A young mother suffered sudden, crippling back pain and fractures
“I felt so much better,” recalled the children’s book author who also devises crossword puzzles for the New Yorker and the New York Times.
Her relief proved to be short-lived.
Several days after her parents’ departure Lucido stumbled into the bathroom early one morning and unintentionally sat down hard on the toilet. Instantly she felt a sickening shudder in her lower back followed by the sensation of an electric current shooting up her spine. Intense nausea came next. Worried she might pass out from the pain, Lucido lay on the bathroom floor. Then she woke her husband to tell him she needed to go to the ER, where she was given medication to treat back spasms.
It would take a second trip to the ER, consultations with several specialists and a fortuitous online search to unearth the little-known cause of the intense pain that left Lucido temporarily dependent on a walker and nearly unable to take a shower, dress herself or care for her baby.
The condition has upended her life, prompting an unplanned cross-country move to help facilitate her recovery, a process expected to take months.
“I really want people to know about this disease because lack of awareness is the reason it often becomes so debilitating,” she said. Had she known what was wrong earlier, Lucido could have taken simple steps to reduce her risk and minimize the damage.
Before and during her trouble-free pregnancy, Lucido ran, lifted weights and bicycled. She wasn’t concerned when she developed mild back pain.
Her friends who’d had babies had dealt with a variety of ailments and Lucido was no stranger to back problems. In July 2021 she had slipped and fallen at home, smacking her back on the edge of a wooden stair. An X-ray revealed a compression fracture of a vertebrae in her spine.
Lucido wore a back brace while she recovered. After three months, she said, “it was like the injury had almost never happened.”
But at the urging of her parents, both of whom had been diagnosed with osteoporosis before their late 50s, Lucido convinced reluctant doctors to order a DEXA scan to assess her bone density. The noninvasive scan, which uses an enhanced form of X-ray, revealed a score of -3.3, unusually low particularly for a young adult and an indicator of osteoporosis, a condition that causes bones to become weak, brittle and to break more easily.
“I really want people to know about this disease because lack of awareness is the reason it often becomes so debilitating.”
— Aimee Lucido
The endocrinologist Lucido consulted in 2022, who knew she was trying to conceive, advised her to consume sufficient amounts of calcium and vitamin D and return for a consultation when she was finished having children. (Osteoporosis drugs are not advisable during pregnancy.) Because of her low bone density, he offhandedly suggested she might consider limiting breastfeeding to about six months.
A year and a half later, after her first visit to the ER, Lucido sought to determine whether breastfeeding might be related to her worsening back pain. The response from a second endocrinologist, a primary care physician assistant, a physical medicine doctor and several lactation consultants was a resounding no.
They told her they had never heard of such a connection and suspected that something as yet unidentified was causing her pain.
Unable to schedule an appointment with the endocrinologist she had seen previously, Lucido saw a second endocrinologist. The doctor told Lucido she suspected she had wrenched a muscle.
“She said, ‘I wouldn’t want to deprive you of breastfeeding just because you have osteoporosis,’ ” Lucido remembers.
By mid-November, a few weeks after her ER visit, walking had become difficult. Lucido was popping copious quantities of anti-inflammatory pills and muscle relaxants and spending much of her day on the couch. Her sister arrived from the East Coast to help.
An X-ray and an MRI ordered by the PA she saw for primary care revealed something unexpected: two new mild fractures of her lower spine along with herniated disks, which are usually caused by age-related degeneration or an injury. It wasn’t clear what caused them, although they might have been the result of the toilet episode.
What alarmed Lucido was that no one seemed interested in investigating. She recalls feeling increasingly apprehensive about what might happen next.
One morning in early December 2023 while brushing her teeth, Lucido felt an odd ache in her lower back “as if my spine was made of two sharp pencils balancing point to point.”
She gingerly inched her way downstairs, pulled milk out of the refrigerator and, fearing she had missed the counter, twisted and lunged to prevent the carton from crashing to the floor. Within seconds it felt as if her lower back was on fire. Lucido dropped to the floor screaming in pain.
Her husband and sister raced into the room to find her curled in a fetal position and called 911. Paramedics, who gave her a strong anti-inflammatory drug, suggested she might have sciatica, nerve pain that starts in the lower back and is sometimes caused by a disk problem.
At the ER, the doctor seemed perplexed. After Lucido told him that Valium and lidocaine had helped control her pain previously he ordered them. But he declined Lucido’s request for an X-ray and without explanation told her he couldn’t get her a back brace or a walker.
