Chronic fatigue syndrome and pregnancy

[Bobby99]

I have a friend with CFS. She has no children yet but is considering whether to start a family. I'm very worried about how she would cope - firstly with the pregnancy itself, but more about how she could possibly manage with a baby. She has been very ill with CFS in the past, but is pretty stable now, albeit still with very little stamina and days when she has to get up late/doesn't have the energy to do anything etc. Does anyone have experience of how pregnancy and motherhood had effected CFS?

I don't mean to be patronising, but I'm not sure you can really appreciate how exhausting a newborn is until you have one. I have felt like I'm hanging on by the skin of my teeth sometimes and I don't have CFS, and I imagine it must be doubly hard with CFS.

I don't have CFS, but I have health problems which cause extreme fatigue.

A lot of people with many types of chronic illness find that their symptoms suddenly improve in late pregnancy and the newborn period; whereas there's no medical explanation for this, it's a recognised phenomenon. So there is a chance that your friend will cope better with a newborn than she does at the moment. But does she have a supportive partner and friends and family who can help out if needed?

I had CFS for 6 yrs and got pregnant when was pretty much better but still more tired and rundown than the average person. I coped with a long labour and ECS but was quite wiped out for the first few months (but then a new baby is exhausting whoever you are!). I have found that it actually has helped my CFS having a baby - i am much better than I was and would go as far as to say I am cured. I think your friend should go for it providing she has plenty of back up for the first few months just in case. I also know of someone else who got pregnant by accident when she had CFS and it actually completely cured her.

I am really interested in this topic as i was diagnosed (finally) with post viral CFS about 15 months ago after a very bad case of glandular fever with a lot of complications.

i am under the care of the CFS team at my local community hospital and i actually raised this very issue last week with my nurse. unfortunately i didnt really get a helpful respose as she says CFS is so different in people and she knows of people that have fallen pregnant and actually found their symptoms improve.

i am lucky in the sense my symptoms have improved and i can work full time but i do suffer extreme fatigue and find i have to spend my weekends recovering from work rather than being able to do much socially. I was a full on social butterfly until i became ill and it has been a very difficult road to travel as im only 26 but feel ancient! i would love to start a family as i have the issue of all the females in my mothers side have had very early menopause (around 35) and i have been advised by my doctor to bear this in mind as he believes there is a tendancy for this to run in families. i feel rather hemmed in at the minute as i am very concious i may not have as many years as some people of my age to have children, i have no idea if i would even fall pregnant easily anyway, a partner who is now having the wobbles about when he wants to be a dad (after being certain he wnated them before 30 and he is 30 next year and now back tracking!) and my CFS making me feel guilty that i shouldnt even be thinking about bringing a life into the world when i cant even manage 2 evenings out in a row.

sorry for empting my head onto your post but it really struck a chord with me and i think your friend may just have come to a point where its now or never, there is no guarantees her CFS will suddenly dissapear and i am sure the baby will be well loved and looked after. having CFS may curtail activities but i dont think it should prevent a sufferer from becoming a parent (im hoping for my sake anyway)

Deciding to have a baby is a leap of faith for anyone, CFS or any other issues or not. I've had friends who were very healthy prior to TTC who've unexpectedly had to deal with serious fertility problems, life-threatening pregnancy complications, paralysing PND and severely disabled DCs. There's nobody out there who can go into having a baby expecting a breeze. Maybe it's just that those of us who have already been forced to become aware of our physical limitations tend to have considered these things more deeply...

Hi,

I was diagnosed with CFS over a year ago after a very bad viral infection. It took me time to get my symptoms under control. My CFS also left me with depression which i've managed to control without medication.

CFS is hard to live with as most people think you are just being lazy. But the days when you just don't have the energy, only you know how that feels.

I'm lucky that my DH has supported me, especially when i was first diagnosed. He made me remember my limits and take rest breaks.

Being pregnant, now 36+4 weeks, i found my CFS manageable. You do get more tired in pregnancy, but you do have to remember to listen to your body. Rest when you need it, eat regularly and looking after yourself.

The excitement of looking forward to having a baby, having my DH understand my condition and taking on chores himself helps. Its not easy everyday, but its just taking each day as it comes

i have had CFS for nearly 4 years now after a terrible bout of Glandular fever. I actually found that my symptoms got better during pregnancy, i was able to get around better than ever in early pregnancy, and although i am struggling now in late pregnancy i think the problems i am having are the same kind of problems anyone would have at 38 weeks pregnant.

x

I've had ME/CFS for 3.5 years. It appeared overnight with no warning. I'm newly pregnant (planned), I found out a few days ago so think I'm about 5 weeks but have fairly irregular periods so it's quite difficult to guess. Therefore I'm obviously not an authority on the subject.

