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The Patient's Guide to Chronic Fatigue Syndrome & Fibromyalgia


7: Records and Worksheets

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This chapter focuses on another useful tool for self-managers: writing. The first section describes one form: record keeping using health logs. Taking a few minutes a day to fill out a health diary can help you uncover links between events in your life and your symptom level. The planning worksheets described in the second part of the chapter give you a way to translate the insights from your logging into concrete plans. (See Chapter 13 for three other ways to use writing: by keeping a diary, by employing a gratitude journal, and by using Thought Records to change your "self talk.")
 

Keeping a Health Log


Keeping written records can be a valuable tool in your self-management program. A health log can help you in at least four ways. You can use records to:

  • Control symptoms
  • Motivate yourself
  • Get a reality check
  • Explain and document your illness
     

Controlling Symptoms

If you are like most people with CFS and fibromyalgia, your symptoms fluctuate, both within a day and from one day to the next. When these fluctuations seem random, they can contribute to a sense of frustration and helplessness. A health log offers a way to understand the fluctuations in your symptoms. It's a tool for discovering what makes your illness worse and what helps you feel better. This knowledge opens the way to control of your symptoms.


For example, records can help you learn how to pace yourself. One person, after noting that her symptoms were proportional to her exertion, used her logs to divide activities into categories of light, moderate and heavy, based on how much energy each activity required and how much it increased her symptoms. She used that information to plan her days so that she could alternate light activities with moderate and heavy ones. She reported, "I can do more now and have lower symptoms.


Other people report that record keeping helped them to recognize that many different factors contribute to their symptoms. One woman, for example, used record keeping to discover that her mental activity was affected greatly by the time of day. She found that if she read in the morning, fibro fog set in after 15 minutes to half an hour. When she kept records for a week, she found that her mental stamina was much better in the afternoon. By studying during that time, she was able to read for two 30-minute sessions with a 10-minute break and could retain the information. Over time, she increased her total study time to two hours a day. Keeping records showed her that when she did something was crucially important. Logging can also reveal how symptoms are affected by factors such as emotions, stress and social activity.


Records can also show how the effects of activity may be delayed. One person reported that he felt so tired some days in the late afternoon that he took a nap. Through studying his records, he found that these naps occurred on days when he had exercised earlier in the day. He was surprised at this connection, because he hadn't experienced symptoms while exercising. He experimented with different levels of exercise, eventually finding one that didn't tire him out.


Records can reveal the cumulative effects of activity, showing the importance of looking at periods longer than a day. Some people find that they can maintain a consistent activity level for several days, feeling tired only at the end of the period. Having records helps them think about what level of activity they can sustain.


You can also use your records to understand patterns over even longer periods of time. One person in our program, for example, used his daily logs to understand, and then eliminate, relapses. Reviewing his logs for a year in which he had spent a total of almost two weeks in bed with CFS flares, he found that most of his relapses were associated either with secondary illnesses, such as colds or the flu, or travel. He decided to combat relapses triggered by secondary illnesses by taking extra rest after the symptoms of the secondary illness had ended. To minimize travel-related setbacks, he limited travel to a few hours' driving distance from home and took rest breaks while driving. Since that time, he has experienced no setbacks serious enough to put him in bed for a day (his definition of a relapse).
 

Motivating Yourself

Records can also be an important source of motivation and inspiration. Seeing written proof that activity level affects symptoms can provide a stimulus to stick with pacing. Records of progress can provide hope. For CFS patient JoWynn Johns whose experience is described in detail in Chapter 10, both factors were important to her learning to live within her energy envelope. After recognizing that mental exertion and emotional stress provoked her symptoms just as much as physical activities, she concluded that she would need records to remind herself of those causes of her symptoms. She wrote, "Color coding with hi-liters enables me to see readily how I'm doing during the month. I find this kind of visible feedback motivating."
 

Getting a Reality Check

Records can also function like a mirror, offering a reality check. One person in our program said, "Logging brings home to me the reality of my illness. Before logging, I didn't realize that most of my time is spent on or below about 35% functionality. This false perception that I was better than I am led me to overdo things, but now I am less ambitious."


