Chronic Illness and Pregnancy – 24 Weeks In

Living with chronic illness(es) involves tackling a whole host of challenges. Being pregnant comes with its own set of challenges. When you put the two together...well, my experience (so far) has not been that the challenges are multiplied or compounded. More like they are shifted. And it has become more and more difficult to pinpoint if certain symptoms are illness-related, pregnancy-related, or neither.

From research I've been doing for many months, probably actually over a year, it seems that when it comes to Lyme disease (and some other chronic illnesses) and pregnancy, women often feel much better when they are pregnant for a few reasons. One of these is that your immune system is suppressed so that you don't reject the pregnancy since the baby is technically a foreign body. With a suppressed immune system, symptoms that are more autoimmune or due to an overactive immune system tend to get better. Although I can't say for sure that this has happened with me, I have found that a number of things have gotten better.

Even while being off of basically ALL of my headache medications, I have not seen a worsening in the frequency or severity of my headaches and migraines. Yes, I still get them and there is a bit more of a challenge figuring out how to deal with and treat them since virtually all pain killers and certainly all migraine medications are not safe during pregnancy. So tylenol and some caffeinated drink have become my go-to when I do get a more severe headache. And a nap (if I'm able to take one) seems to be a help, too.

My fatigue level, which has always been one of my biggest issues, has been a bit more of a challenge. First there was the first trimester fatigue that left me unable to do much of anything without an obscene amount of sleep. I was taking at least one nap a day and usually ready for bed before 8:00pm. Thankfully once I got out of the first trimester, that level of fatigue lifted to an extent but I still have somewhere near my “normal” level of fatigue that I dealt with pre-pregnancy. I had been taking a supplement to help with my energy which was helpful but stopped it very early in the pregnancy because a) the morning sickness made it difficult for me to take more than just the bare minimum of medications and supplements and b) there isn't much information about taking it in pregnancy so my doctor and I decided it would be better if I didn't continue it. Do I notice a difference without it? Maybe. But it's so hard to tell what the cause of so many things is when there is so much going on.

Now we get to my dysautonomia. If you are unfamiliar with what Dysautonomia is, this is a basic description of it from the website of the Dysautonomia Youth Network of America (DYNA):

Dysautonomia is an umbrella medical term utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A dysfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. Orthostatic intolerance (the inability to remain upright) is a hallmark of the various forms of dysautonomia.

The form of dysautonomia I've been diagnosed with is called Neurocardiogenic Syncope (NCS). I probably more specifically have hypotension rather than syncope because I don't pass out, but I would if I didn't know how to read the warning signs I have and get myself sitting or lying down in time. The symptoms I deal with on a regular basis are dizziness/lightheadedness, nausea, fatigue (yep, it shows up everywhere), shortness of breath, brain fogginess, and less often I experience diminished/loss of vision and hearing when I get close to passing out. The treatment that I have been on for more than 7 years after medications failed to help is daily IV fluid which I administer at home through my port-a-cath. Originally I was getting 1 liter a day but after a few years it was increased to 2 liters and amino acids were added to help me maintain a good nutritional status. This is where it gets interesting.

At first in my pregnancy, it seemed that I needed the fluids more than ever. I was continuing to infuse 2 liters every day and still struggling with symptoms. Maybe things were made worse from the morning sickness I was slammed with or just my body adjusting to being pregnant, but regardless of the reasons I was feeling pretty sick. But then as time went on, I started experimenting with skipping days of fluids. And amazingly I found that there wasn't a big difference with how I felt with or without the infusions. So I started reducing the number of days I was getting the IV fluids (my doctor has given me the green light to do this) and got to the point where I only seemed to need it a few times a week. The longest stretch I've gone between infusions (which just ended yesterday) was well over a week (I believe it was more like a week and a half). There are definitely days when I feel like I probably SHOULD do an infusion, but I just love the freedom so much that I push myself through that and have been managing pretty well. I know I can't keep this up forever and I will need to continue to do fluids here and there to maintain a good level of health, but it's great to have so much more flexibility with it.

The most likely reason that I have been doing better and not needing the regular IV infusions is due to the increased blood volume that happens during pregnancy. One of the possible causes of dysautonomia conditions (and one that we highly suspect I have) is low blood volume. This means that there isn't enough blood to circulate well and keep sufficient blood flowing to all areas of the body, including the brain. With the pregnancy-induced increase in blood volume, the hope was that my dysautonomia symptoms would get better and I might not need the fluids all the time. At first we didn't think that was going to happen because of my worsening symptoms, but it seems that it just took a little time. This could very well mean that once the baby is born and my blood volume decreases again, I could have a really difficult time adjusting so we'll just have to plan the best we can and make sure I have plenty of fluids to hopefully keep me stable.

Overall, at 24 weeks pregnant things are going really well. I know there will continue to be challenges, but in the end it will be worth it all. Every time I feel my son move around or kick me, I can't help but smile knowing all that I've overcome to get to this point.