Experiences of giving birth with M.E/CFS?

[Penguinandminipenguin]

I've seen a few posts about M.E and pregnancy, but I can't really find anything about labour, so hope it's okay to post this.

I have M.E and I'm 33 weeks pregnant at the moment and I'm getting increasingly scared about labour!! I have a consultant - I saw one at 19 weeks who said we'll "see how we go" and one at 30 weeks who is adament there will be "no intervention".

I am seeing a consultant again on Tuesday (I believe it's the same one I saw at 30 weeks) and I'm having a growth scan. I know the scans aren't always accurate, but at the last one at 30+4 weeks the baby was estimated to weigh 4lbs 3oz, so they think we're looking at a 9/10lbs baby.

The whole pregnancy has been quite challenging, so I've just been trying to deal with each step as it came, so it's only now I've started to think about labour! I'm just so worried. I'm absolutley exhausted and went on ML at 31 weeks as I've been signed off since 19 weeks with extreme fatigue.

I'm now scared that I won't be able to get the baby out! I'm worried because of how big she could potentially be, that I'll just be so exhausted that I just won't be able to do it. As I said, consultant is adament no c-section, but he has barely registered that I have M.E, as the one appointment I've had with him was focused on how the babys tummy was off the percentile charts.

I have tried to google M.E and labour, but the main advise seems to be to have an epidural at the earliest point possible. I can't have an epidural due to spinal issues so I'll just have gas & air, and possibly the diamorphine injection.

I was just wondering what other peoples experiences were of M.E and labour (and possibly big babies). Did you give birth vaginally or did you have a c-section?

Tia!

Hi Penguin, I have CFS/ME too. I haven't given birth yet (34 weeks), so can't give you my experience of that. However, I thought you might like to know that my consultant has given very different advice to yours.

Her take on it is that she gave me the choice of vaginal birth or ELCS. However, she very very strongly advised an epidural if I went the vaginal route. As she put it, even women without CFS get exhausted by labour, so I was likely to tire much more quickly without an epidural. She explained that previous patients with CFS had mostly chosen c section. Her concern was that if I got very exhausted I would find it very hard to cope with the baby, and she was concerned that I might relapse if I laboured for long without an epidural.

I thought hard about it - after all, the shock of an operation/spinal could cause a relapse too. However, knowing me, my symptoms and disease history/trajectory I decided on an ELCS. I think that will be less traumatic for my body and less likely to trigger a major PEM episode, though of course there will be some.

I'll be watching the thread hoping somebody with experience of birth chips in.

Sorry, meant to say that if you can't have an epidural, I presume you can't have a spinal either? If so, that would mean a general anaesthetic if you had an ELCS. Do you have any experience of how a GA would affect you?

How are you generally with pain? I'm not good, since developing CFS, but maybe you're better and could manage with gas and air....?

Thanks so much for the reply! Congrats on your pregnancy :)

I can't have a spinal either. The anaesthetist said a GA would be the best way to go. He explained it would be the last thing they did so the baby would be out minutes later so shouldn't be too affected. He seemed to think it was a good route to go down. He said the only down side is that I wouldn't see the baby first, dh would and also I might be a bit groggy afterwards. He said they try and use a mild dose though and if there's no complications, I shouldn't be under too long so he felt I would recover fine. I've had a GA when I was younger to have teeth taken out, so it obviously wasn't for long but I didn't have any ill effects. I didn't feel sick or anything, just a bit sleepy but it passed after a few hours and I was fine. That was before M.E though.

I real thought I would try for a vaginally birth originally, but I don't cope with pain well at all, and as I have back problems (I have a mild form of spina bifida) I'm worried I'll be in agony. I'm just growing more concerned now I've been told to expect a big baby too, because I don't know how the hell I can push her out tbh. Major Tmi, but I've been so run down for weeks I can barely even go to the toilet without being in agony and getting leg cramps for hours after so I'm just scared as to how I'll cope.

I guess my main fear is like what you were saying your consultant said, I'm worried about a huge relapse if I have a difficult birth. Trying to look after a newborn then would be really challenging, and I don't want to be a zombie for the first few weeks of her life.

I guess I'll talk to consultant again on Tuesday, but if it's the 2nd one I saw I can see him just being adamant I need a vaginally birth. He didn't even care I had m.e last time, despite that being the reason I was referred to him in the first place, he was just going on about the big baby.

Sorry, I've rambled on here! But thanks very much for your response, it's helpful to know what other consultants think!

I have CFS and had dd 3 years ago. (Im)patiently waiting for number 2 to arrive - 3 days late now but that's another thread!

I find pregnancy a real challenge and my CFS is much worse. When not pregnant I have reached a point where it is fairly well balanced and controlled. In fact since having dd I've been better than I have in years, until I got pregnant again anyway. So obviously my experience is based on that. As CFS experiences are so individual to each person you obviously need to assess how you are.

