Preventing Relapses

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By Bruce Campbell

Relapses, flares, setbacks. Whatever you call them, they can be painful and demoralizing parts of chronic illness. But by using self-help strategies you may learn how to prevent them or reduce their frequency. Here are five strategies to consider.

1) Identify Relapse Causes

Before discussing some common relapse triggers that may be brought under control, let me note that some flare-ups may result from the waxing and waning of your illness. CFIDS and fibromyalgia, like many chronic conditions, have cycles of their own which operate independently from other factors.

So some relapses may be due to the nature of the illness, but others may be due to your actions or circumstances you can influence. By identifying relapse triggers, you may be able to reduce the frequency or severity of setbacks by avoiding circumstances and actions that create them.

Here are some relapse triggers mentioned often by people in our program.

Overactivity: Living "outside the energy envelope" is a common cause of intense symptoms via the cycle of push and crash. People in our groups have distinguished between overactivity of this type, which they sometimes call overactivity that they regret and another type, planned overactivity.

The former can be a way of life that leaves us feeling out of control, the latter is the result of a deliberate decision. Sometimes an event may be important, like taking a trip or being part of holiday celebrations, and you are willing to accept the consequences. (See discussion of discussion of special events, below.)
Poor Sleep: Unrestorative sleep can intensify symptoms and precipitate a vicious cycle in which symptoms and poor sleep reinforce one another. This is an especially common problem for people with fibromyalgia.
Secondary Illnesses: Coming down with an acute illness or having to deal with multiple chronic illnesses can reduce energy and worsen symptoms.
Stress: Emotionally-charged events --like financial problems, a disability review or being forced to move-- can create setbacks. Also, long-term stressors like family conflict can make symptoms worse. When one student was asked how she reduced her fibromyalgia symptoms, she replied: "I divorced my husband." Also, we may intensify setbacks by our expectations for ourselves or by our reactions to stress.
Special Events: Even eagerly-anticipated occasions like a vacation, a wedding or the holidays can trigger a relapse. Events like these are often associated with expectations (both internal and from others) about our level of participation, leaving us feeling pressured toward unusual activity levels. But such events need not lead to a relapse.

You may be able to minimize the cost of participation by adjusting your schedule. You might, for example, attend a holiday celebration rather than hosting it. Or you might go, but stay two hours rather than the whole day. Travel can be made more doable by reducing activity level and by spending extra time resting.

2) Make Mental Adjustments

Many of the coping techniques that help limit relapses require new habits and behaviors, but their foundation seems to lie in having new expectations for oneself based on acceptance of the limits imposed by illness. Here's what several students have said about mental adjustments they have made.

It has been important for me to accept my new life with CFS, move on, and realize I will not return to my former self. I've needed to redefine expectations of myself based on the new me. Lowering my standards and trying to break free from perfectionism has been a large part of this.

I've decided it's all right to take care of myself for a change, just like I would take care of someone else.

I have accepted that I will probably never fully recover and in acknowledging that I am discovering better ways to co-habitat with the illnesses.

3) Pace Yourself

Pacing is a favorite strategy for bringing stability to life and preventing setbacks. The term covers a variety of strategies. At minimum, pacing means adjusting activity to the limits imposed by illness and by circumstances as shown in the following quote: "I've cut back my activity level substantially overall, and when I feel tired I cut it back even more."

Pacing may also involve having short activity periods. Particularly with tasks that involve repetitive motions such as food preparation, you may avoid symptoms by breaking a task down into five or ten minute segments with a rest in between. The same principle applies to mental work as well, as suggested by one student: "I do stressful things like taxes in small bites. Just letting them pile up just adds more stress."

You may be able to avoid an increase in symptoms by shifting among different activities and by including healthy activities in your day. "What helps me is to have a balance of physical and mental activities, interspersed with frequent rests. I have recently introduced a checklist system to remind me about activities that are good for me such as walking, exercises, relaxing and hobbies."

