Controlling Relapses: A Four-Fold Strategy

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By Bruce Campbell

(One article in 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 (ME/CFS) 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 four-part strategy to help you cope with the unevenness of your illness, and its physical and psychological effects. You can apply the ideas you find here to your life using the Relapse Worksheet.

Before jumping in to the strategies, please answer the question below.

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. But don’t automatically assume that intense symptoms are just a flare up of ME/CFS or fibromyalgia.

If your current situation feels new and different, you may have something else going on in addition to ME/CFS and/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 or fainting, seek immediate medical help.

1) Minimizing Relapses

There are many things you can do to limit the length and severity of relapses. Many people use a combination of strategies, often including some or even all of the seven below.

Take Extra Rest: The most common strategy for overcoming setbacks is to take extra rest, continuing until the flare subsides (and even beyond, as explained in the next point).
Return to Normal Slowly: A strategy for avoiding a double relapse: return gradually to a normal activity level, resting more than usual for several days after the relapse seems to have ended.
Use Positive Self-Talk: It's easy to get discouraged during a relapse and to say things that increase discouragement, such as "I'll never get over tis" or "What if I'm stuck permanently at this level?"
Being able to speak positively and truthfully to yourself is a way to reduce stress and make it more likely you'll do things that will help. To do so, you can say soothing words to yourself that make it more likely you'll stick with things that help.

When the voice in your head is saying things like “you’ll never get better,” respond by saying something like “you’ve recovered from all the other relapses, so just relax.”
Stay Connected: It's easy to feel isolated during a relapse. You can counteract that by staying in touch with people.via phone calls, emails and sometimes in-personal meetings. Jusl feeling connected with another person can be reassuring. By talking to others, you can distract yourself from your problems. Also, you may hear some ideas about how to deal with the relapse..
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.
Write a Letter to Yourself, To read in a Flare: Knowing that relapses can lead to depression, some people write a reassuring letter themselves, which they can read while in a relapse. For an example, see the article Strategies for Fighting Depression.
Prepare: Having things handy and in place can help reduce the anxiety of a crash and make it easier to weather. For example, you might keep a large supply of food in the house and rearrange your bedroom to have things you need close by.

Ideas to Consider When a Flare Goes On and On….

What should you do when a setback continues much longer than usual? Our medical consultant Dr. Lapp suggests you look for factors that may be responsible for extending the relapse and address any you find.

Sleep often deteriorates during a relapse, so attempts should be made to insure good sleep. Eight to nine hours of sleep nightly are generally recommended, but it may be necessary to sleep longer during relapses.
Anxiety and depression often flare up during a relapse. If untreated they may perpetuate the relapse by interfering with sleep, motivation, pain tolerance, and energy. If positive self-talk is not effective, it may be helpful to increase the dose of an antidepressant medication temporarily.
Relapses can be caused or lengthened by other medical problems. Infections such as recurrent bronchitis. cystitis, infected teeth or abscesses can both trigger and perpetuate relapses; hidden infection such as a dental abscess can perpetuate symptoms; and in endemic areas persisting infections such as Lyme Disease can be the cause.
A good medical examination and some laboratory studies can identify infections as well as medical problems such as thyroid abnormalities and hypoadrenalism.
Allergies, either seasonal (hay fever) or situational (new pet in the house), may be an aggravating factor, and hormonal changes such as menopause have far reaching effects on sleep, joint discomfort, and neuroendocrine imbalances.
Finally, medications can contribute to relapses. Failure to take prescribed medications can worsen symptoms. Also, drug interactions may create problems. If you suspect medications could be a cause of symptoms, review them with your doctor and eliminate everything that is non-essential.

2) Spotting 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

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.

The benefits of responding to warning signs are not limited to ME/CFS and FM. One person reported teaching herself to recognize the warning signs of a migraine attack and, by making immediate use of relaxation techniques, was able to decrease the intensity of migraines or even prevent them.

3) Managing Relapse Triggers

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. The first four are the causes mentioning most frequently. (Some people remember the top three using the acronym SOS: Sleep problems, Overactivity, and Stress.)

Overactivity: Living outside the energy envelope is the most common cause of intense symptoms via the cycle of push and crash. The antidote: pacing. Keeping to a daily routine in which you live consistently within your limits reduces the frequency and severity of relapses.
Poor Sleep: Non-restorative sleep, the second most frequently mentioned relapse trigger, can intensify symptoms and precipitate a vicious cycle in which symptoms and poor sleep reinforce one another. The solution: address sleep problems by improving sleep habits, using medications and treating sleep disorders.
Stress: ME/CFS and fibromyalgia are very stress-sensitive, so minimizing stress can prevent relapses. Stressors include ongoing symptoms, isolation, financial problems, and conflicted relationships. Reduce stress by a combination of the use of stress reduction strategies and avoidance of stressful circumstances.
Sensory Overload: If you are sensitive to light, noise or crowds, you may experience intensified syptoms in situations of sensory overload, such as crowded or noisy places. One common solution is avoidance. For example, get together with one or a few people rather than a large group. For more, see the article Sensory Overload: Sources and Strategies
Travel and Other Special Events: Special events, like a vacation, a wedding, family visits or the holidays, often trigger rleapses. Non-routine events require more energy than everyday life. The solution: reduced activity level and planning ahead using the strategies outlined in the previous article.
Other Illnesses: Coming down with an acute illness or having multiple chronic illnesses can reduce energy and worsen symptoms. You can reduce flares by treating other conditions and acknowledging that they intensify symptoms.
Stressful Relationships: Interactions with people who are negative,demanding or hyperactive can be a source of stress. Responses include talking with the person to redefine the relationship, limiting contact, getting professional help and ending the relation.

4) 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 strategies described below:

Pace Yourself: Pacing is 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 short activity periods, shifting among different types of activities, and living according to a schedule. For details, see the earlier articles in this series.
Use Routines: 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.
Take Scheduled Rests: Scheduled rests, done on a regular basis, can prevent relapses. Also, taking extra rest before, during and after special events or after a secondary illness dcan help ou avoid setbacks or limit their severity.
Use Logging & Record Keeping: Having a health log can reduce relapses by providing a detailed understanding of your limits; by holding you accountable and by providing motivation.
Make Mental Adjustments: Many of the coping coping techniques that help limit relapses require new habits and behaviors, but their foundation lies in adjusting our expectations to fit within our limits. One person in our program said, “I’ve had to retrain myself from saying ‘I work ‘til done’ to ‘I stop when tired’.”
Listen to Your Body: There is a strong temptation to respond to the onset of symptoms by “pushing through.” A different approach, listening to the body’s signals, can prevent problems. As someone in the self-help program said, "I have become aware of the warning signs that my body sends me when I'm doing too much and I am learning to stop as soon as symptoms appear."
Be Assertive: Standing up for yourself can help you meet your needs, reduce stress and thereby prevent relapses. One person said, “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.” For an assertiveness success story, see the article Pacing and Assertiveness.
Embrace Solitude: Time by yourself can reduce stress and allow for recharging of batteries. In the words of one person in our program, “Solitude helps me balance everything out. 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.”
Manage Stress: ME/CFS and fibro increase peoples' stress and make them more sensitive to stress. It's usually helpful to use multiple strategies to manage it. A typical stress management plan might include a daily relaxation procedure, daily walks, taking regular rest breaks daily, having pleasurable activities every day and living by a schedule.