“Challenging” is a good word for breastfeeding with fibromyalgia.
I have fibromyalgia. I breastfed with fibromyalgia, and I’ve supported many moms with fibromyalgia as they breastfed.
Fibromyalgia is a chronic medical condition affecting the nervous system, characterized by widespread, significant pain and tenderness in the muscles and soft tissues, joint stiffness, sleep disturbance, and debilitating fatigue. “Debilitating” — that’s a good word for fibromyalgia.
I have times when my fibromyalgia is well under control. Other times, like today, not so much. Even the best treatments don’t work so well in the early years after childbirth because fibromyalgia tends to flare with hormonal changes.
In looking at the key symptoms of fibromyalgia, there are several ways that breastfeeding can create challenges:
- Increased pain and stiffness with inactivity – Exercise can be difficult for people with fibromyalgia, due to fatigue, pain, and stiffness, but staying in any one position for too long can cause even more pain and stiffness and inactivity leads to deconditioning, which just compounds the fatigue. Breastfeeding often means needing to stay in one position for that nursing session, and that can be long enough to cause more pain.
- Increased pain and stiffness with lack of sleep – While fibromyalgia has its own sleep issues that predispose a person to wake frequently at night or not reach deep sleep, waking at night to care for a baby just adds to the sleep disturbance. However, this would apply to all moms, whether they are breastfeeding or not.
- Increased fatigue with pain flares – Fatigue goes hand-in-hand with fibromyalgia, but as the pain and stiffness increase (aka, flare), so does the fatigue. And fatigue at this level causes stress to the body, which can then temporarily decrease milk supply. Severe fatigue also lowers immunity, which can put breastfeeding moms at higher risk of breast infections. I know one mom with fibromyalgia who has battled mastitis 7 times in the last 9 months!
To top that off, the medications and supplements used to treat fibromyalgia aren’t necessarily compatible with breastfeeding.
When I was breastfeeding, I wasn’t able to take many of the medications available for fibromyalgia, and the ones I could take only gave me partial relief on my good days and basically no relief when I was flaring. I did find it helpful to take a high-quality multivitamin and other supplements that I discussed first with my doctor. When I was flaring, heat pads, TENS (transcutaneous electrical nerve stimulation) therapy, and water therapy helped reduce pain. It was also critical for me to take a Vitamin D supplement, as my blood levels were constantly low while I was breastfeeding, and a Vitamin D deficiency is associated with increased pain.
There were also choices in how I parented my babies that helped with managing my fibromyalgia symptoms. Between breastfeeding and bottle-feeding, breastfeeding was just plain easier. I didn’t have to expend extra energy to wash pump parts and bottles, and breastfeeding at night lended me more sleep than bottle-feeding.
Here are 5 more lessons learned from breastfeeding with fibromyalgia:
1 – Take Advantage of Hormones
Not only does breastfeeding release hormones, like oxytocin, which helps with the pain of fibromyalgia, but breastfeeding smoothed my hormonal ups-and-downs that come with giving birth. This not only helps to prevent or lessen postpartum depression, which a risk of people with fibromyalgia due to the stress of the condition and a somewhat increased overall risk of clinical depression, but also helps reduce fibromyalgia flares.
Because fibromyalgia tends to flare with hormonal changes, I was not surprised that my fibromyalgia flared the most severely as my toddler was weaning. But at least he self-weaned, giving my hormones more of a break than if we stop breastfeeding suddenly.
2 – Experiment with Positions
Staying in one position for too long, as in the case of breastfeeding, did increase my pain and stiffness, especially in my joints. I found side-lying breastfeeding — while most helpful overnight — to be more difficult for me in flexing stiff joints. Laid-back breastfeeding worked best for me during the day, as I would recline back on my cushy couch with my feet up — a position that I still refer to as my “couch therapy.”
3 – Beware of Thrush
My fibromyalgia flares did reduce my immunity, and I had a lot of problems with recurrent thrush. Yeast infections are also more likely in mothers with fibromyalgia.
