So turns out the up side of being pregnant with Ehlers-Danlos is that I only had reflux (and shortness of breath when my stomach was full of gas) for a week or two. Then my rib cage expanded again and it went away. I’ve been doing some isometric upper body exercises my chiropractor recommended, that plus avoiding lifting too much and wearing my rib belt seems to have the back pain from the rib expansion under control. I finally thought to measure my rib cage and I was either a 32 or 34 in bra band before and am up to 35.75 now. It’ll be interesting to see how quickly it drops after the baby comes (if it does, the chiropractor might have to help with that). My ribs definitely went through two levels of expansion, since first I couldn’t fit (band wise, not cup wise) into my regular bras, and then the ones I got to sleep in that were loose fit just right. Those sleep ones are now tight, but it works out since they help hold my ribs in place some, so I don’t always have to have my rib belt strapped on.
My stomach finally got big enough that I had to go back from the new 4″ rib belt to the old 2″ rib belt. I use the 4″ one around my hips sometimes, not that it seems to help a ton. I also had to get the seat cushion with the tailbone cutout for riding in the car and sitting on chairs when we’re out an about (especially restaurants). It definitely is a big help since my tailbone was starting to get pretty painful.
Recent updates, about 3 weeks ago my hips went from being fairly stable with the pool exercise and weekly chiropractic to needing my husband to adjust them daily. And earlier this week they got looser again and now need adjustment multiple times a day. Yesterday I started getting this weird thing where my right hip gets hot. I don’t know if it’s a blood flow thing or a nerve thing. Thankfully it’s not painful, just odd.
I’m now 40 weeks and 6 days. No obvious signs that he’s going to make his appearance, but my mom’s labor with me (first child) was 6 hours, so I might not get much warning when he decides to show up.
Varicose veins and piles are my other issue, but they don’t itch/hurt and are pretty normal during pregnancy, so I’m not sure I’d blame them on the EDS. Same goes for the allergy developments (can’t wear metal rings, had to buy 100% cotton underwear and pants). I do finally have a new craving – peanut M&M’s. It’s not super strong though, and I’ve always loved them, so liking bananas in the first two trimesters is still my “weirdest” food craving.
I’m also in the last month getting more edema in my legs down to my ankles, but my feet haven’t spread out or swollen yet – though I don’t spend a ton of time standing, they get painful pretty quickly if I do. Especially if I don’t wear my slippers or shoes to provide cushioning. I think I’m pretty safe to assume my shoes will continue to fit after the pregnancy.
I don’t think I’d consider myself a pregnancy unicorn – I’m not having any of the glowy happy earth mama woman power type feelings, but I’m definitely a pregnancy zebra in that it’s been really physically easy. But only because my husband is able to support us so I don’t have to work, and because he’s been able to do 100% of the driving. Those two things have allowed me to avoid doing anything to exacerbate my joints – otherwise I’d probably have been in severe pain throughout the pregnancy. I over did it a few times getting the yard/house ready, so I have a good idea of how miserable it could have been if I’d been in pain like that daily.
I’ve been lucky that the increased blood volume has almost completely cleared up my POTS – gonna miss that when it goes away, but I’m hoping it doesn’t come back as bad as it was now that I’ve been exercising in the pool.
My migraines cleared up around the middle of the second trimester, we’ll see if I get lucky and they stay gone.
Even my digestive system is doing better than ever – most likely due to eating a bit healthier, all the fiber pills, magnesium, pre & probiotics and HCL.
So all the things I thought pregnancy would make worse, actually got better instead except for my joints. And even those were improving more than pre-pregnancy (with the pool exercise) until this last month. Gardening is the only thing I’ve really missed (I hate driving anyway) that I’m looking forward to getting to do again once the relaxin production goes back to normal pre-pregnancy levels.
Since I did a lot of searching and only a little finding, I figured I should share my experience with being pregnant and having EDS.
I already had POTS, and so far (week 20), it’s been waaay better since getting pregnant. Probably due to the increased blood volume.
I started having some round ligament pain in week 6-7. It’s just started getting at bit worse around week 18-20.
Week 21 starts tomorrow and I’ve just started to have back pain yesterday and low back pain today. And I was holding my lower abdomen a lot, so probably time for a belt already even though my stomach isn’t very big yet.
I don’t have vascular EDS, we got the gene test to be sure. So far pre-term labor is the only risk the doctors have mentioned.
My joints are looser and so far I’m needing to see the chiropractor weekly (he uses a drop table, not adjustments – no crunching!) and he’s taught my husband a couple things to do at home that help. I can’t drive more than 5 minutes without joint/back pain, so needing a ride to every appointment has been the worst thing so far. Even walking messes up all my joints, so I’m having to stick to swimming. And grocery shopping I have to keep short and I still hurt by the end of it from walking.
I’m having new pregnancy migraines that a nap on my tempurpedic with a heat pad on my head seems to cure. Napping on other beds with the heat pad didn’t help, had to get some cranial sacral work done instead. Working on the muscle/ligaments that connect from the clavicle to the skull helps too. So I think these migraines are EDS related.
I’ll try to make more updates as things progress.
Normal pregnancy stuff: first trimester fatigue, increased sensitivity – so more contact dermatitis.