Another person uses a visual record keeping system to help her pace herself. She rates each day and records her rating on a calendar using colored dots. Green means a good day. Yellow means caution. Red means stop: intense symptoms, time to go to bed.


A third person reviews her records to see where she might accept more responsibility. "At the end of each week, I look at my activity log and write a short summary at the bottom of the page, commenting on good experiences, symptoms I had that were not my fault, and symptoms I had [that] I could have had some control over."

Explaining Your Illness & Documenting Disability

Lastly, you can use records in discussions with physicians and to substantiate a claim for disability. Health records can document your functional level and show changes over time.
 

Sample Health Diaries


There are many ways to track your life using written records. Here are two health diaries to get you started. You can use one or both of them or develop your own system.
 

Symptom Log

The Symptom Log consists of a list of symptoms common to people with Chronic Fatigue Syndrome and fibromyalgia. To use the log, make entries one or more times a day, using one column for each set of entries.


You can use this log to:

  • Define your overall level of symptoms
  • Determine which symptoms are most important
  • Document daily swings in symptoms
  • Recognize interactions among symptoms
  • Document changes in symptoms over time

The example at the end of the chapter shows a Symptom Log completed for a five-day period. The chart shows a symptom cluster consisting of five elements: fatigue, pain, fogginess/memory problems, poor sleep and depression. These symptoms were at moderate to severe levels during at least part of every day. In addition, this person had two days with headaches.
 

The log indicates that the patient's symptoms usually improved during the day and were generally lowest at night. The exceptions were Wednesday and Thursday, when she was more active than usual in the afternoon. The effects of overactivity were delayed, not occurring until the evening.


The person using the log also observed some connections among symptoms. Her main symptoms (fatigue, brain fog, and muscle pain) were lowest in the mornings that followed nights with good sleep. She also saw a connection between depression and her other symptoms. Her depression was lowest when her other symptoms lightened in the morning, and higher when she experienced stronger symptoms.
 

Activity Log

The Activity Log helps you associate activities with symptom levels. Using the log, you can recognize connections between causes (your activities) and effects (your symptoms). Activities you might want to track include amount and quality of sleep and rest, specific activities (cooking, errands, TV, reading, socializing), exercise, emotions and stress.


With the log, you can record the number of hours of sleep (entered for the day the sleep ended), daytime rest, key activities and events of the day, symptoms (rated from 1 to 10), comments and an overall rating for the day on a scale of 1 to 5. On this scale, 1 is a very poor day, 3 is an average day and 5 a very good day.


To give you an idea of how to use the form, there is a sample Activity Log at the end of the chapter [Note: sample can be found in printed version of book only; not included in online version]. The patient who filled it out was interested in finding patterns in her symptoms and associating the patterns with events in her life. Before starting her record keeping, she noticed an improvement in her symptoms due to two changes she made. She had more stamina after starting two half-hour pre-emptive rests each day. Also, she reduced her brain fog and became more productive in her half-time job after changing her work schedule from mornings, when her symptoms are usually at their worst, to afternoons, a better time of day for her.


Even after making these changes, she had a higher level of symptoms than she wanted. She was motivated to start logging to learn why. She decided to make entries in her log three times a day. She planned to enter the number of hours she slept as soon as she woke up in the morning. She also expected to write entries just before going to work and at bedtime.


She rated Monday as average (3). During the morning, she had mild pain and fatigue, plus a small amount of brain fog. She experienced no symptoms in the afternoon, her best time of day. In the evening, she felt moderate brain fog during dinner in a noisy restaurant and had trouble getting to sleep.


On Tuesday, she had a higher level of symptoms in the morning, plus symptoms in the afternoon. For this reason, she rated the day as below average. She asked herself why she had higher than usual symptoms. There was no obvious cause on Tuesday for the flare. Her activity level was similar to that on an average day. But Monday had been different in several ways. Her activity level was higher. In addition to her time at work, she had shopped and cooked in the morning, and had gone out in the evening. Also, she had skipped her rest, even after sleeping poorly on Sunday night. Her experience was probably an example of how the effects of events can be delayed. Record keeping can help make delayed reactions more evident.


