Your Guide to Treating Fibromyalgia

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This ebook is packed with detailed information about the most effective means of treating Fibromyalgia. Experts and Researchers agree that a "Patient Directed" Fibromyalgia management program is the best treatment approach. While dozens of proven effective treatment options are discussed at length, the focus of this book is on the process of putting systems to use in researching, planning, implementing and managing the development of an individualized Fibromyalgia treatment program. Through the key concept of "Intelligent" Trial and Error - this ebook will teach you a more effective means of managing your Fibromyalgia on a daily basis.

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Your Guide to Treating Fibromyalgia

  1. 1. 2Your Fibromyalgia Treatment GuideTreating Fibromyalgia Through the Development, Validation and Utilization of an Individualized Self-Management System. Brought to you by: Fibromyalgia-Treatment.com 2
  2. 2. 3Table of ContentsIntroduction ..................................................................................................................................... 5Chapter 1: Getting Started: From Confusion to Knowledge ...................................................... 10 Associations and Internet Resources .................................................................... 13 Magazines and Journals ........................................................................................ 14 Doctors, Care Providers, and Therapists............................................................... 15 Support Groups ..................................................................................................... 16 Support Groups and Accountability...................................................................... 17 Primary Focus ....................................................................................................... 18Chapter 2: Reviewing Fibromyalgia ............................................................................................ 19 History and Introduction ....................................................................................... 19 Demographics ....................................................................................................... 20 Symptoms ............................................................................................................. 20 Fibromyalgia Triggers .......................................................................................... 27 Diagnosis............................................................................................................... 27 Causal Theories ..................................................................................................... 29Chapter 3: Fibromyalgia: The Elusive Fiend .............................................................................. 30 General Confusion ................................................................................................ 30 A Tough Nut to Crack........................................................................................... 32 Symptom–Cause Interplay and Confusion ........................................................... 32 Negative Feedback Loops ..................................................................................... 33 Medical System ..................................................................................................... 35 "Magic Pill Syndrome" ......................................................................................... 37 Effective Treatment - Overwhelming Options .................................................... 38Chapter 4: Self-Management: Basis for Effective Treatment...................................................... 40 Taking Responsibility ........................................................................................... 40 Education - Laying the Foundation for Success ................................................... 41 Defining Your Fibromyalgia................................................................................. 42 Building Your Team ............................................................................................. 43 Take Action ........................................................................................................... 44 Setting Goals ......................................................................................................... 45 Become a Problem-Solver .................................................................................... 46 Evaluating Treatment Options .............................................................................. 47 Self-Empowerment ............................................................................................... 49 Self-Management Conclusion............................................................................... 50Chapter 5: Treating Fibromyalgia: What you need to know ...................................................... 51 Medical Specialists ............................................................................................... 51 Create a Partnership with your Physician ............................................................. 55 FDA-Approved Pharmaceuticals .......................................................................... 57 Antidepressants ..................................................................................................... 59 Prescription Sleep Medications............................................................................. 60 Anti-Anxiety Medications .................................................................................... 60 Pain Management.................................................................................................. 61 Coping Strategies for Pain .................................................................................... 63 Dietary Supplements ............................................................................................. 63 3
  3. 3. 4 Diet ........................................................................................................................ 66 Exercise ................................................................................................................. 67 Therapies ............................................................................................................... 68Chapter 6: Pulling it all Together: A Systematic Approach ....................................................... 70 Tools ..................................................................................................................... 75 Tracking Symptoms .............................................................................................. 77 Tracking Causal Relationships, Events, and Triggers .......................................... 77 Tracking Your Treatments .................................................................................... 78 “Intelligent Trial and Error” – A Concept and a System ...................................... 79 The Key to Success ............................................................................................... 80Chapter 7: The Future: "FibroTrack" .......................................................................................... 81 FibroTrack: Internet Enhanced Self-Management............................................... 82 Disclaimer ............................................................................................................. 85-------------------------------------------------- 4
  4. 4. 5IntroductionI am not a doctor, nor a research scientist, medical professor, nurse, therapist ormedical practitioner in any sense. There are no fancy plaques on my wall thatproject some aura of authority over me on this subject (my degree is in History.). Ido not have fibromyalgia. So why am I writing an ebook on this subject - and whyshould you pay any attention?Fibromyalgia has undermined my life. It is working to destroy my wife and wreakhavoc on the lives of my 2 children. Experts always stress that writers and businesspeople should focus their efforts on something they are passionate about. Am Ipassionate about fibromyalgia? Absolutely! I passionately hate it, to be precise. Ilove my wife and I have watched her suffer to extremes as we both fought feelingsof helplessness and hopelessness for years. I qualify as an expert in howfibromyalgia can destroy.My wife and I chased a dream together. Not a small dream, not a typical sort ofdream but something extraordinary (at least to us). We got it into our heads that wecould move our family aboard a sailboat to live full time, home school our kids andlive a lifestyle of freedom and discovery spending quality time with each other andour kids. We read, studied, learned and planned and in 2008 we began to make thisdream a reality. I purchased a 47 sailboat and poured all that we had into buildingthe boat into a home and restructuring our lives to make this huge change a reality.Through all of this - we fought fibromyalgia. My wife Michele was diagnosed withfibro in 2003 after the birth of our daughter. She exhibited some symptoms beforethe pregnancy (her 2nd) but it was only after the c-section birth of our daughterthat the fibro began its assault in earnest. The diagnostic process was typicallyconfusing, frustrating and long. We suffered through multiple misdiagnoses, moremedical tests than we can recall and a long list of "treatments" - none of whichreally achieved anything more than draining our bank account.After being diagnosed with fibromyalgia and learning about the difficulties intreatment, Michele began focusing her attention on researching and implementingtreatment options while my focus remained on running our business so we couldpay for the expensive treatment efforts she needed. (Self-employed with a verysmall company - our insurance paid for essentially nothing). We went throughmany doctors and tried different drugs and combinations of drugs and listened tomany specialists. Through it all the fibromyalgia waxed and waned but it was 5
