Chronic Fatigue Syndrome: Implications for Women and Their Health Care Providers During the Childbearing Years

Peggy Rosati Allen, CNM, WHNP, MS, LCCE

Disclosures

J Midwifery Womens Health. 2008;53(4):289-301. 

In This Article

Chronic Fatigue Syndrome During Pregnancy, Childbirth, and the Postpartum Period

 

"We still have no definitive idea of the risks involved in pregnancy for women with chronic fatigue syndrome. The suggestion that it's okay to be pregnant is not yet substantiated by science. I will not tell my chronic fatigue syndrome patients to postpone pregnancy. But I must tell them that we don't know enough about the dangers."

— R.C.W. Vermeulen, MD, PhD, endocrinologist and gynecologist at the Chronic Fatigue Syndrome Research Center in Amsterdam [47]

Minimal research addresses reproductive issues in women with CFS.[47] Whether or not the course of CFS changes during or as a result of pregnancy, or whether or not the experience of pregnancy and childbirth is different for women with CFS, remains mostly unexplored.[1,47] Current pregnancy-related recommendations are mostly based on the opinions and observations of CFS experts[47] and will likely remain anecdotal until more interest in reproductive issues in women with CFS is generated among women's health researchers and clinicians. Nevertheless, women of childbearing age with CFS are commonly concerned about the potential consequences of pregnancy on their health and the health of their children.[1] These issues are very relevant to women's health care providers.

Women with CFS and their providers need information and guidelines for care during pregnancy, childbirth, and the postpartum period, yet the scant scientific evidence currently available is integrated with expert opinion to provide the following summaries. Expert opinion is shared from CFS experts Dr. Nancy Klimas (personal communication, May 5, 2007), Dr. Lucinda Bateman (personal communication, June 14, 2007), and Dr. Charles Lapp.[48]

Effects of Pregnancy on Chronic Fatigue Syndrome

 

M.T. is a 27-year-old married gravida 2 para 1001 who established care with the author at 12 weeks' gestation. She has been ill with CFS since the age of 18. She described her experience of normal pregnancy fatigue compared to fatigue with CFS as follows: "If it's normal pregnancy fatigue, I might feel too tired to get up and brush my teeth, but I can make myself do it. If I'm fatigued from CFS, my body feels heavy like I can't move and I really cannot make myself get up to brush my teeth." Throughout the current pregnancy, she described less severe relapses in terms of frequency and duration as compared to her pre-pregnancy norm, but never achieved the feeling of complete wellness that she had experienced with her first pregnancy.

The most comprehensive study to date investigating the reciprocal relationship between CFS and pregnancy was published by Schacterle and Komaroff in 2004.[1] Through a retrospective self-reported questionnaire, the investigators compared outcomes for 86 women with a cumulative total of 252 pregnancies that occurred before or after the onset of CFS. In "many cases," pregnancy predated the time of data collection "by several years."[1] The investigators found that 41% of women experienced no change in CFS symptoms during pregnancy, 30% noted improvement of symptoms, and 29% experienced a worsening of CFS symptoms during pregnancy.[1] The researchers were unable to identify factors that may influence whether an individual woman with CFS will improve or worsen during pregnancy.

CFS experts Nancy Klimas, Lucinda Bateman, and Charles Lapp report slightly different findings in clinical practice. Their reports are based on relatively small numbers of women with CFS whom they have followed throughout pregnancy, accentuating the current scarcity of evidence-based information. In the approximately 20 women Dr. Klimas followed throughout pregnancy, improvement in CFS symptoms during pregnancy was almost universal, in some cases to the point of total remission, despite typically more severe early pregnancy nausea and vomiting requiring antiemetics used during chemotherapy. In Dr. Bateman's clinical observations of the approximately 6 women she followed throughout pregnancy, women commonly report feeling less ill with CFS symptoms during pregnancy despite experiencing typical pregnancy discomforts. Dr. Lapp reports that 25 out of 27 patients in his practice who became pregnant while they had CFS felt better during pregnancy.[48] Dr. Lapp proposes that lessening in severity of CFS symptoms during pregnancy may be related to immune system and hormonal changes of pregnancy.[48]

Effects of Chronic Fatigue Syndrome on Pregnancy

The presence of illness with CFS impacted the decision of whether or not to bear children in 21% of Schacterle and Komaroff's survey respondents, in either choosing not to parent or not to have additional children.[1] The most common reason for the decision to remain childless or limit family size was concern that disability caused by CFS would impair parenting ability.[1]

CFS may adversely affect fertility, although research findings addressing this area are very preliminary.[47,49] Polycystic ovarian syndrome and related anovulatory cycles are reported more often in women with CFS compared to controls.[49] Additionally, dysmenorrhea is almost universal in women with CFS.[47] Dysmenorrhea is a common symptom of endometriosis and preliminary studies are indicating that endometriosis, with a well-known potential for adverse effects on fertility, may be more common in women with CFS.[47,49]

Schacterle and Komaroff found that the rate of first trimester spontaneous miscarriage was 4 times higher than normal in women with CFS.[1] The authors acknowledge that this higher rate may be caused by confounding variables and that further investigation is needed to validate this finding. The authors found no significant difference in the rate of other pregnancy complications, such as preeclampsia, gestational diabetes, preterm labor, or low birth weight infants, in women who became pregnant after the onset of CFS.[1]

While there is compelling scientific evidence for a genetic predisposition to CFS, there is no evidence that a pregnant woman can directly transmit CFS to her fetus.[47] Schacterle and Komaroff found that developmental delays were reported more often in offspring of women who became pregnant after as compared to before the onset of CFS.[1] The hypocortisolism that occurs with CFS and the role of maternal cortisol secretion in fetal growth and development has been hypothesized as an explanation for this increased rate of developmental delays,[50] although Schacterle and Komaroff are careful to note that their finding needs validation by larger, prospective studies with control populations.[1]

Reciprocal Effects of Chronic Fatigue Syndrome and Labor and Birth

There are no scientific studies that directly address whether CFS directly affects labor and birth, or whether labor and birth affect CFS. In the absence of evidence-based reviews, one could infer from the well-documented abnormal physiologic response to stress in persons with CFS that a prolonged and more painful labor increases risk of relapse for a woman with CFS, an inference supported by the opinion of all three CFS experts cited in this paper.

