Research on ME/CFS and Pregnancy?

RebeccaRe

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My fiance and I have been talking about having children. I suppose I'm crazy, but even with my fatigue I really want to have kids and be a mom. But I have a lot of concerns, and I don't know if there's any good research out there on this topic. I would love to hear your experiences, or if you have seen any research in this area.

I guess my first concern would be how a pregnancy would impact a mother with ME/CFS physically. And would any ill effects persist long afterward?

Another concern is miscarriage. I don't know much, but I feel like someone with autoimmune issues would be at higher risk?

And another concern is if a mother being sick would physically affect a baby as it developed? I remember seeing an article at some point about how there seemed to be a correlation between mothers who had the flu during pregnancy and autism. Would the chronic inflammation of ME/CFS in a mother also put a child at higher risk for developmental disabilities?

Thanks!
Rebecca
 

soti

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Little research on mecfs x little research on pregnancy = hardly any research on me/cfs in pregnancy. I bet you found the usual stuff from googling me/cfs pregnancy (various clinicians' experiences). My own experience: more tachycardia/intense malaise, including during labor and just after, but baby was fine. I quickly returned to (my) normal, modulo sleep disturbances. Get someone to stay with you and the baby the first few nights so you can sleep a little bit.
 

JeanneD

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My fiance and I have been talking about having children. I suppose I'm crazy, but even with my fatigue I really want to have kids and be a mom. But I have a lot of concerns, and I don't know if there's any good research out there on this topic. I would love to hear your experiences, or if you have seen any research in this area.

I guess my first concern would be how a pregnancy would impact a mother with ME/CFS physically. And would any ill effects persist long afterward?

Another concern is miscarriage. I don't know much, but I feel like someone with autoimmune issues would be at higher risk?

And another concern is if a mother being sick would physically affect a baby as it developed? I remember seeing an article at some point about how there seemed to be a correlation between mothers who had the flu during pregnancy and autism. Would the chronic inflammation of ME/CFS in a mother also put a child at higher risk for developmental disabilities?

Thanks!
Rebecca
I suspect this would largely depend on the nature and/or symptoms of your particular flavor of ME. I have heard stories of PWME with autoimmunity feeling much better during pregnancy, although their usual ME symptoms returned shortly after the birth. I have heard of PWME with more dysautonomia feeling much worse. I would be concerned about PWME who seem to have chronic infections which might impact the baby's development. Active CMV in the mother is well-known to cause severe birth defects in the child, for example. And of course you would need to consult with your doctor about any meds you are taking for ME symptoms and their affect on a possible pregnancy.

It is also possible that the degree of illness (mild/moderate/severe) might make a difference. It would certainly greatly affect the mother's ability to care for the infant.

I wish there were more information on ME and pregnancy because I have a married daughter of child-bearing age with ME. She is currently mild, at 90-95%, with only a few symptoms, but how would a pregnancy affect that, if at all? We hope it won't be a problem when the time comes, but....

Her decision, which I think is wise, is to continue to see her ME specialist every year even though her ME is quite mild now, in order to remain a patient and to stay current on how her illness is changing over time. That way she has a history with an ME specialist who knows her condition well and can help her assess what issues she might have and help her navigate whatever obstacles arise during a pregnancy with ME.

One thing she is paying careful attention to, even though a planned pregnancy is not in her near future, is folate. She has the MTHFR mutation, as many PWME do. That can lead to folate deficiency unless it is carefully and concientiously managed. A folate deficiency during the very early stages of pregnancy (even before you know you are pregnant, I think) can cause neurological abnormalities in the baby of which spina bifida is the most common.

This all sounds very grim when I read it over, but I don't think ME is necessarily a problem with a pregnancy. However, PWME do need to be aware of, and deal with, a greater number of factors than most women do.

Many people are not aware that a number of ME specialists only need to see you in person once a year and can do phone appointments in between. I suggest you consider that if at all possible, even if it requires significant travel, you see a good ME specialist before you get pregnant. They will do some testing to check for things you might want to address before pregnancy, such as folate deficiencies, infections, or autoimmunity. Then you will have someone who understands ME and the current state of your health who you can call for guidance during your pregnancy. At the very least it will give you peace of mind that someone knowledgeable is available and you don't have to try to figure out everything on your own (worrying the whole time) or guess at what might or might not be good for your baby.
 

Hip

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I guess my first concern would be how a pregnancy would impact a mother with ME/CFS physically. And would any ill effects persist long afterward?
Surprisingly, it is not unusual for ME/CFS patients to feel much better during pregnancy. This may be due to the specific hormonal conditions of pregnancy, which involve increases in estriol and progesterone. During pregnancy, progesterone blood levels increase by a factor of 4, and estriol blood levels increase by a factor of 1000. Ref. 1
 
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Lipac

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My fiance and I have been talking about having children. I suppose I'm crazy, but even with my fatigue I really want to have kids and be a mom. But I have a lot of concerns, and I don't know if there's any good research out there on this topic. I would love to hear your experiences, or if you have seen any research in this area.

