“I felt so much better,” recalled the children’s book author who also writes a novel Crossword Puzzles for The New Yorker and The New York Times.
Her relief proved to be short-lived.
One morning, several days after her parents left, Lucido stumbled to the bathroom and involuntarily sat down hard on the toilet. Immediately she felt a strange vibration in her lower back and then felt an electric current run down her spine. This was followed by intense nausea. Afraid she might pass out from the pain, Lucido lay down on the bathroom floor. Then she woke her husband and told him she had to go to the ER, where she was given medication to treat her back spasms.
It took a second trip to the emergency room, consultations with multiple specialists and a fortuitous online search to figure out the little-known cause of the intense pain, which left Lucido temporarily dependent on a walker and nearly unable to bathe, dress herself or care for her child.
The condition has turned her life upside down, forcing her to make an unplanned move out of the country to recover, a process that is likely to take months.
She said, “I really want people to know about this disease, because the lack of awareness is often why it becomes so debilitating.” 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 cycled. She wasn’t concerned when she experienced mild back pain.
Her friends who had children had struggled with a variety of illnesses, and Lucido also had back problems. In July 2021, she slipped and fell at home, hitting her back against the edge of a wooden staircase. X-rays revealed a compression fracture of a vertebra in her spine.
Lucido wore a back brace while she recovered. Three months later, she said, “It was like the injury never happened.”
But at the urging of his parents, both of whom were diagnosed with osteoporosis before the age of 50, Lucido convinced reluctant doctors to undergo a surgery. DEXA Scan to assess his bone density. The non-invasive scan, which uses a Advanced form of X-rayhas disclosed Score -3.3This rate is unusually low, especially for young adults, and is an indicator of osteoporosis, a condition in which bones become weak, brittle and break easily.
“I really want people to know about this disease, as it often becomes so debilitating because of the lack of awareness.”
— Amy Lucido
The endocrinologist Lucido consulted in 2022, who knew she was trying to conceive, advised her to get enough calcium and vitamin D and to come back for a consultation after she had children. (Taking osteoporosis medications during pregnancy is not recommended.) Because of her low bone density, he suggested she might consider limiting breastfeeding to about six months.
A year and a half later, after her first trip to the ER, Lucido tried to figure out if breastfeeding might be related to her worsening back pain. The answer from a second endocrinologist, a primary care physician assistant, a physical therapy doctor, and several lactation consultants was an emphatic “no.”
They told her that they had never heard of such a connection and suspected that some unknown reason might be causing her pain.
Unable to schedule an appointment with the first endocrinologist she had seen, Lucido saw another endocrinologist. The doctor told Lucido he suspected she had a muscle strain.
“She said, ‘I don’t want to deprive you of breastfeeding just because you have osteoporosis,’” Lucido recalls.
By mid-November, a few weeks after going to the ER, walking had become difficult. Lucido was taking copious amounts of anti-inflammatory pills and muscle relaxants and spending most of her day on the couch. Her sister flew in from the East Coast to help.
X-rays and an MRI ordered by the PA she saw for primary care revealed something unexpected: two new mild fractures in her lower spine, as well as herniated discThese are usually due to age-related deterioration or an injury. It was not clear what caused them, although they may be the result of a toilet episode.
Lucido was concerned that no one seemed interested in the investigation. She remembers growing increasingly anxious about what might happen next.
While brushing his teeth one morning in early December 2023, Lucido felt a strange pain in his lower back “as if my spine was made of two sharpened pencils balanced vertically against one another.”
She slowly climbed down, took milk out of the refrigerator and, thinking she missed the counter, turned and moved to prevent the carton from falling to the floor. Within seconds she felt as if her lower back was on fire. Lucido fell to the floor screaming in pain.
Her husband and sister rushed into the room to find her curled up in a fetal position and called 911. Paramedics, who gave her a strong anti-inflammatory drug, suggested she was probably sick. sciaticaNerve pain that begins in the lower back and is sometimes caused by a disc problem.
The doctor in the emergency room seemed puzzled. When Lucido told them that Valium and lidocaine had previously helped control her pain, he ordered them. But he refused Lucido’s request for an X-ray and told her, without explanation, that he couldn’t get her a back brace or a walker.
