Chapter 4: Self-Management: Basis for Effective Treatment
You are unique. So is your fibromyalgia. In fact, no one else will ever be capable of understanding how your fibromyalgia manifests itself in your body and life as well as you can. You are the only one who is able to effectively evaluate and manage the treatment of your fibromyalgia, and your motivation to get better will never 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 yourself
OR
2. 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 your doctors will have all the answers for you. In fact, don’t expect anyone to have all the answers, including you, because for fibromyalgia there are few certainties. But that is ok; many times even an intelligent guess can have great outcomes for you.
You must take responsibility for managing your own fibromyalgia. Taking responsibility is not just a decision; it is an action. It means taking control. The first step 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 is worth nothing unless you act upon it. Taking responsibility means accepting the reality 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 of taking action. They may doubt their ability to take responsibility and trust their instincts. Nonsense. You can do it! No one is better equipped or prepared than YOU. No one has better motivation, and no one will ever be in a position to better observe, evaluate, and manage your fibromyalgia than you.
Education - Laying the Foundation for Success
Education is the cornerstone of successful management for fibromyalgia. The more you 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 how fibromyalgia functions, its associated conditions, the treatment options available to you, and the types of doctors you need to engage in your care.
The unfortunate reality is that a large number of comorbid conditions and symptoms are an integral part of fibromyalgia. It is important to focus your learning efforts on those symptoms that are specific to you, in addition to learning all you can about the general nature of fibromyalgia. Learning all you can about these co-occurring conditions is key to developing an individual and effective treatment 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 a wealth of trusted information regarding fibromyalgia and facilitate your understanding of the disease and how it affects you as an individual. Magazines such as Fibromyalgia and Chronic Pain LIFE provide regular, up to date information on the newest management strategies, research, and tips for living with fibromyalgia. The National Fibromyalgia and Chronic Pain Association, as well as the American Pain Foundation and American Academy of Pain Management, all regularly publish newsletters related to fibromyalgia and/or chronic pain. Furthermore, these organizations have websites that also provide comprehensive information related to fibromyalgia and pain management.
Doctors and other care providers, such as therapists, nurses, pharmacists, and medical specialists, should also be consulted on your journey to understand all you can 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 a relationship. ASK for their ongoing help and assistance, and for them to function as a sounding board when needed.
The Internet, while an indispensable research tool and source of information, is notoriously inaccurate. Research has corroborated the wide availability of low quality information found on the Internet. That said, keep the reality of fibromyalgia in mind when sourcing information from the Internet: there is no one proven best treatment method! Fibromyalgia manifests itself differently in each patient. If you read a testimony online that treatment X worked for one person, be skeptical and understand that treatment X may not work for you. The purpose of educating yourself is to learn about the options that you have. The Internet is a great place for this, but be sure to validate the information.
In contrast to the Internet, face-to-face support groups allow you to see how fibromyalgia is playing out in the lives of others who are suffering with the disease. Since fibromyalgia support groups are comprised of individuals who are going through many of the same trials and obstacles that you are, they can help you to better understand your own fibromyalgia and allow you to evaluate different treatments in context. Support groups also increase the pace of learning, as you are able to share things with other group members.
Your fibromyalgia is unique. It manifests itself differently in you than it does in other patients. From your causal factors, to your possible triggers, even your negative feedback loops and response to treatments – all of these things define your fibromyalgia and set it apart from the fibromyalgia other patients experience.
Before a condition can be effectively managed, it must be defined. It is important to detail how fibromyalgia is present in your life, including your symptoms, the possible causes, possible triggers, and potential patterns. The ‘definition’ of your fibromyalgia will change over time and therefore the evaluation process will be ongoing, however a starting point must be established.
You are the most important source of information about your fibromyalgia. You live with your condition on a daily basis and you know its true physical and emotional impact. Only through self-observation and self-awareness can you take true inventory of your condition – its symptoms, complications, impact on your life and well being, and what improves it. Focus on inspecting closely how Fibromyalgia is playing out in your life and track what you find in a manner that facilitates easy access to your notes and deeper evaluation.