I guess my first concern would be how a pregnancy would impact a mother with ME/CFS physically. And would any ill effects persist long afterward?

Another concern is miscarriage. I don't know much, but I feel like someone with autoimmune issues would be at higher risk?

And another concern is if a mother being sick would physically affect a baby as it developed? I remember seeing an article at some point about how there seemed to be a correlation between mothers who had the flu during pregnancy and autism. Would the chronic inflammation of ME/CFS in a mother also put a child at higher risk for developmental disabilities?

Thanks!
Rebecca
@RebeccaRe All I can add his my experience. ( Btw, before I start, I turned out to have had lifelong Lyme disease and EBV since age 4, positive CMV probably from patients. Had all the viruses as a child including both types of measles and chicken pox. My baby was perfect)

I had CFS before it was named, so I just thought I had a sleep disorder.

I got pregnant at 40, was thrilled since I'd given up;, but had zero support and was in the middle of planning to escape a scary verbally ABUSIVE sociopathic husband.

I can tell you, the baby was great.
I stopped sleeping after her birth- 2-3 hrs night the first year, and not working.

I got sick when she was two. I looked for answers but never got many. I had practiced medicine.
She's 19, and has only brief experiences of me being well.

Her dad divorced me when she was ten, got custody only because I couldn't work outside the home ( and he knew the judge where this was common).

If you trust your partner to stick with you if you aren't able to be like other moms, and you have built in caretakers ( sisters and grandmas) or can afford a nanny, it might be worth the trade off.

Being a parent is sacrifice. In my case, I sacrificed my health , career and eventually home.

So, look around you- will those people be there in 3,5,10,15 years if you get worse and never better?

The joy of having my daughter is profound.
The pain of all we both missed by my illness is also profound.

I had a " perfect" kid- she ate well, slept well, no colic, no tantrums, no learning problems, etc etc. If she'd had any special needs, we'd never have made it.

The immune system gets suppressed in pregnancy.
It was enough to reactivate what was fairly well controlled before.
The lack of sleep afterward was devastating.
That's just a given with small kids. Almost all new parents look exhausted.
Can you endure that?
I wasn't obviously ill or disabled when I got pregnant.

My daughter is 19 now, taking Jr and Sr Uni Math in her second year, and doing research.
She went to Community College instead of 10-12 grade.
Very intuitive, creative, high iq.
She paints, dances ballet, swims, etc.
She's beautiful too.
An amazing creature.

But my illness and her father's response to it, ( and the loss of our " other moms with kids" friends, as I got worse) has left her soul scarred; and she's been in therapy and on antidepressants from age 12.

We haven't lived together since she was 10-
Something I never imagined.

We haven't lived in the same state since she was 15- nothing I ever considered.

It breaks my heart.
Just make sure if you do, the people around you are as committed to you and your children as you are.

Not many men want a sick wife.
The ones who walked away from one are EVERYWHERE on the " Over 50" Dating Sites.
 
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RebeccaRe

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My own experience: more tachycardia/intense malaise, including during labor and just after, but baby was fine.
Thank you for sharing your experience!

Her decision, which I think is wise, is to continue to see her ME specialist every year even though her ME is quite mild now, in order to remain a patient and to stay current on how her illness is changing over time. That way she has a history with an ME specialist who knows her condition well and can help her assess what issues she might have and help her navigate whatever obstacles arise during a pregnancy with ME.
You do have a smart daughter! Unfortunately I don't have an ME specialist I can see. I stopped seeing my regular rheumatologist after years of nothing but getting lectures about increasing my exercise. I did see one other rheumatologist after that who was nice, but I didn't want to continue seeing her regularly as there wasn't really anything she could do for me. Maybe I'll reestablish a relationship. And thank you for the information about folate--I didn't know that low folate can be an issue for people with ME/CFS.

Thank you so much for these excellent sources of information! The second source in particular has a lot of links to research that I'll look at more closely when my brain's working a little better than it is today.

All I can add his my experience
Thank you so much for your honesty in sharing your experience. I'm sorry that the already difficult experience of being ill was exacerbated by your husband's actions. But it sounds like you have an amazing daughter!

I have had a lot of difficult and honest conversations with my fiance about fatigue, children, and fatigue and children. Since he has only ever known me as a sick person (I've been sick for the past 10 years, we've been together for almost 3 years, and living together for 1), he does have a better idea of what he's signing up for than your husband did. I've made it clear to him what my limitations are, and that if he can't handle my life and my limitations then it's better to end things now than later. So far he seems to be in it for the long haul (which is why he's my fiance), although I know that adding a child to the mix will definitely make life quite a bit more difficult. We do also have a support network in the area--his parents, his siblings, my brother.

There are days when I'm not sure if I'm capable of raising a child. But the pull to have a child is so strong. It's hard. But for now I wanted to know if I was even capable of having a child. Based on what I've seen here, it seems like the answer is 'probably.'
 

i-lava-u

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@RebeccaRe Like others, i can only share my own experience. This illness, and it's course is different for everyone.

I became ill at 17. Married at 22. First baby at 25. Second at 28. My ME has continually worsened over time and I am only out of bed 1-2 hours a day currently. Luckily, my kids are now 15 and 12 so they are a lot more independent and my husband is understanding and supportive

-First pregnancy, ME worse, got pre-eclampsia around 7 months forward. Induced at hospital, followed by 26 hours of labor, 3 hours of pushing, then an emergency c-section, then allergic reactions to pain medications. Husband and I just moved to another state, so no family support.

Baby was very fussy, as in would not sleep longer than 10-20 minutes here and there, only after breastfeeding and only if I was holding him the whole time (ate every 1-2 hours around the clock; refused bottle from me or husband)

He cried every night 5-8 PM (yes, 3 hours) doctors could not figure out, no colic, allergies, reflux etc. this lasted till he was about 6 months old. We literally had to rock him in the rocking chair or pace around apartment while bouncing him up and down and singing to him, or else his crying turned into screaming and sssooooo much worse (our neighbors did not appreciate this and would pound on the apartment wall and yell to make baby stop crying). Exhausting barely describes this!

When he was 10 1/2 months old he finally slept 5 hours straight at night.

During toddler years, still would not nap well, lucky if he had 1 hour nap during the day. By age 4, we gave up on naps altogether for him.

-Second pregnancy, worse ME again, severe morning sickness (more like all day sickness), pre-eclampsia again around 7 months, planned c-section this time, medication reactions again.

This baby slept 5-6 hours, at night, from the first day he was born! He took naps all the the time, mostly woke up just to eat, then back to sleep. His older brother could be running around, being noisy, bump into his bassinet and not a peep. Could sleep through anything.

He loved naps as a toddler and would take 2 , 2 hour naps everyday!
____________

So, as you can see, I had polar opposite experiences with each child. You never know how pregnancy will be for you until you are pregnant. But any chronic illness certainly complicates things.

The thing about ME. is how much it can fluctuate day to day, month to month, year to year. For me, it has been progressively worse, others stay much the same, some get a bit better.

Babies are hard, but so are toddlers, pre-teens and teen, each in a different way. They have bad dreams, wet the bed and get sick. Once you become a parent, it is forever!

Parenting in general is hard. Parenting with ME takes it to a whole new level

Personally, I would not trade being a mom for anything. This may not be the right choice for everyone, but it was the right choice for me. :)
 

i-lava-u

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BTW, the "crying for 3 hours nightly" with my first baby, does have a name...I just did not know it at the time
It's called Purple Crying:

 

i-lava-u

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@RebeccaRe Thinking of you today in regards to this thread. These are some good videos about personal experiences of parenting with ME/CFS, if you are interested.

BTW, based on your posts on this forum, I can see you are a kind, compassionate person and if you choose to have children, I think they would be lucky to have you as a mother :)

Parenting with a chronic illness

Exploding the myths of chronic illness in family life

Living with a partner who has ME/CFS....when your wife is ill

Living with a partner who has ME/CFS....when your husband is ill


 

Dechi

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My kids were almost adults when I got ME, so I don’t speak from personal experience.

But I have friends from support groups who have babies and young kids. Many struggle with caring for their babies and children and the husbands have to do most of the work, if not all, depending on their severity level.

I know one in particular had to send her young baby to daycare during the day while her husband was working, because she could no longer care for her. It broke her heart but it came to a point where she had to.

I’m not saying your situation would be the same, but since you ask, this is something to think about as well. I certainly hope the best will happen in your case.
 

kelly8

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Hi @RebeccaRe ,
Like everyone else here has said i can only give you my experience as i don't think there is much info out there. I'm still not officially diagnosed with cfs (it has been mentioned in my Drs notes but no one has had the cajones to tell me...).

I was always having immune issues most of my life but it was always considered "mild". I got sick in 2008 and that illness brought on the severe fatigue. I never was bed bound i was just miserable and it kept getting worse and worse. My husband and i got married in 2013. I miscarried in 2013. I had my son in 2015.

My hubby noticed my slowing down but we didn't know what was going on until i started looking into everything when i got a giant rash and allergy symptoms in 2011 (beginning of MCAS). The miscarriage was hard for me. But i did read a lot about that happening with autoimmune issues and i certainly was not healthy at the time. I had my son in 2015.

I felt a lot better during the pregnancy. This was after i figured out that the prenatals were causing my nausea. All of them. It was awful. I have since found out that i have trouble with folic acid and that was what was making me sick. So i stopped taking them and suddenly i felt much better.

I also got the flu during my pregnancy and was fine. I just forced myself to drink as much liquids as i could get in and rested a lot. I did have a lot of trouble breathing on a trip to Colorado and i technically went into labor two months before my son was due. I had never heard of that before but the nurses confirmed it at the hospital. I apparently was doing too much (even though i wasn't really doing anything) and when i took my leave early and only rested this subsided.

I relapsed into a cfs state about 6-7 months after my son was born. It was terrible. I think it may have had to do with him starting to wean a bit. The sound machine was the worst aspect of this because i have issues with certain sounds. I would literally crawl to his crib when he was crying and just talk to him laying on the floor. I had trouble lifting him. I couldn't open anything because my hands lost strength. I was wiped from just walking a couple steps. My hubby would unscrew all the jars for dinner and bring the laundry downstairs because i could no longer walk the stairs. I also got what i think is viral ulcers in my mouth weekly. They were so painful. But this is part of my illness i just was having it so frequently during this time.

So my cfs got worse. Eventually it did get a bit better but this was after doing methylation and removing all toxins from my environment. I still have problems meeting up with other moms and feeling like a normal mom. I think my son misses out on some things but he also gets to do a lot of things with me that other kids don't get to do. I've found a way to make our relationship special even though i can't do all those other things.

He is perfect, smart and beautiful. I wouldn't trade it for the world. My hubby and i are thinking we might want another but this time I'm seeing a specialist who deals with this before. I'm also planning on utilizing my family more this time as well.

One last thought.... My house is never clean i just don't have the energy. And I've had to take many short cuts to keep our house functioning with a toddler and a chronically ill momma. I hope this info helps you. It's a decision only you can make.
 
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Hi Rebecca,
I have not been able to find a lot of research on pregnancy and CFS either. Personally I have been sick since a bad case of mono in 2005, I also developed POTS. I had a very early miscarriage before getting pregnant with my first child. With my pregnancy, I had very severe morning sickness (which has been linked to POTS), increased POTS symptoms, and extreme fatigue. I went overdue by almost 2 weeks, but was able to have a completely natural, unmedicated birth. My baby was very healthy, is now almost 5 and is extremely healthy, bright, and high-energy. I breastfed for 6 months, although it was extremely difficult. I am actually pregnant again now (30 weeks). This pregnancy has been even harder than the first, with extreme fatigue and POTS symptoms. However, baby is measuring on track and somehow I am still classed as a "low risk" pregnancy....
The first pregnancy, birth, and post-partum period were very hard on me and I feel probably set me back in terms of recovery. We had have full-time help to help with my baby because I was too fatigued. I also developed severe post-partrum depression which took awhile to recover from. My partner had to really step up in many areas in terms of childcare. We had a strong support system as well.
All that being said, my child is the best part of my life. I always wanted to be a mother and despite this illness, he is bright, happy, and well-adjusted. CFS has taken so much from me and I did not want to let it steal this part of my life as well. I hope that I will be able to improve and maybe a cure will even come in a few years, you never know what the future will hold. It's a very personal decision, I would just make sure you have a lot of support in place and be aware that you may need full-time help caring for your child day to day.
 

sb4

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Wondering if the women who got transiently better during pregnancy have tried experimenting with the hormones that are higher during pregnancy to achieve the same effect. Ones that spring to mind and that hip mentioned are estriol, progesterone, and HCG, first 2 are OTC.
 
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Wondering if the women who got transiently better during pregnancy have tried experimenting with the hormones that are higher during pregnancy to achieve the same effect. Ones that spring to mind and that hip mentioned are estriol, progesterone, and HCG, first 2 are OTC.
Well, I was the opposite.. even worse during pregnancy. I did try progesterone cream and felt extremely bad. I also got really bad while taking birth control pills (may have even partially triggered this). Strangely, I feel somewhat better while nursing... (not a lot, but I see a difference).
It's an interesting thought for those that felt better. My only caveat is that I felt horrific on progesterone cream to the point that it started causing horrible depressive thoughts. Really scary.
 

sb4

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@Texas83 Hmmm... it is interesting how some get better and some worse. Perhaps your hormones went a different way to others although who knows. I only brought this up because I stumbled upon a study showing estriol use helped MS and some other people (non ME males) have been reporting improvements with it. I think it is messing with immunity some how. Might try estriol at some point but I am very wary being male so I was hoping some women would pipe up who tried it.