Because her symptoms were even more intense on Wednesday, she rated that day as much below average. She rested in the morning, which helped reduce her symptoms somewhat, but she left work early. She was probably feeling the cumulative effects of several days' activity.


On Thursday, she felt a little better when she got up and spent much of the morning resting before going to work. That rest, in combination with all the rest the previous day, resulted in an average level of symptoms overall. She noted that fibro fog set in after she had been on the computer for 45 minutes. This experience indicates that exceeding limits on mental activity can lead to symptoms.


She forgot to note her activities on Friday morning, but rated the day as better than usual because of having low symptoms in the morning and none in the afternoon or evening. She slipped back to below average on Saturday after spending part of the afternoon doing errands and an hour gardening. The combination resulted in her standing for a total of three hours, much beyond her one-hour limit. She decided to keep a movie date with a friend for the evening, even though her symptoms were moderate.


Her symptoms were only a little above average on Sunday morning, but she was able to eliminate them by resting for several hours. The rest of the day was symptom-free, except for an hour in the evening, when she experienced moderate brain fog following a phone conversation with her sister. Her sister had called to announce that she was pregnant. The patient was excited by the news, then remembered that emotional events, whether good or bad, often trigger brain fog.
 

Guidelines for Logging

If you are interested in using health logs, you might keep in mind the following two guidelines. Make your log:


1. Easy to Use: If your diary is easy to use, you are more likely to fill it out. A common rule of thumb is that a log should take only a few minutes a day to fill out.


2. Meaningful to You: Use logging to help you answer questions that are important to you, not because you think you should or to please others. Whether you use an existing form or develop your own system, make sure the records fit your situation.


Record on a daily basis and set aside time regularly to review your logs. Plan to spend some time each week or once a month going over what you have written to look for patterns and connections. If possible, ask someone to go over them with you.
 

Planning Forms & Worksheets

The forms in this section can help you translate insights from logging and other exercises into concrete plans. Taking what you have learned, you create your individualized guide for better living. This section shows you how to use four planning forms. They are worksheets for your daily schedule, your weekly schedule, relapses and special events. (For printable versions of the logs and worksheets in this chapter, go to the logs and forms page.)


To organize your worksheets, consider using a three ring binder with several dividers. Label the tabs on the dividers in a way that's helpful to you. You might have tabs for the four worksheets described in this chapter, plus others for your logs and for a list of your medications. Alternately, you could keep your materials in file folders or organize them in some other way. The important thing is to develop a system that fits your situation. You may use existing forms or create ones of your own.
 

Daily Schedule

The Daily Schedule worksheet gives you a way to translate your understanding of your capabilities and limits into a daily routine of activities and rest. Adhering to the schedule offers a way to control symptoms and bring some stability to your life. Before setting up a daily schedule, get an understanding of your limits. You can do this by using the Rating Scale in Chapter 1, the Activity Log from this chapter or the Energy Envelope form in Chapter 9. Any of those methods should give you a sense for how much activity your body can tolerate at the present time.


Here's how one person made use of the Daily Schedule worksheet. Jane, who is married and in her 50's, contracted FM about 10 years ago. She lives with her husband in California. Her two adult-age daughters live in the same city. She rated herself between 30 and 35, about average for people in our program. Given her self-rating, she believed she could be active about three hours a day and could leave the house most days of the week. She wanted to work toward having a detailed schedule, but decided to start with just a few routines. Her initial priorities were getting good sleep, eating well and exercise.


Since getting good sleep was her highest priority, she began by writing out her bedtime routines. (See box.) Knowing that she has trouble getting to sleep if she is active in the hour before bedtime, her first item specified her "winding down" routine. She also included items that reflected other things she knows about herself. Taking a bath helps her to relax. She falls asleep more quickly if she spends a few minutes at night making a To Do list for the next day. Having a list reduces her tendency to ruminate about the future. Since morning is usually the time her fibro fog is strongest, she puts out her clothes the night before. All these were included in her bedtime routines.
 

