The CFIDS & Fibromyalgia Self-Help Book

Chapter 7: Logging

If you are like most people with CFIDS 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. But if you can find patterns in the fluctuations, you may be able to identify causes of intense symptoms. This knowledge opens the way to gaining some control over your symptoms.

Some of the ebb and flow of symptoms may be due to cycles in the illness, but other fluctuations occur because of events in your life, most often changes in activity level and stress. A few minutes a day of record keeping can often be enough to reveal the connections between life events and symptoms.

Having written records can help you in a number of ways.

Keeping written records of symptoms and daily activities can be a powerful tool for gaining control over chronic illness. A health log offers a way to understand fluctuations in symptoms, to discover what you do that makes your illness worse and those things that make you feel better. If you’ve been confused by the ups and downs of your illness, logging can help you make sense of what have seemed to be unpredictable swings in your symptoms.

You can keep records to track symptoms, define your energy envelope, recognize connections between activity level and symptoms, and discover what helps you feel better.

Records can help you learn how to pace yourself. One student reported that she used her logs to categorize activities as light, moderate or heavy, based on how much energy each activity required and how much it increased her symptoms. She used that information to plan her days to 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 besides physical activity contribute to their symptoms. I mentioned in the last chapter a woman who expanded the amount of time she could do mental work by experimenting with time of day. If she tried working in the morning, fibro fog set in after 15 minutes to half an hour. She kept records for one week and found that her mental stamina was much better in the afternoon than in the morning. In the afternoon she could read for two 30-minute sessions with a 10-minute break and retain the information. Keeping records showed her that when she did something was crucially important. Other factors that often contribute to symptoms are emotions, stress and social activity. Logging can reveal the role these factors play.

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. He was surprised because he hadn’t experienced symptoms while exercising. As a result of his discovery, he reduced his exercise to a level that didn’t force him to nap.

Records can reveal the cumulative effects of activity, showing the importance of looking at time 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 the daily logs he kept for a year to gain control over his setbacks. First he reviewed the logs to identify all his relapses. He identified eight occasions during the year on which intense symptoms had forced him to bed for at least a day (his definition of a relapse). Second, he looked for common causes, finding that almost all of the relapses were associated with two factors: secondary illnesses and travel. Third, he developed strategies to minimize the impact of each of these factors. To combat relapses triggered by secondary illnesses, he decided to take extra rest even 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. The total time to complete the three steps was about two hours. The result: zero setbacks in the next year.

Records can also be an important source of motivation and inspiration. Seeing written proof of the effects of action on symptoms can provide a stimulus to stick with pacing. Records of progress can provide hope. JoWynn Johns, whom you met in the last chapter, noted how 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 to appreciate that fact she would need records. Her record keeping had a second purpose. Not only did it help her recognize patterns between symptoms and events in her life, it also motivated her.

Records can also function like a mirror, offering a reality check. One person says: “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.

And 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 which I could have had some control over.”

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

Here are two health diaries used by people in our course. They suggest how you might utilize record keeping in your self-management program. You can use one or both of them or develop your own system.

One possible starting point for record keeping is the Symptom Log. This chart consists of a list of symptoms common to many CFIDS and fibromyalgia patients, plus extra space for additional symptoms. To use the log, make entries one or more times a day, using one column for each set of entries.

You might use this log for a variety of reasons:

This 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.

Using an Activity 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 1 to 5 scale. On this scale, 1 is a very poor day, 3 is an average day and 5 a very good day.

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, tailor the records to 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.