Dealing with Relapses and Flares

Relapse is an inevitable part of CFS and FM. Just as many of the symptoms come and go in a cyclical pattern, relapse tends to come and go also. When relapses are short lived, perhaps 1-3 days, then we generally refer to them as a flare. A flare is frequently triggered by an acute stress (for example, a death in the family) or overexertion. A relapse, however, may last days, weeks, or months, depending on its severity, the cause, and how it is managed. When a flare occurs, one is advised to review recent activities and events (such as travel, illness, or special activities) that may have triggered this temporary downturn. On the other hand, I and many patients have agonizingly searched for the cause for relapses only to conclude that the majority occur spontaneously. You just have to expect that no matter how hard you try or how “good” you are, relapses are going to occur. Thus, the first step in handling a relapse, therefore, is to accept, then deal with it.

When relapses are prolonged, they become particularly onerous and discouraging. Since most relapses will start to improve with rest and extra self-care, one should look for triggers and perpetuating factors that might be prolonging the relapse. Perhaps the most common perpetuator is a lack of sleep. It is not unusual for sleep to deteriorate during a relapse, and attempts must be made to insure a regular, scheduled sleep. Eight to nine hours of sleep nightly are generally recommended, but it may be necessary to sleep longer during down times”. Also, anxiety and depression always flare up during a relapse, and if untreated they may perpetuate the relapse by interfering with sleep, motivation, pain tolerance, and energy. It may be helpful to temporarily increase an antidepressant dose during such periods. Infections such as recurrent bronchitis or cystitis can both trigger and perpetuate “down times”, 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. Rarely, the concurrent development of another disorder such as lupus, diabetes, or rheumatoid arthritis can be the perpetuating factor. Allergies, either seasonally (hay fever) or situationally (new pet in the house) may be an aggravating factor, and hormonal changes such as menstruation and menopause have far reaching effects with respect to sleep, joint discomfort, and neuroendocrine imbalances.

Finally, have you failed to take prescribed medications as directed? Some medications accumulate in the body over time, new medications may interact with previous medications or supplements, and many persons with CFS or FM end up taking a large number of medications, each of which has been prescribed for a different symptoms of the disorder. If medications could be problematic, review them with your doctor and eliminate everything that is non-essential.

When flares and relapses occur, the first step is to accept that “stuff happens”, then get down to the business of dealing with it. Rest is most important, and you will have to pace yourself more carefully a little activity followed by supine rest in a quiet, non-distracting place. Patients are discouraged from staying in bed, however, because this disrupts the natural sleep pattern and rapidly leads to deconditioning. The objective is to get up, rest frequently on a sofa or lounger, but try to maintain some light activities, stretches, and relaxation techniques; the goal is to return to your daily routine as soon as possible. Delay, defer, or delegate as many tasks and chores as you can. This is the time to swallow your pride — humbly and honestly ask others to help you out. From a medical standpoint, drink lots of fluids and supplement with salt (if blood pressure has declined during this relapse), take medications faithfully, and consider the use of high dose B12 or a short course of Kutapressin to “get over the hump”. Tub soaks and pool therapy are particularly helpful during periods of relapse.

Perhaps the most important question is “how do I prevent relapses?” While most relapses are spontaneous and unprovoked, I do believe that persons with CFS or FM can reduce the number and severity of flares through observation and preparation. The first is to identify any recurring triggers such as stresses, exertion, or events that predictably drag you down. This is done by journaling and careful review of the events leading up to each flare or relapse. It goes without saying that if you stay within your “envelope of energy” the likelihood of relapse is slim. This is best accomplished by following a daily routine, using common sense to reduce your activity slightly on “bad days,” and increase your activity modestly on “good days”. It is axiomatic that you must insure adequate sleep and take regular exercise.