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Thread: Pregnancy and chronic illness

  1. #1

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    Default Pregnancy and chronic illness

    (I'm not pregnant but planning) anyone here been pregnant with a chronic illness? Would you do it again? Was it a bad idea? How did your body cope?

  2. #2

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    Default Re: Pregnancy and chronic illness

    I have a chronic illness since I was almost 4. I fortunately have not had any deterioration with it at all during my pregnancies. I could even say that it had improved with 3 out of my 5 but does return with a vengeance when my babies have been a few months old. The worst of it is the fatigue as it causes chronic pain and I either can't get to sleep with pain or I'm woken with pain multiple times a night. Then I have added medical costs and travel to see my neurologist when I'm having a flare up.
    I have had to live like this as long as I can remember so I can't say pregnancy has impacted on it at all.
    On the other hand if my condition meant I couldn't care for my children and would need to rely on someone else to care for them I'd have to seriously ask myself what I could offer another child and was I only having them for me if that makes sense.

  3. #3

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    Default Re: Pregnancy and chronic illness

    I have a chronic illness. It would have been a real consideration in deciding whether or not to have a baby as I get a lot worse without sleep and pregnancy itself can also make it a lot worse. So I would have been quite concerned about how I would handle it and whether I would be able to care for the baby. However my first pregnancy was unplanned and I turned out to be one of the lucky ones where pregnancy actually greatly improves rather than worsens the condition. So I ended up coping very well and by the time my symptoms returned with a vengeance I had a good plan of action in place with my doctor and we were able to handle it better given the insight provided by my reaction to the pregnancy.
    Then once we decided to have another I was quite looking forward to the break I was expecting from my chronic illness during the pregnancy. Unfortunately the second pregnancy didn't quite work out the same as the first . Though it still didn't make things much worse than they had been.

    I think it really depends on the particular illness, how it is expected to interact with pregnancy, and what your own expectations are and what you're willing to accept.

    Of course there's always a large element of the unknown, particularly with some chronic illnesses. I have postural orthostatic tachycardia syndrome and it's not yet very well understood, probably actually a few different things grouped together. While I was lucky and my condition greatly improved with my first pregnancy and was only moderately worsened by my second, I know someone else whose condition was greatly worsened by her first pregnancy to the point were she spent a lot of time in hospital and was not able to care for her son for his first year.

  4. #4

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    Default Re: Pregnancy and chronic illness

    Yes this is true currently I manage with the children with the odd time needing help I am planning ahead here so both the kids will be in school by the time this happens and I'm hoping my health will improve or at least have some more understanding I also have POTS in conjunction with chronic fatigue, ehlers danlos and reflux so I am focusing on how to get better but with these being pretty much not understood and untreatable I'm wondering if it doesn't go away would I still get pregnant I also had severe post natal depression after both kids which I'm pretty confident it I start medication from the babies birth I should manage ok instead of the prev 2 times where I started medication 6months after when I was feeling horrible

  5. #5

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    Default Re: Pregnancy and chronic illness

    Sounds reasonable. I think the most important thing is to look at it realistically and review (as much as you can) the possible eventualities and make a plan in consultation with your family and care providers.
    POTS is a lot better understood now than it used to be. It took me 10 years to get diagnosed and the neurologist who finally diagnosed me said there wasn't really anything they could do. But the doctors I've had over the past 8 years have been much more confident in being able to offer some improvement in symptoms and have had quite a large reserve of possible treatments to work with. I'm not entirely sure if this is just an Australia versus the Netherlands thing (I guess I'll find out when I move back to Oz in a couple of months). If you want to talk more about it feel free to PM me.
    Good luck working towards better health!!!

  6. #6

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    Default Re: Pregnancy and chronic illness

    So far Australia has been pretty useless in these things there just guessing pots because I have ehlers danlos they don't actually know what's wrong with me what is your treatment ? They just told me to increase my salt and water consumption

  7. #7

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    Default Re: Pregnancy and chronic illness

    Have you done a tilt test? You can do a poor man's version yourself if you want (lie down for a while then stand up while measuring your heart rate for 5-10 minutes (if you can)). An increase of more than 30 beats per minute is indicative of pots.
    I'm actually just on extra salt and water with an exercise regime at the moment as that's enough at the moment. I'm also still breastfeeding and I find I do much better while breastfeeding.
    I have also found betablockers to help in the past. There are a whole range of medicines available now. If you haven't already you might want to have a look at the DINET website. They have a good overview of different medicines, and also recommendations for doctors with experience with autonomic nervous system problems, and information you can point your own doctor to.
    I'd heard the recommendation to increase salt and water before but I never really got any benefit from it until I did it with supervision from my doctor. We found I actually need to have around 3.5L of water a day and considerably more salt than i was (I was on salt tablets for a while).
    Increasing salt and water is definitely the first and easiest thing to try. The idea is to increase your blood volume so that you are less bothered by drops of blood levels to your brain.
    There are also exercises you can do to help strengthen muscles to help the blood keep going to your brain, really any general cardio (you can do it lying down too) and resistance training for your legs will help but there's also a specialized program made by Dr Levine.

  8. #8

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    Default Re: Pregnancy and chronic illness

    I have a chronic illness and have had 3 babies. I don't do pregnancy well, however my medical condition does improve during pregnancy, particularly when I am sick with morning sickness (you win some, you lose some!) None of my pregnancies were planned, and I don't know if I would consciously plan one, but I am happy they happened.



    Post birth, my illness flared majorly and this lasted for about a month. I was fortunate to have a partner who could take time off, because I couldn't have coped with toddler and baby for the first few weeks.

    My youngest recently weaned, and I had had over 6 years of pregnancy and breastfeeding. My illness flared again spectacularly and this lasted a couple of months. This was scary because I didn't know how long it would go for. Although we are not planning any more kids I would be pretty scared to do it again because I don't know if my body would cope with another cycle of hormonal ups and downs.

  9. #9

    Default Re: Pregnancy and chronic illness

    I have a chronic illnesses....one kidney...spina bifida anx prone to UTI etc...and after having my first child I found out i had an autoimmune disease hyperthyroidism/ hashimoto...now my son is 5 and want another but not sure if i want to do all that again but i want a second and I'm getting mix reviews with medical doctors. Im nervous about doing it again but I really like to have another child.

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