I am however a bit disappointed though that some of the other things they have said would happen are not quite as promising as they seem. I have been told that 1/3 of pregnant women improve with pregnancy, 1/3 stay the same and 1/3 can get worse. I am now finding that is true but only in the context of being pregnant and does not take into consideration how these women felt postpartum (after the baby is born). It has been found that 1/3 to 1/2 of these women were worse after the baby was born with only 1/5 feeling they improved.
Here is a really good article for further reading (Quotes below) - Chronic Fatigue: Implications for Women and Their Health Care Providers: Chronic Fatigue Syndrome During Pregnancy, Childbirth, and the Postpartum Period: http://www.medscape.com/viewarticle/576986_6
The most comprehensive study to date investigating the reciprocal relationship between CFS and pregnancy was published by Schacterle and Komaroff in 2004. 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." 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.
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.
Postpartum Recovery with Chronic Fatigue SyndromeEven a factor of 10% can make a difference when deciding on whether to have a child with ME/CFS. Don't get me wrong, I am hoping to be one of the 20% that report improvement, but getting the full story up front would be good rather than the rose coloured glasses.
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.
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.
1.Schacterle R, Komaroff A. A comparison of pregnancies that occur before and after the onset of chronic fatigue syndrome. Arch Intern Med. 2004;164:401-404.
48.Lapp C. Childbearing and CFIDS: Making a difficult decision. The CFIDS Chronicle. 2000;Summer.
I keep getting the impression that you have to research every part of this illness in order to understand what the position is rather than just rely on the specialists.
It is good that I finally have the strength to do this but most days I cannot read let alone analyse papers. I am also very lucky to have such a supporting husband and family and that because of my further research understand and can be there for me in worse case scenarios.