Laying Down a Baseline
In order to effectively evaluate your fibromyalgia, it is important to begin from the ground up. Note all of your primary symptoms. Keep track of each symptom’s severity and write down descriptive details for each. Do not try at this stage to detail a history for how your fibromyalgia played out in the past; you are establishing a starting point right now. Focus on what fibromyalgia is for you right now, and how it is impacting your life. Make note of things you know for sure, including what you have tried in the past relative to treatment and what impact it had on you. If you have noticed that certain dietary changes seemed to help, make note of those. If your spiritual practice helps you relax on days when symptoms are at their worst, make note of that. If adhering to a regular schedule of both rest periods and periods of activity reduce your fatigue, make note of that.
Note things that confuse you and any questions that you have. You may consider drafting some basic charts or diagrams to try and help you define how you perceive fibromyalgia to be currently working in your body and mind. Formalize this material into an organized journal; take your time and be thorough. It may not seem like much, but this process is actually a therapy in and of itself, and this baseline information will form a foundation from which you can begin to measure your ongoing progress and the effects of your treatment efforts.
Fibromyalgia self-management does not mean isolated self-management! It is important to understand that you will need a team, and you are the boss. Never forget this and NEVER relinquish the role. This is not a job from which you can be fired. Even if your team includes someone with advanced medical degrees, an office full of awards, a high salary, and a hospital full of professionals reporting to them, it will not change the fact that they work for you! You are the boss, and only you.
CEOs of large corporations are not experts in every skill and job that is required in order for their company to succeed. Rather, they are experts at finding and managing experts, and then applying the skills and knowledge from those experts into a unified whole. This unified whole is far more capable than any of the team members working alone. Good government works in much the same way – or fails because of a lack of leadership skills. The President of the U.S. is not the world’s foremost economic expert, military commander, environmental expert, research scientist, Constitutional lawyer, and social worker all wrapped up into one. But, if he is to be recognized by history as being a great President, then he must be an expert at finding each of those (and many more) and pulling them together into a team that is effective at solving massive problems and achieving lofty goals. This is what leadership is all about. When it comes to managing your fibromyalgia, recognize where your strengths lie. Acknowledge your primary skills, research what skills and knowledge are required to best address your fibromyalgia, and then seek the best individuals you can to assist you.
Once you have defined your fibromyalgia, you need to work on building your team. An effective team will usually include your primary care physician, several specialists, selected friends, family, and support group members. Examples of specialists who you might find useful to have on your team are described in detail in Chapter 5 of this ebook.
Having a support group is also an important component of your fibromyalgia treatment. The key to a successful support group is having a two-way relationship with your support group members; this give-and-take offers you the value of accountability and allows you to gain insight from each other through the sharing of your experiences.
Finally, selected friends and family members may (or may not!) be important elements of your team. If you are fortunate to have family members who are sympathetic to your fibromyalgia, their involvement and support can make all the difference when it comes to successfully managing your fibromyalgia. If you do not have a reliable and/or understanding family support system, it might be in your best interest to exclude those individuals from your team. Remember, you are the boss and it is ultimately up to you to determine what you need and who can best provide it to you.
One way to maximize the effectiveness of the role your friends and family play in your fibromyalgia treatment is to place each member in a specific role. For example, if your spouse, partner, or a close friend is genuinely good at listening and providing comforting guidance, rely on that individual for emotional support and objective input. If you have someone who is able to assist you with running errands, transportation for you or your children, and housekeeping, solicit their help for those activities. For times when you need to relax or find a distraction from your symptoms on a bad day, have someone you can rely on to go out with you for coffee or lunch, or to a movie or museum. Everyone’s needs are different, and you may find that you don’t need many people to assist you; other individuals may require even more assistance than that listed here. The point is that it is important to distribute the responsibilities you require of your team across a number of different people, so that no one person feels overburdened or suffers burnout.
