Minimizing Flares with the Relapse & Special Event Worksheets
By Bruce Campbell
Note: This article is the second of a two-part series on planning worksheets. Part 1 describes daily and weekly schedule sheets.
Periods of intense symptoms, often called relapses, setbacks or flares, are a common and often demoralizing experience for people with Chronic Fatigue Syndrome (ME/CFS) and fibromyalgia.
One technique for reducing the frequency and severity of setbacks is by analyzing them using a Relapse Worksheet, which is described in the first section of this article.
One common occasion for relapses is a special event like a vacation or holiday celebration. The second section describes a planning technique called the Special Event Worksheet.
The worksheets are available for free download on our Logs, Forms & Worksheets page.
The first section of the form asks you to think about the causes of your relapses. While flare-ups of symptoms are sometimes due to the waxing and waning of the illness, other 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. Completing the relapse triggers form provides you with a list of your vulnerabilities. The example below, which consists of items often mentioned by people in our groups, is offered as a starting point.
Doing too much (outside energy envelope)
Too much exercise
Doing more than one thing at a time (multi-tasking)
Staying too long in one position
Stressful relationships (particular people)
Worrying about the future
Food or chemical allergies
Light or sound (sensory overload)
Time with other people
Relapse Warning Signs
The second section asks you to think about 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 or reduce the severity of a relapse. It is easy to miss or ignore the warning signs.
Having a list can help you retrain yourself to respond differently when a downturn begins. By filling out the form, you are expressing a commitment to heed rather than ignore signs of impending trouble. The form below contains signals people in our program often list.
Relapse Warning Signs
Suddenly more tired than usual
Feel weak or dizzy
More confused than usual
Feeling stressed out
Eating junk food
Responding to Warning Signs
The next section of the form is the place for you to set down how you will respond 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. 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
The last section of the worksheet gives you room to answer the question: what do I need to do to avoid relapses? The list below contains ideas used by people in our program.
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
Special Event Worksheet
Because of a combination of two factors, special events like vacations and holiday celebrations, can trigger intense symptoms. As non-routine events, they require more energy than everyday life, shrinking your "energy envelope."
If you don't decrease your activity level to match your temporarily smaller envelope, the event will intensify your symptoms.
At the same time, you may want to be more active than usual or feel pressured by others to be more active, a second potential cause for relapse.
In sum, a special event shrinks your envelope at a time you are tempted to do more than usual. How can you respond to this dilemma in a way that allows you to enjoy the event without paying too heavy a price?
One way is to plan for it. In the time leading up to the event, you can determine the actions you will take to avoid or minimize a flare-up of symptoms.
The Special Event Worksheet gives you a way to plan for the event by writing out what you will do to protect yourself before, during and after the event. The example below shows how the worksheet might be filled out for a vacation.
Scheduling extra rest and reducing activity before, during and after the vacation are the cornerstone of this person's plan. Doubling rest time before the trip stores up extra energy. Extra rest while on the trip helps to limit symptoms while away.
Planning to double rest time after returning home acknowledges that some recovery time is likely to be needed. Similarly, activity level is reduced during all three periods. The form provides a way to translate the need for lowered expectations into specific actions.
After deciding on her activity limits, the person using this form will discuss her activity limits with her family. If you discuss your limits with others ahead of time, you and they can plan to share some activities, while allowing others to do others while you rest.
Special Event Worksheet
Event: Family vacation
Double normal daily rest time for one week before trip
No special events (e.g. nights out of house) for one week before trip
Decide on activity limits during trip (e.g. 4 hours per day)
Discuss limits with family
10-15 minutes rest every two hours while driving
Double normal daily rest time; take more rest if symptoms high
Maximum of 4 hours of activity per day
Double normal rest time for one week after returning home
No special events for one week
For printable versions of the Relapse Worksheet and the Special Events Worksheet, and all the logs, forms and worksheets discussed on this site, go to the Logs, Forms & Worksheets page.
Copeland, Mary Ellen. Winning Against Relapse. Oakland: New Harbinger, 1999.