A trip to the ED

In July 2021, before she became pregnant, Lucido slipped and fell at home, hitting her back on the edge of a wooden stair. An X-ray found a compression fracture of a vertebra in her spine.

Lucido wore a back brace for around three months until "it was like the injury had almost never happened," she said.

However, Lucido's parents urged her to get a DEXA scan to assess her bone density, since both of them had been diagnosed with osteoporosis before their late 50s. The scan, which used an enhanced form of an X-ray, found a score of -3.3, which is an unusually low score for a young adult and typically an indicator of osteoporosis.

The endocrinologist Lucido consulted knew she was trying to conceive and advised her to consume sufficient amounts of calcium and vitamin D and to return for a consultation once she was done having children. The endocrinologist also suggested Lucido might consider limiting breastfeeding to around six months given her low bone density.

Before and during her pregnancy, Lucido ran, lifted weights, and bicycled, and ultimately wasn't concerned when she developed mild back pain weeks after her daughter was born in July 2023. However, that back pain quickly escalated to an incapacitating pain, leading Lucido's parents to come into town to stay and help.

Lucido's parents stayed for 10 days, which helped Lucido feel better. But days after her parents left, Lucido walked into the bathroom early one morning and unintentionally sat down hard on the toilet. As soon as she did, she felt a shudder in her lower back and a sensation of an electric current shooting up her spine, followed by intense nausea. Lucido woke her husband who took her to the ED where she was given medication to treat back spasms.

Following her trip to the ED, Lucido wanted to determine whether her breastfeeding was related to her worsening back pain. A second endocrinologist, a primary care physician assistant, a physical medicine doctor, and several lactation consultants all told her they had never heard of such a connection and suspected something that had yet to be identified was causing the pain.

The second endocrinologist that Lucido saw said she likely wrenched a muscle. "She said, 'I wouldn't want to deprive you of breastfeeding just because you have osteoporosis,'" Lucido said.

By mid-November, a few weeks after her first visit to the ED, walking became difficult for Lucido, who was taking large amounts of anti-inflammatory pills and muscle relaxants and spending most of her day on the couch.

An X-ray and MRI ordered by a physician assistant Lucido saw for primary care found Lucido had two new mild fractures along her lower spine as well as herniated disks. It was unclear what had caused the injuries, though it was possible it was related to her injury sitting on the toilet.

Another ED visit

In December 2023, while Lucido was brushing her teeth one morning, she felt a strange ache in her lower back "as if my spine was made of two sharp pencils balancing point to point," she said.

She walked down the stairs, pulled some milk out of the refrigerator and, fearing that she had missed the counter, twisted and reached to prevent the milk from hitting the floor. Seconds later, it felt like her lower back was on fire, and Lucido fell to the floor screaming in pain.

Lucido's husband and sister came into the room and called 911. The paramedics gave her strong anti-inflammatory drugs and suggested she might have sciatica, nerve pain that starts in the lower back and sometimes is caused by a disk problem.

Once she was at the ED, Lucido's doctor seemed confused. After Lucido told him that Valium and lidocaine had helped ease her pain before, he ordered some, but declined Lucido's request for an X-ray and told her without any explanation that he couldn't get her a brace or walker.

Lucido said the doctor seemed impatient. He knew back spasms could be "uncomfortable," she remembered him saying, but his shift was ending a few hours later and he couldn't leave until she did. He finally offered her a cane and said if she couldn't walk, she could go to "assisted living."

After a second round of injections, a walker was found and Lucido was able to leave the hospital.

A discovery online

Lucido decided to stop breastfeeding her 4-month-old daughter, as it "was just getting too hard" and was hurting her back. Lucido found that, as she reduced and then stopped breastfeeding, her pain improved. But then one night in late December, she stretched in her sleep and felt something pop around her tailbone, which a later X-ray discovered to be two new spinal fractures.

Eventually, Lucido's mother discovered a 2018 press release online from Columbia University's Irving Medical Center, which had launched a program headed by endocrinologist Adi Cohen to recruit, study, and treat women with a condition called pregnancy- and lactation-associated osteoporosis (PLO).

PLO is a severe form of early-onset osteoporosis and can occur in the late stages of pregnancy or during breastfeeding when the loss of maternal calcium leads to a temporary decrease in bone mineral density. PLO is rare, but no one knows quite how rare, Boodman reports.

Calcium loss is reversed once breastfeeding stops and doesn't appear to affect the risk of developing osteoporosis later in life. However, calcium depletion in women with PLO can lead to fragility fractures resulting in severe back pain, and some of these women may be at a higher risk of developing postmenopausal osteoporosis.

A 2023 survey by Cohen and colleagues of 177 women with PLO found that their average age was around 32 and that most fractures occurred during first pregnancies and while breastfeeding. Nearly half of respondents reported at least five fractures, typically of the spine.

When Lucido read about the diagnosis, she said "it was as though the clouds parted."

Lucido emailed Cohen and eventually got an expedited appointment with Muriel Babey, an endocrinologist specializing in bone diseases at the University of California at San Francisco.

Babey diagnosed Lucido with PLO and said she suspected Lucido's case involved genetic factors, including a family history of osteoporosis. Another DEXA scan taken shortly after Lucido stopped breastfeeding showed Lucido's bone density had decreased to -4.2. During the four-month span she breastfed, Lucido suffered eight fractures.

Since few women of childbearing age have undergone DEXA scans, most would be unlikely to discover they have low bone density until they broke a bone, Boodman reports.

"If you're starting at a very low level of bone mineral density you're putting yourself at risk for complications," Babey said. She recommended Lucido take an injectable osteoporosis drug in an effort to strengthen her bones.

In May, Lucid said she is "much, much better," adding that she feels "hopeful."

"For a while it was, 'Am I ever going to be able to walk again?'" she said.

Lucido's diagnosis led her family to sell their house in Berkeley, California and temporarily move in with Lucido's parents in North Carolina, with a plan to relocate to a suburb of New York City in August.

"We realized we couldn't be so far away," said Lucido, who is now a patient of Cohen's at Columbia.

While she's now largely pain-free and hasn't had any fractures since she stopped breastfeeding, Lucido's long-term prognosis is unclear. Had she known about her PLO risk, Lucido said she would have never breastfed. Now, she worries about falling and takes precautions to avoid it. She also stopped running, is careful about bending, and doesn't lift heavy objects.

The thing Lucido said she found most frightening and frustrating was skepticism about the severity of her pain and an apparent disinterest in its cause.

"I couldn't bathe myself or put my pants on or get out of bed," she said. "I remember thinking 'Is nobody curious about how a healthy 33-year-old has spontaneous fractures?'" (Boodman, Washington Post, 6/22)

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