Chapter 6: Pulling it all Together: A Systematic Approach
Experts across all realms of the fibromyalgia world – from prominent authors to reputable associations to devoted researchers – have noted the need to effectively track what you are doing and what you experience with regard to your fibromyalgia. Unfortunately, none have gone into great detail about the processes that should be used - the “how to” part. The purpose of this chapter is to do just that: provide you with the how to tools you need to take ownership of and maximize the potential of your fibromyalgia self-management. You need to inspect what you expect, and this chapter will provide you with the information required to do so.
Before we begin with the discussion of the tools that you will need, consider this example to help put the whole concept into perspective: When you are sick and need treatment, you visit your doctor. As your doctor evaluates you, they go through a defined process to determine the course of action they choose to recommend. First, they ask you questions about your signs and symptoms. Then they record this information in your medical record for reference back to it at a later point in time. Next, based on what you have told them, they use all of the tools at their disposal – their medical knowledge, relevant clinical guidelines, and their understanding of how the illness is manifesting itself in your body – to recommend a course of action, i.e., a treatment. Essentially, what your doctor has done is collected data (by asking you questions about your signs and symptoms), analyzed that data using various tools, and then recommended a course of action (i.e., a treatment) to you as a result of their data collection and analysis. If you leave their office and return two weeks later, having tried the treatment and found it unsuccessful, the doctor will repeat the process of data collection, analysis, and action recommendation. By using a defined, repeatable system to evaluate your illness, the doctor does his best to ensure that the correct steps are always followed.
You are not a doctor, however you should still approach the self-management of your fibromyalgia with a defined, systematic approach that is firmly rooted in data collection and data analysis. Do not let this concept frighten you; it is easily achievable and anyone can do it. You can do it! You must inspect what you expect.
Step one: Collect - Track EVERYTHING associated with your fibromyalgia. This is a crucial first step. Think of it as the “data collection” process that allows you to take inventory of - and record - your signs and symptoms. Record how you feel each day, the symptoms you experience, possible triggers for those symptoms, what treatments you are trying, and how those treatments are impacting your life. Also note relevant factors such as sleep, stress, work pressures, family issues, anxiety and physical or emotional happenings. You are looking to build a record of how fibromyalgia is impacting and being impacted by your life.
Step two: Analyze - EVERYTHING you track. Analyze the data you record; your symptoms, your treatments, their effects on your body, your life, your overall well being. By having tracked everything and recorded it, you will have a wealth of information at your fingertips to analyze and to share with your care team and support group. You might see your fibromyalgia in a different light when it is laid out before you in writing on the table or on the computer screen. Patterns will emerge that you may not have otherwise noticed. Ideas will present themselves to you as you observe those patterns. And it will all culminate in providing you with a much more focused and well-rounded understanding of your medical condition.
Step three: Utilize - Using your newfound understanding of your fibromyalgia – its patterns, nuances, and effects on your life – evaluate your available courses of action (i.e., treatments) based on your analysis. Only through analysis and evaluation can you truly decide which courses of action will be best for you.
It is important to remember that this is an ongoing process. Tracking, recording, and analyzing your fibromyalgia signs and symptoms for one week will not lead you to a treatment that will ultimately get everything in check for you. Such a scenario is unrealistic in light of the elusive nature of fibromyalgia. You will need to rely on your system of data collection, analysis, and evaluation as you try new actions based on your findings. As those actions give you benefit – or not – you must continue to assess your symptoms by tracking and analyzing them to determine if more modifications are needed. Remember, this is an ongoing process. But you can do it! INSPECT what you EXPECT!
Recording your signs and symptoms on a regular basis – "collecting your data” – will require effort. It will require more than just jotting down a few notes here and there on a scrap piece of paper. You need an organized system. What works best for one person may not work best for another, but the overall premise is the same for everyone. Find the system that works best for you so that you can inspect what you expect.