 

Bedtime Routines

Wind down: No TV, computer or phone calls after 9
Take bath
Make To Do list for tomorrow
Set out clothes for tomorrow
Take evening pills
In bed by 10


She decided that her morning and afternoon routines would focus on eating two healthy meals, stretching and taking pre-emptive rests. Since afternoon is her best time of day, she scheduled her daily outing then. (See Weekly Schedule on the next page for specifics.) The only thing she asked of herself during the evening was to prepare dinner for her husband and herself. (He gets his own breakfast and buys lunch at work.) The items she put on her schedule were not the only things she did during a day. Rather, they were those things she wanted to focus on at the time she started using the worksheet. As she succeeded with this first set (see box below), she added more items.
 

 

Morning Routines

Eat
Take morning meds
Shower & dress
Review & revise To Do list
Stretch
Rest for 20 minutes

Afternoon Routines

Eat
Stretch
Activity for the day (see Weekly Schedule)
Computer for 20 minutes
Rest for 20 minutes

Evening Routines

Fix dinner & eat

 


Weekly Schedule

Because not every day is the same, it is also useful to have a Weekly Schedule. When Jane filled out the schedule sheet shown on the top of the next page, she believed she could have one major activity each day without intensifying her symptoms. Since afternoon is her best time, she scheduled most of her activity for that time. She knew that if something unexpected came up, she would have to delete one of the items from her schedule. Because exercise is important to her, she planned to go to the Y for a water exercise program two days a week. She set aside one afternoon for grocery shopping and other errands. Two other events were her weekly cooking, and time for laundry and housecleaning. Finally, she scheduled two afternoons a week for appointments or socializing. Her one evening event was having her daughters over for dinner on Sunday.


My Weekly Schedule

SUN

MON

TUE

WED

THU

FRI

SAT

Morning
             
Afternoon
Weekly
Cooking
Y Pool Appts Y Pool Appts Laundry Cleaning Grocery Errands
Evening
Family
Time
           

Jane soon concluded that her weekly schedule was unrealistic. She discovered that, if she tried to do something every day, she needed to rest at least one afternoon a week and sometimes two. That meant that she could not schedule an activity for each day. The most would be five or six days a week. She also found that she could not both fix dinner and entertain her daughters on Sunday evening. Her body counted that as two events, which was beyond her limit of one per day.
 

My Weekly Schedule

SUN

MON

TUE

WED

THU

FRI

SAT

Morning
             
Afternoon
  Y Pool Appts Y Pool Appts Rest Cook for week
Evening
Family
Time
           

 


Her experience led her to conclude that her true rating was probably between 25 and 30 on the rating scale, not the 30 to 35 she had believed previously. After thinking more about her limits and talking with her family, she came up with a revised schedule. (See box below.) She switched her major weekly cooking from Sunday to Saturday. At her request, her husband agreed to do the weekly grocery shop-ping. He and her daughters agreed to trade off preparing the family dinner on Sunday. Jane decided to free Friday afternoon for rest by spreading her laundry and housecleaning across the week rather than devoting Friday afternoon to them. She recognized that this experiment might not work and decided that her next step would be to ask her husband to help with chores or to hire someone.
 

Relapse Worksheets

Periods of intense symptoms, often called relapses, setbacks or flares, are a common and often demoralizing experience for people with CFS and fibromyalgia. Chapter 11 discusses ways to limit the severity of relapses and offers ideas about prevention. Use the following forms to apply the general principles in that discussion of relapses to your individual situation.


Relapse Triggers
: While relapses are sometimes due to the waxing and waning of your illness, other setbacks are caused by factors over which you have some control. These factorscould be actions you take or events that happen to you. In any case, they are things that consistently intensify your symptoms. Completing the relapse triggers form provides you with a list of your vulnerabilities. The example, which consists of items often mentioned by people in our groups, is offered as a starting point.
 