Also, be mindful of the fact that you will occasionally make mistakes, and that some team members will not work out. Use those times as opportunities to learn and move on; it is ok. You should periodically evaluate the performance of your team members. If a particular member is not contributing, replace them. Managing your fibromyalgia is not about making friends. Note that friends were not listed as being critical team members. This is because if you find that a team member is not providing value to you, and is not helping you move forward toward your goals, you need to replace them. Obviously, this is an issue that is best avoided when it comes to friends! Remember always that your first obligation is to yourself and your family, so assemble the best team that you can!
It is important to focus your self-management efforts on specific aspects of your fibromyalgia. Step back, take a detailed look at your fibromyalgia, and boil it down to targetable aspects. This will determine what goals you set for yourself and help put you on the path to defining the strategies to meet these goals. If you want to get from here to there, you have to know where “there” is! Specific goals are paramount in the successful management of any complicated venture, and few “projects” are as complicated as tracking down and stomping on the Elusive Fiend!
As you set your goals, remember to be specific and to set goals that can be associated with actions.
Consider the following examples:
"I Want to Get Better." This is not a specific goal. It is vague and does not clearly define a concrete outcome and the steps required to achieve it.
"I want to improve My Sleep." This is better, but there is room for improvement to make it more actionable and specific.
"I want to get to sleep faster" and "Wake up less during the night" and "Sleep longer each night" and "Feel more refreshed in the mornings" and "Reduce my morning stiffness.” This is a group of five specific goals to which actions can be tied. These goals can be reviewed in the context of specific treatment options.
When it comes to establishing and chasing goals, fibromyalgia requires small steps leading to incremental achievement of goals. Although it is easy to have expectations of instant gratification, the hard reality is that this is a tough fight, and one that will take time. One of the best things you can do for yourself is accept this reality, plan for it, and expect it. Each if the goals mentioned above can be measured, and success can be achieved in small, specific and measurable steps. These small steps will build upon each other and empower you to establish and achieve even more goals. For example, if it normally takes you one hour to fall asleep and through actions taken on your part, you improve that time to 45 minutes, a goal has been met! Your next step would be to try for 30 minutes using the same or a modified approach.
The best way to address problems that arise in your fight against fibromyalgia is to attack them in a systematic, defined manner. Once you have identified a problem that you feel must be addressed, it is important to consider all possible solutions. Recognize that some problems may have multiple causes, therefore a combination of solutions may be the most appropriate approach to addressing them.
Once you have identified a specific symptom or grouping of symptoms, research potential treatment options and evaluate the pro's and con's of each. When you feel ready to try one or more of the options move forward with an action plan including methods you will use to evaluate results. Sometimes, you may not be able to fully understand or determine your best options. In those cases, it is important to solicit input from the most relevant members of your team.
As you try out one or two possible solutions, be sure and evaluate their effectiveness. Recognize that the ultimate solution to your problem in some cases may be achieved through a combination of solutions, rather than just one solution.
Your symptoms and your causal factors should drive your treatment decisions. DO NOT let the pharmaceutical industry or dietary supplement industry make your treatment decisions for you, or allow them to influence you. Treatment should be targeted at specific factors, and you are the only one who understands your specific factors and can gauge what may work best. “Feeling better” is not a specific factor; “Eliminating the severity of my insomnia” is a specific factor.
When you evaluate a particular treatment option, make specific notes about what you hope to get out of it and which aspects of your fibromyalgia you expect to improve. Make note of multiple areas where it may have an impact and evaluate how this impact can potentially affect other symptoms. In addition, be sure to use your team! Review what you are evaluating and considering with the team members who are most appropriate for that particular goal. Ask for their opinion and input, but always remember to ask WHY they have their particular opinion. Do not let a team member’s personal bias influence your decision-making.
It is also important to ask yourself the following questions:
“What are the negative possibilities?
“What potential side effects should you be watching out for?”
“What possible negative interactions with other treatments should I be on the lookout for?”