  5. 5. 6always there. At times things got better and we were deluded into believing acorner had been turned only to feel crushed again when things got worse. But - wemaintained our dream.Through 2008 as our efforts to make the sailing dream a reality began to pick upsteam we also increased the war against fibromyalgia. We began seeing a fibrospecialist center, and despite this care being extremely expensive, we went all-in.We both believed that putting forth the effort in a big push to once and for all crushthis beast would yield success, and if it didnt, we had a backup plan. The backupplan was simple - If you’re going to be in pain, you might as well be in pain in atropical paradise living aboard a boat. That sounded pretty good at the time.All of the hard work and effort did pay off. Michele felt much better. In late 2009we moved aboard our boat full time and began to "live the dream". We hadproblems (the saying "Going cruising is just repairing your boat in exoticlocations" is true). We had adventures and we had fibro. After getting away fromthe "Big Push" medical efforts the fibro began to slowly build back. After wereturned from the Bahamas in June of 2010, fibromyalgia flared with a vengeance,raging like I had never seen before and transforming Michele into a completewreck.We were convinced something more was wrong. This flare was different. The painwas overwhelming but it went beyond that to shaking and convulsions and hugemigraines coupled with severe anxiety, bowel pains, horrible leg cramping andother symptoms. Was this MS? Could a brain tumor be in play? What could becausing all these new symptoms and in such severity? We were distraught andconfused, but one thing rapidly became clear - the "Cruising Dream" was dead.Michele was in serious trouble. We had to seek medical care at once to find outwhat was really wrong.This was the worst time of my life. Its bad enough having dreams crushed, butwatching my wife suffer was overwhelming. We launched into a whole newendeavor to determine what was wrong. Medical tests flew about like confetti onNew Years Eve. Medical bills flowed in on a scale that was shocking. We sawevery sort of doctor known to man. The end result, other than insane medical billtotals, was simply this: fibromyalgia.As we began dealing with fibro on a new level and working to put our lives back insome semblance of order, I began to feel a new sense of mission. I would focus mylife on helping my wife overcome this disease and provide my family with the rich 6
  6. 6. 7and productive life that they want and need. I had lots of ideas on what form thismight take, but the first step was to make myself an expert on fibromyalgia. I setabout this task aggressively reading everything I could find. I read books, studiedonline, delved deep into research reports, contacted research scientists and ingeneral, did everything I could to figure out how to help my wife. I had everyexpectation that my efforts would yield a magic combination of treatments thatwould bring complete success.I no longer have those expectations. Education and knowledge are wonderfulthings, but in this case, reward was tempered as I began to realize that fightingfibro is a war, not just a single battle.I also understood that determining what treatments would be most effective forMichele would be an individual struggle. I learned that fibromyalgia manifestsitself differently in each patient and that developing an effective treatment strategywould require implementing strong systems in order to effectively managetreatment efforts. I needed to be able to not only research what treatment optionswere possible, but to quantify results and validate the combined treatmentapproach that we were developing. I learned that the research data indicated amulti-faceted treatment approach. Such an approach consisting of pharmaceuticals,dietary supplements, exercise, diet changes, therapies and alternative medicine wasmost likely to yield lasting results, but determining what combination would bebest for Michele would be an ongoing individual process.The more I learned, the more I began to seek out information about self-management programs. Among the very few things I found consistent among the"experts" on fibromyalgia was the call for patients to embrace the concept of self-management. It was clear to me: given the nature of fibromyalgia that a patient-directed, team-focused self-management approach made by far the most sense,but moving from the conceptual idea to implementation proved to be verydifficult.I began to seek programs or systems to utilize in this process. Given that there is somuch material out there relative to management of illnesses in general, I expectedto find structured online programs specifically aimed at assisting those fightingfibromyalgia in their running of an ongoing self-management program. I searchedextensively, but no such program existed. Experts and educational programs existthat are aimed at convincing you that embracing the concept of self-management iscrucial to treatment success. However, I found nothing in online systems aimed at 7
  7. 7. 8facilitating an ongoing process. Its one thing to learn what one may need to do, butit is something else to determine how to actually do it. I found no "how."This need is what has driven both this ebook and the development of theFibroTrack application. My focus is not on telling you specifically what you needto do in order to treat your fibromyalgia. Anyone who purports to tell you whattreatments will be effective for you probably does not understand fibromyalgia atits most basic level. The reality is that effective treatment varies from patient topatient and the only way you can tell if any given treatment will be effective foryou is to test it. My focus is on this part: the systems and processes required toimprove your ability to intelligently test and determine what does work, for you.In effect, I am not trying to tell you what you should do for effective treatment - Iam suggesting to you how to proceed toward effective treatment. What is a self-management program? How do you develop, implement, and manage one on anongoing basis? This ebook answers these questions.The concepts and processes that I present in this book are not new. I have not beenengaged in new conceptual research and the processes discussed here are notrevolutionary new developments. What I have done is take existing research dataand treatment process suggestions from many different experts and combine theminto an overall strategy that can be implemented and managed by those strugglingwith fibromyalgia.I hope this ebook helps you to improve your fight against fibromyalgia. You willfind references to the FibroTrack application throughout this ebook and I do firmlybelieve that FibroTrack can help any patient improve their self-managementefforts. But you do not have to utilize FibroTrack in order to put the concepts andsystems outlined in this ebook into action. I urge you - please - make the effort toimplement what you learn here. Knowledge without action never yieldssuccess. Please take what you learn and put it into action.I also need to point out that a great deal of relevant information about fibromyalgiais not in this ebook, but is available on my website. The following 3 main sectionsof the site have expandable menus to the left through which you can navigate tohundreds of detailed articles, all based on medical research with most includingreferences to source research materials. My goal for our website is simple: Toprovide the largest and most accurate repository of fibromyalgia information on theInternet. 8
  8. 8. 9Click these links to learn more!What is Fibromyalgia? Fibromyalgia Treatment Fibromyalgia SymptomsAlso - Please follow my Blog.Finally - THANK YOU. Thank you for downloading this ebook and taking thetime to read it. I truly value the trust you have placed in me by taking the time toread the information I have put together for you.If you have any suggestions, questions, concerns or problems that you feel I maybe able to help with, I urge you to contact me. Email:terrycspringer@yahoo.com----------------------------------------------------------- 9
  9. 9. 10Chapter 1: Getting Started: From Confusion to KnowledgeFibromyalgia for most patients begins with pain and confusion. Pervasive andpersistent pain appearing with no apparent cause and not responding to typicaltreatments can leave the patient and care providers frustrated. Diagnosticparameters of this disorder are poorly defined due to its inherent nature. Diagnosisfrequently boils down to the elimination of other possibilities, a process that can beboth long and confusing. No specific medical tests apply, and no established set ofsymptoms exist that provide a definitive diagnosis. Confusion and doubt have beencentral 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 befocused toward the reduction of symptoms.There is no shortage of information about fibromyalgia and its many differenttreatment options. Books, websites, magazine, associations and organizationsabound on this topic.Much of the information available online is, unfortunately, of dubious quality. Theproblem is so pervasive that it triggered a research study of its own, a study thatconcluded that the majority of fibromyalgia websites are deeply flawed (ClickHERE for an article on this research study). This is one of the primary motivationsbehind our website at http://www.fibromyalgia-treatment.com. Our goal is providean online source for definitive research based articles and information related tofibromyalgia - so of course we urge readers to use this resource.In addition to our website, many others provide a wealth of information. We urgethose fighting fibromyalgia to use the internet as a source of knowledge and aresource for their own research and education. Step one in any effective treatmenteffort is going to be replacing confusion with knowledge. This process will ofcourse be ongoing, but simply initiating it is a positive action aimed in the rightdirection.BooksThere have been hundreds if not thousands of books published on fibromyalgia.Below are brief reviews of 4 favorites: 10
  10. 10. 11The Complete Idiots Guide to FibromyalgiaBy: Lynne Matallana with Laurence A. BradleyPh.D, Stuart Silverman MD, Muhammad YunusMDThis is a great book. It covers a diverse battery ofinformation and stresses the critical importance ofdeveloping and implementing a self-managementprogram. This book also covers many treatmentoptions, the building of a care-provider team, anddetails on actions you can take to move yourtreatment efforts forward.From Fatigued to FantasticBy: Jacob Teitelbaum MDThis book should be considered a mandatoryreference manual. Fair warning - the amount ofinformation presented is massive. Dr. Teitelbaumgoes into great detail on a huge variety of possibletreatment options, so much so that it can beoverwhelming. This is not the kind of book someoneis going to sit down and just read; its presentation iscomplicated and at times the content can be difficultto digest. Teitelbaum does focus on the need todevelop an individualized treatment protocol, butwhile he is overwhelming in detail relative to what options are recommended, he isa bit short in details on the management process. Despite any shortcomings though,this book has a huge amount of detailed reference information. 11
