An ME/CFS Pregnancy

18 Jun
Baby grows

© Jess Bruce 2016

Thank you so much for all your lovely comments on my last post about my baby news. It was so nice to hear from you both here on my blog and via social media.

This week I am 23 weeks pregnant and loving feeling our baby girl move more and more inside me. Whilst I was watching the England football game on Thursday she was going mad, not sure if this means she is a footie fan or not!

The big milestone this week was purchasing our first baby clothes which you can see in the picture, just so cute 🙂

Today I thought I’d write an overview of how my pregnancy has been in terms of my ME/CFS so far.

First thing to say is that ME/CFS is very much an umbrella term and very different for each sufferer and I have quickly learnt that pregnancy is equally unique and individual. No two pregnancies are the same. So if you’re reading this as a fellow ME/CFS sufferer who is pregnant or hoping to become so, don’t take what I say about my pregnancy and ME/CFS as a given, your experience could be totally different.

Before trying to conceive, as my ME/CFS was relatively stable and no longer severe, I was advised to gradually reduce my medications over 4 months. I wanted to do this anyway to see how well my body actually was without the medication masking symptoms. Despite some teething problems with withdrawal symptoms, I didn’t suffer a resurgence of symptoms and haven’t had to start taking anything again. (Please though, don’t reduce or stop medication without speaking to your own doctor first).

I had been told by my neurologist that some women with ME/CFS do really well during pregnancy, with  the surge of hormones meaning they feel better than ever with far fewer symptoms and much more energy; others however struggle with the impact of the growing baby depleting their body to such an extent that they deteriorate and relapse and for some there is no real impact with their level of functioning remaining the same. My consultant advised me to be prepared for the worst and then anything else would be a bonus.

For myself, I’m glad to say that, touch wood, so far so good and there hasn’t been any major relapse. I would however say that it has been a combination of the above, with my level of functioning varying at different stages of my pregnancy.

At the start I felt pretty good, with more energy and very little to complain of for the first 8 weeks or so. Even the bleeding I had at week 7 didn’t trigger more than a week of increased fatigue. Sleepy tiredness and fatigue (there is a definite distinction between the two) began to creep in towards the end of the first trimester but to begin with things were good.

As the first trimester turned into the second, things deteriorated both in terms of ME/CFS symptoms and issues with my pregnancy. And the two were most definitely linked. With all the bleeding and accompanying abdominal and back pain that I suffered weeks 12 – 16,  my fatigue and myalgia levels greatly worsened. I suspect this was due to the enormous stress and worry I felt about the bleeding and my ME/CFS wracked nervous system went into overdrive.

Time helped heal all of this, but there was a lag effect on the fatigue and myalgia with it lasting beyond when the bleeding stopped.

And to be honest, the fatigue, although improved and now not day in day out, is very much still worse for me than it was pre pregnancy. But that is a small price to pay for growing a little babe inside me and something I’m more than capable of adapting my life around. After 5 + years of ME/CFS I’m very used to it.

Leaving aside my pregnancy specific symptoms for a later post (there is of course overlap but clear differences too), here is a quick synopsis of the impact being pregnant has had on my ME/CFS symptoms:

Energy – better initially, then worse

Fatigue – worse as pregnancy has progressed

Myalgia – much worse weeks 11 – 18, now it’s about the same as pre pregnancy levels, probably slightly more prevalent as my fatigue is worse and the pain always spikes when I’m more tired. I suffered quite a bit with pain during our holiday to South Africa in March (11 weeks pregnant) but as I was doing more it was to be expected I guess

Sleep – good despite more wake ups during the night needing the bathroom and to change position / rearrange support pillows, most days I wake up feeling rested, some not so much

Headaches – worse until 16 weeks but settled touch wood, they were pretty bad and without being able to take painkillers really depleting on my energy levels, these cooling forehead strips are amazing

Dizziness – worse on getting up from bed and out of chairs until 20 weeks but better now

Anxiety – worse

Gastro – worse initially (iron in pregnancy vitamins did not help ) but now much the same as before i.e. my usual combination of regular and under control most of the time – provided I stick with my restricted diet and take my soluble fibre supplement (which I am still taking having okayed it with my GP) – and then unexplainable blips where bloating and constipation take over for a few very frustrating days.

So that’s my whirlwind tour of how I’m coping with ME/CFS and pregnancy so far. Next post I will talk about some of the extra maternity care and birth advice I have received as a result of having a medical history involving ME/CFS.

Do you have ME/CFS or another chronic illness? Are you, or have you been, pregnant? Please share your experiences in the comments below, I am very much learning as I grow!

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10 Responses to “An ME/CFS Pregnancy”

  1. Melissa June 18, 2016 at 8:53 pm #

    Glad to hear you got through the scary bleeding in those weeks! I have Fibromyalgia and therefore similar symptoms to you (of varying intensity) and despite huge lifestyle changes I never got much better than mild to moderate with symptoms impacting my life daily. Especially sleep is a big issue , I’m terrible at it. I’m currently 14 weeks pregnant and have slightly more energy but much more sleepiness. I don’t want to get up, spend the night tossing and turning but then have a bit of energy before I need to nap. The pain is worse due to the sleep issues as opposed to pregnancy yet, but my back did not enjoy the third trimester last time. Overall it’s a pretty miraculous thing that our bodies help us do and I’m holding on to that!

    • myjourneythrume June 19, 2016 at 8:31 am #

      It’s totally miraculous! In many ways I am in awe of my body. Congrats on your pregnancy! Sorry to hear you’re having issues with sleep, that is so hard, I know from periods when mine has fallen apart that it makes everything else spike when it goes. I have a giant pregnancy pillow which is helping me. It’s inspiring to hear you’ve done pregnancy before, it must be hard tho having a subsequent pregnancy, a little one to look after and symptoms to deal with. I like reading your blog, you’re right there’s a real gap in the info out there about pregnancy and these illnesses.

  2. Jackie June 19, 2016 at 2:22 pm #

    AHH!!! You’re pregnant!! Congratulations!!!!! I’ve been missing from the blogosphere, and this is such wonderful news to come back to!

    • myjourneythrume June 19, 2016 at 4:46 pm #

      Thank you Jackie!!!! I have missed your posts, I hope you are doing okay and are enjoying married life 😀

      • Jackie June 24, 2016 at 1:32 am #

        Thanks!

  3. thehomeschoolingdoctor June 20, 2016 at 7:39 pm #

    Oh, goodness. Your mention of headaches brought back memories of my last pregnancy. Those were not good. Couch city. Big time. Pregnancy pulls tricks like crazy. Let’s see what we can do today… 🙂

    Congratulations! Yippee!

    Terri

    • myjourneythrume June 23, 2016 at 8:19 am #

      That does not sound enjoyable. Pregnancy seems to be full of the weird and wonderful….Leg cramps are my latest discovery, not new as I had them when my ME was bad but not pleasant, woke up crying out in the night, don’t need an alarm clock with me around!

      • thehomeschoolingdoctor June 23, 2016 at 1:16 pm #

        Ha! You can ditch the alarm clock from now until about when they’re six or so. 🙂 Sorry about the cramps.

      • myjourneythrume June 23, 2016 at 8:06 pm #

        😀😆

Trackbacks/Pingbacks

  1. ME/CFS Maternity Care | my journey thru M.E. - June 25, 2016

    […] just wanted to say following on from my post last week, that although my ME/CFS is certainly more active with increases in symptoms at varying points […]

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