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Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

Pregnancy

Any pregnant ladies out there with ME/CFS?

20 replies

Flowzer · 27/02/2016 20:43

Hello ladies,

I have had moderate ME/CFS for 10 years (feel ill and exhausted all the time, not able to work, unable to walk far, restricted to short trips out etc). I have a beautiful 4 year old son, and have just found out I am expecting no. 2! Although it wasn't entirely planned, we have been discussing the idea of a second for a long time, and having all the usual debates about whether we'd cope that all parents with long term chronic illnesses must go through.

I know there are other ladies on here with ME/CFS but as all the pregnancy and birth posts related to it are rather old, I thought I'd start a new one! So....am I alone? Or are there other fellow sufferers out there expecting??

I'd love to chat to someone else in a similar position, as this can be such a lonely and isolating illness. I sometimes feel that there is no-one else out there struggling to just be normal and raise a family, but I know that isn't true. I'd love to compare notes...and be reassured that I'm not totally mad having another!!!

Hope to hear from someone soon!

Laura

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LaraG13 · 27/02/2016 22:53

Hi Laura, I don't have CFS, but am in early stages of pregnancy and my partner does. He has had it for around 7 years. We're trying to work out how we will manage the baby (our first) around his illness. He can't work and is unlikely to be able to offer much help with childcare. We're both anxious about what the future holds, and this has been a big decision for us, but we're very excited too. I sometimes wish he were well so we could expect a 'normal' family life, whatever that means. I think we will have to just get through the best we can, even though we might have to do things a bit differently. I know, for example, he wouldn't be well enough to be present for the birth of our child so will ask my mum to be there instead. But I know I am lucky in many ways and it's him, poor love, that has this awful illness.

Anyway sorry for banging on! I'm not in the same boat as you at all, but wanted to say that I know what an awful debilitating illness it can be, and I wish you all the best!

Flowzer · 28/02/2016 14:44

Hi LaraG13, I just wanted to say "hi" and thanks for replying! Congratulations on your pregnancy! I know it'll be an anxious time for you both, but I can tell you now you WILL cope. And if your partner is anything like me, being a parent will give him a new sense of purpose which makes living with ME a little more bearable. I'm not saying it isn't extremely hard work everyday to just get through...the fatigue is unreal sometimes....but it is more than worth it. Finally, after 10 years I am starting to accept that a "normal" family life is whatever you can make it, and as long as he can give love and attention, that's all your baby will need from him.

Best of luck with your pregnancy and try to get as much support as you can in place for when the baby comes. It sounds like your mum will be a great help?

Wishing your partner many more good days than bad 🙂
Laura

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FellOutOfBedTwice · 28/02/2016 14:50

Hi Laura

I've had CFS for around 14 years. It's been good and it's been bad. I have had periods of being very well (worked as a teacher for 8 years now although latterly only part time) and periods of being virtually unable to get out of bed. I have a 20 month DD and am 13 weeks pregnant and struggling massively at the moment. In a very bad place physically and can barely get out of the house. This is in stark contrast to how the previous 17 months with DD have been- before I became pregnant again I had had a lot more energy.

Feeling quite depressed about it all so it's great to find this thread.

Flowzer · 28/02/2016 20:02

Hi FellOutOfBedTwice, nice to hear from you! Firstly, congrats on your pregnancy, and secondly much respect and admiration for having another so soon after when you are dealing with ME as well!

Try to stay positive. When I was considering having my first my GP told me that many "normal" women are totally floored by the first trimester, and spend a lot of time in bed, so perhaps how you're feeling is more pregnancy than ME related. It must be a good sign that you had been so well after having you daughter and dealing with a newborn/toddler. My last pregnancy was pretty good and my ME was better for most of it (it was SOO good to feel sleepy tired rather than horribly fatigued for a change), but I went steadily downhill again and by the time I stopped breastfeeding all my symptoms were back to pre pregnancy levels 😔

I'll be keeping my fingers crossed that it's pregnancy and not ME that's making you feel rough, but you're not alone either way! I'm only 6 weeks today, but already feeling tired and breathless coping with my son. A LONG way to go yet, assuming all is well....

Let me know how you go.

Laura

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Flowzer · 10/03/2016 19:11

Is there really no-one else out there???!!!

How are you feeling now FellOutOfBedTwice? I'm just about 8 weeks now and have been exhausted this week...really struggling to keep going all day and then conk out as soon as my little boy is in bed. Hope you're feeling a bit better now.