Anyway, dd was induced at 41 weeks as my blood pressure was incredibly high. I'd suffered with that throughout last trimester. I had hoped for a nice relaxing water birth (and am hoping for that again this time and thankfully my blood pressure had been good this time round).

When I was induced I had my waters broken and used gas and air, unfortunately it made me vomit. Also I wasn't progressing so I was then put on the drip, which frankly was hideous so I chose to have an epidural. Unfortunately that wasn't sited properly so only worked down one side. I think this did make me more tired as I was in constant pain. It was also overnight so hasn't slept since night before. I was pushing for an hour when dd got distressed and I just ran out of energy to push properly. Therefore I had episiotomy and dd was ventoused out. This was the most preferable option as, if I'd had a c section, it would have been under a general as epidural obviously wasn't working. I really wanted to avoid that. Might be something for you to ask consultant about if you can't have spinal. By the way dd was 8lb 10 so quite hefty.

That all sounds fairly hideous (and it was no picnic!) but post birth I recovered very quickly. Was back on my feet within a few hours - another reason I wanted to avoid a CS, especially this time round as also have 3yo dd. I think adrenalin plays a big part. I felt fatigued obviously but coped with having a newborn much more than being pregnant, it's much less draining on my body. In all honesty I found the newborn days pretty easy. I was tired but so were all my friends with newborns. It felt like normal tiredness as opposed to CFS.

I breastfed dd and apparently the hormones can help with CFS. Whether it was that or luck I don't know but certainly I improved massively post birth. As with all things CFS related it's really hard to assess how you personally will be affected. Please ask here or PM me if you have any questions.

Oh and sorry for opus here!

Also to add, don't expect too much in the beginning. High expectations set you up to fail in my view. As long as you are both fed and baby has clean nappy on, it's been a good day! Just sleep/rest/gaze at your baby the rest of the time.

Congratulations on baby number 2! Hopefully you won't read this reply for a while because you will have gone in to labour ;)

Thanks for your response - it's really helpful to read about other peoples experiences. I have the consultant again tomorrow, and he was dismissive of the M.E last time, so I feel a bit more confident about going there and asserting myself a bit now.

I'm sorry you felt worse during pregnancy. When we were deciding whether to TTC, everything I read online pointed to reduced symptoms of M.E during pregnancy, but I, like you, seem to have fallen into the minority of people who feel worse during pregnancy! It's a huge shame, but very encouraging to know you felt a lot better after the birth. Fingers x you feel the same again after number 2!

I have prepared myself for the worst case senario being that I'll be very unwell after birth. Baby is due during the summer hols so luckily dh is off work (he has M.E too) so I'll have lots of support, and we're also staying with my mum for the first few weeks so if we do struggle there's support nearby (we have no family or friends where we live. Hopefully though, that won't be necessary if I feel the way you've described :) I am hoping to BF aswell so fingers x that will help things.

Thanks for your reply again, hope your labour goes well this time for you :)

Good luck tomorrow! I hope your consultant is more understanding this time. While many civilians don't understand/ are dismissive of ME, you would hope a medical professional would know better. I'm wondering if anybody like Action for ME has any useful info online you could print and take with you. The need to avoid relapse if possible should be uppermost in the consultant's mind.

Congratulations on your pregnancy, and I really hope all goes swimmingly for you. Sounds like you have good support lined up, which will be a huge help.

I agree, you'd think medical professionals would know better. The first consultant we saw, as soon as I mentioned the M.E, he said "wow, you must have been floored during the first trimester". That was really reassuring for me that he understood the condition, as he said that without any prompting or anything from me. I was meant to be seeing him again last time, but god knows what happened but there was a mix up. I just hope the new one now listens to me!

Feeling a bit nervous as I hate having to be pushy assertive, but I know I need to! Good luck with your pregnancy & labour too :)

Thanks! Fingers crossed for you.

Thanks penguin. Glad to see you've got lots of support. It really helps to have someone looking after you while you look after baby. Hope the appointment went well.

So we explained about the CFS/ME (and other health issues) yesterday, that consultant hadn't seemed to pick up on last time. He refused to discuss labour/labour options and said at this point we are "just monitoring".

I was meant to have another growth scan at 36 weeks, but baby is big (5lbz 110z at 33 weeks) so have another one at 34 weeks and then again at 37 (I think). He said we will discuss it after more scans as this is the "monitoring period".

I do understand what he is saying, just concerned though if I go into early labour (unlikely I know but dh was 6 and a bit weeks early so he's worried) that there is no plan for labour.

I realise this is an old thread, but am looking for an obsterician in london who has some familiarity with m.e/cfs. ( first I saw hadn't heard of it!) I'm going private at mo, but that or nhs would be of interest.