Lucido said he grew increasingly impatient. She remembers him saying he knew back spasms could be “uncomfortable,” but his shift was ending in a few hours and he couldn’t leave until she did. He gave her a stick and said she could go to “assisted living” if she was unable to walk.
She said that finally, after the second round of injections, she got a walker and limped out of the hospital.
Lucido decided she had to wean her daughter, who was 4 months old. Breastfeeding was “becoming too difficult,” she said, and required painful turning to support the squirming baby while protecting her damaged back.
He and his family began scouring the Internet for information and attempted to get immediate appointments with one of the few endocrinologists in the Bay Area who specialized in treating bone disorders.
As Lucido reduced and then stopped breastfeeding, her pain lessened. But one night in late December, she stretched in her sleep and felt something pop near her tailbone. X-rays revealed two new fractures in her spine.
Their search paid off. Lucido’s mother found a child who Press release Describing a situation that seemed oddly familiar. In 2018, Columbia University’s Irving Medical Center 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 occurring before age 50 — PLO can occur in late pregnancy or during breastfeeding when the mother’s calcium deficiency causes a temporary decrease in bone mineral density. Unlike osteoporosis after menopause, which is common and affects about 10 million Americans, PLO is rare, although no one knows just how rare.
Little is known about this conditionWhich was described more than 70 years ago. Misdiagnosis This is common and many doctors have never seen a case of it.
Calcium deficiency reverses after breastfeeding stops and does not appear to affect the risk of developing osteoporosis later in life. But in women who have PLO, calcium deficiency can lead to fragility fractures — fractures not caused by a fall or other trauma — resulting in severe back pain. Some of these women may also have a higher risk of developing osteoporosis after menopause.
“I remember thinking, ‘Is no one interested in knowing how a healthy 33-year-old gets a spontaneous fracture?’”
— Amy Lucido
The first step is to stop breastfeeding. 2023 survey A study by Cohen and colleagues of 177 women with PLO found that their average age was about 32 years, and most fractures occurred during the first pregnancy and breastfeeding. About half of the women reported five or more fractures, most commonly of the spine.
Recovery varies. There may be an abrupt improvement in bone density within a year of childbirth, but some women may benefit from osteoporosis medication.
Lucido remembers when she read about the diagnosis, she “felt like a cloud had lifted.”
Lucido exchanged emails with Cohen. With the help of her physical medicine doctor, she was able to get an appointment as quickly as possible. Muriel BebeyAn endocrinologist specializing in bone diseases at the University of California at San Francisco, Dr.
Baby described Lucido as suffering from PLO and said he suspected genetic factors were involved in her case, including a family history of osteoporosis. A second DEXA scan taken shortly after she stopped breastfeeding showed Lucido’s bone density had decreased to -4.2. During the four months she was breastfed, she suffered eight fractures.
Because very few women of reproductive age have a DEXA scan (it’s usually recommended from age 65), most women don’t know they have low bone density until they break a bone.
“If you’re starting with a very low level of bone mineral density, you’re putting yourself at risk for complications,” Bebe said. He recommended that Lucido take an injectable osteoporosis medication in hopes of strengthening his bones.
“I’m much, much better,” Lucido said in May, after returning from a two-week trip to New York City that included a lot of walking, something he couldn’t have imagined doing in January.
“I hope so,” she said. “For a while I was wondering, ‘Will I ever walk again?'”
Her diagnosis prompted a major change in her life. Because she needed more help right away, Lucido and her husband sold their home in Berkeley in March and moved temporarily to live 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 that far off,” 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 not had any fractures since stopping breastfeeding, Lucido’s long-term prognosis is unclear. Had she known she was at risk for PLO, she would never have breastfed. She worries about falling and takes precautions to avoid it. She has stopped running, is careful about bending and avoids heavy lifting.
Lucido said what she found most frightening and infuriating was the doubt about the severity of her pain and the apparent indifference to its cause, even at a time when she was feeling particularly vulnerable.
“I couldn’t shower, put on pants or even get out of bed,” Lucido said. “I remember thinking, ‘Is nobody interested in how a healthy 33-year-old suddenly gets a fracture?'”
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