“How likely are these and what is the worst case scenario?”
“How might this impact my life overall?”
"How much is this going to cost?"
"What are my specific goals relative to outcomes associated with this option?"
Case Studies -
Fred has been diagnosed with fibromyalgia though he knows little about what that means. Fred is prescribed Lyrica by his primary care physician because that is what the doctor has read should be effective, he has little actual experience with either the drug or fibromyalgia. Fred does not ask why or question this, but rather happily accepts it and takes it expecting it to cure his symptoms. Fred's fibromyalgia is largely defined by severe fatigue, deep muscular pain and cognitive impairment including dizziness and disorientation. Among the most common side effects of Lyrica are drowsiness and dizziness - things likely to be severe if present in Fred given his symptoms. Fred is a truck driver, he begins taking Lyrica the same day his doctor prescribed it, and he immediately heads out on a long haul truck trip. Double Ooooops. Fred may be in for some problems!
OR
Mary has evaluated her fibromyalgia at length, consulted her primary care physician and sleep specialists along with her nutritionist and massage therapist plus 3 members of her online support group. She has identified pervasive sleep impairment as a key causal symptom potentially driving her fatigue and dizziness along with her depression and tender point pain. Mary had decided to forego Lyrica or other prescription medications for now in favor of a combination approach (though she may test Lyrica in the future). She is utilizing Ribose and Acytel-L-Carnitine in the mornings to increase her energy, she is doing water walking as a safe exercise, she is eliminating caffeine and most gluten from her diet. She is also beginning to test different dietary supplements at night to improve her sleep including melatonin, kava-kava, and passion flower. Mary has written down the possible side effects of the dietary supplements she is planning to take so she can be aware of what may be causing any problems she experiences. She is tracking in her pain journal all of her symptoms and keeping notes relative to how her exercise and diet efforts are progressing.
Fred has not properly evaluated his treatment options - Mary has. Lyrica may in fact work out great for Fred and Mary may have a bad reaction to Kava. However, the odds are in Mary’s favor over the long run. This is because Mary understands her fibromyalgia, the options available to her, and she is using her knowledge to manage her approach to treatment. Fred is unconsciously abdicating the management of his fibromyalgia to someone else - his doctor - and is falling victim to “magic pill syndrome.”
All of the self-management steps we have defined so far lead to self-empowerment. They enable you to set goals for yourself and take educated and calculated steps toward achieving those goals. These steps are not only a necessity and a prerequisite for developing and managing an effective treatment approach, but they are also a positive feedback loop and embody an effective treatment. You can think of it like this:
Empowerment 
less depression less anxiety reduced stress reduced symptoms Success Demonstrated Empowerment
Or:
Responsibility + Education + Care Team + Goals + Treatment Evaluation = Empowerment.
When you are empowered, you minimize the negative impact of causal emotions by relying upon a systematic self-management approach that reduces confusion and feelings of hopelessness. It also provides self-encouragement and reassurance that you can do this! Not knowing or fully understanding “what” to do and “how” to do it are major factors that can undermine your ability to take action to achieve your goals. Without action, nothing is possible. Self-management drives empowerment through implementing a systematic approach. While it is important to understand that not every treatment approach is going to yield positive results, (in fact - most initiatives will yield no results at all) it is equally important to know that every treatment approach will yield data, and data compiled over time yields knowledge, which ultimately drives success. You should understand that failure is expected and is part of the systematic process you must use to address your fibromyalgia. Remember - a baseball player who is a complete failure with the bat 7 out of 10 times he tries to hit the ball has a future in the "Hall of Fame" if he can fail this consistently over a long career!
Successful self-management must rely upon a systematic approach. This is true not only for successful companies, militaries, and rulers, but for the Elusive Fiend as well. Understanding the critically important role that self-management plays in treating fibromyalgia is key; however, always remember that self-management without a systematic approach is a half-measure.
You MUST HAVE a well-defined and supported system for executing and managing your self-management program. (Chapter 6…)
