The CFIDS & Fibromyalgia Self-Help Book

Chapter 8: Minimizing Relapses

Relapses, sometimes called setbacks or flares, are an inevitable and often demoralizing part of chronic illness. In addition to creating pain and discomfort, they are often deeply troubling. Swinging from better to worse can create worry about whether lasting improvement is possible. But even though relapses are an integral part of chronic illness, they can be managed. This chapter offers strategies to help you cope with the unevenness of your illness, and its physical and psychological effects.

If you are currently experiencing intense symptoms, ask yourself whether your symptoms are familiar or if you are having new symptoms or symptoms with a new intensity. If the latter, you may have something else going on in addition to CFIDS or fibromyalgia. In that case, prompt medical help may be useful or even critical. If not, you may find the suggestions below helpful.

If you find yourself in a flare-up, what can you do to help yourself? People in our groups have reported using a variety of ways to limit the severity of relapses. Some are actions to take, while others are thoughts that help make the situation more understandable or bring consolation. You might consider some combination of the following six strategies to limit the impact of 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.

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 your behavior, you may be able to bring setbacks at least partially under your control, limiting both their severity and frequency.

One place to start is to identify relapse triggers or areas of special vulnerability. Here are some relapse triggers mentioned often by people in our program.

Before ending this section, let me add that some flare-ups may be out of our control. CFIDS and fibromyalgia, like many chronic conditions, have cycles of their own which operate independently from other factors. Some relapses are likely to be due to the nature of the illness. In the short run we may have little control over the cycles of the illness, though we may be able to reduce the swings in symptoms over time through pacing and other adjustments.

Many of the coping techniques that help limit relapses require new habits and behaviors, but their foundation seems to lie in having new expectations for oneself based on acceptance of the limits imposed by illness. Here’s what several students have said about mental adjustments they have 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.

I’ve decided it’s all right to take care of myself for a change, just like I would take care of someone else.

I have accepted that I will probably never fully recover and in acknowledging that I am discovering better ways to co-habit with the illnesses.

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 by circumstances, as shown in the following quote: “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 motions such as food preparation, you may avoid symptoms by breaking a task down into five or ten minute segments with a rest in between. The same principle applies to mental work as well, as suggested by one student: “I do stressful things like taxes in small bites. 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. “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 student explained that she implemented scheduling by setting priorities for herself: “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.”

Scheduled rest done on a regular basis can prevent relapses. 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. Here’s what two people in our program say about the value of rest.

I think my two daily fifteen-minute rests were the most important thing I did to aid my recovery.

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.

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. A woman in one of our groups adopted this approach to attend a family 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 than usual naps 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.

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. Also, graphing your records can offer a powerful visual reinforcement of your successes and thus a motivation toward improvement. As JoWynn Johns wrote: “I graph[ed] my monthly percentages of good days and nights.... I needed to make this information visible to prove to myself the effects of mental and emotional exertion, as well as physical activity. I wanted concrete evidence of the effects of staying inside my envelope. Because limiting my life in this way is so very hard for me to do, I had to show myself that it was worth it.”

Class members have reported using the following additional strategies to prevent relapses:

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.

I’ve learned the signs of going too far and have a good idea of how and when to back off to prevent a big relapse. I consider that a huge improvement compared to how I started out.

I’ve learned that I have to lower my expectations and level of activity when I have extra illness, so as not to make this unavoidable relapse worse and last longer.

I realized through the course that I have about four or five different health problems. I need to get treatment for the others, as well as taking care of my CFIDS.

Communicating clearly when I need medicine, rest, or quiet time and taking time for these things when I need them help me to prevent a relapse.

It is extremely important for me to communicate my needs and limits to others. I find that my true friends will accept this and often will remind me about resting or stopping what we are doing.

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.

I try to do plenty of fun things, in small bites, to keep the endorphins flowing.

I must make time for fun or pleasurable activities. This is crucial to my feeling good. Nurturing my creative side, for this brings me great pleasure and validation within myself. Enjoy the beauty of nature, for there is so much around me.