Feeling tired while you're pregnant is so common that you'd probably wonder what was going on if you weren't at least occasionally sleepy. But sometimes that drowsiness goes well beyond what's normal and manifests itself as a condition known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Answers about ME/CFS during pregnancy are pretty hard to come by, but the good news is, the majority of women with the condition go on to have a healthy pregnancy and baby.

What is chronic fatigue syndrome?

ME/CFS is a complex chronic condition affecting more than a million American men and women of all ages, though women are two to four times more likely to suffer from it than men. While its dominant symptom is, not surprisingly, fatigue, the illness affects so much more than a person’s state of exhaustion.

What are the signs of chronic fatigue syndrome during pregnancy?

One primary symptom of ME/CFS is fatigue coupled with a greatly lowered ability to do activities that you usually did before the illness. Everyday activities like grocery-shopping or showering may leave a person with ME/CFS bed-bound or unable to do other tasks for hours. Along with unrelenting tiredness, chronic fatigue syndrome can come with other symptoms, including:

  • Post-exertional malaise (PEM), a worsening of symptoms — often described as a "crash" or "relapse" — after physical or mental activity
  • Orthostatic intolerance, a worsening of symptoms while standing or sitting upright, sometime accompanied by light-headedness or vision changes
  • Problems with thinking, including memory lapses and brain fog
  • Sleep problems, including having trouble falling asleep or staying asleep as well as feeling unrested after a full night's sleep
  • Pain, most commonly muscle pains, joint pain and headaches

All of these may come and go, and they could last for weeks, months or even years. The difficulty with ME/CFS is that it’s hard to diagnose (there aren’t any tests for it, and other illnesses can cause similar symptoms), it’s not known what causes it and there’s currently no cure.

How does chronic fatigue syndrome affect pregnancy?

Very little is known about the condition’s impact on pregnancy beyond anecdotal evidence, which suggests that ME/CFS affects different women differently when they're expecting (no big surprise there).

Some moms-to-be with ME/CFS say their symptoms improve during pregnancy, while others say they get worse. Of course, it may be hard to tell, since pregnancy is physically exhausting for all women, even those not dealing with ME/CFS. Being chronically tired isn’t normal during other times of life, but it can be considered normal when you’re expecting, especially during the first and third trimesters.

Still, it’s important not to confuse the fatigue and symptoms of ME/CFS with the typical fatigue of pregnancy. Being tired during pregnancy — even very tired — does not mean you’ve developed ME/CFS, which is characterized by an extreme feeling of exhaustion that limits your ability to function as usual and lasts for six months or longer.

Happily, moms-to-be with ME/CFS don’t have any higher chances of developing pregnancy complications like preeclampsia, gestational diabetes, premature labor or having a low birthweight baby. While some research has shown that women with ME/CFS are slightly more likely to have pregnancy loss, more research is needed to say for sure.

Pregnant people with ME/CFS may also be prone to morning sickness that lasts all day (as opposed to the kind that only strikes when they wake up). The serious form of pregnancy nausea and vomiting called hyperemesis gravidarum is also more common among expectant moms with ME/CFS.

As for handling childbirth if you have ME/CFS, moms with the condition may tire more quickly during labor and may have a longer recovery period post-delivery. Postpartum depression may also be more common among new moms with ME/CFS.

How is chronic fatigue syndrome treated during pregnancy?

If you’re pregnant and received a ME/CFS diagnosis prior to conceiving, it’s important that the doctor who has been caring for your condition knows about your pregnancy and the practitioner you’ve chosen for your prenatal care knows about your ME/CFS.

Together, they will can help you cope with your ME/CFS while nurturing your baby-to-be. Treatments will likely incorporate strategies that have made you feel better in the past, such as activity management (also called pacing). You’ll also need to take a good look at any medications you’ve been taking to make sure they're compatible with pregnancy. Some — like Midodrine — aren’t.

Just remember that the vast majority of women with ME/CFS can and do have healthy pregnancies and healthy babies. Having the support of your family members and some close friends — as well as being under the care of a good medical team — can help you weather the challenges of suffering from ME/CFS during pregnancy.