  11. 11. 12Fibromyalgia for DummiesBy: Roland Staud, MD with Christine AdamecThis is both an excellent starting point forbeginners and a great reference manual for theseasoned warrior. Much material is coveredrelative to different treatment options. Mucheffort is put forth in explaining the history andbackground related to fibromyalgia, and thereader gains a solid understanding of thestruggles those suffering from fibro have faced inhaving the syndrome accepted by the medicalestablishment. One shortcoming in this book isits lack of focus on the need for strong self-management processes. The book documents awealth of information about treatment options, but it does not delve intodiscussions about how these efforts should be integrated into an overall plan. Still,its a worthwhile read and good reference source.Fibromyalgia & Chronic Myofascial PainBy: Devin Starlanyl and Mary Ellen CopelandThis is another book that covers a huge amountof content in a largely textbook style manner.Information about Myofascial pain is covered indetail, and its very helpful given the level of co-morbidity between these two syndromes. Thisbook goes into more detail concerning possiblecauses and triggers, and it discusses therelationships between causal factors at length.The authors discuss the interactions andcomplications associated with different treatmentapproaches and the need for the patient to striveto integrate treatments into a comprehensivemanagement strategy, but little detail is providedon any related processes. Despite this lack, the huge amount of relevant contentand excellent supporting graphics are excellent. 12
  12. 12. 13Associations and Internet ResourcesConsiderable resources are available to fibromyalgia sufferers, all of which providea multitude of information on living with and treating the disease. Severalprofessional associations have devoted themselves to increasing awareness offibromyalgia and advocating for those who suffer from it. The NationalFibromyalgia and Chronic Pain Association (NFMCPA) joined forces with thenow inactive National Fibromyalgia Association (NFA) to become the leadingnonprofit organization dedicated to the support of individuals with fibromyalgiaand other chronic pain illnesses. Their mission is to educate patients, the medicalcommunity, the public, government, and scientists regarding the importance oftimely diagnosis and appropriate treatment for fibromyalgia and overlappingconditions. NFMCPA is donor-supported, and members have access to a wealth ofinformation on their website (www.fmcpaware.org), including e-newsletters,Fibromyalgia and Chronic Pain LIFE magazine, online discussion forums, generalinformation on fibromyalgia and overlapping conditions, as well as research andadvocacy updates. The NFA website also remains available to fibromyalgiapatients (www.fmaware.org) with a number of online resources still available.Other organizations that can provide information and support to fibromyalgiasufferers include the American Pain Foundation (www.painfoundation.org) and theAmerican Academy of Pain Management (www.aapainmanage.org). In addition, ayearly conference on pain, known as PAINWeek, is held each September as aneducational opportunity for medical professionals who have an interest in painmanagement.A number of Internet-based resources are also available to those who suffer fromfibromyalgia. In addition to our website, www.fibromyalgia-treatment.com, theonline resource Co-cure (www.co-cure.org) contains helpful information for bothfibromyalgia and chronic fatigue syndrome patients, including a daily newsletter, amessage board, a list of “good doctors,” and a comprehensive review of additionalonline resources. The website www.immunesupport.com is an industry-sponsoredpatient education site that donates to fibromyalgia and chronic fatigue syndromeresearch and advocacy initiatives. In addition, it contains a large repository ofarticles, as well as message boards and support group information. Finally, theOregon Fibromyalgia Foundation is the website of well-known fibromyalgiaresearchers Robert Bennett and colleagues (www.myalgia.com). 13
  13. 13. 14Magazines and JournalsIn addition to the education and advocacy these organizations provide, there are anumber of magazines and newsletters that provide fibromyalgia-specificinformation and support to consumers. The NFMCPA publishes their bi-monthlymagazine Fibromyalgia and Chronic Pain LIFE, which is available for free toregistered members. Back issues are available for download on their website. TheFibromyalgia Network, a member-supported patient-advocacy organization thatcovers the latest fibromyalgia-related research and treatments, publishes both aquarterly journal (Fibromyalgia Network Journal) and monthly eNews pertainingto topics of interest for both fibromyalgia and chronic fatigue syndrome sufferers.These publications are all free of advertisements. Fibromyalgia Alternative News isan alternative health magazine devoted to exploring the underlying causes offibromyalgia and chronic fatigue syndrome, and is published quarterly by the non-profit organization “Fibromyalgia Coalition International.” Other periodicals thatmay be of interest to fibromyalgia suffers include magazines such as Women’sHealth, which provides information on health, fitness, nutrition, and beauty issuesof interest to women, as well as Prevention magazine. Prevention focuses onproviding information for consumers to help them lead a healthy lifestyle andprevent disease.In the academic world, a number of scientific journals regularly publishfibromyalgia-related information and research. Although fibromyalgia is not aform of arthritis and does not arise due to joint or muscle inflammation (likerheumatic diseases do), it causes chronic pain and fatigue very similar to arthritis,and therefore Rheumatologists are often involved in the diagnosis and treatment offibromyalgia. As such, many Rheumatology-focused medical journals publishfibromyalgia-related research findings on a regular basis. Arthritis & Rheumatismis the official monthly journal of the American College of Rheumatology, andcovers information related to diagnosis, treatment, research, and socioeconomicissues that relate to all rheumatic diseases. Other journals include The Journal ofRheumatology, Clinical Rheumatology, Journal of Clinical Rheumatology, andClinical and Experimental Rheumatology. In addition, several journals focused onpain management regularly publish findings related to the treatment offibromyalgia. These include publications such as Pain and The Journal of Pain. 14
  14. 14. 15Doctors, Care Providers, and TherapistsFibromyalgia is not a form of arthritis or rheumatic disease in general, however,rheumatologists are commonly consulted during a patient’s quest to achieve adiagnosis. This is because the symptoms of fibromyalgia are similar to those ofrheumatoid arthritis and other chronic pain conditions of the muscular-skeletalsystem. Since the diagnosis of fibromyalgia is one of exclusion, these conditionsmust be ruled out. A rheumatologist is often the most appropriate specialist to doso. In addition to rheumatologists, neurologists are becoming increasingly moreinvolved in the diagnosis and management of fibromyalgia, as our understandingof fibromyalgia as a neurological condition (rather than a rheumatologicalcondition) continues to evolve. General practitioners and internal medicinephysicians can also diagnose and treat fibromyalgia. In addition, psychotherapistsand psychologists are an important part of a fibromyalgia patient’s care plan.Anxiety and Depression commonly occur with fibromyalgia, and these specialistscan help patients address and manage the psychological components of the disease.In addition to medical doctors, physical and occupational therapists can be of greatbenefit to fibromyalgia patients. Physical therapy combines therapeutic exercisewith other modalities, including ultrasound, electrical stimulation and massage, inan effort to increase flexibility and strength, reduce pain, and improve overallmobility. Physical therapists are licensed healthcare providers specifically trainedto administer these therapies. Occupational therapists are also licensed healthcareproviders who receive specialized training related to the physical andpsychological ramifications of illnesses and injuries. They help patients who havedifficulty performing normal activities to regain functioning and independence bymodifying 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 integratedsystem of pharmaceutical therapy, complementary and alternative therapies (suchas acupuncture, chiropractic, and massage therapy), dietary modifications andsupplements, and regular exercise. For those patients who suffer from anxiety anddepression, tailored psychotherapy is also crucial.More detailed information about Doctors and Care Providers is covered indiscussions about building your individual care team in Chapters 4 and 5.Learn more about - Medical Specialists in the treatment of Fibromyalgia. 15
  15. 15. 16Support GroupsParticipation in fibromyalgia support groups, whether online or in person, can alsobe of benefit to patients. Support groups offer an opportunity for fibromyalgiapatients to connect with others who have the disease and gain valuable insight thatcan help overcome challenges and improve their understanding of the lifestylechanges that result from a diagnosis of fibromyalgia. Support groups also offeremotional support, facilitate the exchange of information related to treatmentstrategies, and provide a safe and understanding environment for patients who canoften feel neglected, ostracized, and misunderstood by the medical community.It is important to understand that not all support groups are the same. Some may bediscouraging in tone, with a pervasive focus on the negative aspects offibromyalgia. Others may unevenly distribute member participation, with one ortwo individuals dominating the meetings and the focus of the group. Therefore, itis important for you to choose the support group that is best for you and yourfibromyalgia. Make sure you choose one that reinforces the positive factors in yourlife, 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 foryou. You may prefer a live support group, or you may wish to test the waters withan online support group first. For some people, using a combination of the twomay be most beneficial.A few examples of the numerous online support communities available include: • www.dailystrength.org • www.mdjunction.com/fibromyalgia • www.fibrotalk.com • www.livingwithfibro.orgThe Arthritis Foundation sponsors fibromyalgia support groups in many locationsacross the United States. You can find one of these groups by visiting their onlinesupport 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 areinterested in starting a support group of their own can also visit the NFCPAwebsite to find information and resources to assist in the startup process, as well asto register new support groups with the NFCPA directory. 16
