13. Minimizing Relapses

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Periods of intense symptoms, often called relapses, setbacks or flares, are a common and often demoralizing part of CFS and fibromyalgia. In addition to creating additional pain and discomfort, they can be deeply troubling, creating the worry that you will never gain control over your illness or make lasting improvement.

This chapter offers strategies to help you cope with the unevenness of your illness and its physical and psychological effects. You can apply the ideas to your life using the Relapse Worksheet, which is described at the end of the chapter.

Are You Having a Flare-Up Now?

If you are currently experiencing intense symptoms, ask yourself if your symptoms are familiar or if you are having new symptoms or symptoms with a new intensity. If your situation seems familiar, you may find the suggestions below helpful.

But don't automatically assume that intense symptoms are just a flare up of CFS or fibromyalgia. A majority of people with CFS or fibromyalgia have one or more additional medical problems, and experience acute problems as well as long-term illnesses.

If current your situation feels new and different, you may have something else going on in addition to CFS or fibromyalgia. In that case, consider getting medical help. If your symptoms are very severe and acute, for example if you are experiencing chest pain or fainting, seek immediate medical help.

Limiting the Severity of Relapses

There are many things you can do to limit a relapse. Some are actions to take; others are mental adjustments to make the situation more understandable or bring consolation. Here are seven strategies to consider.

1. Identify and Respond to Warning Signs. You may be able to reduce the length of a setback, or even prevent it, by training yourself to spot relapse warning signs and to take quick action. Relapse warning signs are the signals your body sends that a setback is beginning.

They include feeling especially weak, dizzy, tired or confused; having more pain than usual; feeling more confused than usual; and feeling cranky. Creating a list of your personal warning signs is one step in retraining yourself to pay attention to the signals a setback.

The second step is to develop a plan of what to do when warning signs appear, so that rather than ignoring your body's signals you can be responsive to them. Responses to warning signs may include lying down, reducing your activity level, limiting sensory input and/or limiting your time with other people.

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. Then I practice deep breathing to clear my mind. This relaxation period can take from 45 minutes to over two hours. Usually, I arise refreshed and energetic, and can resume all normal activities."

Another person reported similar success in limiting the effects of migraine headaches. She taught herself to recognize the warning signs that a migraine was coming and, by making immediate use of relaxation techniques, was able to decrease the intensity of the migraine or even prevent it.

2. Go to Bed...and Stay There. The most common strategy for overcoming setbacks is to take extra rest, continuing until the flare subsides. As one person 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!"

Another said, "One of my rules for living with CFS is: if all else fails, go to bed. This rule gives me permission to acknowledge that at times I am powerless over the illness and the smartest thing I can do is to give in to it."

3. 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. One person commented, "Asking for help if I cannot do it all or just letting go of the less important things that I am unable to do at the time helps me reduce stress and my setbacks."

Another commented, "On relapse occasions, I am not as hesitant as I once was to ask for help with either daily chores or whatever comes my way. I know my family wants to help me and it makes them feel good that they give me a hand."

4. Use Positive Self-Talk. People in our program say they are helped when they say consoling words to themselves during a setback. 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. For more on self-talk, see Chapter 31.

5. Stay Connected. Connecting with someone you trust via a phone call or email can be helpful because of the suggestions you receive, because of the reassurance you get or just from feeling connected to another person. One person in our program said, "It's much harder to be alone when I'm crashed, so I find a friendly voice on the phone for comfort."

Another wrote, "I have found it very useful to talk with another person when I'm in the middle of a crash. Often it doesn't matter what we talk about; just feeling connected to something beyond myself helps lift my spirits."

6. Prepare. Having things handy and in place can help reduce the anxiety of a crash and make it easier to weather. Several people in our program have described how they plan for flare-ups. One keeps a large supply of food in the house, including food that her husband and children can cook. Also, she has rearranged her bedroom to have things she needs close to her bed.

7. Take Extra Rest, Even If Flare Seems Over. Long periods of rest can create frustration as you think about all the things you want to do, but can't because of your symptoms. 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 a normal activity level. For many people, this means taking extra rest for several days after a relapse seems to be over. One person wrote, "When I feel the impulse to get back to work too soon, I visualize what I'll feel like if I do. That's usually good enough to convince me to take extra rest for another day or two."

Identifying Relapse Triggers

Some relapses are due to the waxing and waning of your illness, but other setbacks are triggered by actions you take, and events and situations that you can learn to manage or avoid. You can begin to gain control over relapses by identifying the factors that intensify your symptoms. To get you started, here are seven triggers often mentioned in our groups.

1. Overactivity. Living outside the energy envelope may be the most common cause of intense symptoms via the cycle of push and crash. The antidote: pacing. Living consistently within limits reduces the frequency and severity of relapses.

2. Poor Sleep. Non-restorative sleep can intensify symptoms and precipitate a vicious cycle in which symptoms and poor sleep reinforce one another. The solution: address sleep problems using good sleep habits, medications or both.

3. Travel and Other Special Events. Special events, like a vacation, a wedding, family visits 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 a higher-than-usual activity level.

