Mothers with EDS may be frustrated by providers unable to diagnose their reports of pain or system-wide disturbances [12]. Identifying characteristic of EDS and providing supportive care can improve the management of lactation challenges. For the ease of reference, the topics have been organized by relevant body system. Specific complaints or challenges are addressed under these body systems headings. Strategies pertinent to EDS management during lactation are shown in Table 2 [1, 3, 4, 6, 9, 14].

Table 2 Strategies pertinent to EDS management during lactation

Joints and muscles

In patients with EDS, dislocations and / or subluxations can occur with even the slightest pressure. For mothers with the syndrome, positioning a baby at the breast or supporting a breast heavy with milk can provoke such injuries. Routine tasks like hair washing may lead to shoulder dislocations with the breast weight changes associated with secretory activation in the early postpartum period. Even tasks which shift the weight of the breast, such as putting down the flap on a bra, or lack of support when latching the infant, can cause internal stress in the breast tissue [18]. On a microscopic level, subtle shifts of the increased mass of breast tissue can cause shearing injuries to the smallest areas of the circummammary ligaments [19] dispersed throughout the breast as superficial tissue moves in one direction while the deeper tissue moves in a different direction [20]. Educating mothers on multiple positions for breastfeeding and assisting them with guided practice during pregnancy can help mothers with EDS build confidence as well as identifying problem areas that may need bracing, such as wrists or fingers. The lactation specialist can help them create adequate physical support using pillows or blanket rolls to minimize strains and prevent injuries based on the mother’s needs. Techniques to reinforce appropriate posture and ergonomics can also address the difficulties for mothers who suffer joint strain due to lack of body awareness caused by the known proprioceptive abnormalities that may present in EDS [9, 21]. Preparation for infant care and practicing these tasks during pregnancy with slow, controlled strength conditioning can reduce injury risk with simple routine tasks or repeated motions, like putting on a bra, or picking up their infant, which can cause varying degrees of injury to the ligaments of the shoulder [22]. Reminding patients, who struggle with suspected shearing injuries, to support the breast while bringing the infant to the breast rather than bringing the breast to the infant can be particularly prudent to decrease the risk of circummammary ligament damage in mothers with EDS. While wearing a supportive bra, joint braces, proprioceptive garments, using physical supports, and regular, specific physical strengthening can decrease the risk of injury, it is important to plan for pain management [23] of injuries so that these mothers can be empowered with skills to optimize their situation. Establishing relationships with other care providers to create a health care team that includes ideally a physiotherapist and a nutritionist is important for the total care of these patients.

It is also important to note that EDS patients will often find positions such as tucking in their knees or crossing their legs provide temporary relief for muscle fatigue. These positions do slowly stretch out ligaments and tendons due to uncontrolled hyper-flexing during this muscle relaxation and can be damaging long-term if sustained for an extended period. Patients will often be unaware and should be educated and frequently reminded of these challenges to best initiate ergonomic posture strategies, particularly during feeding sessions. If left unchecked tucked in knees and crossed legs can cause further pain and joint instability.

Pain

EDS patients can have chronic pain, often from irritated joints and slow healing of injuries. This chronic pain requires appropriate pain interventions that serve to decrease pain intensity [24, 25]. Many women with EDS experience neuropathic pain and / or small fiber neuropathy [26]. Their connective tissue can be hyper-elastic without resilience and fragile, but the nerves are not hyper-elastic. This may be a cause of pain, particularly if latch is poor or the infant is pulled from the breast without releasing the latch pressure. Raynaud’s syndrome is also very common in EDS [27, 28] and can contribute to nipple and breast pain. Often, without awareness, EDS patients develop a fidget or erratic frequency to their movements to accommodate small muscle and nerve firings while protecting themselves from isolated muscle failure secondary to fatigue. It is common for EDS patients to have peripartum musculoskeletal [15] and visceral pain [29] which can be exacerbated by the surge of relaxin (which promotes connective tissue remodeling via increased collagen turnover) [30], essential for the ligamentous laxity necessary for pelvic flexibility to accommodate fetal development and vaginal delivery. While the surge peaks in the first trimester, it slowly decreases throughout the second trimester and maintains a stable level until parturition where it drops precipitously [31].

Although the relaxin level drops, the ligamentous laxity can persist into the postpartum period, compounding EDS symptoms, manifesting as pelvic floor distension creating pain or pelvic girdle discomfort. The weight of a lactating breast combined with ligament laxity can create a burning sensation deep in the breast (as reported to the authors in clinical practice). Warm compresses [32] and magnesium supplementation [33] have been reported to be helpful for alleviating symptoms. Nifedipine has been reported to successfully manage nipple vasospasms [34].

Use of a stability ball seat has been reported to the authors by EDS moms to give them a way to express the EDS muscle fidget and use a variety of muscle groups to prevent the tiring of singular muscles. Rhythmic sensory stimulation [35], transcutaneous electrical nerve stimulation (TENS) [36], lidocaine patches [37], warming pads / compresses [38], and joint injections [39] may also be useful techniques to manage pain. Electronic methods and alternative remedies may need to be assessed in depth to ensure the mother is being informed fully as to the lactation considerations and risks while using these interventions.

