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 must admit, my decision was difficult too. I was never going to let it put me off having children as thats all I have ever wanted and DH wanted to wait a few more years to see if I got better. I said that chances are it won't and it is just something I will have to live with and I wouldn't put any more of my life on hold. Took 3 years to conceive DS anyway.

I spent the whole pregnancy and first months panicking about every little thing about how I would cope with a M.E. and a baby. It was hard but it was no where near as difficult as I built it up to be in my mind. Obviously I have limitations, like I don't take DS swimming on my own as it is exhausting. I did orginally but now he is running around, I just can't chase after him in a pool.

I am looking forward to not worrying quite so much this time even though I know it will be harder as I have a toddler as well but it is possible and it is managable. The hardest bit, sleepless nights etc don't last that long either.

I'm really enjoying (most) of the toddler stage where DS can climb in and out of the car himself, amuse himself by playing etc. Daunting to be starting again while I have reached this stage of a good routine etc that is going to have to be totally changed but it is doable and I will just adapt a new routine as and when I need to.

Good luck to your friend.

I know this is a very old topic-just thought I'd add my bit as I did a Google search and this came up.

I had (still do), ME for years before I fell pregnant, I could only manage a few hours a week in work (very luckily I got a diagnosis quickly).

During pregnancy my symptoms drastically improved. I had a very tough labour, which I think was partly through not having the energy to push. ...

But my ds is 17 months now and he has been my miracle cure!
I still tire a lot easier than a normal person and I have sleeping tablets for insomnia; however it's nothing compared to how I used to be!

My one piece of advice would be-get a routine. It enabled me to plan my rest andcarry on wiwith pacing x

I tried to change my nickname to joannalane, but I still seem to be NKfffff etc! In case anyone searches this thread, I'd like to post a message about an important programme on 'Inside Health', Radio 4, last Tuesday (9 April). You can get it on the podcast page, where it'll be available indefinitely. I tried to change my nickname to joannalane, but I still seem to be NKfffff etc! In case anyone searches this thread, I'd like to post a message about an important programme on 'Inside Health', Radio 4, last Tuesday (9 April). You can get it on the podcast page, where it'll be available indefinitely. www.bbc.co.uk/podcasts/series/medmatters
What this programme says is that sexual and fertility problems (miscarriages included) can be caused by malfunction of the pituitary gland, and you can treat it by replacing the missing hormones. The neurosurgeon on the programme said up to a million (yes, a million!) people in the UK may be suffering from undiagnosed hypopituitarism, caused by head injury. What is disturbing is that head injury isn't the only cause, other things like autoimmune disease and tiny tumours can cause it too, so maybe a million is a conservative figure. The symptoms can be varied, depending on how the gland is affected, but as well as the sex/fertility risk, you can also suffer from obesity, chronic fatigue and depression. If you think this could be you, insist on being referred to a good endocrinologist, don't just let your GP do a short synacthen test and then tell you you haven't got it. This test is only 60% reliable (Dorin, Testing for Adrenal Insufficiency, 2003)

Hi guys.

I started a thread over here if any pregnant ME/CFS sufferers or other spoonies what to chat.

I'm 7 weeks pg with my first with very bad sickness and vomiting and exhaustion off the scale. I've had ME for over 20 years ( and I'm 32).

I thought long and hard about having a child and it took a while for both DH and I to get to a place where we felt it was right. Slight prob at the moment as I had a big flare up over winter so work are antsy over my sick leave.... Hope the nausea gets better soon.

Hi Bobby99
Just wanted to say that my DSis was diagnosed with CFS when she was in her late teens. And has gone on to have two amazing little peeps...

I too wondered how she would cope, but cope she has and amazingly well. Don't get me wrong, she still has the odd day or two (or so) where she looks flipping tired and on those days she's just easy on herself. The kids needs come first and if needs be, she'll just take the day easy and not get worried if other stuff doesn't get done.

Our Mum did help out alot - especially after the first one came along, but quite honestly, as it was her first grandchild she would have done that anyway!!!

The kiddiwigs are now 7 and 4 and I can't believe how time flies how she's managed it all.

I'm coming up for having my first in July and am quite honestly worried about coping, and I don't have CFS! (Allthough there are other health issues knocking around :S )

If its something she feels she needs to do - she'll do it. I have to say though, that since having the children my sis's health (regarding CFS) has been VASTLY improved.

:)

Sorry to high jack the conversation too....but I have ME/CFS and fibromaylgia. I have been struggling with it and I have 2 beautiful children, but can't get the idea of a 3rd out of my head and at 35, my biggest worry regretting not having another. I was diagnosed after my children. Anyhow this is how I found this thread. I have been taking something call L tysoine which is an amino acid which feeds the neutrtansmitter in your brain. You can get them from ://www.amazon.co.uk/Now-Foods-L-Tyrosine-500-Capsules/dp/B0013OUPSE/ref=sr_1_1?s=drugstore&ie=UTF8&qid=1366663327&sr=1-1&keywords=l+tyrosine

Basically they are responsible for controlling everything your body does from sleeping, breathing....everything. After reading a bit about it on ehow, they think that in ME the neurotransmitters gets a bit of balance causing problems. See link chronicfatigue.about.com/od/treatingfmscfs/a/neurotranshub.htm

I have been taking them and I feel so much better. I'm not sure if they would be ok in pregnancy but they are great. I'm not cured, but they give me a boost and my bad days only last a few days rather than a couple of weeks. I would recomend them. I have looked into other amino acids ect.... Which I am going to try to help sleep, relax ect.... Hope this helps some people??

I feel very sad when I read posts like this. I am newly married and we are thinking of trying for a baby. I also have moderate ME which leaves me bedbound at times. I feel that it is only the right of the to-be parents to make the choice, albeit with lots of information and research under their belts.

It really doesn't help when people judge and try to not be patronising, when quite clearly they are.
Of course it is a difficult decision but I'm sure most people with ME do not take it lightly, do lots of research and speak to health professionals about it.

You say you don't think she knows just how exhausting a newborn can be. I think anyone with moderare/severe ME will know exactly how it feels to be that exhausted if not more. Many of us also know how to pace and combat that level of fatigue. Yes it might be an exceptionally difficult experience but what it brings will completely outweigh the negatives. What your friend really needs is her friends. She needs understanding, moral support and zero judgement.

I've researched loads and spoken at length of the challenges and dangers posed by pregnancy and parenthood. Ive also been patronised by Dr's, had those 'looks' and also been 'patronised' by friends and family thinking they are trying to help. I feel sad and very frustrated that people feel it is their place to judge when it is clearly not. You wouldn't treat or think of a non- ME sufferer that way. It is complete discrimination. I'm not really talking about you in this way, you may feel you have your friend's best interests at heart, but at society as a whole and your post highlights the thoughts of many non-suffers.

Ultimately, It is the right of a woman/parent to make the decision whether they want a child, ill or not.