We were so happy and excited when the pregnancy test turned positive last January. I made my husband go out and buy three more tests, just to quadruple check. We had been trying for a long time, and this seemed like a New Year’s miracle. It still does, and I’m incredibly grateful and excited!
Sitting here at 9 months pregnant and reflecting on my experiences so far, I am reminded about how individual our symptoms of illness are, and how this must be true for pregnancy too. However, I hope describing my own experience offers some insights that might be useful for others. When I first tried to find online information or shared experiences in blogs or social media. I didn’t find much. It can be a frustrating and lonely journey sometimes. Needless to say, OBs don’t know much about chronic pain or illness!
How will my illness affect my pregnancy? How will my pregnancy affect my illness? These questions are difficult to answer with certainty. I was very frustrated before I became pregnant that nobody was able to tell me for sure what it might be like, and I felt like I couldn’t prepare properly. Part of the reason that it is hard to answer this question is because pregnancy sometimes alleviates illness symptoms, while other times it makes them more intense. In either situation, however, pregnancy outcomes appear to be normal for women with fibromyalgia.
Pregnancy can improve some illness symptoms! For example, as a result of the protective effect of pregnancy hormones, some people with autoimmune conditions report symptom remission during pregnancy. “During pregnancy your body is less immunosuppressive because it’s making sure not to reject the fetus,” says Dr. El-Chaar. Dr. Howard Sharp, an OB-GYN at the University of Utah Health Sciences Center, where he heads the Pelvic Pain Clinic, explains, “The immune system kind of goes on holiday during pregnancy, which is beneficial to patients,” and so, some women may find their fibromyalgia symptoms actually improve during pregnancy.
Improving symptoms has been my experience for several specific symptoms. For the first time in years, I am able to do what my husband does so irritatingly well: fall asleep as soon as my head hits the pillow. (I also bought a magic adjustable bed base, but more on that in a future post!). For me, sleep has been surprisingly good, even at this late stage when I am more uncomfortable with the pregnancy.
My right knee has been problematic for several years (“patellafemoral syndrome”) and often swells if I over-do things, making me limp. However, I haven’t limped since I became pregnant, despite my increasing weight.
I normally experience pelvic pain, from endometriosis and ilioinguinal neuralgia. This pain has been so much better, maybe from the absence of menstruation, which is a relief.
Overall, my musculoskeletal pain is probably similar to my pre-pregnancy baseline, but it’s different now. Instead of the neck and upper back pain that used to plague me, now I have shin splints and mid-back achiness. My SI joint is easily aggravated, as usual, but my usual glute pain doesn’t bother me. Seeing a pelvic physiotherapist has been incredibly helpful for managing my SI joint pain, and preventing pelvic pain associated with pregnancy
On the other hand, pregnancy has made my other fibromyalgia symptoms worse. My fatigue is substantially higher, especially in the first and third trimester. I need to alternate 2-3 hours of wakefulness with an hour of rest in order to be semi-functional during the morning or afternoon. I now take 2-3 naps instead of 1 per day.
Correspondingly, my brain fog is much foggier, especially around planning, remembering tasks, and follow-through. Entire conversations are sometimes deleted from my mental hard-drive! I also think that I’m more easily overwhelmed by sensory stimulus or chaotic environments.
I have GERD (acid reflux), which overlaps with fibromyalgia. It’s worse in pregnancy, of course, but I also found that it made my nausea and food aversions in the first trimester really terrible. I ended up losing 13 lbs overall! Take nausea and reflux seriously, and get treatment if you are losing weight or it is not bearable. My digestive system got in on the fun as well (all I will say about that is take your fibre and probiotic religiously).
Internal temperature regulation is even more screwy for me, during pregnancy, than usual. I overheat, feel sweaty or clammy, or get chills all the time, and frequent outfit changes seem to be a part of my daily life. I made my maternity outfits more affordable by only shopping at sites like Old Navy or H&M.
Overall, my musculoskeletal pain is probably similar to my pre-pregnancy baseline, but it’s different now. Instead of the neck and upper back pain that used to plague me, now I have shin splints and mid-back achiness. My SI joint is easily aggravated, as usual, but my usual glute pain doesn’t bother me. Seeing a pelvic physiotherapist has been incredibly helpful for managing my SI joint pain, and preventing pelvic pain associated with pregnancy.
My overall functioning is reduced, and I’m more dependent on my husband now. I find standing still to be very uncomfortable (walking is better), so this makes cooking or shopping impossible. We order everything via delivery instead of shopping, and my husband was prepared to do most of housework, which really helps. I was able to walk about 3500 steps per day, and now I’m down to about 1500.
I have fun new pregnancy symptoms like nosebleeds (bring tissues everywhere!), bleeding gums, dizziness (always hydrate!), leg cramps, and swelling, which are a pain to manage on top of all the rest.
I am not alone in experiencing some worsening symptoms. One study[i] found that pregnant women with fibromyalgia experienced worsening:
- Pain, especially in the low back, chest, abdomen, and legs
- Physical disability
- Fatigue and unrefreshing sleep
- Muscle weakness
- Cognitive dysfunction
- Frequent urination
Top TIps for Managing Fibromyalgia Symptoms During Pregnancy
In the big picture, I am so grateful for the new life growing inside of me. Feeling her move and grow brings me so much joy. However, pregnancy is also a time of stress. It can be overwhelming and draining to handle day after day. That is so much more true for people with a chronic illness.[ii] I’ve become more hyper-vigilant about my symptoms, because there is more to manage, and that is an extra burden. It’s a relief when we can take the pressure off of ourselves to always feel blissed out on pregnancy hormones, happy and expectant, and instead acknowledge that growing a new life is hard work, especially when you have an illness! Returning to the reason I’m going through this, the love I feel for this little one, helps me keep going on tough days. On the whole, I have to say that pregnancy has been much more bearable than I was worried it would be. I was prepared to be essentially bedridden, but instead I’ve been able to keep up with planning and preparing for our baby, and even doing a bit or writing here and there! It makes me feel more positive about my body, and the amazing things it is able to do.
Here are my top tips for managing symptoms during pregnancy:
- physiotherapy/ physical therapy, especially pelvic if possible
- Biofreeze topical menthol rub or menthol patches
- gentle movement like walking or stretching (I have modified my stretches to do in a chair or the bed as opposed to on the floor, which is too uncomfortable for me)
- proper supports for sitting, like a back rest or office chair
- braces like a belly band or SI joint brace for activity
- sleeping with supportive pillows or adjustable bed base (I find being in a semi-upright reclining position most comfortable, others use body pillows or wedge pillows)
- advocate for needed medication
For more information on how to prepare for and manage a chronic illness during pregnancy, here is an excellent guide from the March of Dimes. If you are interested in learning more about fibromyalgia and pregnancy, start here or here.
[i] Genç, H., Atasever, M., Duyur Çakit, B., Seval, M., & Koç, A. (2017). The Effects of Fibromyalgia Syndrome on Physical Function and Psychological Status of Pregnant Females. Archives of rheumatology, 32(2), 129–140.
[ii] Tyer-Viola, L. A., & Lopez, R. P. (2014). Pregnancy with chronic illness. Journal of obstetric, gynecologic, and neonatal nursing : JOGNN, 43(1), 25–37