Minimizing Relapses

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By Bruce Campbell
 

Everyone with chronic illness experiences periods of intense symptoms. Whether you call them relapses, setbacks or flare-ups, they are an inevitable and often demoralizing part of chronic illness.

In addition to creating additional pain and discomfort, swinging from better to worse can make us wonder whether we will ever improve in a lasting way. So an important part of managing chronic illness is having strategies to help control relapses.

Are You Having A Relapse Now?

If you are experiencing intense symptoms now, ask yourself whether your symptoms are familiar or if you are having new symptoms or symptoms with a new intensity. If the latter, you may have something else going on in addition to ME/CFS or fibromyalgia. In that case, medical help may be useful or even critical.
 

Relapse Causes

Setbacks have many causes. Some are due to the waxing and waning of the illness. Like many chronic conditions, ME/CFS and fibromyalgia have cycles of their own, which operate independently from other factors.

So, some of the relapses we experience are likely to be due to the nature of the illness itself and would occur regardless of what we do. In the short run we may have no control over this factor, but we may be able to influence in the long run.

Another common cause of relapses is overactivity or living outside the energy envelope. Overactivity can be part of a vicious cycle, a closed loop in which doing too much leads to an intensification of symptoms and forced rest. This cycle can make you feel powerless, like you are riding a roller coaster.

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.

Another common cause of relapses is secondary illnesses. Coming down with another illness in addition to ME/CFS and/or fibromyalgia can reduce energy and worsen our symptoms. We'll talk more below about how to minimize the cost from this source.

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. And we may intensify setbacks by our expectations for ourselves.

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 participation, leaving us feeling pressured toward unusual levels of energy expenditure.

In summary, some relapses are caused by the natural cycles of the illness but others may be due to our actions. We turn now to how we may be able to bring setbacks at least partially under our control by changing the way we respond to them and the way we live.

Limiting Relapses

If you find yourself in the middle of a flare-up, what can you do to help yourself? People in our classes have found a variety of ways to limit the impact of setbacks. Some are actions you can take while others are thoughts to help you understand the situation or to console you.

The most common strategy is to take extra rest. Often the quickest and surest way to recover is to spend extra time in bed; anything else will intensify symptoms or lengthen the period of recovery.

Another common strategy is to consciously cut down on activity by postponing, delegating or eliminating tasks. It can be easy to get locked in on a particular way of viewing our life. Taking a fresh look may show us that some things are not necessary after all or that they could be postponed or done by someone else.

Talking to someone you trust can be helpful, either because of the suggestions you receive or from the reassurances they offer. At the very least, socializing distracts you from your symptoms.

Remember what got you through previous hard times, and re-use those strategies. Also, asking the question can be consoling, as it is a reminder that previous relapses ended, so probably the current one will too.

Some students have found it helpful to remind themselves that they have survived past setbacks and thus are likely to recover from the present one. Accepting the cyclic nature of the illness, with symptoms waxing and waning, provides consolation.

Relapse Prevention

In addition to learning how to respond differently to setbacks once they have started, you can learn how to prevent setbacks and reduce their frequency. Members of our groups have reported using the following strategies:
 

Pacing and Planned Rests: Pacing or living within the energy envelope helps to smooth out the chronic illness roller coaster. Probably the most common used pacing strategy is taking regular, scheduled rests.

Reducing Stress: There is research evidence to suggest that a regular stress-reduction practice is very helpful in promoting symptom reduction.

When done consistently, it can reduce our stress-reactivity. Also, you may be helped by eliminating sources of stress in your life (problem-solving), by adding pleasurable activities, and by having supportive relationships.

Avoiding Relapse Triggers: Earlier we discussed factors and circumstances that can trigger setbacks. Among them are: doing too much, not resting well, worry, stressful relationships, and family responsibilities.

Many people find that they can identify particular areas of vulnerability. It might be something like contact with an unsympathetic family member or not being able to say "no" to demands. Whatever the vulnerability, it reliably and predictably creates a relapse.

Keeping Records: Having a health log can help reduce relapses in two ways. First, records can help you to define your energy envelope so that you have a more 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 areas of special vulnerability (for example, emotionally-charged events, particular foods, standing up for extended periods)?

Second, records can serve as a source of motivation. Graphic representation of records can offer a powerful visual reinforcement of your successes.

Having a Daily Routine: Living your life in a planned and predictable way can help reduce relapses. Routine is less stressful than novelty. Also, having a predictable life increases your chances for living within your 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.

Having Detailed Rules: Some people have had success using very detailed and individualized rules they created for themselves. For example, one person 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 schedule.

Another similar strategy is to have a series of rules for specific circumstances. For example, one person noticed that he often returns to a normal activity level too soon after a cold or flu. He made a rule for himself of taking extra daily rest for at least a week after symptoms from the secondary illness had ended.

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?

Summary

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