Lastly, you may add stability to your life by living according to a realistic schedule. This involves both scheduling an appropriate number of activities and allowing plenty of time between activities, not pushing to squeeze in too much.

One student explained that she implemented scheduling by setting priorities for herself: "It definitely helps me to make a list of weekly and daily activities so that I can prioritize them. I know how much physical activity I can handle in a day, so I remember this and make my list accordingly. I always allow at least an hour's rest in the afternoon so this is a given on my daily list."

Some patients have found great benefit from having a daily routine. Living your life in a planned and predictable way can help reduce relapses for two reasons. First, routine is less stressful than novelty. And, second, having a predictable life increases the likelihood that you will live within your limits.

Your ability to do this depends on your developing a detailed understanding of your limits and then creating a schedule of activity and rest that honors those limits. If you can lead a consistent life, you are much more likely to gain some control over your relapses and to have fewer surprises demanding your energy.

Some people have had success using very detailed and individualized rules they created for themselves. One student in our program developed three rules for herself: no driving beyond 12 miles from home, no more than three trips outside the house per week, and no talking on the phone for periods longer than 20 minutes.

Having these rules helped her keep a focus on long-term goals when she was tempted to act in the moment. A variant on this strategy is to write out a daily to-do list. Some people with severe brain fog have found it useful to tape a set of instructions for themselves in some prominent place like the refrigerator.

Another similar strategy is to have a series of rules for specific circumstances. For example, some people set a limit on how long they will spend with relatives at the holidays. People whose CFIDS or fibromyalgia symptoms are intensified by secondary illness sometimes program extra rest for several days to a week after symptoms from the secondary illness ends.

If you develop specific guidelines for yourself, you can simplify your illness management program into asking yourself two questions: what situation am I in right now? what is my rule for this situation?

4) Rest

Scheduled rests done on a regular basis can prevent relapses. Also, taking extra rest before, during and after special events like vacations and the holidays or after a secondary illness can help you avoid setbacks or limit their severity. Here's what two people in our program say about the value of rest.

I think my two daily fifteen-minute rests were the most important thing I did to aid my recovery.

I can never get enough rest! The more I'm able to incorporate quality rest, even little bits and pieces, into my day, the better off I am.

If you know a time of unusual exertion is coming, something like a trip or a special family gathering, you may be able to reduce its negative effects by taking more rest than usual for several days ahead of time, then having extra rest during the event and after as well. A woman in one of our groups adopted this approach to attend a family wedding.

For two days before the wedding, she had extra long naps and limited her activity. She arrived early at the wedding, having arranged ahead of time for a place she could nap after the ceremony. In the week after the wedding, she also took longer naps than usual and limited her activity.

Although she experienced some intensification of symptoms in the wake of the wedding, she did not "crash." She called the experience a double success, since she both enjoyed the wedding and limited the price she paid.

5) Keep Records

Having a health log can reduce relapses in two ways. First, records help you define your energy envelope, giving you a detailed understanding of your limits. Logging can enable you to answer questions like: how many hours a day can I be active without intensifying my symptoms? how much sleep do I need? how consistently do I stay within my limits? what are the effects of stressful events? what are my relapse triggers?

Second, records can serve as a source of motivation. Seeing evidence of a connection between overactivity and increased symptoms can help you hold yourself accountable for your actions. Also, graphing your records can offer a powerful visual reinforcement of your successes and thus a motivation toward improvement.

CFIDS patient JoWynn Johns wrote: "I graph[ed] my monthly percentages of good days and nights....I needed to make this information visible to prove to myself the effects of mental and emotional exertion, as well as physical activity. I wanted concrete evidence of the effects of staying inside my envelope. Because limiting my life in this way is so very hard for me to do, I had to show myself that it was worth it."

Summary

Relapses are a frequent occurrence in chronic illness, but their causes can be understood, and their frequency and severity reduced through the use of self-help strategies.