I'm having lots of pregnancy symptoms already but that might be because lots of my ME/CFS symptoms mimic pregnancy anyway, quite annoying!

I work part time, I can't manage full time, and I try to be strict with myself with pacing so I don't do too much in any one go (or too little for that matter as it is equally bad.) My DH and I have been broody for a while but decided to TTC once my ME/CFS had been stable for a while and I'd settled into a routine after starting a new job.

No two people are affected the same with ME/CFS so it is hard to give a definitive answer. Equally, everyone has different experiences of pregnancy and as mentioned by someone else, nobody expects having children to be a breeze. I would recommend your friend builds a good support network and makes sure she puts pacing in to practice so she can manage as best as possible. Oh and get a cleaner as it has been my saviour!

Also, there is a website for parents with ME/CFS (google ME/CFS parents). It's very friendly and the people are a great source of support and information. Your friend could have a look on there and get an idea of how others manage.

I got pregnant by accident and have ME. I enjoyed being pregnant and having a newborn because I finally felt normal. I didn't have to explain to my NCT babygroup how tired I felt etc because others were exhausted too, just sleep deprived tired whereas I was ME-tired. Finally they understood how ME affects me...

I'd say to your friend to go for it, because I'd really have regretted not having children, and my dd seems to be doing alright!

I've had CFS due to attendant endocrinal issues for 16 years (it's been a barrel of laughs ) and I'm 13+ wks pg. My pg fatigue is very bad and everyone I've seen (GPs, MW, Consultant, etc.) says my fatigue is at a worse level than a normal pregnant woman's. HOWEVER, because I'm used to feeling terrible and my energy and stamina fluctuating, I am paradoxically finding it easier to cope with than healthy women who get fatigued in the first trimester, IYSWIM. When I told my consultant this, he agreed that this is true of most pg women with CFS - we're used to coping with feeling rough. My DP has taken over virtually all of the housework (previously 50-50) and my retired parents help out now and then.

I am having a normal, MW-led pregnancy and am due for a normal vaginal delivery, with the MWs and Docs involved being made aware that I'll tire quicker than usual. I have some worries about fatigue once the baby is here, but I have such a good support system that I am v confident. I might not be the most active Mum, but my child will not want for love, attention and patience. And I've also heard quite a few stories of CFS improving or disappearing after pg, so have my fingers crossed that these are not myths :)

I have M.E. and had to give up work years ago as I just couldn't manage it. I was worried about having a child but I refused to let it put me off the one thing I have always wanted.

TBH your OP does sound a little bit patronising. Its up to your friend whether she thinks she can cope or not and only she can make that decision.

I found it very hard in the early days but I also found that I was so used to being tired that I think I founf it easier to deal with than a healthy person who suddenly had the new mum exhaustion.

Once DS got into a routine, it helped. Getting out and meeting people helped a lot too, but I also had PND. I didn't breast feed as I read that makes you even more tired and I felt that it was more important that I have as much energy as possible, plus formula does make babies fuller for longer and DS only ever used to get up twice in the night.

It is never going to be easy and I didn't have as much help from people as I thought I might to be honest. But it doesn't last that long and now DS is 2.9 it is great as he still sleeps in the day so I can nap and he is quite happy to play while I sit down.

Our activities are very limited. I tend to go to peoples houses or toddler groups where I can sit and DS can play. DH takes him to the park and stuff and I only take DS swimming if DH is there too as that is exhausting.

As long as you know your limits and manage within them and have a supportive partner, there is no reason why anyone with M.E./CFS can't have children.

Thanks everyone for your posts. As I said, I didn't mean my question to be patronising. I know and love my friend very well and would hate to see her at rock bottom again, so I'm just worried that something as exhausted as having a baby might propel her back to the dark days when she couldn't get out of bed all day etc. My concern is because I do understand how real and serious CFS is. My friend will make her own decision and of course I will help her as much as I can either way. I just wondered what other peoples experiences had been.

I think this a decision that only your friend and her partner can make. People become parents whilst suffering a myriad of illnesses and conditions. One can also become ill during parenthood. Much as we'd like to, we can't predict the future. I've had ME since I was 19 and have been extremely ill, however I'm now 39 weeks pregnant. ME takes so much from the sufferer, the last thing I personally would want, would it to also rob the chance of motherhood from me.

