyalgia By: Lynne Matallana with Laurence A. Bradley Ph.D, Stuart Silverman MD, Muhammad Yunus MD
This is a great book. It covers a diverse battery of information and stresses the critical importance of developing and implementing a self-management program. This book also covers many treatment options, the building of a care-provider team, and details on actions you can take to move your treatment efforts forward.
From Fatigued to Fantastic By: Jacob Teitelbaum MD
This book should be considered a mandatory reference manual. Fair warning - the amount of information presented is massive. Dr. Teitelbaum goes into great detail on a huge variety of possible treatment options, so much so that it can be overwhelming. This is not the kind of book someone is going to sit down and just read; its presentation is complicated and at times the content can be difficult to digest. Teitelbaum does focus on the need to develop an individualized treatment protocol, but while he is overwhelming in detail relative to what options are recommended, he is a bit short in details on the management process. Despite any shortcomings though, this book has a huge amount of detailed reference information.
Fibromyalgia for Dummies
By: Roland Staud, MD with Christine Adamec
This is both an excellent starting point for beginners and a great reference manual for the seasoned warrior. Much material is covered relative to different treatment options. Much effort is put forth in explaining the history and background related to fibromyalgia, and the reader gains a solid understanding of the struggles those suffering from fibro have faced in having the syndrome accepted by the medical establishment. One shortcoming in this book is its lack of focus on the need for strong self-management processes. The book documents a wealth of information about treatment options, but it does not delve into discussions about how these efforts should be integrated into an overall plan. Still, it's a worthwhile read and good reference source.
Fibromyalgia & Chronic Myofascial Pain
By: Devin Starlanyl and Mary Ellen Copeland
This is another book that covers a huge amount of content in a largely textbook style manner. Information about Myofascial pain is covered in detail, and it's very helpful given the level of co-morbidity between these two syndromes. This book goes into more detail concerning possible causes and triggers, and it discusses the relationships between causal factors at length. The authors discuss the interactions and complications associated with different treatment approaches and the need for the patient to strive to integrate treatments into a comprehensive management strategy, but little detail is provided on any related processes. Despite this lack, the huge amount of relevant content and excellent supporting graphics are excellent.
Associations and Internet Resources
Considerable resources are available to fibromyalgia sufferers, all of which provide a multitude of information on living with and treating the disease. Several professional associations have devoted themselves to increasing awareness of fibromyalgia and advocating for those who suffer from it. The National Fibromyalgia and Chronic Pain Association (NFMCPA) joined forces with the now inactive National Fibromyalgia Association (NFA) to become the leading nonprofit organization dedicated to the support of individuals with fibromyalgia and other chronic pain illnesses. Their mission is to educate patients, the medical community, the public, government, and scientists regarding the importance of timely diagnosis and appropriate treatment for fibromyalgia and overlapping conditions. NFMCPA is donor-supported, and members have access to a wealth of information on their website (www.fmcpaware.org), including e-newsletters, Fibromyalgia and Chronic Pain LIFE magazine, online discussion forums, general information on fibromyalgia and overlapping conditions, as well as research and advocacy updates. The NFA website also remains available to fibromyalgia patients (www.fmaware.org) with a number of online resources still available. Other organizations that can provide information and support to fibromyalgia sufferers include the American Pain Foundation (www.painfoundation.org) and the American Academy of Pain Management (www.aapainmanage.org). In addition, a yearly conference on pain, known as PAINWeek, is held each September as an educational opportunity for medical professionals who have an interest in pain management.
A number of Internet-based resources are also available to those who suffer from fibromyalgia. In addition to our website, www.fibromyalgia-treatment.com, the online resource Co-cure (www.co-cure.org) contains helpful information for both fibromyalgia and chronic fatigue syndrome patients, including a daily newsletter, a message board, a list of “good doctors,” and a comprehensive review of additional online resources. The website www.immunesupport.comis an industry-sponsored patient education site that donates to fibromyalgia and chronic fatigue syndrome research and advocacy initiatives. In addition, it contains a large repository of articles, as well as message boards and support group information. Finally, the Oregon Fibromyalgia Foundation is the website of well-known fibromyalgia researchers Robert Bennett and colleagues (www.myalgia.com).