  16. 16. 17Support Groups and AccountabilitySupport groups can provide camaraderie for fibromyalgia patients, however theyshould not be viewed as mere “clubs” where patients convene to commiserateabout how terrible they feel. Effective support groups will consist of highlymotivated individuals who strive to help each other through the decision makingprocesses that are required to progress toward achieving treatment goals. Supportgroups should enable members to help each other with goal-setting, reviewtreatment ideas, obtain feedback and opinions on collective symptoms, andmaintain motivation during bad times. The KEY to a successful support group isthat all members maintain their accountability to each other. Like soldiers in afoxhole, support group members are in this war against fibromyalgia together.They should hold each other accountable, as accountability has demonstratedeffectiveness in helping people achieve a variety of goals, and it can also helppatients progress toward reducing fibromyalgia symptoms as well.The FibroTrackonline self-management systemincludes many toolsfocused on assistingthose withfibromyalgia inbuilding andparticipating in aneffective,meaningful onlinesupport group. Thisincludes asophisticated systemfor matching potential support group members based on their demographic data(age, geographic location, work situation, comorbid conditions and Fibromyalgiasymptoms). FibroTrack also facilitates support group interaction with socialnetworking functions, contact sharing and rating, symptoms and treatment programsharing, private messaging and forums. The FibroTrack system has been designedfrom the ground up to promote and support effective support groups.The information presented in this ebook is merely an overview of the highlights ofthese topics. Please visit our website, www.fibromyalgia-treatment.com for moredetailed information, including blogs, articles, webinars, and much, much more. 17
  17. 17. 18Primary FocusOur primary focus at www.fibromyalgia-treatment.com is all about the “How” todo it! Information abounds on fibromyalgia, and so many treatment options areavailable that the information can be confusing and conflicting if you don’t have atrustworthy source to guide you through it all. Our website can help you pull it alltogether, create a plan based on your specific needs, and then execute that plan towork toward successful management of your fibromyalgia. The tools available toyou on our website will allow you to develop and implement an individualfibromyalgia self-management program, a system, designed BY you (and yourteam) FOR you (and your team), that is specifically targeted at treatingfibromyalgia as is manifests itself in your body and your life.Step 1: Learn. Knowledge is the foundation of effective action. Thefollowing articles on our website can provide the foundation of knowledgerequired to get you started:Current Diagnostic Criteria Diagnostic History of FibromyalgiaThe Diagnostic Process Multiple Diagnosis and FibromyalgiaFibromyalgia Medical Tests Keys for the Newly DiagnosedFibromyalgia Causal Theories Brain Chemical AbnormalitiesFibromyalgia and Genetics Anxiety and FibromyalgiaStress and Fibromyalgia Fibromyalgia Widespread PainDemographics of Fibromyalgia Fibromyalgia MythsThe Great Pretender Life with Fibro- A Womans PerspectiveNothing Easy About It Online Self-ManagementSymptoms Overview Internet Enhanced Treatment EffortsOnline vs Offline Treatment Treatment Focus: Symptoms or Causes? 18
  18. 18. 19Chapter 2: Reviewing FibromyalgiaHistory and IntroductionFirst observed in the nineteenth century, fibromyalgia was originally referred to asfibrositis and fibrositis syndrome. It later was referred to as fibromyositis andmuscular rheumatism. Dr. Philip Hench coined the term “fibromyalgia” to refer tothe disease in 1976. Fibromyalgia is diagnosed by examining the severity of eachpatient’s pain across 19 specific areas on the body, as well as the severity of theirassociated symptoms (such as sleeping difficulty, cognitive dysfunction, andfatigue).Over the years, fibromyalgia has carried a legacy of negative stigma within manyrealms of the medical community. Originally disregarded as a “psychosomatic”illness, many clinicians believed that people with fibromyalgia simply imaginedtheir symptoms. Others believed that fibromyalgia itself was not a singular disease,but rather a combination of symptoms from a group of related conditions. Inaddition, other clinicians have refused to acknowledge the disease altogether,considering it an illegitimate condition and simply treating each specific symptomin the absence of a formal diagnosis. This lack of acceptance by the medicalcommunity has made patients feel ostracized, confused, and frustrated. In addition,this lack of acceptance has also made it difficult for patients to explain theirsymptoms to family and friends. When the American College of Rheumatologyestablished definitive diagnostic criteria for fibromyalgia in 1990, the diseasefinally received the credibility it deserved and gave patients the ability to receive atrue diagnosis. However, despite the existence of these diagnostic criteria, someclinicians still refused to accept that fibromyalgia is a true condition and continuedto insist that its symptoms were the result of another physiologic condition orsimply psychological in nature. Despite the continuing resistance from some in themedical community, fibromyalgia has become more widely accepted as a truemedical diagnosis, thereby enabling patients to get the care they so desperatelyneed and so greatly deserve.For far greater detail relative to defining and understand the many aspects offibromyalgia, please refer to our website – www.fibromyalgia-treatment.com. Thesections in the primary header labeled “What is Fibromyalgia?”, “FibromyalgiaTreatment” and “Fibromyalgia Symptoms” contain comprehensive informationrelated to all aspects of fibromyalgia. You will find individual articles detailing 19
  19. 19. 20specific treatment options, from various pharmaceutical drugs to complementaryand alternative therapies such as acupuncture and yoga. There you can also readdetailed articles on the many symptoms associated with fibromyalgia, such asanxiety, depression, fatigue, and morning stiffness, as well as find summaries ofthe latest research surrounding fibromyalgia.DemographicsAlthough fibromyalgia most often affects Caucasian women, it does notdiscriminate. Anyone, including men, can get the disease. A 2005 Internet-basedsurvey conducted by a team of leading fibromyalgia researchers, in conjunctionwith the National Fibromyalgia Association, found that of the 2,569 respondents,96.8% were female and 91.5% were Caucasian. The average age was 47 and mostwere moderately overweight. Half of all respondents had average householdincomes between $20,000 and $80,000. Click HERE for a full article on thisresearch study into the demographics of fibromyalgia.SymptomsPainThe most common symptom associated with fibromyalgia by far is chronic,widespread pain. The pain is often described as being deep, muscular pain as wellas pain in the connective tissues (“myofascial pain”). Individual descriptions ofpain sensations vary among fibromyalgia patients, with some describing it asaching, throbbing, or sharp/shooting. Others describe it more as a burning ortingling sensation.The pain associated with fibromyalgia causes sufferers to ache all over. Certain"Tender Points” on the body may continue to ache regardless of the therapies apatient tries, and muscles may feel constantly overworked. The pain offibromyalgia can concentrate around the joints of the neck, back, shoulders, andhips, which can make sleeping difficult and restrict mobility. Furthermore,fibromyalgia pain is frequently made worse by changes in weather, temperature,loss of sleep, fatigue, excessive physical activity or lack thereof, and stress/anxiety.Fibromyalgia pain differs from acute pain (that which originates suddenly andresolves over a period of time, such as with a broken bone), in that it is chronic,persistent, and ongoing. 20
  20. 20. 21Living with the pain of fibromyalgia is extremely difficult. It makes relaxationproblematic and interacts severely with an individual’s ability to sleep restfully.Chronic sleep deprivation results in increased pain and aching, morning stiffness,and daytime fatigue. Fibromyalgia pain can also make it difficult for sufferers tomaintain an active lifestyle and lead to social isolation, depression, and anxiety.FatigueIn addition to widespread muscle pain and aching, chronic persistent fatigue isanother hallmark symptom of fibromyalgia. It occurs in as many as 90% ofpatients and can be so severe that it leads to isolation, depression, and anxiety.Many fibromyalgia sufferers describe their fatigue as being similar to that whichoccurs with the flu, truly debilitating and exhausting. Fatigue may wax and waneas symptoms worsen or improve, however it continues to be problematic and madeworse by the sleep disturbances most fibromyalgia patients also experience.Some researchers and physicians have observed strong similarities between thefatigue seen in fibromyalgia patients and the condition called chronic fatiguesyndrome (CFS). CFS is a disorder marked by persistent, extreme fatigue that doesnot improve, even after a person rests. In addition, a number of other symptoms arecommonly seen in CFS, including muscle pain, impaired memory, headache, sleepproblems, and painful lymph nodes. It also occurs most often in women in theirforties and fifties. Due to the strikingly similar symptoms and the high rate ofoccurrence in women, CFS and fibromyalgia are often miss-diagnosed as eachother or diagnosed together in the same patient.Sleep ImpairmentImpaired sleep is another defining symptom of fibromyalgia, with as many as 85%- 90% of patients reporting insomnia and non-restorative sleep. Patients feelgroggy and un-refreshed upon awakening. Fibromyalgia sufferers frequently reportdifficulty initiating or maintaining sleep, sleep that is light or of poor quality, andexcessive daytime sleepiness. Some patients experience sudden bursts of brainactivity – known as alpha EEG anomalies – which mimic being awake when infact the brain should be in a state of deep sleep. These bursts of activity preventindividuals from having deep, restful sleep. Sleep apnea is also common, and itresults when an individual stops breathing while asleep. These pauses in breathingdisrupt sleep and cause a shift from deep sleep into lighter sleep phases, all ofwhich culminate in poor sleep quality and a feeling of fatigue and tiredness thenext day. 21