The importance of adequate hydration during labor for normal progress and overall maternal and fetal well-being may be amplified in the laboring woman with CFS. According to Dr. Bateman, stress and exhaustion cause the autonomic nervous system in a CFS patient to become more dysregulated and "almost chaotic," precipitating the likelihood of relapse. Bateman advises measures like maintaining vascular volume with intravenous fluid and pain and stress reduction techniques during childbirth to help prevent or moderate this response. The use of epidural anesthesia may be considered to conserve energy and prevent relapse, especially in the case of prolonged labor.[48] A case report of a woman with severe CFS whose 9-hour labor culminated in a low forceps delivery because of maternal exhaustion is noted in the British literature[51]; this intervention is used with declining frequency in the United States.

Postpartum Recovery with Chronic Fatigue Syndrome

Again, there is no scientific evidence that comprehensively defines the relationship between CFS and a woman's experience during the postpartum period. Schacterle and Komaroff found that 50% of patients surveyed reported worsening of CFS symptoms, 30% reported no change, and 20% reported improvement during the postpartum period.[1]

Dr. Klimas observed that her patients with CFS typically do well postpartum until 3 to 6 months after delivery, at which time a relapse in CFS symptoms typically occurs, and is oftentimes severe. Dr. Klimas hypothesizes that relapse at this time may be related to physiologic reduction in red cell mass and blood volume that increased in pregnancy, and/or to the cumulative stress of interrupted sleep and demands of caring for an infant. Dr. Lapp reports a similar incidence in worsening of CFS symptoms in one-third of his patients who had given birth.[48]

Dr. Bateman considers the potential for a severe postpartum CFS relapse to be the biggest issue to address with prospective parents. Similar to Dr. Klimas, Dr. Bateman hypothesizes that hormonal changes combined with the physical and emotional demands of caring for an infant, particularly nocturnal sleep disruption, magnify the risk of relapse during the postpartum period for women with CFS.

The rate of postpartum CFS relapse in mothers who are breastfeeding as compared to bottle-feeding has not been examined, nor have there been any studies to explore any influence CFS may have on initiation and maintenance of milk supply. Considering that CFS impacts multiple body systems and that pituitary function has been implicated,[47,49] lactation effects of CFS seem possible. Lapp raises the question of whether or not a woman with the subset of post-infective viral-induced CFS can transmit the offending virus to her infant through breast milk. Although this possibility seems remote, it warrants scientific inquiry.[48]

 

M.T. had a normal spontaneous vaginal hospital-based delivery at term after a relatively rapid 5.5-hour labor using hypnobirthing techniques, with her husband and midwife in attendance. M.T. was able to consume oral fluids throughout labor and requested that intravenous fluids be deferred until after delivery. Immediately thereafter, she was given an intravenous bolus of 1 L of lactated ringers followed by an infusion of normal saline that was arbitrarily continued at 150 mL/hr for the first 6 hours postpartum, at the advice of her chronic fatigue specialist. M.T. was discharged home with her infant at 36 hours postpartum after an uncomplicated hospital stay. M.T. breastfed her infant until 2 weeks postpartum, at which time she weaned because of a concern that the rigors of nighttime feedings would trigger a CFS relapse. After weaning, she resumed taking the medications fludrocortisone and midodrine that she had stopped with the pregnancy. (During the first 2 years of illness with CFS, M.T. was diagnosed with orthostatic intolerance after a positive tilt table test revealed an intake BP 110/61 HR 81 and after 34 minutes, presyncopal symptoms with an upright BP of 55/45 P77.) By 12 weeks postpartum, M.T. began to experience an increase in chronic fatigue syndrome symptoms, which developed into a severe relapse by 14 weeks postpartum. She retrospectively identified a similar relapse that had occurred at 6 months postpartum following her first birth.

Medications for Chronic Fatigue Syndrome During Pregnancy and Lactation

Women with CFS who become pregnant and breastfeed their infants should be prepared to discontinue some of the medications commonly prescribed for CFS symptom relief. Midodrine (Proamatine; Shire Pharmaceuticals, Wayne, PA), an α-agonist commonly prescribed for women with CFS-related orthostatic intolerance, has not been studied in human pregnancy or lactation.[52,53,54] Midodrine is not recommended, because it has the potential to interfere with uteroplacental circulation, and since it is concentrated in fat cells in breast milk, could potentially cause hypertension in a breastfed infant.[52,53,54] Fludrocortisone (Florinef; Bristol-Myers Squibb, Victoria, Australia), a fluorinated corticosteroid, is also commonly prescribed for CFS-associated neurally mediated hypotension either alone or in combination with midodrine and also has not been studied for use during human pregnancy.[55] However, fludrocortisone is considered theoretically safe during pregnancy because of its similarity to cortisone, which has not been associated with an increased risk of birth defects[55,56] aside from the 3% to 5% background risk of birth defects that can occur with any pregnancy.[57] Fludrocortisone is compatible with breastfeeding in doses of 0.1 to 0.4 mg/day.[53] Other medications commonly used for CFS to treat sleep disturbances, memory, cognition, pain, and mood may or may not be continued safely during pregnancy and lactation and should be addressed on a case by case basis with usual consideration for the risk-to-benefit ratio.

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