In addition to the education and advocacy these organizations provide, there are a number of magazines and newsletters that provide fibromyalgia-specific information and support to consumers. The NFMCPA publishes their bi-monthly magazine Fibromyalgia and Chronic Pain LIFE, which is available for free to registered members. Back issues are available for download on their website. The Fibromyalgia Network, a member-supported patient-advocacy organization that covers the latest fibromyalgia-related research and treatments, publishes both a quarterly journal (Fibromyalgia Network Journal) and monthly eNews pertaining to topics of interest for both fibromyalgia and chronic fatigue syndrome sufferers. These publications are all free of advertisements. Fibromyalgia Alternative News is an alternative health magazine devoted to exploring the underlying causes of fibromyalgia and chronic fatigue syndrome, and is published quarterly by the nonprofit organization “Fibromyalgia Coalition International.” Other periodicals that may be of interest to fibromyalgia suffers include magazines such as Women’s Health, which provides information on health, fitness, nutrition, and beauty issues of interest to women, as well as Prevention magazine. Prevention focuses on providing information for consumers to help them lead a healthy lifestyle and prevent disease.
In the academic world, a number of scientific journals regularly publish fibromyalgia-related information and research. Although fibromyalgia is not a form of arthritis and does not arise due to joint or muscle inflammation (like rheumatic diseases do), it causes chronic pain and fatigue very similar to arthritis, and therefore Rheumatologists are often involved in the diagnosis and treatment of fibromyalgia. As such, many Rheumatology-focused medical journals publish fibromyalgia-related research findings on a regular basis. Arthritis & Rheumatism is the official monthly journal of the American College of Rheumatology, and covers information related to diagnosis, treatment, research, and socioeconomic issues that relate to all rheumatic diseases. Other journals include The Journal of Rheumatology, Clinical Rheumatology, Journal of Clinical Rheumatology, and Clinical and Experimental Rheumatology. In addition, several journals focused on pain management regularly publish findings related to the treatment of fibromyalgia. These include publications such as Pain and The Journal of Pain.
Doctors, Care Providers, and Therapists
Fibromyalgia is not a form of arthritis or rheumatic disease in general, however, rheumatologists are commonly consulted during a patient’s quest to achieve a diagnosis. This is because the symptoms of fibromyalgia are similar to those of rheumatoid arthritis and other chronic pain conditions of the muscular-skeletal system. Since the diagnosis of fibromyalgia is one of exclusion, these conditions must be ruled out. A rheumatologist is often the most appropriate specialist to do so. In addition to rheumatologists, neurologists are becoming increasingly more involved in the diagnosis and management of fibromyalgia, as our understanding of fibromyalgia as a neurological condition (rather than a rheumatological condition) continues to evolve. General practitioners and internal medicine physicians can also diagnose and treat fibromyalgia. In addition, psychotherapists and psychologists are an important part of a fibromyalgia patient’s care plan. Anxiety and Depression commonly occur with fibromyalgia, and these specialists can help patients address and manage the psychological components of the disease.
In addition to medical doctors, physical and occupational therapists can be of great benefit to fibromyalgia patients. Physical therapy combines therapeutic exercise with other modalities, including ultrasound, electrical stimulation and massage, in an effort to increase flexibility and strength, reduce pain, and improve overall mobility. Physical therapists are licensed healthcare providers specifically trained to administer these therapies. Occupational therapists are also licensed healthcare providers who receive specialized training related to the physical and psychological ramifications of illnesses and injuries. They help patients who have difficulty performing normal activities to regain functioning and independence by modifying the environment to fit a patient’s needs.