  21. 21. 22Morning StiffnessBetween 70% and 90% of individuals with fibromyalgia report waking up withincreased pain, tenderness, muscle aches, and stiffness in the morning. They mayfeel as if it takes several hours for their bodies to loosen up or “warm up” beforebecoming fully mobile. This obviously can interfere with mobility and limitactivity, making even the most simple tasks – such as getting out of bed,showering, and driving into work – incredibly difficult for fibromyalgia patients.Symptoms of morning stiffness include muscle tightness upon awakening, stiffnessparticularly in the hands, fingers, feet and toes, limited range of motion in thejoints (for example, being unable to fully extend your leg), and generalizedstiffness in the back, neck and head.Tender Points Historically, one of the required criteria to receive a diagnosis of fibromyalgia was the presence of at least 11 of 18 specific tender points. These 18 anatomic sites cluster around the neck, shoulders, chest, hips, knees, and elbows. In order to evaluate these tender points, a physician will apply light pressure to the surface of the muscles throughout the body. While most individuals will feel only light pressure, patients with fibromyalgia mayfeel increased pain and tenderness that is disproportionate to the amount ofpressure that is applied.The presence of myofascial “trigger points” can sometimes complicate thediagnosis of fibromyalgia. The term fascia refers to the dense fibrous connective 22
  22. 22. 23tissue surrounding muscles. When fascia is injured, it “knots up” and creates whatare known as trigger points. When touched, these trigger points are very painfuland the pain radiates throughout the muscle and surrounding areas. The chronicmuscle pain that results from these trigger points is known as myofascial painsyndrome. The pain is persistent, worsens over time, and can result in stiffness anddifficulty sleeping. Much like fibromyalgia, myofascial pain syndrome can have asignificant negative impact on an individual’s ability to live an active lifestyle. Asa result of their overlapping features, myofascial pain syndrome may bemisdiagnosed as fibromyalgia and vice versa. What is important to understand,however, is that trigger points for myofascial pain syndrome are not the same astender points in fibromyalgia. Trigger points are the underlying cause ofmyofascial pain syndrome, whereas tender points are a defining symptom and attimes a diagnostic requirement for fibromyalgia. Tender points do not present anunderlying hard knot of muscle tissue as is typically present in a myofascial triggerpoint. Tender points have extreme tenderness and disproportionate pain whenpressure is applied, but no hard muscular knots are present.HeadachesThe majority of people with fibromyalgia experience headaches. Migraineheadaches are common, as are tension headaches. Migraines cause severethrobbing or pulsing in one area of the head, and may also be accompanied bynausea, vomiting, and sensitivity to sound and/or light. Migraines may last induration for hours or even days. Tension headaches are typically widespread andmoderately painful, and they are the most common type of headache. They arecommonly experienced as dull, aching pain, or a sensation of tightness or pressurealong the forehead, sides, or back of the head. Tension headaches can range induration from as short as 30 minutes to as long as a week. For individuals withfibromyalgia, headaches often arise for no apparent reason. They often do notrespond well to traditional headache medicines.Cognitive Impairment / “Fibro Fog”Individuals who suffer from fibromyalgia frequently report substantial cognitiveimpairment, a symptom so prevalent is has been coined “Fibro Fog.” Fibro fog ischaracterized by memory loss (both short- and long-term), difficulty maintainingfocus and paying attention, and trouble locating the right words to speak whiletalking. In addition to the cognitive impairments, fibromyalgia patients may alsoexperience dizziness, feelings of lightheadedness, and disorientation. These 23
  23. 23. 24cognitive difficulties are all very troubling for fibromyalgia patients and can fuelfeelings of anxiety and depression.Depression & AnxietyWhile many people will experience depression at some point during their lives,fibromyalgia patients often must deal with a heavy burden of the illness. Driven inpart by the constant widespread pain and overwhelming fatigue associated withfibromyalgia, depression may also be exaggerated by constant headaches, sleepdisturbances, and muscle pain. Depression in fibromyalgia can be very severe andis estimated to be present in up to 30% of patients at the time of diagnosis. Thosepatients who suffer from both depression and fibromyalgia have decreased qualityof life and often modify their behaviors as a result, including self-imposed socialisolation and decreased activity - actions that can feed the syndrome.Anxiety often goes hand-in-hand with depression. Anxiety is a natural response ofthe human body to stress, both good and bad. When anxiety occurs under normalcircumstances it can be beneficial to the body; however, when anxiety becomesexcessive and sustained, it can become a debilitating disorder that preventssufferers from carrying out normal daily activities. In addition to depression, manyfibromyalgia patients also suffer from generalized anxiety disorder – a conditionmarked by sustained elevated levels of anxiety, excessive worrying, and tension,even when no stimulus is there to trigger such symptoms. Certain physicalsymptoms also accompany generalized anxiety, including fatigue, headache,muscle aches, difficulty swallowing, and irritability. Those who suffer fromanxiety often suffer from panic attacks and unexplained feelings of inadequacy.Irritable Bowel SyndromeIrritable bowel syndrome (IBS) is characterized by severe abdominal cramping,changes in bowel movements, along with a host of other symptoms. The cause ofmost cases of IBS is not known, however some cases may result from an intestinalinfection or be triggered by a nerve problem. Like fibromyalgia, research hasshown that IBS may start following a stressful life event or result from the body’simpaired ability to process pain. IBS is common and affects one out of six peoplein the United States, with women affected more often than men at a rate of two toone. The primary symptoms of IBS include abdominal pain, a sense of fullness,gas, and bloating, and can range in intensity from mild to severe. 24
  24. 24. 25When compared to the rate of IBS in the general population (10%-15%),fibromyalgia patients experience an increased incidence of the condition. Someresearchers have estimated that as many as 70% of fibromyalgia patients have IBS.Up to two-thirds of all IBS patients may also have fibromyalgia. Despite theircommon co-occurrence, it is unknown if the two conditions are causally related orif they merely occur together as a coincidence. Those who have both conditionsusually have more severe symptoms and a poorer overall quality of life than thosewho suffer from either fibromyalgia or IBS alone.Interstitial CystitisInterstitial cystitis (IC) is a condition that is marked by frequent pain or discomfortin the bladder and pelvis. Symptoms vary from person to person and may increasein intensity as the bladder fills with urine, and after it is emptied. In addition topain, people with IC may also feel the frequent urge to urinate. For women, theirsymptoms may worsen during menstrual periods or vaginal intercourse. The causeof IC is not known. But since many women who suffer from IC also have otherconditions such as fibromyalgia or IBS, some researchers think that IC is merelythe bladder’s response to a more generalized condition elsewhere in the body. Thefrequent co-occurrence of fibromyalgia and IC in many patients may be due tomalfunctioning nerve signals. The fact that both conditions are much morecommon in women than in men also suggests that certain genetic and/or hormonalfactors may contribute to their development.Secondary symptoms of FibromyalgiaA number of secondary symptoms are associated with fibromyalgia. They varyfrom patient to patient so much that it is nearly impossible to provide acomprehensive list. An abbreviated list of some of the more common symptoms isbelow: • Temporomandibular Joint Disorder (TMJ): TMJ is characterized by pain and tenderness in the jaw joint, on each side of the head just below the ears. TMJ can also manifest itself as dull, aching pain in the ear, difficulty chewing, facial pain, difficulty opening and closing the mouth, or as a clicking sensation while chewing. TMJ affects nearly 35 million people in the Unites States, most of them are women between the ages of 30 and 50. • Restless Leg Syndrome (RLS): RLS is characterized by the uncontrollable urge to move the legs in order to stop unpleasant sensations. The sensations 25
  25. 25. 26 generally occur between the knee and ankle, although the upper leg, feet, or arms may also be affected. Individuals who suffer from RLS generally describe the sensations as “aching,” “creeping,” “crawling,” or “tingling” and usually experience their symptoms at night while lying down.• Dry mouth and eyes: Many individuals with fibromyalgia report dry eyes and dry mouth. Sometimes these symptoms are directly related to the condition itself, but often they are experienced as side effects to medications used by many fibromyalgia sufferers, including antihistamines, antidepressants, diuretics, and opiate pain medication.• Skin rashes and irritations: Many fibromyalgia patients experience some sort of skin-related symptoms, including dry and itchy skin and rashes. These symptoms can make sleeping even more difficult than it already is for fibromyalgia patients, as well as increase pain.• Abnormally difficult and increased PMS and menstrual period pain: Women who suffer from fibromyalgia are more likely to have greater menstrual problems than those who do not have fibromyalgia. Increased moodiness, irritability, fatigue, and cramping are all symptoms of PMS and occur at higher rates and with great intensity in women with fibromyalgia. Due to their increased sensitivity to pain, women with fibromyalgia also experience greater pain with their menstrual periods, including pain in the lower abdomen and back.• Vulvodynia: Many women with fibromyalgia also experience vulvodynia, which is a condition characterized by pain in the genital area. This type of pain is generally described as burning, soreness, stinging, rawness, or throbbing. It can also be marked by itching or painful intercourse. The pain can be constant, or it can come and go, and it can last for months or years.• Endometriosis: Women with endometriosis – a condition in which the tissue that lines the uterus grows in other parts of the abdominal cavity – are more likely to suffer from fibromyalgia, chronic fatigue syndrome, and diseases of the immune system. Endometriosis causes severe pelvic pain and may cause infertility.• Hypoglycemia: Many individuals with fibromyalgia also experience hypoglycemia, or low blood sugar. The symptoms associated with low blood sugar include intense cravings for sweet foods, tremors/trembling, sweating, panic attacks, lightheadedness, confusion, headaches, and heart palpitations. 26