Relapse Triggers

Doing too much (outside energy envelope)
Too much exercise
Doing more than one thing at a time (multi-tasking)
Poor sleep
Staying too long in one position
Travel
Secondary illnesses
Financial problems
Stressful relationships (particular people)
Worrying about the future
Food or chemical allergies
Light or sound (sensory overload)
Time with other people
Family responsibilities

 
Relapse Warning Signs
: Relapse warning signs are the signals your body sends that indicate you are heading toward a relapse. If you respond by taking corrective actions (see the next section), you may be able to avoid a relapse entirely or at least reduce its severity. But it is easy to miss or ignore the warning signs. Having a list can help you retrain yourself to respond differently when a downturn begins. By filling out the form, you are expressing a commitment to heed, rather than ignore, signs of impending trouble. The example below contains signals people in our program often list.
 

Relapse Warning Signs

Suddenly more tired than usual
Feel weak or dizzy
Extra pain
Stiffness
More confused than usual
Feeling stressed out
Cranky
Sleepy
Anxious
Eating junk food

 


Responding to Warning Signs
: Because it is easy to ignore signs of trouble, it helps to have a plan in place telling you what to do when warning signs appear. Having such a plan can help you to retrain yourself away from ignoring the signals of your body and in the direction of being responsive to its needs. Here's a list of possibilities.
 

Responses to Warning Signs

Stop: switch to less demanding task
Reduce activity level
Simplify: no multi-tasking
Lie down (get rest)
Get help with cooking, cleaning & laundry
Stretch
Go to bed earlier
Practice a relaxation procedure or take a bath
Avoid caffeine, sugar, junk foods & alcohol
Limit sensory input
No TV, radio or newspapers (media fast)
Limit time with other people

 


Preventing Relapses
: The last relapse worksheet focuses on preventing relapses and reducing their frequency. It answers the question: what do I need to do to avoid relapses? The next list contains ideas used by people in our program.
 

How to Avoid Relapses

Stay within my energy envelope
Go to bed at the same time each night and get up at the same time in the morning
Take rests every day
Have realistic expectations of myself
Stretch regularly
Take pain and sleep medications faithfully
Ask others for help
Avoid noisy places (sensory overload)
Have at least two pleasurable activities every day
Practice relaxation and stress reduction every day

 
 

Special Event Worksheet

Special events, such as a family vacation or a holiday celebration, present special challenges. As non-routine events, they require more energy than you normally use. For that reason, they can pull you outside your energy envelope and lead to higher than usual symptoms. At the same time, you may want be more active than normal. So, you face a double danger. At a time when your energy envelope is smaller than usual, you would like to be more active than usual. How can you balance your desire to enjoy a special event with respect for your body's needs?


One way is to plan for it. In the time leading up to the event, you can determine the actions you will take to avoid or minimize intense symptoms. Also, you can decide whom you will share your plans with and whose cooperation you want to enlist.


One planning technique is the Special Event Worksheet, which helps you to plan how you will use your time during the event and also asks you to plan for the periods before and after the event. The example below shows how the worksheet might be filled out for a vacation. For more ideas on dealing successfully with special events, see the section titled "Vacations, Holidays and Other Special Events" in the chapter on pacing.
 

Special Event Worksheet

Event: Family vacation

Actions Before:
Double normal daily rest time for one week before trip
No special events (e.g. nights out of house) for one week before trip
Decide on activity limits during trip (e.g. 4 hours per day)
Discuss limits with family

Actions During:
10-15 minutes rest every two hours while driving
Double normal daily rest time; take more rest if symptoms high
Maximum of 4 hours of activity per day

Actions After:
Double normal rest time for one week after returning home
No special events for one week

 


References


CFIDS and Fibromyalgia Self-Help website: For printable versions of the logs and worksheets in this chapter, go to the logs and forms page.


Copeland, Mary Ellen. Winning Against Relapse. Oakland: New Harbinger, 1999.
 

Starlanyl, Devin and Mary Ellen Copeland. Fibromyalgia & Chronic Myofascial Pain: A Survival Manual. Oakland: New Harbinger, 2001. 2nd ed. (See Chapter 16: Wellness Recovery Action Planning.)


FlyLady website: www.flylady.net. (See section titled "Control Journal.")

 

 




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