You could approach your system the old-fashioned way, with journals, forms, notebooks or 3-ring binders, photographs and/or video, a tape recorder or voice recorder, and file folders. Although such a paper-based system may work for some people, it is terribly inefficient and compartmentalizes your data. You may have symptoms logged in one notebook, attempted treatments logged in another, and a free-written diary of your personal thoughts and feelings in yet another notebook. The information in these notebooks may be augmented with voice memos you record on a voice or tape recorder, however those recordings are filed away elsewhere, unable to be viewed in context with the written notes. Finally, you may misplace or misfile a journal or paper, losing valuable “data” that may make the difference for you in the evaluation of your fibromyalgia.
How do you analyze data that is spread out across a bunch of journals and binders? How do you identify patterns and causal relationships when your data is poorly organized and difficult to review as a whole? How do you turn hand written notes scattered across multiple 3 ring binders and notebooks into detailed graphs and charts you can use to conduct professional quality analysis? The answer : you don't. A paper-based system greatly limits your ability to evaluate your fibromyalgia in the most beneficial and comprehensive manner. Successful organizations do not track their key data on paper, and you shouldn’t either!
Admittedly, using a more traditional paper-based system is far better than doing nothing; FAR BETTER. However, even in the best case scenario, such a system leaves you managing your efforts as if it were the 1950s. The Elusive Fiend is a tough adversary and you need to bring your best game: put technology to work.
Yes, use your computer. Odds are, if you are reading this, you have one! Here are a few preliminary tips that can be of great benefit to get you started on your path toward successful self-management of the Elusive Fiend:
There are many methods that you can use to track symptoms. You could use a handwritten journal, however as previously stated, a much better option would be to use a spreadsheet (the best option would be to use our interactive FibroTrack system). Regardless of which method you choose, there are a few things to keep in mind and remember to always do.
As you evaluate and begin to define your fibromyalgia, note ALL of your symptoms. All means ALL. This includes even minor ones that you may brush off as being insignificant or even unrelated. As new symptoms pop up during ongoing treatment, note these and add them to your tracking log. Doing so can be key in identifying the things that may be side effects from drugs or supplements you are using.
It is extremely important to track everything in a consistent, systemized manner. Rate all of your symptoms on a scale from 1 to 10, with 10 being the worse. If you cannot use a spreadsheet, create some type of chart that you can note every day. If you choose to use a spreadsheet, get into detail and make your symptoms specific. Group your symptoms together by type, using such categories as muscular pain, tender points, mind/body functioning, internal pain, and so on.
Tracking Causal Relationships, Events, and Triggers
As you track the causal relationships, events, and triggers that you observe, do so using the same type of system used to track your symptoms. Track your sleep; break it down into such categories as how long you slept, what time you went to bed, what time you woke up, and how many times you arose during the night. Rate the quality of your sleep – was it restful? Did you have nightmares? How did you feel upon waking up? Use the same granular detail when tracking and recording other causal relationships, events, and triggers, such as fatigue, stress, emotions, relationships, body weight, depression, anxiety, PMS, menstrual pain, and associated conditions.
Keep track of the visits to your doctor, the medical tests you undergo, any accidents you have (slips, falls, bumps, bruises), the weather, and any abnormal actions or activities you experience.
Work hard to collect data that can be evaluated to look for possible causal relationships and patterns, which can then be used to help you structure specific treatment options.
***Understanding how your individuals symptoms and causational triggers and events are impacting each other and interacting in YOUR fibromyalgia is critical to effectively managing your ongoing treatment efforts. You need to turn this information into relevant data that can be evaluated. This is the core of enabling a process of “intelligent trial and error.”
When attempting new treatments, make limited changes at a time, often only one at a time. If you commence two separate treatment initiatives at the same time – such as a dietary modification and a dietary supplement - it may be hard to differentiate which treatment is causing any side effects were you to experience any. This is a core concept to sound scientific processes - testing only single variables at a time.
As you track your treatments and everything relative to them, divide them into groups to enable successful management. Examples of these groups might be drugs, dietary supplements, alternative remedies, therapy programs, exercise, diet, and so on. Keep records relative to all of these, and note any questions that you have. Integrate your team, and keep track of questions, answers, and opinions. All of this information is valuable for integrating data into a bigger picture strategy.