Lucido said he seemed increasingly impatient. He knew back spasms could be “uncomfortable,” she remembers him saying, but his shift was ending in a few hours and he couldn’t leave until she did. He offered her a cane and said that if she was unable to walk she could go to “assisted living.”
Finally, she said, after a second round of injections a walker was found and she hobbled out of the hospital.
Lucido decided she had to wean her daughter, who was 4 months old. Breastfeeding, she said, “was just getting too hard” and required painful contortions to accommodate a squirming baby while protecting her damaged back.
She and her family also began scouring the internet for information and urgently attempting to snag scarce appointments with the few Bay Area endocrinologists who specialize in treating bone disorders.
As Lucido reduced and then stopped breastfeeding, her pain receded. But one night in late December she stretched in her sleep and felt something pop near her tailbone. An X-ray revealed two new spinal fractures.
Their search paid off. Lucido’s mother found a press release describing a condition that sounded uncannily familiar. In 2018 Columbia University’s Irving Medical Center had launched a program headed by endocrinologist Adi Cohen to recruit, study and treat women with a rare condition called pregnancy- and lactation-associated osteoporosis (PLO).
A severe form of early-onset osteoporosis — osteoporosis that occurs before age 50 — PLO 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. Unlike postmenopausal osteoporosis, which is common and affects about 10 million Americans, PLO is rare, although no one knows how rare.
Little is known about the condition, which was described more than 70 years ago. Misdiagnosis is common and many doctors have never seen a case.
Calcium loss is reversed after breastfeeding stops and does not appear to affect the risk of developing osteoporosis later in life. But in women who have PLO, calcium depletion can result in fragility fractures — breaks not caused by a fall or other trauma — resulting in severe back pain. Some of these women may be at higher risk of developing postmenopausal osteoporosis.
“I remember thinking ‘Is nobody curious about how a healthy 33-year-old has spontaneous fractures?’ ”
— Aimee Lucido
The first step is to stop breastfeeding. A 2023 survey by Cohen and her colleagues of 177 women with PLO found that their average age was about 32, and that most fractures occurred during first pregnancies and while breastfeeding. Nearly half reported five or more fractures, usually of the spine.
Recovery varies. A spontaneous rebound of bone density can occur within a year of giving birth, but some women may benefit from osteoporosis medication.
“It was as though the clouds parted,” Lucido remembers when she read about the diagnosis.
Lucido exchanged emails with Cohen. With the help of her physical medicine doctor she managed to secure 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 suspects her case involves genetic factors, including a family history of osteoporosis. A second DEXA scan taken shortly after she stopped breastfeeding showed that Lucido’s bone density had decreased to -4.2. During the four months she breastfed, she suffered eight fractures.
Because few women of childbearing age have undergone DEXA scans (they are typically recommended starting at 65), most would be unlikely to discover they had low bone density until they broke a bone.
“If you’re starting at a very low level of bone mineral density you’re putting yourself at risk for complications,” Babey noted. She recommended that Lucido take an injectable osteoporosis drug in the hope of strengthening her bones.
“I am much, much better,” Lucido said in May, after returning from a two-week trip to New York City that involved lots of walking, something she couldn’t have envisioned in January.
“I feel hopeful,” she said. “For a while it was, ‘Am I ever going to be able to walk again?’ ”
Her diagnosis prompted a major life change. Because they needed more help immediately, Lucido and her husband sold their house in Berkeley in March and temporarily moved in with Lucido’s parents in North Carolina. They plan to relocate to a New York City suburb in August.
“We realized we couldn’t be so far away,” said Lucido, who recently became Cohen’s patient and is enrolled in a research study at Columbia.
Although she is now largely pain-free and has had no fractures since she stopped breastfeeding, Lucido’s long-term prognosis is unclear. Had she known she was at risk of PLO, she says she would never have breastfed. She worries about falling and takes precautions to avoid it. She stopped running, is careful about bending and doesn’t lift heavy objects.
What Lucido found most frightening and infuriating, she said, was skepticism about the severity of her pain coupled with an apparent disinterest in its cause at a time she felt particularly vulnerable.
“I couldn’t bathe myself or put my pants on or get out of bed,” Lucido said. “I remember thinking ‘Is nobody curious about how a healthy 33-year-old has spontaneous fractures?’ ”
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