Key 6: Minimize Relapses

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By Bruce Campbell

(Note: From the series Ten Keys to Successful Coping: 2005.)

Everyone with chronic illness experiences periods of intense symptoms. Whether you call them relapses, setbacks or flares, 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 you doubt that you can ever improve in a lasting way. So an important part of managing your illness is having strategies to help control relapses. This article looks at relapses from two perspectives, first discussing how to limit the impact of relapses once they have struck and, second, how to prevent them.

Before starting that discussion, however, I'd like to mention another issue. People with CFIDS and fibromyalgia often develop other chronic conditions and, like anyone else, can develop acute medical problems. So when you think you are experiencing a flare, it may be helpful to ask whether your symptoms are due to CFIDS or fibromyalgia, or whether they have a different cause. If you experience unfamiliar symptoms or especially intense symptoms, you may have something else going on. In that case, medical help may be useful or even critical.

Limiting the Severity of Relapses

If you find yourself in a CFIDS or FM flare-up, what can you do to help yourself? You might consider some combination of the following six strategies to limit the severity and length of setbacks. Some are actions to take while others are thoughts that help make the situation more understandable or bring consolation.

Take Extra Rest: The most common strategy for overcoming setbacks is to take extra rest, continuing it until the flare subsides. As one student in our program said: "When relapses occur, for whatever reason, I tell myself just to go with what my body is telling me to do: rest! If I have some things planned for that day, I try to tell myself that it will wait for another time."

Act Immediately: You may be able to reduce the length of a setback by taking action as soon as symptoms begin. A member of one of our groups said "As soon as I begin to feel edgy, nauseous or tired or have muscle pain (all indicators that a relapse is imminent), I stop whatever I'm doing, go to my bedroom, draw the blinds and lie down. That action alone makes me begin to feel better."

Postpone, Delegate or Eliminate Tasks: Reducing activity by postponing tasks, asking for help or even letting go of something as unnecessary can help speed the end of a setback. Taking a fresh look at what we think we have to do may show us that some things are not necessary after all or that they could be postponed or done by someone else.

Seek Consolation and Support: You may be helped by saying consoling words to yourself or by getting support from other people. Because relapses can be deeply discouraging, it can help to say soothing words to yourself such as "this flare will end, just like all the others." Self-reassurance can help you relax and quiet the inner voices that insist you'll never get better. Talking to someone you trust can be helpful because of the suggestions they offer, because of the reassurance they give or just from feeling connected to another person.

Prepare: Having things handy and in place can help reduce the anxiety of a crash and make it easier to weather it. For example, freeze food for use during flares.

Return to Normal Slowly: Long periods of rest can create frustration as you think of all the things you want to do that your symptoms prevent you from doing. This frustration can lead to resuming a normal activity level before the body is ready, leading in turn to another relapse. The final strategy for limiting the impact of relapses is to return gradually to your usual activity level, taking extra rest for several days after the relapse seems to be over.

Preventing Relapses

In addition to learning how to respond differently to setbacks once they have started, you may be able to learn how to prevent setbacks or reduce their frequency. Here are five strategies to consider.

Identify Relapse Causes: Some of the setbacks you experience may be due to the waxing and waning of the illness or other factors over which you have little control. But your actions may play a role in creating or perpetuating others. By changing how you respond, you may be able to bring setbacks at least partially under your control, limiting both their frequency and severity. 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. If you swing between push and crash, your life may feel out of control.
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 can create setbacks. Also, long-term stressors like family conflict can make symptoms worse and can intensify setbacks by our expectations for ourselves and by our reactions to stress.
Special Events: Special events like a vacation, a wedding or the holidays can trigger a relapse, as pressure (either internal or from others) leads us to unusual activity levels.

Make Mental Adjustments: Many of the coping techniques that help limit relapses require new habits and behaviors, but willingness to change may be rooted in having new expectations for oneself based on acceptance of the limits imposed by illness. Here's what one student said about the mental adjustments she has 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."

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 balancing activity with rest. Pacing strategies may include having short activity periods and shifting among different activities. You may be able to 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.

Some patients have found great benefit from 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. 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.

Use Rest: Scheduled rests done on a regular basis can prevent relapses. As one student said: "I think my two daily fifteen-minute rests were the most important thing I did to aid my recovery." 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. 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.

Control Stress: Research evidence suggests that a regular stress-reduction practice is very helpful in promoting symptom reduction. Techniques such as those described the next article in this series, when practiced consistently, can reduce over reaction to stress. Also, you may be helped by eliminating sources of stress in your life, by adding pleasurable activities, and by having supportive relationships.

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.

In Summary

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