It is important to note that for most individuals who suffer from fibromyalgia, effective management and treatment is most often achieved through an integrated system of pharmaceutical therapy, complementary and alternative therapies (such as acupuncture, chiropractic, and massage therapy), dietary modifications and supplements, and regular exercise. For those patients who suffer from anxiety and depression, tailored psychotherapy is also crucial.
More detailed information about Doctors and Care Providers is covered in discussions about building your individual care team in Chapters 4 and 5.
Learn more about - Medical Specialists in the treatment of Fibromyalgia.
Participation in fibromyalgia support groups, whether online or in person, can also be of benefit to patients. Support groups offer an opportunity for fibromyalgia patients to connect with others who have the disease and gain valuable insight that can help overcome challenges and improve their understanding of the lifestyle changes that result from a diagnosis of fibromyalgia. Support groups also offer emotional support, facilitate the exchange of information related to treatment strategies, and provide a safe and understanding environment for patients who can often feel neglected, ostracized, and misunderstood by the medical community.
It is important to understand that not all support groups are the same. Some may be discouraging in tone, with a pervasive focus on the negative aspects of fibromyalgia. Others may unevenly distribute member participation, with one or two individuals dominating the meetings and the focus of the group. Therefore, it is important for you to choose the support group that is best for you and your fibromyalgia. Make sure you choose one that reinforces the positive factors in your life, is constructive and caring, and encourages participation from all members. You may need to try out a few different groups before you find the right fit for you. You may prefer a live support group, or you may wish to test the waters with an online support group first. For some people, using a combination of the two may be most beneficial.
A few examples of the numerous online support communities available include:
The Arthritis Foundation sponsors fibromyalgia support groups in many locations across the United States. You can find one of these groups by visiting their online support group directory at their website, www.arthritis.org.
The NFCPA website also offers a directory of support groups (www.fmcpaware.org/support-groups), organized by state. Individuals who are interested in starting a support group of their own can also visit the NFCPA website to find information and resources to assist in the startup process, as well as to register new support groups with the NFCPA directory.
Support Groups and Accountability
Support groups can provide camaraderie for fibromyalgia patients, however they should not be viewed as mere “clubs” where patients convene to commiserate about how terrible they feel. Effective support groups will consist of highly motivated individuals who strive to help each other through the decision making processes that are required to progress toward achieving treatment goals. Support groups should enable members to help each other with goal-setting, review treatment ideas, obtain feedback and opinions on collective symptoms, and maintain motivation during bad times. The KEY to a successful support group is that all members maintain their accountability to each other. Like soldiers in a foxhole, support group members are in this war against fibromyalgia together. They should hold each other accountable, as accountability has demonstrated effectiveness in helping people achieve a variety of goals, and it can also help patients progress toward reducing fibromyalgia symptoms as well.
The FibroTrack online self-management system includes many tools focused on assisting those with fibromyalgia in building and participating in an effective, meaningful online support group. This includes a sophisticated system for matching potential support group members based on their demographic data (age, geographic location, work situation, comorbid conditions and Fibromyalgia symptoms). FibroTrack also facilitates support group interaction with social networking functions, contact sharing and rating, symptoms and treatment program sharing, private messaging and forums. The FibroTrack system has been designed from the ground up to promote and support effective support groups.
The information presented in this ebook is merely an overview of the highlights of these topics. Please visit our website, www.fibromyalgia-treatment.com for more detailed information, including blogs, articles, webinars, and much, much more.
Our primary focus at www.fibromyalgia-treatment.com is all about the “How” to do it! Information abounds on fibromyalgia, and so many treatment options are available that the information can be confusing and conflicting if you don’t have a trustworthy source to guide you through it all. Our website can help you pull it all together, create a plan based on your specific needs, and then execute that plan to work toward successful management of your fibromyalgia. The tools available to you on our website will allow you to develop and implement an individual fibromyalgia self-management program, a system, designed BY you (and your team) FOR you (and your team), that is specifically targeted at treating fibromyalgia as is manifests itself in your body and your life.
Step 1: Learn. Knowledge is the foundation of effective action. The following articles on our website can provide the foundation of knowledge required to get you started: