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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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CFIDS and Pregnancy

Messages
27
Location
Europe
I don't know if it belongs here, but I didn't know where to put this topic. I would like to ask especially women here with CFIDS, if it is possible to have a baby when you are sick like this. I am 29 years old and I have always wanted kids, but as I am seriously in a bad condition now, I really don't know. If you have any experiences with pregnancy and this disease, please let me know. Thank You
 
Messages
30
Location
Canada
I had my daughter after I'd been ill for 10 yrs already. She's 19 now:) I actually felt better after the first couple of months of pregnancy than I had for years (except for the MCS stuff) and stayed that way until she was about 3 months old. I had older kids who helped out a bit when she was a baby that helped. (I should also mention that i was an "older mom" too).

I've known of others who've had babies too. As they say YMMV -"your mileage may vary" . Not everyone is the same.
 

Snez

Senior Member
Messages
160
Location
Tasmania, Australia
Hi

Sorry that I haven't that much to contribute to your question -no experience in pregnancy and having severe CFS (I had my two daughters before I came down with it). However, I have read stories of several women over at The Prohealth site who have had mixed experiences regarding this. Some have found that they go into remission, others remain the same or are worse. I have a friend who has Lupus and she has gone into a partial remission during each of her pregnancies.

I totally sympathise about wanting children and the special challenges required in carrying them and raising them when struck with this illness. Is there any possibility of getting some strong support system behind you prior to conception? How are you extended family/friends in supporting you at the moment and will you be able to call on them if need be? Is your medical practitioner supportive and can you talk to them about this?

I'm sorry that I can't offer much more but know that you do have a great community here. :)Perhaps someone else may be able to share their experiences with you soon.

Keep well,
Snezana
 

margib

Senior Member
Messages
321
Location
Austin, TX
sorry to respond to this thread so late. i have often wondered how pregnancy affected other women w/ CF. when I got pregnant at age 27, i had been sick for at least a decade, but was experiencing near-remission. my pregnancy put me in almost complete remission. i was not tired (for the most part), even during my 3rd trimester, & it was blissful. i got little sleep w/ a newborn, so i was once again back to exhaustion. luckily, my baby became a good sleeper right away. when i got pregnant the second time, i was already exhausted. i had hyperemesis w/ that pregnancy, which trumped any fatigue. i was lying down, perfectly still so i wouldn't vomit. weirdly, after i gave birth (both my births were very fast & easy, even though my babies were 10-pounders), i was not fatigued for the first few months, as i had been w/ my first baby. perhaps there was another reversal after my hyperemsis pregnancy. i was still exhausted at times, w/ a 3 year old & a newborn, but mostly, not that tired. it did catch up w/ me a few months later. as a side note, i breastfed both babies, tandem nursed (3 year old & newborn), & weaned my 20-month old abruptly when i got very sick in April. rajulko, if you are considering getting pregnant, the only advice i have is to take VERY good care of yourself, as if it is a full-time job. sleep, the best food, the most healthy supplements, fresh air, stretching or walking IF TOLERATED. and if you do become pregnant, of course, feel free to contact me. i was a birth & postpartum doula before i got really sick again. all the best, margaret
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
Athene - I'm so sorry to hear what you went through. It sounds really terrible - I can't imagine how you managed.

There's been a discussion of ME in pregnancy on another thread - linking exacerbation of symptoms to increased progesterone. But some people seem to improve during pregnancy, so that doesn't tie in with this hypothesis.

I first came down with ME when I was in my fourth month of pregnancy. I was bedridden for 3 months but then improved. The birth was fine and I breast fed my daughter (who is now 27 and in good health).

A year later I began to get worse - my then husband didn't believe I was ill and left (my daughter was 15 months and I had a 3 year old son). That was the start of 3 years mostly bedridden.

It seems that pregnancy causes immune suppression, but I don't know if this is linked to the high progesterone. It's probably more complicated than that.

I'm so glad I didn't know what ME was when I was ill when pregnant - I would have been desperately worried.

With very good wishes

Jenny
 

fds66

Senior Member
Messages
231
I had ME for 6 years then had my son who is now 12. I improved in pregnancy. It was temporary though and I'm back to worse now that I was before the pregnancy. Don't have the time or brain power to reply properly at the moment but I will be back. Hope that helps.
 

margib

Senior Member
Messages
321
Location
Austin, TX
Athene, I am so sorry what you went through during your pregnancy. No human should have to suffer so much, especially while expecting a baby. I used to be a birth & postpartum doula, so if you ever need to discuss feelings more about your pregnancy/birth, feel free to PM me. I came down w/ ME sometime between 1990 & 1993 (the age of 15 & 18); still can't be certain when, but I've been sick for certain since 1993. I won't say I went into remission, but my symptoms were mild around 2002, & then I got pregnant in 2003. I was in true remission throughout my 1st pregnancy. Even though I was still exhausted, I became pregnant again about 2 years later (hoping for another remission!), & did not get up for most of the pregnancy. I had nausea/vomiting & was exhausted. Even so, I had another home birth (I have always been fiercely afraid of the hospital). I seemed to have a couple of months of remission postpartum, which I noted to myself as relieving, strange & profound. I also breastfed for about 5 years straight (toddler-nursed & tandem-nursed). I weaned last Spring when I became severely ill. So I have just recently gotten my period back (sorry, boy readers!). It is hard for me to know if my children were headed to XAND, but I did not vaccinate them & they do not eat gluten/casein. My best to you--