  26. 26. 27Fibromyalgia TriggersThe exact cause of fibromyalgia has yet to be identified, however a number ofpotential causes have been suggested. Genetic factors may play a role in thedevelopment of fibromyalgia, as the disease has been observed to cluster infamilies. In addition, many individuals with fibromyalgia report having been underextreme stress prior to the onset of symptoms. Furthermore, many people withfibromyalgia are often overweight or obese, an observation which also mayindicate a causal association between body weight and/or diet and fibromyalgia. Inaddition to these potential causes, a number of events have been suggested aspotential “triggers” that result in the development of fibromyalgia amongpredisposed individuals. No definitive evidence exists, however, which links themto the onset of the disease. These potential “triggers” include: accidents that resultin physical trauma, physical and/or sexual abuse, illness, high stress levels,childbirth, and others.DiagnosisFibromyalgia is a condition that is very difficult to diagnose. In reality, itsdiagnosis is often achieved through the process of elimination. Doctors must firstrule out a number of conditions that closely mimic the disease, including chronicfatigue syndrome, myofascial pain syndrome, and others. This often results inconfusion and frustration for patients, as they shuffle from one specialist to anotherand undergo multiple tests and diagnostic procedures.There are no laboratory tests that can be used, therefore the diagnosis offibromyalgia can only be achieved by physical examination, patient history, andruling out the presence of other similar conditions. Rheumatic diseases, such asrheumatoid arthritis and lupus can easily be ruled out by the presence of definitiveclinical features characteristic to each condition. For example, patients withrheumatoid arthritis experience joint swelling, joint deformities, and specificabnormalities in particular blood tests. Patients with lupus present with rashes,generalized and widespread inflammation, and abnormalities in specific bloodtests. Ruling out the presence of certain neurological conditions can prove to bemore difficult, as many fibromyalgia patients may report feeling numbness,tingling, and burning sensations. However, ultimately the exclusion of neurologicalconditions is easily done, as most fibromyalgia patients do not show any abnormalfindings when evaluated using standard neurological testing. The greatest difficultyin the diagnosis of fibromyalgia occurs when attempting to distinguish it from 27
  27. 27. 28other functional pain disorders, such as TMJ, irritable bowel syndrome, andchronic fatigue syndrome. CFS and fibromyalgia have been estimated to co-occurin as many as 80% of patients, whereas approximately 70% of fibromyalgiapatients also have irritable bowel syndrome. Approximately 40% - 70% offibromyalgia patients also have TMJ. As such, there is a high frequency of mis-diagnosis, as the symptoms associated with these disorders are very subjective andphysician interpretation may vary, leading some physicians to diagnose one diseasewhen another might view the patient’s symptoms differently.Moldofsky and Smythe proposed the first diagnostic criteria for fibromyalgia in1977. These criteria included 1) the presence of at least 12 of 14 tender points and2) non-refreshing sleep. In 1981, Yunus et al. proposed a revised, more formal setof criteria to diagnose fibromyalgia, which required aching, pain, and stiffness fora minimum of three months as well as the presence of at least five tender points. Inaddition, Yunus et al. required patients to have at least three of the followingsymptoms: decreased physical activity in response to symptoms, weather-relatedsymptom aggravation, stress/anxiety-related symptom aggravation, sleepdisturbances, fatigue/tiredness, anxiety, headaches, irritable bowel syndrome,swelling, and/or numbness. Finally, in 1990, the American College ofRheumatology (ACR) established official diagnostic criteria for fibromyalgia.These included the presence of chronic widespread pain and a minimum of 11 of18 tender points. In addition, the attention and endorsement by the ACR finallygave much-needed recognition to fibromyalgia as an official clinical diagnosis.The ACR diagnostic criteria for fibromyalgia were recently updated in 2010, in aneffort to standardize the symptom-based diagnosis of the disease and ensure thatphysicians are using the same process to make a diagnosis. With this update, thetender point test was replaced with a widespread pain index and a measurement ofsymptom severity, known as the symptoms severity scale. The pain index isdetermined by counting the number of areas on the body where the patient felt painwithin the previous week, and the checklist includes 19 specific areas. Thesymptom severity score is determined by patients’ rating the severity of threecommon symptoms – fatigue, waking unrefreshed, and cognitive symptoms – on ascale of zero to three (with three being the most severe). Additional points can beadded for the presence of other symptoms, with a final score ranging from zero to12. Under the new criteria, in order to receive a diagnosis of fibromyalgia, a patientwould need to have seven or more pain areas and a symptom severity score of fiveor more; or, three to six pain areas and a symptom severity score of nine or greater. 28
  28. 28. 29In addition to the 2010 ACR diagnostic criteria, the Fibromyalgia ImpactQuestionnaire (FIQ) has often been used to help doctors evaluate fibromyalgiapatients. Developed in the late 1980s, the FIQ was first published in 1991 and hassince been translated into 14 languages. The questionnaire originally used a visualanalog scale that required patients to place a slash on a 100 millimeter-long line toindicate the magnitude of their symptoms. Unfortunately, the questionnaire wasdifficult to score. It was worded in a way that made unfair assumptions aboutpatients, and it failed to include important assessments of cognition, balance, andenvironmental sensitivity. In 2010, the FIQ was revised to correct thesedeficiencies, creating the “FIQR.” The FIQR consists of 21 questions, all of whichare based on an 11-point numeric rating scale from 0 to 10, with 10 being theworst. The FIQR is organized to evaluate functioning, overall impact offibromyalgia, and symptoms.Causal TheoriesOne of the main reasons that fibromyalgia is so difficult to treat effectively is thefact that despite years of research, the definitive cause (or causes) of fibromyalgiaremain unknown. Advances in research and understanding of how the human bodytransmits and processes pain signals has led to the prevailing theory thatindividuals with fibromyalgia are unable to process pain signals normally.Research suggests that this may be the result of various chemical abnormalities inthe brain. These chemicals, known as neurotransmitters, carry pain signals fromone nerve cell to the next. When the body has excess neurotransmitters, it is easierfor pain signals to reach the brain, which then relays the ‘painful sensation’ back tothe body. Recent research studies have shown that fibromyalgia patients havedisproportionate levels of pain-regulating neurotransmitters. This has ledresearchers to hypothesize that perhaps the origin of fibromyalgia for someindividuals may be related to these chemical abnormalities in the brain.In addition, relatives of people with fibromyalgia are eight times more likely todevelop the syndrome than those who have no family history of it, which issuggestive of a possible genetic cause for fibromyalgia. Based on observationalstudies in fibromyalgia and their first-degree relatives, researchers have turnedtheir sights to the human genome for clues as to what gene, or genes, may beinvolved in the development of fibromyalgia. In particular, genes that regulate thebrain’s ability to transmit pain signals via neurotransmitters are of particularinterest to researchers. 29
  29. 29. 30Chapter 3: Fibromyalgia: The Elusive FiendFibromyalgia is relentless. It can wrack your body with pain and drain your energyleaving you exhausted – physically and mentally. The ever-changing way in whichit manifests itself can confuse not only you but your doctors as well, leading tofrustration and a sense of helplessness. Fibromyalgia takes a toll on all involved –you, your friends, and your family. It can destroy relationships, careers, and bankaccounts. Fibromyalgia is indeed a fiend, and an elusive one at that, as effectivetreatment can be very difficult in light of the fact that there is no known definitivecause to target.Fibromyalgia presents a serious problem, and this chapter is devoted to discussingthe extreme difficulties posed by fibromyalgia relative to its diagnosis, reputationwithin the medical community, and struggles with regard to the most effectivetreatment approach. This chapter will also touch on Americans’ perceptions ofhealth care and how fibromyalgia fails to conform with what we have come toexpect in terms of treatment from our medical system.General ConfusionFibromyalgia is difficult to both define and diagnose, given the wide spectrum ofsymptoms and co-morbid conditions that accompany it. In addition, fibromyalgiais often misdiagnosed with other diseases that add to the confusion. For manyyears, the medical community considered fibromyalgia to be a “whiners disease,”discounting patients’ symptoms and suggesting their pain was all in the head. (thatironically may prove to be true - research has demonstrated differences in thechemical processes in the brains of fibromyalgia patients relative to how painsignals are amplified and processed) Unfortunately, despite the formal recognitionof fibromyalgia as a diagnosable condition by the American College ofRheumatology and the International Classification of Diseases, many providerscontinue to doubt its legitimacy as a true pathological condition.Adding to the confusion and confounding the medical community’s understandingof fibromyalgia is the lack of easily defined and effective treatment strategies.Treatment of fibromyalgia is highly individualized; there is no “Magic Pill” thatwill work for everyone. What works for one patient may be totally ineffective foranother, and may even make that patient’s symptoms worse. Unfortunately, thosewho are helped to a great extent by a particular therapy may celebrate the relief of 30
