Controlling Relapses: A Five-Part Strategy
By Bruce Campbell
(From the series Pacing: What It Is and How To Do It.)
Times of intense symptoms, often called flares, setbacks or relapses, are a common and often demoralizing part of Chronic Fatigue Syndrome 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 article offers a five-part strategy 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, available on our Logs, Forms and Worksheets page.
1) Identifying Relapse Triggers
The first step to gaining control over your flares is to identify those things that trigger setbacks. While flares are sometimes due to the waxing and waning of your illness, many setbacks are caused by factors over which you have some control. These factors could be actions you take or events that happen to you. In any case, they are things that consistently intensify your symptoms. Keeping a health log can help you identify your triggers.
Five triggers often mentioned by people in our program are:
- Overactivity: Probably the most common cause for a flare is living "outside the energy envelope." The body responds with higher symptoms when its limits are ignored.
- Poor Sleep: Non-restorative sleep can intensify symptoms and precipitate a vicious cycle in which symptoms and poor sleep reinforce one another.
- Other Illnesses: Coming down with an acute illness or having multiple chronic illnesses make flares more difficult to avoid and more severe when they occur.
- Stress: CFS and fibromyalgia are very stress-sensitive and sources of stress are numerous. We may intensify setbacks by our expectations for ourselves or by our reactions to stress.
- Special Events: Vacations, holidays and other special events can trigger flares. Non-routine events require more energy than everyday life, temporarily shrinking the energy envelope at a time when you may want to be more active than usual.
Completing the relapse triggers part of the form provides you with a list of your vulnerabilities.
2) Spotting 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 action (see 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 mention.
Relapse Warning Signs
Suddenly more tired than usual
Feel weak or dizzy
More confused than usual
Feeling stressed out
Eating junk food
3) Responding to Warning Signs
Because it is easy to ignore signs of trouble, it helps to have a plan in place telling you what to do 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. By taking action in response to the warning signs, you may be able to avoid a flare or at least reduce its length and severity. Here's a list of possibilities.
Responses to Warning Signs
Stop: switch to less demanding task
Reduce activity level
Simplify: no multi-tasking
Lie down (get rest)
Get help with cooking, cleaning & laundry
Go to bed earlier
Practice a relaxation procedure or take a bath
Avoid caffeine, sugar, junk foods & alcohol
Limit sensory input
No TV, radio or newspapers (media fast)
Limit time with other people
4) Minimizing Relapses
If, in spite of your best efforts, you find yourself in a flare, what can you do to limit its severity and duration? Here are six ideas to consider.
- Respond Immediately: You may be able to reduce the length of a setback or even end it by taking action as soon as symptoms begin to intensify. 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...Usually I arise refreshed and energetic, and can resume all normal activities."
- Take Extra Rest: The most common strategy for overcoming setbacks is to take extra rest, continuing 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 they will wait for another time."
- Postpone, Delegate or Eliminate: 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 in our program said, "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."
- Plan Ahead: Having things handy and in place can help reduce the anxiety of a crash and make it easier to weather. One person told us that she keeps a large supply of food in the house, including food that her husband and children can cook.
- Seek Consolation and Support: 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 you receive, because of the reassurance you get or just from feeling connected to another person.
- Return to Normal Slowly: 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 to a normal activity level gradually, resting more than usual for several days after the relapse seems to have ended.
Go to bed as soon as possible
Let go of tasks to focus on rest
Have easy-to-cook foods family can cook
Use positive self-talk
Call friends to stay connected
Take extra rest for several days after flare seems over
5) Preventing Relapses
The last step in controlling flares is preventive: your personalized list of lifestyle habits you can use to avoid flares. To get you started, here are six favorites from people in our program.
- Pace Yourself: Probably the most powerful strategy for bringing stability to life and preventing setbacks. Pacing means adjusting activity to the limits imposed by illness. It often involves strategies such as short activity periods, shifting among different activities, and having daily and weekly routines.
- Take Regular Rests: Scheduled rests, done on a regular basis, can smooth out your daily life. In addition, 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.
- Keep Records: Writing a health log helps you if two ways. First, it enables you to define your energy envelope by providing a detailed understanding of your limits. Second, records can serve as a source of motivation, documenting your progress and showing the connection between overactivity and increased symptoms.
- Make Mental Adjustments: Many of the coping techniques that help limit flares require new habits and behaviors, but their foundation lies in new, lowered expectations for yourself that, in turn, are based on acceptance of limits.
- Honor the Body's Signals: There is a strong temptation to respond to the onset of symptoms by "pushing through." Creating the habit of listening to and obeying the body's signals can prevent problems.
- Be Assertive: Standing up for yourself can help you meet your body's needs and reduce stress.
How to Avoid Relapses
Stay within my energy envelope
Go to bed at the same time each night and get up at the same time in the morning
Take rests every day
Have realistic expectations of myself
Take pain and sleep medications faithfully
Ask others for help
Avoid noisy places (sensory overload)
Have at least two pleasurable activities every day
Practice relaxation and stress reduction every day