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Sunflowers21 · 17/05/2016 08:25

Hi Everyone,
I'm 18 weeks pregnant with my first and have had me/cfs for the last 5 years. The illness was pretty severe for a few years, had to stop work, was mostly housebound etc but things have improved loads and before getting pregnant my life was a lot less restricted and in my own limited way, with lots of rest days, I was able to live a 'normal' life. My pregnancy has been pretty up and down and to be honest the fatigue seems to be getting worse not better. We're starting to think about the birth (been told to avoid c-section if can) and how to help me best cope and how what we can do in the first few months to prevent relapse (been told this is the worst time for me/cfs to come back bad). So I'm really glad to have found this feed and to find other ladies out there in similar positions, nice to know we are not alone and that others have done this already 😊

thisisbloodyridiculous · 17/05/2016 08:35

Joining this thread as I have ME too - currently only 6 weeks pregnant but it is pretty tough already with my fatigue getting so bad I can barely do anything! Hoping it will improve after first trimester!

Flozer66 · 08/10/2016 22:08

Im pregnant with my first and have had ME for 4 years. I can hardly move. My partner I think is having an affair. I can't do anything about it because I feel so terrible

Flowzer · 09/10/2016 11:14

Hi Flozer, I am so sorry to hear that. What makes you suspect him?

How far into your pregnancy are you?

When you say you are feeling terrible, do you mean ME symptoms, pregnancy symptoms, or just emotionally?

Sending you hugs...

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Usedandabusedimhurting · 09/10/2016 13:46

Me!

I'm 10 weeks. Had ME 3 years. I'm exhausted beyond all belief. Some days I can't walk my daughter to preschool. It's v hard going.

Happy to talk to other sufferers

Flozer66 · 09/10/2016 20:16

Thanks 😊

I am 17wks but ME is making me so tired and I've been quite sick too. I guess emotionally I'm in a mess too which doesn't help.
He's spending a lot of time on his phone and is shitty if I ask what he's up to and is usually regularly home from work on time but is being quite sporadic with it currently which is unusual. He's also not wanting sex really at all which isn't like him but I guess it could be because of the pregnancy. Am I just being paranoid?
I think women's intuition is powerful though. Something's wrong 😞

Flozer66 · 09/10/2016 20:19

Sorry pressed send before I meant to!
Florence x

Flowzer · 10/10/2016 19:47

Have you tried asking him about it? Women are def good at knowing when something's wrong, but it may not be what you think it is..... Has he been happy about the pregnancy? Has he expressed any fears about coping with a baby and your illness at the same time?

My husband has depression and it got really bad when I was pregnant with my first. He would never tell me how he was feeling though, and how worried he was, and his behaviour just changed as a result. He started coming to bed long after me and spending loads of time texting another woman. I'm not saying your partner is doing the same, but it was only when I confronted him about it that he realised what he'd been risking. I think it was just his coping strategy...easier than talking about his fears.

It might be worth asking him about his odd behaviour. If it's not an affair you can work on what it is. If it is an affair, you may be best finding out now as the stress of not knowing may well be making your ME symptoms worse.

Whatever you decide, do you have family support around you?

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Flozer66 · 11/10/2016 09:06

Would you want to know if your husband had an affair though? If you could find out for definite?
What if you found out he'd been seeing the same woman for years? Would you leave him? Could you forgive an affair?
I don't have much support around me, I rely on him for everything ☹️

Flozer66 · 20/10/2016 23:55

I knew you wouldn't answer that. Hard to imagine he'd do that to you right?

Flozer66 · 28/10/2016 22:36

Just wanted to apologise for the outburst. I was having a really bad week, just so frustrated with everything. I keep remembering back to when I was at uni and I thought I had my whole life ahead of me, instead now I'm tied to my bed 22 hours a day and am not sure how I'm going to cope with the baby. Hope everyone else is doing better than me!

user1476183163 · 11/11/2016 09:30

I hope you are feeling a little better and things have resolved for you in your relationship. Just thought I'd let you know I'm a fellow CFS/ME sufferer who has just become pregnant- there are plenty of us out there, you aren't alone!

Flozer66 · 03/01/2017 23:23

Have you had your baby OP? How is it going?

I've been eating well and I'm feeling a lot better recently. I even managed to spend most of xmas day awake! Maybe pregnancy suits me!!

Lane1409 · 27/10/2018 18:59

Hi not sure of anyone will read this?! Just wondered how you'd all got on? I'm 8 weeks and feel awful sicky and dizzy lots. I hope this isn't going to make my cfs worse, kinda terrified :( x

Miss1986 · 18/12/2019 06:30

Hello Lane1409, how did everything went? I'm week 6 dizzy and derealized all day long, scared it may get worse too. :(

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