  30. 30. 31their symptoms by telling others about their “cure,” unintentionally perpetuatingconfusion about effective treatments.The general lack of understanding surrounding fibromyalgia creates a negativestigma about the disease and perpetuates negative attitudes toward those whosuffer from it. People tend to doubt or even fear things they do not understand, andin the case of fibromyalgia, people’s attitudes toward those with the disease can bedoubtful, harsh, and even condescending. Given that anxiety and depression arefrequent symptoms associated with fibromyalgia, this kind of hard feedback fromfriends, co-workers, family members, and even health care providers can becrushing and can trigger new negative feedback loops. 31
  31. 31. 32A Tough Nut to CrackThe reality of fibromyalgia is that there is no cure. Unfortunately, this does notstop individuals from claiming to have found one! In addition, misdiagnosis isrampant, both for those with and without fibromyalgia. Many individuals with truefibromyalgia are often diagnosed as having a different disorder, while others whoare diagnosed with fibromyalgia may in fact suffer from something quite different.Additionally, there is a very high incidence of comorbid (having additionalclinical conditions at the same time as the primary) conditions with fibromyalgia,adding further complexity to an already complicated situation.In addition, there is no recognized and accepted single “best treatment” – a realitydriven by the fact that even the most effective treatments have a negative impacton a significant percentage of those who try them. The following point cannot beemphasized enough: What may work for one patient may not work for another,and may in fact make the other patient feel worse! This reality makes the ElusiveFiend a moving target, and the weapons for fighting him inconsistent from onewarrior to another.Symptom–Cause Interplay and ConfusionMany causal symptoms are associated with fibromyalgia. In other words, many ofthe symptoms of fibromyalgia appear to function in a causal role, i.e., they canboth trigger fibromyalgia or appear after the onset of fibromyalgia. For example,depression can causeanxiety. Fatigue can causedepression. Sleep problemscan cause fatigue. Deep,persistent pain can causesleep problems. All of thesethings can be both causedby stress and can causestress to occur. Thesesymptoms also frequentlycome and go, or “wax andwane,” in seemingly randomfashion. As the course offibromyalgia unfolds over time, it often becomes extremely difficult for patients topinpoint what came first in different symptom / cause loops. In effect, a “chickenand the egg” scenario develops which can make determining effective approaches 32
  32. 32. 33to treatment difficult. This can lead to increased confusion and further escalationsin the overall negative impact on the patient’s life.All of these symptom-cause relationships are extremely complicated and difficultto understand. They can be impacted by a wide variety of factors, including stress,diet, vitamin deficiencies, exercise, obesity, menstrual cycle, weather,pharmaceutical side effects, chemical sensitivities, and environmental factors.Determining the relationship between primary and secondary symptoms – keycausal factors and negatively-impactful environmental and life factors – can oftenprove to be more complicated than calculating rocket trajectory for a NASA moonmission. At least with NASA, the laws of physics are the same for everyone! Infibromyalgia, there are no clinical standards; everyone’s fibromyalgia is unique.The manner in which these factors interplay will be different for you than it is forothers.Learn more about these frequent causal symptoms -Anxiety Stress Depression Fatigue SleepNegative Feedback LoopsMany symptomsassociated withfibromyalgia are notisolated. They interactwith each other, feedingoff of each other in anegative manner. Thistype of relationship isknown as a negativefeedback loop. Negativefeedback can best bedescribed as a cycle inwhich an event leads toanother event, whichleads to another event,which leads back to theoriginal event and so on.The cycle continues until something happens to make it stop. For example, an 33
  33. 33. 34individual with fibromyalgia may suffer from sleep impairment. This inability tosleep adequately results in excessive daytime fatigue. This excessive fatigueaggravates the persistent pain that the individual experiences from theirfibromyalgia. Due to the worsening pain, the individual may not be able to sleepwell. This cycle is an example of a negative feedback loop, and will not cease untilsomething occurs to disrupt it. That “something” might be a new treatment regimethat incorporates massage therapy, which addresses both the fatigue and relievesthe excess pain, thereby improving sleep quality.Causal symptoms interact both with other symptoms and other causal factors. As isillustrated in the above example, this interaction creates, fosters, and strengthensnegative feedback loops – a scenario in which a vicious circle is created.Furthermore, the interaction of negative feedback loops and causal factors can leadto overlapping loops, loops within loops, or loops with shared symptoms thatimpact other symptoms. The ultimate result of these interactions is a downwardspiral that may cause fibromyalgia syndrome to worsen over time. Fibromyalgia isNOT by definition a degenerative disease, however the causal impact ofsymptoms and triggers can, if left unrecognized and untreated, lead to adebilitating downward spiral and a decline in the quality of life for thefibromyalgia patient.The relationship between symptoms and causal factors is multi-layered,inconsistent in frequency and intensity, and difficult to define. All of this can leadfibromyalgia sufferers to ask: why is the Fiend so elusive? One reason lies in thefact that multiple negative feedback loops can function simultaneously, often withshared causal factors. In addition, the form and function of symptomatic negativefeedback loops will vary between patients, just as symptoms will. This makesgeneralizations and precise definitions relative to the overall syndrome offibromyalgia next to impossible. In addition, this increases patients’ confusion anddiscouragement, both of which can make decisions related to treatment even moredifficult than they already are. Again, the Elusive Fiend at work.Another fact that makes fibromyalgia so hard to pin down is that as negativefeedback loops progress, they can trigger or amplify secondary symptoms, whichin turn may lead to the formation of additional negative feedback loops. Certainenvironmental factors can also serve the same function – though at times have theopposite effect. Take Seasonal Affective Disorder (SAD) for example. SeasonalAffective Disorder can lead to increased depression that feeds into othersymptoms, such as pain and poor sleep; however, as the seasons change and spring 34
  34. 34. 35brings with it improved weather and sunshine, it can lessen the impact of SAD andthus foster improvements in pain and sleep quality.It is important to note that negative feedback loops are not by definition adiagnostic criteria associated with Fibromyalgia, but rather are a commonlyobserved phenomenon. Significant research relative to causal factors related tolinked conditions does provide some research evidence to support the concept ofnegative feedback loops and their function as an amplifier in Fibromyalgia butmore specific research is needed.Medical SystemThe U.S. medical system is highly fragmented and therefore simply not designedto effectively diagnose and treat patients who suffer from a syndrome such asfibromyalgia. As the diagnosis of fibromyalgia can only be achieved by excludingthe presence of other conditions, different physicians may take differentapproaches to reach their diagnosis. Furthermore, if a particular practitioner is inthe school of those who doubt the legitimacy of fibromyalgia as a true diagnosis,they may bypass a diagnosis of fibromyalgia altogether in favor of treating eachindividual symptom.A large percentage of doctors lack an in-depth understanding of fibromyalgia andthe most effective options for treating it. This frequently leads to a “generic”approach, i.e., “throwing pills at it.” This approach is not a cure, however, andfrequently it can serve to make things worse for the patient. Pharmaceuticaloptions are often effective; however, even in the best case, symptoms are onlypartially alleviated. Improvement is maximized if the pharmaceutical drugs can besupplemented with other treatment options.Another aspect of the U.S. medical system that often precludes individuals fromseeking certain treatments is health insurance. Many insurance providers do notgrant approval for certain treatments, such as chiropractic or massage therapy, andeven certain medications may not be covered by some insurance plans. Therefore,if a particular treatment approach is not “approved” by a patient’s insurancecompany it may never be discussed as an option for the patient. This can have hugeramifications for patients who may actually receive benefit from those treatments.A massive problem is created when insurance restrictions and required approvalsdrive treatment options, rather than the fibromyalgia patient and their care team. 35