Because I am allergic to systemic antifungals, I relied heavily on alternative treatments, such as taking a potent probiotic, eating lots of yogurt, disinfecting pump parts and bottles with a vinegar solution every day, applying a vinegar solution to my nipples, and washing nursing bras, burp cloths, baby clothes and any other clothing item after every use, with vinegar added to the washing machine. I was finally able to get the yeast to clear from one breast but not the other, so for the treatment time with each recurrent episode, I resorted to breastfeeding only from the unaffected side and then only pumping the breast with the yeast infection. It was inconvenient, but it was worth it. Once I finally overcame the last recurrent yeast infection at 1 year, I was able to breastfeed – without pumping – until my son self-weaned at 3 1/2 years old.
Thrush by itself, not including fibromyalgia, is tough to deal with but, for more people, treatments are very effective, fortunately.
4 – Watch Out for Nipple Vasospasms
Another common co-occurring condition with fibromyalgia is Raynaud’s Phenomenon, which can cause nipple vasospasm. Raynaud’s happens when the veins constrict, causing the blood to stop flowing temporarily. In an affected person, Raynaud’s commonly happens in the fingers and toes in cold weather or during stress, but it can also happen to other extremities like the nose, ears, and even nipples.
Nipple vasospasms can and do occur in breastfeeding mothers who are not affected by Raynaud’s, and not all women with fibromyalgia also have Raynaud’s. In this case, nipple vasospasms are often, but not always, a secondary response to nipple pain or thrush.
Nipple vasospasms can make breastfeeding very painful. A hallmark of vasospasms is nipple blanching, where the nipple turns white after a feeding — but not coming out of baby’s mouth white — although the color change may continue from white to blue until returning to red. Another hallmark of nipple vasospasms is that the pain and blanching occur despite a good latch. Nipple vasospasms are often blamed on yeast, but antifungal treatment is ineffective.
There are treatments that may work for moms with nipple vasospasms including wool breast pads (or a soft cloth diaper) to keep the nipples warm between feedings, using a warm compress prior to latch and after breastfeeding, and a prescription medication from your doctor. Staying warm is always a challenge for me and I spend a lot of winter not feeling my toes, due to fibromyalgia and Raynauld’s, but healing any nipple trauma and keeping my nipples warm especially after a nursing session helped a lot with reducing vasospasms.
5 – Cosleep
Probably the number-one parenting practice that helped me to breastfeed successfully while better managing my fibromyalgia was cosleeping. Lack of sleep affects my fibromyalgia in a big way! Now that I have my fibromyalgia under control, the best way to bring on a flare is to get a poor night’s sleep. By cosleeping, I was able to get the absolute most sleep while having a newborn. Especially as my baby grew older and bigger, I was able to sleep through most of the nighttime nursing sessions.
I further helped sore muscles and joints by placing a pillow behind my back and between my knees, to make the sleep surface a little more comfy for me without creating an unsafe sleep environment for my baby. According to James McKenna, PhD, the nation’s utmost researcher and expert into mother-infant sleep, cosleeping is safe as long as mother and baby are exclusively breastfeeding and certain sleep environment guidelines are followed as provided by this guide from La Leche League International.
My One Regret? Not Finding Support
This is what worked for me, but just as every person is unique, each person who suffers from fibromyalgia will have to find their own combination of what works for pain and fatigue management.
Looking back, the one thing I would’ve changed about my experience of breastfeeding with fibromyalgia is to find support from other moms who were or had breastfed with fibromyalgia. I did utilize general breastfeeding support a lot, but I had wrongly assumed at that time that I was the only person going through the experience of breastfeeding with fibromyalgia.
It’s important for other moms to know that fibromyalgia is a common medical condition, and as breastfeeding education and support spreads, and therefore more moms are breastfeeding, support specific to breastfeeding with fibromyalgia will become more available and it will be easier for us to find one another.