By Bruce Campbell
(Note: Adapted from Chapter 11 of The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia.)
Relapses, sometimes called setbacks or flares, are a common and often demoralizing part of chronic illness. In addition to creating additional pain and discomfort, they can be deeply troubling.
Swinging from better to worse can create worry about whether control and lasting improvement are possible. This article offers strategies to help you cope with the unevenness of your illness, and its physical and psychological effects.
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. If your situation feels new and different, you may have something else going on in addition to ME/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, fainting or you are throwing up blood, seek immediate medical help. Don't assume that intense symptoms are just a flare up of ME/CFS or fibromyalgia.
Remember that a majority of ME/CFS and fibromyalgia patients have one or more additional medical problems, and that ME/CFS and FM patients suffer from acute problems as well as long-term illnesses.
Limiting the Severity of Relapses
There are many things you can do to help you through a relapse. Some are actions to take; others are mental adjustments to make the situation more understandable or bring consolation.
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."
Another said, "One of my rules for living with ME/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."
You may be able to reduce the length of a setback, or even prevent 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. That action alone makes me begin to feel better. 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 reports similar success in limiting the effects of migraine headaches. She writes that 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.
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 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."
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."
Seek Consolation and Support
Students report being helped by saying consoling words to themselves and by connecting with other people. 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. One woman said, "When I'm in a crash, I try to reach out for support. 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."
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. "It gives me a lot of peace of mind knowing I'm ready when one hits."
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 gradually to a normal activity level. 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 caused by factors over which you have some control. These factors could be actions you take or events that you can learn to manage or avoid.
You can begin to gain control over relapses by identifying relapse triggers, things that predictably cause an intensification of your symptoms. Here are some relapse triggers mentioned often by people in our program.
As discussed earlier, living "outside the energy envelope" is a common cause of intense symptoms via the cycle of push and crash. People in our groups have distinguished between overactivity of this type which they sometimes call overactivity that they regret, and another type, planned overactivity.
The former can be a way of life that leaves you feeling out of control; the latter is the result of a deliberate decision. Sometimes an event may be important, like taking a trip or being part of holiday celebrations, and you are willing to accept the consequences. (See the discussion of special events below.)
Non-restorative sleep can intensify symptoms and precipitate a vicious cycle in which symptoms and poor sleep reinforce one another. This is an especially common problem for people with fibromyalgia.
Coming down with an acute illness or having multiple chronic illnesses can reduce energy and worsen symptoms. By treating other conditions and acknowledging that they intensify symptoms, you can reduce flares.
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."
Another commented, "I [have] realized 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 ME/CFS."
ME/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 or a move, or can be long-term, such as family conflict.
One class member said, "I attempt to avoid all situations that will produce stress because stress inevitably triggers relapses." When another student was asked how she reduced her fibromyalgia symptoms, she replied, "I divorced my husband." Also, we may intensify setbacks by our expectations for ourselves or by our reactions to stress.
Even eagerly-anticipated occasions, like a vacation, a wedding 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 adjusting your schedule. You might, for example, attend a holiday celebration rather than hosting it.
Or you might go, but stay two hours, rather than the whole day or take periodic rest breaks. Travel can be made more doable by being less active than usual and by spending extra time resting.
You can use your knowledge of relapse triggers and the strategies described in this section to bring setbacks at least partially under your control, limiting both their severity and frequency. Here are eight strategies for preventing relapses.
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.
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 person 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. "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. 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?"
Scheduled rests, 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 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.
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, proving 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."
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 several students in our program 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-habitat with the illnesses.
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 at such times, can prevent problems, as suggested by the following quotes.
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 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.
Standing up for yourself can help you meet your needs, reduce stress and thereby prevent relapses.
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.
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.
Time alone can reduce stress and allow for recharging of batteries.
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.
Chronic illness often means pain and frustration. Having pleasurable activities in your life reduces your frustration, making it easier to live within limits. If you pace yourself, you are less likely to overdo.
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.