  35. 35. 36Admittedly, insurance companies face an uphill battle when trying to structure asystem for the treatment of fibromyalgia in a manner that is both effective for thepatient and viable within their business model. Insurers must deal with the realityof trying to manage the treatment and costs associated with millions of patients, allof whom require individualized approaches and therapies. There is no question thatinsurers want to be effective when approving treatments for fibromyalgia; they do.Effective treatment is not only prudent from a patient’s standpoint, but also from acost standpoint. Unfortunately, the most effective proven treatment approaches forfibromyalgia are multi-disciplinary in nature, and health insurance companies aresimply not structured to manage this kind of approach. Although some insurersare expanding their availability of covered services to included complementary andalternative therapies, such as acupuncture, chiropractic, and nutritional therapy,these offerings are not universal and are by no means standard across the broadrange of insurers. Furthermore, recent economic downturns and other personalfinancial factors have resulted in many individuals having to scale back on thescope of their insurance plans. Some people forego health insurance altogether.Without health insurance, affording good-quality, comprehensive health care in theU.S. is almost impossible.Insurance issues aside, doctors are in an untenable position. Due to the fact that amulti-disciplinary approach to the treatment of fibromyalgia is typically the mostsuitable, it is nearly impossible for any single health care provider to be effective inguiding and managing a patient’s overall treatment on a long-term basis. To expecta single doctor to be capable of this is to simply ignore the realities of bothfibromyalgia and the medical system. No doctor can be an expert in generalmedicine, chiropractic, massage therapy, dietary nutrition, alternative medicine,behavioral focused medicine and all of the many other medical specialties that canplay into treating fibromyalgia. It is not physically possible for one individual to bethe best in all of the different medical specialties that someone fightingFibromyalgia will want on their team. This scenario drives the reality of why aself-management approach provides the most effective treatment. The patient musttake responsibility for directing and coordinating the efforts of all of their careproviders. Self-Management is a team approach.As can be imagined, when coupled with the variable symptoms and theoverwhelmingly individualistic nature of the disease itself, fibromyalgia is anightmare for the medical system. The lack of a one-size-fits-all approach totreatment, the need for treatments that are not often covered by routine healthinsurance, and the relentless nature of the disease itself makes fibromyalgiaextremely difficult to both endure and to manage. 36
  36. 36. 37"Magic Pill Syndrome"Consumers and patients have been led to be believe – and have come to expect –that there is a “Magic Pill” to cure almost every ailment out there. This culturalphenomenon isunfortunate, as it givesmany individuals a falsesense of security and aninaccurate understandingof how medicine trulyworks. The unfortunatereality is that medicalscience and doctors areneither as advanced nor ascapable as mostAmericans believe them tobe. This is not a failure onthe part of the medicalcommunity; it is a failure of expectations to remain aligned with reality. Thedoctors on TV can cure anything (and have good hair while doing it) - so surelymy doctor should be able to make me feel better.This is particularly the case for fibromyalgia. There is no known cure forfibromyalgia – only treatments geared toward addressing its symptoms, and manyof those treatments are only partially effective, or effective in only a percentage ofpatients. Magic Pill Syndrome leads patients to believe that one particularmedication or therapy can result in a “cure” for their disease when no such cureexists. For fibromyalgia patients, this belief drives unrealistic expectations, feedsdepression and anxiety, and contributes to the frequent confusion and lack ofunderstanding among family members. These false expectations are a big issue anda major hindrance to people with fibromyalgia, and make a very complicateddisease even more complicated to manage effectively.It is vitally important for all fibromyalgia patients to accept the reality of theircondition in order to move forward with effective treatment. There is no “magicpill.”The U.S. Food and Drug Administration (FDA) recently approved the drug Lyricafor the treatment of fibromyalgia. For many Americans who do cursory research 37
  37. 37. 38and depend solely upon their doctor’s guidance with regard to treatment, they mayinterpret this FDA approval as meaning that the U.S. government has certifiedLyrica as a cure and thus it is the “magic pill” they are seeking. Unfortunately, thisis not the case. Lyrica is not a cure for fibromyalgia, and for those patients inwhom it is most effective, it only decreases fibromyalgia symptoms by about 40%.In other words, Lyrica may help, but it is certainly not a “magic pill.”Effective Treatment - Overwhelming OptionsThere are many suspected causes of fibromyalgia, and they vary from patient topatient. These variations make the identification and evaluation of overlappingconditions extremely difficult given the time constraints modern realities place onthe medical profession.Among the theories surrounding effective treatment strategies for fibromyalgia,perhaps the most consistent among experts is that a multifaceted approach is mostlikely to yield sustainable long-term results. Most experts agree – and researchtends to support – that the most effective treatment for fibromyalgia patients willinvolve a combination of pharmaceutical therapy, dietary supplements, alternativetherapies, dietary modification, and regular exercise. It is important to note,however, that what works for one patient may not necessarily work for another.Furthermore, each aspect of treatment has a large number of options and no singlecare provider is going to be an expert in all of them. Finally, many treatmentoptions present interaction challenges. Certain drugs may interact with other drugsor dietary supplements. Dietary factors may have an impact on how the bodymetabolizes and uses the drugs themselves. In addition, personal factors, such asbody weight and mental status may also play a role in the effectiveness of thevarious treatments. Determining the combination of treatments that is mosteffective for a particular patient involves patience, dedication, and a process oftrial-and-error. 38
  38. 38. 39 As noted in the diagram to the left - multiple negative feedback loops may function simultaneously feeding an ongoing decline in overall health that drives a worsening of fibromyalgia symptoms. Patients should utilize diagrams like this to chart and document how fibromyalgia is playing out in their own bodies. Nothing fancy is required - crude diagrams hand-drawn can serve the samepurpose as fancy computer generated graphics. The important thing is to build acomprehensive base of understanding relative to exactly how fibromyalgia is beingpresented in your individual case. 39
  39. 39. 40Chapter 4: Self-Management: Basis for Effective TreatmentYou are unique. So is your fibromyalgia. In fact, no one else will ever be capableof understanding how your fibromyalgia manifests itself in your body and life aswell as you can. You are the only one who is able to effectively evaluate andmanage the treatment of your fibromyalgia, and your motivation to get better willnever be matched by anyone else. Remember: you are your own best advocate,your own hero, and your own boss!There are two choices when it comes to managing fibromyalgia:1. Learn to effectively manage it yourselfOR2. Option #2 is see option #1. No other worthwhile option exists.Do not waste years thinking you will find a magic cure. Do not expect that yourdoctors will have all the answers for you. In fact, don’t expect anyone to have allthe answers, including you, because for fibromyalgia there are few certainties. Butthat is ok; many times even an intelligent guess can have great outcomes for you.Taking ResponsibilityYou must take responsibility for managing your own fibromyalgia. Takingresponsibility is not just a decision; it is an action. It means taking control. The firststep in doing so is to move from a path of dependence, confusion, hopelessness,and fear to a path of knowledge, hope, challenge, and most importantly, action.The action part is key. Even if you have the greatest idea or concept in history, it isworth nothing unless you act upon it. Taking responsibility means accepting thereality that action is required and that you are the one who must do it.This can be a breaking point for many people, as some may not feel capable oftaking action. They may doubt their ability to take responsibility and trust theirinstincts. Nonsense. You can do it! No one is better equipped or prepared thanYOU. No one has better motivation, and no one will ever be in a position to betterobserve, evaluate, and manage your fibromyalgia than you. 40
  40. 40. 41Education - Laying the Foundation for SuccessEducation is the cornerstone of successful management for fibromyalgia. The moreyou know, the better armed you are to tackle the many challenges you will face.Knowledge is your primary weapon in this fight. It is important to understand howfibromyalgia functions, its associated conditions, the treatment options available toyou, and the types of doctors you need to engage in your care.The unfortunate reality is that a large number of comorbid conditions andsymptoms are an integral part of fibromyalgia. It is important to focus yourlearning efforts on those symptoms that are specific to you, in addition to learningall you can about the general nature of fibromyalgia. Learning all you can aboutthese co-occurring conditions is key to developing an individual and effectivetreatment strategy.As mentioned in chapter one of this ebook, there are a number of journals,magazines, newsletters and national organizations that can provide you with awealth of trusted information regarding fibromyalgia and facilitate yourunderstanding of the disease and how it affects you as an individual. Magazinessuch as Fibromyalgia and Chronic Pain LIFE provide regular, up to dateinformation on the newest management strategies, research, and tips for living withfibromyalgia. The National Fibromyalgia and Chronic Pain Association, as well asthe American Pain Foundation and American Academy of Pain Management, allregularly publish newsletters related to fibromyalgia and/or chronic pain.Furthermore, these organizations have websites that also provide comprehensiveinformation related to fibromyalgia and pain management.Doctors and other care providers, such as therapists, nurses, pharmacists, andmedical specialists, should also be consulted on your journey to understand all youcan about fibromyalgia. Make it a point to ask questions and engage in dialogue.Seek out the input of these individuals and make the time to cultivate arelationship. ASK for their ongoing help and assistance, and for them to functionas a sounding board when needed.The Internet, while an indispensable research tool and source of information, isnotoriously inaccurate. Research has corroborated the wide availability of lowquality information found on the Internet. That said, keep the reality offibromyalgia in mind when sourcing information from the Internet: there is no oneproven best treatment method! Fibromyalgia manifests itself differently in eachpatient. If you read a testimony online that treatment X worked for one person, be 41

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