But such events need not lead to a relapse. You may be able to minimize the cost of participation by making adjustments. For more on how to avoid setbacks by planning for special events, see the previous chapter.

4. Other Illnesses. Coming down with an acute illness or having multiple chronic illnesses can reduce energy and worsen symptoms. You can reduce flares by treating other conditions and acknowledging that they intensify symptoms. One person in our program said, "I've learned that I have to lower my expectations and level of activity when I have [an] extra illness, so as not to make this unavoidable relapse worse and last longer."

5. Stress. CFS and fibromyalgia are very stress-sensitive, so minimizing stress can prevent relapses. Stressors may include emotionally-charged events, such as financial problems, a disability review, a move or family conflict. Also, we may intensify setbacks by our expectations for ourselves or by our reactions to stress. For ideas on reducing stress, see chapter 18.

6. Stressful Relationships (Particular People). Some people with CFS and FM find interactions with particular people to be a source of disabling stress. Responses include talking with the person to redefine the relationship, limiting contact, getting professional help and ending the relation.

7. Sensory Overload. If you are sensitive to light, noise or crowds, you may experience intensified symptoms in situations of sensory overload. One common solution is avoidance. For example, get together with one or a few people rather than a large group or visit stores and restaurants when they are not busy.

Preventing Relapses

The last step in controlling flares is preventive: using lifestyle habits to avoid relapses. You can limit the frequency and severity of relapses using the eight approaches described in this section.

1. 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 to circumstances. As one person told us, "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 motion, such as food preparation, you may avoid symptoms by breaking the task down into five or ten minute segments with a rest between each work period. The same principle applies to mental work as well, as suggested by one student who said, "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. As one person says, "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 person in our program explained that she implemented scheduling by setting priorities for herself.

She said, "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."

Another pacing strategy is to have 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 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.

Some people have had success using very detailed and individualized rules they created for themselves, as described earlier. 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 far they will drive, how long they stay on the computer and how long they spend with relatives. 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?" and "What is my rule for this situation?"

2. Rest. Scheduled rests, done on a regular basis, can prevent relapses. Also, taking extra rest before, during and after special events or after a secondary illness can help you avoid setbacks or limit their severity.

One person in our program stated, "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." Another said about her use of rests, "I think my two daily fifteen-minute rests were the most important thing I did to aid my recovery."

If you know a time of unusual exertion is coming, something like a trip or a 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 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.

3. Keep Records. Having a health log can reduce relapses in three 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? What are my relapse triggers?

Second, records can serve as a source of motivation. Seeing how living within the energy envelope reduces symptoms reinforces your successes and provides a motivation toward further improvement. Third, records can help you hold yourself accountable. Seeing evidence of a connection between overactivity and increased symptoms brings home the fact that activity level affects symptom level.

4. Make Mental Adjustments. Many of the coping techniques that help limit relapses require new habits and behaviors, but their foundation lies in new, lowered expectations for yourself that, in turn, are based on acceptance of limits.

Here's what one person in our program said about mental adjustments she has made: "It has been important for me to accept my new life with CFS [and] move on. 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."

5. Honor the Body's Signals. There is a strong temptation to respond to the onset of symptoms by "pushing through." A different approach, listening to the body's signals, can prevent problems, as suggested by a person in our program, who said, "I have become more aware of the warning signals that my body sends me when I am doing too much and I am learning to stop as soon as symptoms appear - even if it's just lying down for a few minutes."

6. Be Assertive. Standing up for yourself can help you meet your needs, reduce stress and thereby prevent relapses. One person said, "Communicating clearly when I need medicine, rest, or quiet time and taking time for these things when I need them [all] help me to prevent a relapse. Another said, "It is extremely important for me to communicate my needs and limits to others."

7. Embrace Solitude. Time alone can reduce stress and allow for recharging of batteries. In the words of one person in our program, "Solitude helps me balance everything out. I have found it to be as necessary and fulfilling as resting. I get to know myself, tune into how I'm doing, and listen to what my body is telling me I need at that time."

8. Control Stress and Pursue Pleasure. Ongoing stress is one of the most challenging aspects of CFS and FM. You can control stress by using a daily stress reduction practice and other stress management strategies. Also, having pleasurable activities in your life reduces your frustration, making it easier to live within limits.

Relapse Worksheet

One way to gain some control over relapses is to use the Relapse Worksheet. It is divided into five sections. You will find a blank worksheet at the end of the chapter. A printable version is available online at our Logs, Forms and Worksheets page.

Limiting the Severity of Relapses

The first section asks you to state the strategies that help you limit the length and depth of setbacks. Here's an example.

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.

Having a list of warning signs can help you retrain yourself to respond differently when a downturn begins. The example below contains signals people in our program often list.

Responding to Warning Signs

This part of the worksheet is your strategies for how to respond 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.

Relapse Triggers

These are actions and events 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.

Preventing Relapses

This last section focuses on prevention. It answers the question: what do I need to do to avoid relapses? The list below contains ideas used by people in our program.

For a printable version of the Relapse Worksheet (and all the logs, forms and worksheets discussed on this site), go to the Logs, Forms and Worksheets page.