My Experience with Fibromyalgia and Breastfeeding
Rita Brhel, Hastings, Nebraska
I have fibromyalgia. I breastfed with fibromyalgia, and I’ve supported many mothers with fibromyalgia as they breastfed. Breastfeeding with fibromyalgia is challenging, to say the least.
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” is a good word to describe fibromyalgia. I am fortunate to have found a treatment regimen that works well. Unfortunately, that is not the case for many with fibromyalgia, and often even the best treatments don’t work 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. If I stayed in one position for too long, it caused even more pain and stiffness and inactivity. This leads to deconditioning, which just compounds the fatigue. Breastfeeding often means needing to stay in one position for that nursing session.
- 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 mothers, whether or not they are breastfeeding.
- Increased fatigue with pain flares. Fatigue goes hand-in-hand with fibromyalgia, but as the pain and stiffness increase when there is a 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 mothers at higher risk of breast infections. I know one mother with fibromyalgia who has battled mastitis seven times in the nine months!
In addition, the medications used to treat fibromyalgia aren’t necessarily compatible with breastfeeding. You even have to be careful with supplements.
When I was breastfeeding, I wasn’t able to take many of the medications available for fibromyalgia, and the ones I could take only provided partial relief on my good days and basically no relief when I experienced flares. After talking with my doctor, I did find it helpful to take a high-quality multivitamin along with other supplements. 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.
Here are five more lessons I learned from breastfeeding with fibromyalgia:
- Take Advantage of Hormones.
Not only does breastfeeding release hormones—like oxytocin, which helps with the pain of fibromyalgia—it also lessens the hormonal ups-and-downs that occur after giving birth. This not only helps to prevent or reduce postpartum depression. With fibromyalgia, there is an overall increased risk of clinical depression. It also helps reduce fibromyalgia flares.
Because fibromyalgia tends to flare with hormonal changes, I was not surprised that a fibromyalgia flare was more severe when my toddler self-weaned and gave my hormones more of a break than if weaning had been abrupt.
This is a great overview from La Leche League about postpartum depression and how it is affected by, and affects, breastfeeding: www.llli.org/llleaderweb/lv/lvaugsep05p75.html.
Staying in one position for too long, as in the case of breastfeeding, did increase the pain and stiffness, especially in my joints. I found that side-lying breastfeeding—while most helpful overnight—was more difficult for me in flexing stiff joints. Laid-back breastfeeding worked best for me during the day when I reclined on my cushy couch with my feet up—a position that I still refer to as my “couch therapy.”
An overview of different breastfeeding positions can be here found on the La Leche League website.
- Beware of Thrush.
Fibromyalgia flares did reduce my immunity, and I had a lot of problems with recurrent thrush. Yeast infections are also more likely to occur 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 when my son was one year old, I was able to breastfeed—without pumping—until my son self-weaned at three-and-one-half years old.
Thrush by itself, without fibromyalgia, is tough to deal with but, for more people, treatments are very effective, as this LLL article explains: www.llli.org/llleaderweb/lv/lvoctnov98p91.html.
- 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 veins constrict, causing the blood to stop flowing temporarily. In cold weather or during stress, Raynaud’s symptoms commonly affect fingers and toes. 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. Another 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 and techniques that may work for mothers with nipple vasospasms which include: wool breast pads (or a soft cloth diaper) to keep the nipples warm between feedings, use of a warm compress prior to latch and after breastfeeding, and a prescription medication from your doctor. Staying warm during winter months is always a challenge for me as I spend much time not feeling my toes due to fibromyalgia and Raynauld’s. Healing any nipple trauma and keeping my nipples warm especially after a nursing session helped to reduce vasospasms.
Here is another mother’s story of her experience with nipple vasospasms: www.llli.org/nb/nbjulaug99p120.html.
Cosleeping was probably the number-one parenting practice that helped me to breastfeed successfully while better managing fibromyalgia. Lack of sleep affects my fibromyalgia in a big way! If fibromyalgia is under control, getting a poor night’s sleep can easily bring on a flare. By cosleeping, I was able to get the most sleep when I had a newborn.
To further help sore muscles and joints, I placed a pillow behind my back and between my knees, to make the sleep surface a little more comfortable without creating an unsafe sleep environment for my baby. According to James McKenna, PhD, a researcher and expert in mother-infant sleep, cosleeping is safe as long as mother and baby are exclusively breastfeeding and certain sleep environment guidelines are followed: www.llli.org/sweetsleepbook/thesafesleepseven.
These tips are what worked for me. Each mother’s experience is unique. Each plan to manage pain and fatigue will also be unique.
Looking back, the one thing I would have changed about my experience of breastfeeding with fibromyalgia is to find support from other mothers who were breastfeeding or had breastfed with fibromyalgia. I did utilize general breastfeeding support from LLL Leaders, La Leche League International’s articles and discussion forums, online resources, and local International Board Certified Lactation Consultants.
At the time, I assumed I was the only person going through the experience of breastfeeding with fibromyalgia. Local LLL Groups are a great place to share experiences and ask questions regarding breastfeeding. You may even find at least one other mother in the LLL Group who has fibromyalgia or knows a breastfeeding mother who has fibromyalgia.
It’s important for other mothers to know that fibromyalgia can be a common medical condition. With the spread of information and support specific to breastfeeding with fibromyalgia, resources will be more available and easier for mothers to connect to one another.