It is also important to track what you have done, what you have taken, when you took it, and how much. For exercise, record how long you exercised, the intensity at which you exercised, and what method you used to exercise (swimming, walking, etc.). Record therapies in which you have participated, which ones helped, and why you chose to do it. Documenting the experiences you have with these efforts can provide you with a wealth of insightful information.
“Intelligent Trial and Error” – A Concept and a System
Determining the most effective treatment(s) for your fibromyalgia will boil down to a simple process of trial and error. The purpose of the efforts you are making in your self-management focus and data collection is to transform a basic process into an empowered system that is “intelligent” - driven by the data you have diligently collected regarding your symptoms, signs, triggers, treatments and so on. Rather than taking shots in the dark and hoping for the best, you are making intelligent decisions based the results measured from previous intelligent decisions, all based on collected and analyzed data.
In order to make the most of your intelligent trial and error system, implement review systems that enable you to evaluate treatment efforts relative to your symptoms, events, triggers, and other variables. Plan for WHEN you will conduct reviews, and make it a specific task on your fibromyalgia to-do list. Remember from above that data collection relative to symptoms, events, triggers, and treatments is ongoing, and while review should be ongoing as well, make it a separate task and define it as such. Set aside specific time to devote to doing this, including efforts to integrate your care team and support group into the process.
If you are using a spreadsheet as is recommended, your spreadsheet can easily generate charts and graphs. Such visual representations may be useful in helping you visualize the impact your treatments and other efforts are having on the many variables associated with your fibromyalgia. Another visual aid is to use handwritten diagrams. Often the process of putting these diagrams together (including the process of throwing away several iterations along the road!) IS evaluation in and of itself. Review your symptoms charts, treatment effort logs, and personal notes as to why you have used the treatments you have tried. Relate the answers to things in your diagram.
It is also vitally important to identify YOUR negative feedback loops. The patterns that will emerge during your data review and analysis will help to identify these, which may not have been visible to you before you began analyzing and reviewing your fibromyalgia in a focused manner. By identifying these negative feedback loops and applying strategies to stop them, you can likely make a noticeable impact on certain variables associated with your fibromyalgia. Through data evaluation, pattern observation, identifying causal relationships and triggering factors, you can identify specifically the areas where you need to TARGET your treatment focus!
In a reverse of the process, implementing various treatment efforts and gauging their effect on your fibromyalgia will help to identify the POSITIVE feedback loops that you are hoping to establish. By determining the intervention strategies that are most effective, you can begin to slowly choke off causation factors, and initiate positive feedback loops that can reinforce ongoing treatment efforts.
For example, if you undertake exercise as a treatment, you may find that you begin to lose weight. As you lose weight, it may improve your depression. Improvements in your depression may result in further reductions in anxiety and stress, all of which may culminate in improved pain, fatigue and other symptoms.
Exercise 
Weight Loss Less Depression / Anxiety / Stress reduced symptoms.
The single most important factor when it comes to applying the principals presented here to effectively gain control over your fibromyalgia is to simply take action. Decide on one small piece of a plan to begin actively working to manage your fibro and then start doing it. This can be as simple as grabbing a notebook and writing down your key symptoms. A small start is a start - and getting started is typically the biggest step required. Don't just think about it!
Integrate your efforts into your daily planning. Set aside time specific to your fibromyalgia management efforts. Note specific detailed tasks - what you need to do and how, then assign time to it and get it done. One small step at a time, one new treatment initiative at a time - put the principals of Intelligent Trial and Error to work!
Understand that this process will be frustrating at times. Expect far more failures than successes. Know that most successes will be small in nature. Remember the magic pill lesson, and anticipate that in order to realize the largest reduction in your symptoms possible, gains will most likely come in small steps. One treatment initiative may yield a 20% reduction in a symptom. Another later effort may yield another 15% improvement. Some efforts may make things worse (stop those!). Over time you will build a treatment regimen that you can document is reducing your symptoms by a meaningful amount. Even though some symptoms may never be totally eliminated, the ability to reduce their impact on your life by 50% or more can be the deciding factor between a full and happy life where your managing your fibromyalgia and a life of misery where fibro is dictating to you.