Pregnancy and C.F.S/M.E

[LozzyDJ]

Hello! I'm new, whoop!
Wondering if you girls can help me. I've had M.E/C.F.S for 11 years (since I was 16), and started bedridden, then gradually got slowly better to the point I can now hold down a part time job (24hours, but very active as I work with young people), but have little energy for anything else.
Husband and I are trying for bambino, but I can't shake the fear and panic about how I'll cope; will I be really ill through pregnancy/will i have to have caesarian/ how will i cope with sleepless nights etc etc.
I do not want something so lovely to be tainted with such anxieties (I also have G.A.D and a panic disorder).
I feel so alone as I am the only person I know who has M.E and don't really want to talk to all my friends about something so personal as trying for a baby (slightly complicated by the fact that one of my closest friends has been trying for a baby for 3 years).
Anyways, any advice? Any reassurances?
Lxx

Hi Lozzy,
Thanks for posting this.
I wanted to reply to your post because your situation sounds very similar to mine. M.E is such a weird thing, and is made even stranger when we don't have anyone with whom to 'compare notes'. I don't know anyone else with M.E either - well, no one who I'd chat to openly.
I'm on my third bout of M.E. The first lasted 1.5years (aged 18-20), the second for 4 years (aged 26-30), and only two months ago I was re-diagnosed (age 34). I too have GAD & panic. I also have the delightful IBS!
Bizarrely, the thing that seems to have triggered off this most recent relapse was a miscarriage & subsequent womb infection (endometritis). My husband & I had decided to try for our first baby, got preggers in three months, then I miscarried at 11 weeks. I'd been well before & during the pregnancy & the miscarriage, but a week later my body seemed not to coping, so I have ended up a tad bed-bound once again.

However, we are still very keen to get pregnant again, despite me just having started on fluoxetine (20mg) to help with the anxiety. I have spoken to two different GPs & my CFS Specialist about the idea of trying to conceive whilst suffering with M.E again. I've not been discouraged by any medical professional. I have heard numerous stories of M.E patients whose condition actually improved dramatically during pregnancy. Once pregnant, you would need to tell all/any healthworkers you're involved with about your condition, just so they're aware & can make sure you have as much support available to you as possible. People like us MIGHT be slightly more susceptible to post-natal depression, but as long as our healthworkers know this in advance, there will be all the help available that we would need.

With regards to worrying about the labour, I think that might be something you just can't predict, and is probably a waste of energy worrying about it. Not until you're preggers & having regular chats with your healthworker will you know what kinds of things to expect. And, even then, it can all go completely differently in the maternity ward - apparently!!

I'm not saying, for a second, that I know everything about everything, I'm just saying that I'm in a very similar boat, and there have definitely been hundreds of thousands of women, with M.E, who have gone through this too. My main thought, when I start worrying about the 'what ifs' is the final outcome - that little bundle of nonsense in our arms. I'm pretty sure that will make everytying worth it.

Our main plan should be to get as much support in place as possible - this might include opening up to friends more.

Anyway, I hope this is of some use. Give me a shout anytime if you fancy comparing ME/ttc notes/concerns!

All the best :)

Mrs A x

I have ME / CFS as well as Borderline Personality Disorder (so understand re your anxiety) and Poly Cystic Ovary Syndrome. I'm going to reply fully to you once my little boy is in bed, but just wanted to send you a smile of encouragement and mark my place for later :)

Right, can sit down and write properly now :)

I'd only been ill for around 18 months when I got pregnant, so was no where near as aware of my condition as I am now, or that you will be either. I felt better in pregnancy than I had in so long, it was almost like a holiday from the fatigue!! My pregnancy was about as highly unplanned as you can get, was far from ideal circumstances in any way. And I coped.

Struggled slightly more with boom / bust because I just felt so good! Labour was... Well. My honest answer is that I don't think I had a harder time than anyone else with labour, and tried to look at it that if anything, I was used to working on minimal energy and high pain levels, which gave me the upper hand!! was on a drip because of mecronium in my waters, which meant that labour got more intense much quicker. But even with that, I managed. Ended up delivering without any pain relief, I was keen to avoid it as much as I could.

I think the only think labour wise my then specialist warned me about was that ME and similar conditions make you more susceptible to general anesthetic. So that if I did need to go for an emergency c-section, to request it under epidural if possible. I discussed this with them during pregnancy, and once I was admitted to the labour ward, and they were fine. I have since had a GA for a lapraoscopy, and it did take me a lot longer to come around than expected, and several weeks to be feeling human again.

My biggest tip for sleepless nights? Breastfeed. Breastfeed, and co-sleep. Breastfeeding mothers get more sleep (because even if dad is getting up to give a bottle, your mummy brain will wake you up anyway!!), and can drift back off to sleep easier after feeds, and by co-sleeping you can also feed if your sleep. Breastfeeding also releases endorphines, so helps with energy and pain.

Also, get a decent buggy. I use a walking stick at all times, so two handled ones were out of the question. Go in and test them out, several times, see how easy they would be for you not manouver, collapse, lift, and put a baby in and out of. My balance is pretty poor, so I needed a really stable buggy.

There is no way of predicting how you will cope with a baby. But to be honest - you've been ill for 11 years. You've coped with much more than this. And everything a baby gives is so so worth every ounce of flare up. My son is three now. I can't run around with him, and some days are partially parented by cbeebies. Simply, he knows no different. He doesn't know that mummy used to be able to run, he knows that mummy needs a stick. He is wonderful, and understanding, and I truly believe that if anything it has made him more compassionate. He knows mummy has a lot of pain and that she has to see a lot of doctors. Its just simply part of his life. I'm telling you this because I've always been concerned about how my disabilities would affect him - I still have down days, low days, flare days, but I have found comfort in watching my son grow.

There used to be a group of us sufferers on here, but I've only just got back online from nearly two years off. So maybe we can get it going again :)

Thank you SO much for your replies Mrs Aitken and SirBoobAlot!

Your replies have already made me feel confident that I am not alone and that it is possible to have a baby with M.E
I can't stop thinking I might be pregnant, for the last 3 months I was convinced. But then, it's so hard because loads of pregnancy symptoms are M.E/C.F.S symptoms too! This week I'm shattered (more so than usual), so keep wondering again! Can't stop thinking!

I've been doing CBT to help with my GAD and Panic, which seems to be helping.
Also, am proper worried about my mum's reaction when I do get pregnant and tell her. She finds it really difficult to see me as healthy, and, obviously, is always concerned I'm doing too much (Fair play to her, she saw me through a lot of s*!). I know she wants us to wait to have children, but we definitely think it's the right time. It's so hard when you have people close to you telling you you need to be extra careful and giving you that look (the one where you can tell they think you're being crazy; I got that when I told mum we were getting married whilst I was still at uni!)

I dunno, I just want to have a happy and healthy pregnancy and child without any of that illness, anxiety and panic!
Hearing from you two has been great. Honestly. I already feel that I can do it as others have (sometimes feels like I'm the only one!)

Love Lxx

I've recently started doing slightly more, helping my friend out with his business - and its been superb for my self confidence. Of course I've got it in the neck from mum about doing too much, so I don't think that ever changes