Relapses & Special Events

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This page addresses two common and often troubling parts of ME/CFS and fibro: relapses and non-routine events.

1. Minimizing Relapses

Times of intense symptoms, often called relapses, setbacks or flares, are a common and often demoralizing part of ME/CFS and FM. In addition to creating additional pain and discomfort, such episodes can be deeply troubling, creating the worry that lasting improvement is impossible.

But there are many things we can do to reduce the frequency, severity, and impact of relapses. They are described in the article Controlling Relapses, which offers a four-part approach, summarized below. 

You can apply the ideas you find in the article to your life using the Relapse Worksheet, available for download and printing on our Logs, Forms and Worksheets page.
 

i Limiting Relapse Length and Severity
There are many things you can do to minimize the length and severity of relapses, including the seven strategies below:

• Get lots of rest
• Take extra rest even if the flare seems over
• Use positive self-talk
• Stay connected
• Postpone, delegate or eliminate
• When feeling normal, write a letter to yourself to read in a flare
• Prepare

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

• Feeling especially weak, dizzy, tired or confused
• Having more intense symptoms than usual
• Feeling more confused than usual
• Feeling cranky

Once you’ve identified your signs, the next step is to develop a plan of what to do when warning signs appear. Responses may include lying down, reducing your activity level, limiting sensory input and/or limiting your time with other people.

iii Identifying Relapse Causes
Some relapses are due to the waxing and waning of your illness, but others 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 causes that apply to you.

To get you started, here are seven triggers often mentioned in our groups.

• Overactivity (living outside your limits)
• Poor sleep
• Stress
• Sensory overload due to light, noise, crowds, smells and chemicals, weather changes
• Travel and other special events
• Other illnesses (both acute and chronic)
• Sressful relationships (particular people)

iv 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 seven approaches listed below:

• Pacing
• Routines
• Scheduled rest
• Logging/record keeping
• Mental adjustments
• Listening to the body
• Assertiveness
• Embracing solitude
• Controlling stress

2. Managing Special Events

Pacing is a challenge during normal times, but can be especially difficult for non-routine events, which include vacations, holiday celebrations, moving and remodeling, having dinner guests or houseguests or, for people with more severe conditions, taking a shower or leaving the house for any reason. 

These non-routine times often pull people out of their Energy Envelope and lead to relapses. We came up with the term Special Event to draw attention to the need to treat non-routine events differently from everyday life, and we developed three Special Event strategies that allow enjoyment of an event while minimizing the cost.

The strategies summarized below are taken from the article Strategies for Special Events, which also includes a special event success story of a woman who used the strategies for week-long family visits and replaced a six-month relapse with two days of extra rest. For special event planning, download the free Special Event Worksheet.
 

i Take Extra Rest Before, During and After
Store up energy by taking extra rest before the event. Limit symptoms by taking extra rest during. Take whatever rest is needed afterwards. The amount of extra rest will vary from person to person; twice as much as usual would be typical.

ii Plan in Detail
If you are traveling, this may include planning your activities for each day of the trip, including alternate activities you can do if your energy level is not what you expect. If you are going to a family event, planning might mean finding out the schedule ahead of time and deciding how much activity you will have.

One way to enjoy a special event is by passing tasks on to others. For example, if you are accustomed to doing all the cooking for a holiday celebration, ask family members to each bring a dish. Another adjustment is to go to an event, but not stay for the whole thing or take periodic rest breaks.
 

iii Discuss Your Plan With Others
After deciding on your level of participation, discuss your plans with the other people involved to gain their understanding and cooperation. You might also alert them to the possibility that you may need to cancel out of some events and encourage them to do things without you at times when you need extra rest.