I try to feel positive about it. I like to think that the fact I am so used to running on empty batteries means that I am more used to it than the people who go from "normal" lives to dealing with a newborn

DS is a year old, and its been tough going. Honestly my main concern is now for DS - I don't want his life to be affected negatively by the fact I'm disabled, and unable to do some of the things a well parent would be able to. I'll never be able to run around with him, take him for long walks, teach him to climb trees... But I will be able to sit down, read a short story, sing with him, explain things to him, and let someone else do the active things, because "Mummy has poorly legs".

I'm sure your concern is well meant, but really - your friend needs your support. If she has decided this is what she wants to do, possibly like some other sufferers I know thinking "Well I'm not getting any better, there's no point being older, too", then she will have already considered the affect it will have on her ME.

I have had ME for 14 years and am currently 37 weeks pregnant with my second child (DD1 is 5). I have a very supportive DH who is ft SAHD who does everything in house, this allows me to work ft. I have fantastic support from my employer and have learnt how to pace myself properly. I have been so unwell I cannot get out of bed but am now on a fairly good high . I have found with both pregnancies I improved whilst pregnant but you have to accept it will change how you manage your life and your condition. My DD understands there are things mummy cannot do but she has never known me any different. My DH ensures she doesn't miss out . I think the most important thing is understanding your capabilities and support structures and utilising them.

It is quite nice to see that there are so many other people struggling in the same way, without sounding horrible! Sometimes it feels very overwhelming, this being ill thing on top of being a parent. Nice to be reminded you're not the only one :)

sirboobalot I completely agree, I have only been on this site since being pregnant this time so not as long as some but did wonder if I was the only one here with CFS I know there are many parents with children who have CFS on here but couldn't seem to find many "grown ups" with it.

Having been through the worst and come out the other side I am now in a sort of holding pattern, I know my limitations and actively manage my condition through pacing amongst other things. Child bearing and childbirth (naturally) is possible and as has been said can bring improvements to some - my rheumatology consultant has been so impressed with how I have coped with this pregnancy he now wants to test my hormone levels post pregnancy to see if they are causing some of my continuing problems.

Back to OP - sorry to hijack - as you can see there are those of us out here who manage, I think if you trust and support your friend she will really appreciate that. Also if she is well enough to conceive then she will probably manage ok as for me that's the first thing that unfortunately gets "paced" out when I am not managing well

I had ME since age 15.

When I got pregnant at 33 I got a lot worse and felt very ill with fevers.

I was even worse just after DD was born 4 years ago, then the fevers I had had for 20 years stopped and I haven't had them since, have more energy, which is just as well as DD has quite severe SN. I'd say i am 80% better.

I was lucky though, obviously not everyone is 'cured' by pregnancy.

I also 'like' the fact (not quite the right phrase, but you all know what I mean) that there are quite a few of us on here. It makes us feel less alone and at least we can share our experiences with others who will know exactly what we mean. Unfortunately there are the others who just don't get it and will say "oh yes, I get like that" when it isn't the same. Tired to us means a whole different thing. At least healthy people can go to sleep and wake up feeling better! But it helps to know others understand us very well!!

We seem to have hijacked Bobby99's thread - should we start a separate one? I have tried before but I think I was very new and it didn't grab anyones attention

There are threads on the disability board but they don't get much traffic now.

Maybe we do need a new one where more people will see it. I am surprised at the amount of people with it on this thread!

Voila :)

boob Many thanks -see you over there!

CrazyPlateLady I don't use the disability thread as I don't class myself as disabled - fighting that "label" long and hard - will chat about it sometime

See I do see it as a disability, although I don't use that board, because it is more long term and serious than anything else I can think of to describe it. I think other people understand disability more than long term illness.

Not that I go around saying "look at me, I have a disability" I don't use that word really but I do think of it like that.

How do you describe it, out of interest?

cpl I usually say I have a long term medical condition. I work in the medical world so most of my colleagues have some understanding although there are still sceptics. The other element of my job is what really stops me using the term disabled - I am in the armed forces so it means everyone expects you to be very fit. My social worker is trying to persuade me to apply for dla and motability to help us out but I feel as long as I can keep working I shouldn't claim, there are others in much more need than I am and I would hate to delay someone else's application because they were processing mine - just my personal view on my own situation at the moment

SirBoobAlot - my friend hasn't decided one way or the other at the moment. She has talked about it a lot, and one of the main things that is worrying her is how her CFS would be effected. I'm not trying to interfere in her decision (her partner is leaving the decision to her...), I just wanted to canvas other people to try to get some info on how CFS has affected other people. Of course I will support her. Maybe I didn't phrase my original post very well.

Thanks for all your posts, folks.