Anyone else pregnant with ME/CFS?

[MiracleBaby2022]

Would love to hear if there's anyone else out there with ME who's currently pregnant or have experience of having a baby with this illness.

I should add that I'm particularly interested in hearing how your symptoms were during and after pregnancy. My symptoms have massively improved while pregnant, which is amazing - I feel like I'm being able to do some normal things again - but I'm also worried about how I'll be after birth. If my symptoms return as they were it'll be very, very hard looking after the baby...

Bump

I got diagnosed after dc3, and have just had dc4. I think it depends on how well managed it it and obviously you’ll have flare ups. I’m managing ok actually but I am on mat leave which helps. It was the toddler years I struggled with before. During pregnancy I actually felt really good! Just use your normal techniques of coping like pacing etc and don’t take too much on. I don’t do lots of baby groups etc just one a week. Obviously tiredness from lack of sleep is a massive factor but you might get a good sleeper so just take it one step at a time. To be honest you’ll just mana get because you have to! Hopefully you have a supportive partner and family?

*Sorry meant you’ll just manage because you’ll have to

I had it until I got pregnant with DS, it has since resolved completely, though I’m still breastfeeding so I don’t know if that has a hormonal impact? DS is now 2.

My ME has always been significantly affected by both hormones and diet, and I went through FODMAP elimination dirt before I got pregnant, which definitely helped my ME. Nowadays when I get a flare up it's usually because of something I’ve eaten.

Of course, my experiences are my own, so no guarantees! But I hope you have a similar experience to me.

Elimination *diet!

I have fibromyalgia, but sleeping issues/fatigue is a major factor on my pain levels. I was exhausted in early pregnancy, but then was signed off work at 12 weeks due to developing SPD and was unable to stand, walk or drive for long. From that point fibro symptoms improved and felt quite well through pregnancy, despite the mobility issues. I decided to have an elective c-section, as I was concerned about coping with a long labour, particularly not being very mobile. Recovery from surgery was straight forward and pain levels manageable, worse thing was no sleep during my 2 night stay in hospital, partly due to baby being a bit poorly and not being able to have overnight visitors to help. I found my fibro symptoms stayed at the improved level post pregnancy, even now 5 years on. I have flares less frequently, and am on less medication.

Lack of sleep is the hardest thing, I'm unable to nap, and take medication to help me sleep. Thankfully I have a very supportive DH, who did at least half the night feeds, even once he returned to work and I was still off. My parents are also very close by and helped out a lot, and still do. I'm definitely in a much better place health wise, it's tiring, but worth it.

@3to4 interesting that you also felt good during pregnancy. My symptoms are about 75% better I think while I'm pregnant. If I ever got back to scratch again there'd be no way I could look after a child, I couldn't even walk and was bedbound for 3-6 months at first. My symptoms did gradually improve however, but then suddenly skyrocketed once pregnant so I'm really a bit worried as I have no idea what'll happen afterwards. My partner looked after me the whole time I was really ill - for about 2.5 years in total until I was able to do most things myself. So yes he's definitely able to support should things go wrong, but it's a big burden...

@solania oh that's really interesting to hear! My midwife said some women just continue to feel great after birth, but they're in the very small minority. I'm praying I'll be one of them. You might be right about the breastfeeding though, it could be that. Hoping for your sake it isn't and that you just continue to feel good long after you stopped.

@sohypnotic I'm concerned about how I'll cope during a long labour too, but I think I'll go with the plan and be induced week 40 and see how it goes. I'm feeling quite good at the moment so hopefully all will be well 🤞🏼.

Very interesting to hear that your symptoms have remained at the improved level - that gives me hope!

@MiracleBaby2022 yes it is interesting but I think quite a few long term health conditions can improve during pregnancy. Try not to worry about a long labour, my last one was a 3 day induction ending in EMCS and I recovered well and didn’t feel it affected my ME so that was good. Glad you have support. My ME had been under good control for about 8 years before I had my last pregnancy so I was sore I could manage, as it is a worry with a baby. I was diagnosed after a flare up when my other children were 3,6 and 7 and it was tough for the first year whilst I built myself back up.

@MiracleBaby2022 how are you now? And how did it all go? Xx