Use of subtle bouncing on an exercise ball has also been reported to ease pelvic and low back discomfort during pregnancy, labor, and postnatally for non-EDS patients [40,41,42] and may be effective for EDS patients as reports to the authors indicate. Structurally speaking, splinting the pelvis, ligaments, and joints can help with pelvic pain. Sacro-iliac and uterine splinting can be particularly helpful in alleviating anterior and posterior pelvic discomfort. Pelvic discomfort can continue after the baby’s birth and may require physiotherapy as well as analgesia for pain management [43]. Assisting new mothers to find adaptive measures for discomfort including supportive clothing and / or devices such as braces can minimize or prevent discomfort. Gentle breast massage [44] along with bracing and support garments was found to be useful for alleviating the pain manifesting from these various musculoskeletal micro-injuries. However, the use of rehabilitative tape, designed originally as a ligamentous stabilizing adhesive [45] which creates physiologically appropriate tension to externally splint the body [46] and other therapeutic non-invasive joint support modalities, have been increasingly researched over the last several years [47]. Such principles can be applied well to the unique circumstance mothers with EDS encounter. However, it must be noted that rehabilitative tape should be used cautiously in mothers who have moderate to severe dermal manifestations of EDS. In mild cases, skin barrier film may help but the mother should be monitored to ensure a successful positive response. A diagram of possible tape positioning is shown in Fig. 1, provided in a personal communication by Bryna Sampey of Doula My Soul, IBCLC [48].

Fig. 1
figure1

Rehabilitative tape positioning 

Fatigue

For EDS patients, pain is often associated with fatigue, which can be compounded by sleep deprivation that often accompanies the arrival of a neonate. Helping a new EDS mother with finding adequate resources to manage fatigue is especially important. These resources can include neighbors, friends, church members, and family who all want to help make life easier for the new mother as well as providing the additional assistance needed to promote successful lactation. Equally important is giving the mother with EDS a way to explain her condition and circumstances to those whom she chooses, so she might feel better understood. Encouraging her to reach out to her support network and accepting their “help”, as they are often delighted to provide meals, occasional cleaning, or to deliver groceries as a way of allowing help with the new family that will leave the new mother more time to focus on managing her condition while acclimating to life with a new infant.

Gastrointestinal

Gastrointestinal problems include constipation, diarrhea, and / or reflux [49]. As people with EDS often experience nausea and abdominal pain that may decrease their desire to eat, adequate maternal nutrient intake can be a challenge [50]. If mothers with EDS experience diarrhea, it is essential that they stay hydrated for maternal wellbeing. Suggesting mothers place a glass of water on a table or nightstand where they will be feeding their infant at the breast can help them remember to maintain adequate hydration. Gastrointestinal effects are often dismissed as “stress-related” stomach issues and can be difficult to separate from stress related somatization [50, 51] It is also important for mothers suffering the gastrointestinal aspects of EDS to be monitored for malnutrition and weight maintenance during lactation. Individuals with gastrointestinal symptoms may benefit from advice from a nutritionist.

Skin and fascial tissues

The skin of the EDS mother can be fragile [52], bruising or tearing easily with incorrect latch, infant pulling on the nipple to maintain latch, or an infant biting. Preventive and remedial options are an important aspect of giving mothers the power of self-care in their situation. Engorgement in mothers with hyperplastic breast tissue can be very extreme as their tissue will continue expanding with the increasing pressure if milk is not removed. In theory, some mothers may struggle with achieving let-down due to difficulties with proprioceptive nerves [18]. Conversely, the authors have observed that some mothers with EDS have a strong let-down with high pressure flow of the milk due to the dysfunctional collagen which coordinates the smooth muscle movement of mammary tissue. Engorgement is worth preventing with regular, frequent feeds in the early days of lactation. Extreme engorgement can also occur during breastfeeding transitions, such as infant growth spurts and cessation of breastfeeding, making education on transitioning and gradual weaning techniques an imperative.

In cases of let-down difficulty, stress reduction, reassurance, and breast massage can help provide stronger visual / auditory / tactile cues to stimulate oxytocin release and myoepithelial contraction of the alveoli and milk ducts. For those with strong let-down, repositioning the infant into a sitting position can help the infant manage the high-pressure flow that results from strong let-down.

Dysautonomia

Dysautonomia is a dysfunction of the nerves that regulate involuntary body functions, such as perspiration, blood pressure, and heart rate. Many patients with EDS have associated diagnoses that classify as dysautonomia such as postural orthostatic tachycardia syndrome (POTS) [53, 54]. These problems with the autonomic (“fight, flight, or freeze”) nervous system can lead to rapid lowering of blood pressure often upon standing, or an excessively fast heart rate, which can be challenging to cope with as such symptoms, like dizziness, palpitations, or (near) fainting, are often not quantifiable and can be misdiagnosed as the “anxiety” of being a new mother. While these autonomic symptoms may require medication, there are often mechanical and precautionary strategies that are also implemented, such as compression leggings and particular physiotherapy regimens. Mothers who experience near fainting with standing due to dysautonomia should be cautioned against standing quickly and should be advised, for the safety of both, to pick the infant up after standing rather than hold the infant and stand up.

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