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Becoming pregnant & dealing with ME/cfs

(3 Posts)
FoggyHeadWobblyLegs Sun 07-Jun-15 16:16:01

Hi there, I'm new to mums net after I started doing some research into pregnancy/parenting & me/cfs & I came across a really great thread with women with talking about their experiences. Me & my partner are now at the point where we really want to try for a baby & although we know it won't be a walk in the park (my walking is very limited & I use a wheelchair quite a bit so pardon the pun!) I have found so much great advice & reassuring stories online & also glad to know I'm not alone with this horrible illness or the desire to be a mother on top of everything.

The one thing that has been a concern for me & my partner is coming off the pill & how my body is likely to react. I haven't had a break from it in 18months-2 years as when I had a period it set me wayyyy back because they were so heavy & painful. My partner is really worried that the even keel I'm currently on will be wiped out if I start having to cope with them again but there's really no alternative is there? And I am worried about being able to conceive so want to come off the pill sooner rather than later.

What have other people's experiences been? Any help, stories, advice, messages are all greatly appreciated!

*****
Background - ill since mid 2011 (22yr old), more on the severe end of the scale but on a more even/manageable keel the past year. Been on the pill since 15, been on many different types, currently cerelle. Turning 26 next month & would ideally like to be pregnant within the year.

Penguinandminipenguin Sun 07-Jun-15 17:37:03

Hi smile

I have M.E/CFS and I'm currently 32 weeks pregnant. It was a big decision to TTC for me and dh, as we both have the illness and we were concerned how we would manage with both the pregnancy, and a newborn baby.

Like you, I was on the pill for heavy/painful periods. I was very, very nervous about coming off it, as previously having a period would mean me needing to take time off work as the pain was just that bad. I made an appointment with the Dr and talked through my options. She gave me codeine for the pain, which I started taking from the day I was due on, even if the pain wasn't there yet (I also started to track my cycle in order to do this). She also gave me tranexamic acid for the bleeding, and there was another medication beginning with M (mefanamic acid perhaps?) that I tried which was amazing, but I was unfortunately allergic to it.

Luckily, the pain was never anywhere near as bad as it had been prior to me going on the pill. The dr said that maybe it was because I had been on the pill for so long or something, who knows. I did still get pains, but the medication helped to control it. So my best advice from that pov to you, would be to make an appointment with your Dr to discuss the best way forward really. (It then took us 18 months to concieve)

In terms of the M.E, the pregnancy has been really tough going if I'm honest with you. However, I believe I am in the minority, as many people notice reduced symptoms whilst pregnant. My issues were masked by severe sickness from 6 weeks, and then from 14 weeks I was exhausted. Not an M.E type exhausted though, this was something else entirely. My midwife/3 different Drs/consultant wouldn't listen to me - they just kept saying it was the M.E. After a huge battle, at 18 weeks I was diagnosed with anaemia, but then after even more battling, at around 26 weeks they realised my anaemia was actually really severe, as my ferritin level was only 6 (should be 70+). I believe had I not had M.E, they would have listened to my symptoms and what I was telling them, rather than just writing it off as M.E, if you see what I mean?

I guess the next part of our challenge is when we meet our baby in 8ish weeks time! I've gone on maternity leave early (at 31 weeks) as the M.E and anaemia have made it difficult, but that's by the by really. We have a lot of practical support from my side of the family. Only problem is they live 1 hour away, so we are going to stay there over the summer for 5ish weeks after the baby is born, just so we have a bit of extra support during the beginning whilst we're getting into a routine etc. I think that will help us both manage our M.E so much better.

Sorry, this has turned into a marathon post!! I just know what a strange time it is trying to decide whether to TTC with this illness, so thought I'd get out all of my experiences!! Good luck with whatever you decide to do.

FoggyHeadWobblyLegs Sun 07-Jun-15 20:01:53

Thank you, marathon posts are great! And congrats �� thanks for the advice, I'm allergic to codine but thankfully have had success with the other 2 in the past.

Aw that's rubbish about the anemia & the care you've had with it, definitely know what you mean about things being palmed off on ME without ruling out other things, thankfully my gp surgery are quite good & in the past have done tests just to rule out other causes.

We're also lucky to have a good solid support system which I think will make all the difference. It does seem like we can't just throw caution to the wind but no point dwelling on the negatives!
thanks again & all the best to you & your bundle! ����

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