“It made me feel so much better,” said the children’s book author. New Yorker Crossword Puzzle And the New York Times.
Her relief didn’t last long.
A few days after her parents left home, Lucido stumbled into the bathroom early one morning and accidentally sat down on the toilet. She felt a violent tremor in her lower back and an electric current running down her spine. She was then hit by an intense wave of nausea. Worried that she would pass out from the pain, she lay on the bathroom floor. She woke her husband up and told him she needed to go to the emergency room, where he would prescribe medication to treat her back spasms.
It took a second trip to the emergency room, consultations with several specialists and a lucky online search to discover the cause of the excruciating pain that temporarily forced Lucido to rely on a walker and left her barely able to shower, dress or care for her baby.
The illness has changed her life forever and forced an unplanned move across the country to aid in her recovery, which is expected to take several months.
“I want people to know about this disease because lack of awareness is the reason it’s often so debilitating,” she said. If Lucido had known what the problem was sooner, she could have taken simple steps to reduce her risk and minimize the damage.
Lucido had been running, lifting weights, and cycling without any problems before or during her pregnancy, so she wasn’t worried when she experienced mild back pain.
Lucido was no stranger to back pain, as friends who had given birth had struggled with a variety of ailments. In July 2021, she slipped and fell at home, hitting her back on the edge of a wooden staircase. An X-ray revealed a compression fracture of her spine.
Lucido wore a back brace while she recovered. After three months, “it was almost like I had never been injured,” she said.
But both of her parents had been diagnosed with osteoporosis before they were in their late 50s, so Lucido persuaded her reluctant doctors to give her the treatment. DEXA scan A non-invasive scan was performed to assess bone density. Enhanced version of X-rayrevealed Score -3.3This is an abnormally low level, especially for a young adult, and is a sign of osteoporosis, which causes bones to become weak, brittle, and more likely to break.
“I want people to know about this disease because lack of awareness is often what causes it to become so debilitating.”
Amy Lucido
The endocrinologist Lucido saw in 2022 knew she was trying to conceive, and he advised her to get plenty of calcium and vitamin D and to return for a follow-up appointment after giving birth. (Osteoporosis medications are not recommended during pregnancy.) Because of her low bone density, he casually suggested that she consider limiting breastfeeding to about six months.
A year and a half later, at her first emergency room visit, Lucido sought guidance on whether her worsening back pain might be related to breastfeeding. The answer from a second endocrinologist, her primary care physician assistant, a physiotherapist and several lactation consultants was a resounding no.
Doctors told her they had never heard of such an association and suspected something yet to be identified was causing her pain.
After her previous endocrinologist was unable to see her, Lucido went to a second endocrinologist, who told her he thought she might have sprained a muscle.
“She said, ‘I don’t want to take away your milk just because you have osteoporosis,'” Lucido recalled.
By mid-November, a few weeks after the emergency room visit, she was having trouble walking. She took large doses of anti-inflammatories and muscle relaxants and spent most of her day on the couch. Her sister came up from the East Coast to help out.
X-rays and an MRI ordered by the PA for primary care revealed something unexpected: two new, minor fractures in her lower spine; Herniated discThese are usually caused by age-related degeneration or trauma, and while it’s possible that an incident in the bathroom was the cause, the cause is unclear.
What worried Lucido was that no one seemed interested in investigating, and she recalls feeling increasingly anxious about what would happen next.
While brushing his teeth one morning in early December 2023, Lucido felt a strange pain in his lower back: “It was as if my spine was made of two sharp pencils, balancing point-to-point.”
She carefully walked down the stairs and grabbed the milk from the fridge, then twisted her body to stop the carton from falling to the floor, afraid she had missed it on the counter, and lunged forward. Within seconds, she felt a burning sensation in her lower back. Lucid collapsed to the floor, crying out in pain.
Her husband and sister rushed into the room, found her curled up in the fetal position, and called 911. Paramedics administered a powerful anti-inflammatory drug and said she SciaticaThis is nerve pain that starts in the lower back and can be caused by a problem with the intervertebral discs.
The emergency room doctor seemed stumped: After Lucido told him that Valium and lidocaine had previously helped him with the pain, the doctor prescribed them, but he refused Lucido’s request for an X-ray and, without explanation, told him he couldn’t provide a back brace or a walker.
Lucido said he seemed increasingly irritable. She remembers him telling her he knew the back spasms were “unpleasant” but that his shift was over in a few hours and he couldn’t leave until she did. He offered her a cane and told her she could go to “assisted living” if she could no longer walk.
Eventually, after the second injection, he was found with a walker and hobbled out of the hospital.
Lucido decided she needed to wean her 4-month-old daughter. Breastfeeding “became too difficult,” she said, and required painful twisting to hold her squirming baby while protecting her injured back.
She and her family also began scouring the Internet for information and scrambling to secure a precious appointment with one of the few endocrinologists in the Bay Area who specialize in treating bone diseases.
The pain subsided as Lucido reduced and then stopped breastfeeding. But one night in late December, she stretched in her sleep and felt something pop near her tailbone. X-rays revealed two new vertebral fractures.
Their search paid off. Lucid’s mother press release The description of the symptoms sounds eerily familiar. In 2018, Columbia University Irving Medical Center Endocrinologist Adi Cohen It recruits, studies and treats women with a rare condition called pregnancy- and lactation-associated osteoporosis (PLO).
PLO is a severe form of early-onset osteoporosis that develops before age 50 and can occur when a mother loses calcium during late pregnancy or breastfeeding, causing a temporary decrease in bone density. Unlike postmenopausal osteoporosis, which is common in the U.S. and affects about 10 million people, PLO is rare, but no one knows how rare it is.
Very little is known about this diseaseIt was described over 70 years ago. Misdiagnosis Although this is common, many doctors have never seen a case like this.
The calcium loss is reversible when breastfeeding is stopped and does not appear to affect the risk of developing osteoporosis later in life. However, in women with PLO, the calcium loss can lead to fragility fractures (fractures not caused by a fall or other trauma) and severe back pain. Some of these women may be at higher risk of developing osteoporosis after menopause.
“I remember thinking, ‘Why would anyone be interested in a healthy 33-year-old suddenly breaking a bone?'”
Amy Lucido
The first step is to stop breastfeeding. 2023 Survey Cohen and her colleagues’ study of 177 PLO women found that their average age was about 32 and that most fractures occurred during their first birth and while breastfeeding. About half reported five or more fractures, many of which were spinal.
Recovery varies from person to person. Bone density may recover naturally within a year after giving birth. However, some women may benefit from osteoporosis medication.
“It was like a cloud had lifted,” Lucido recalled of reading the diagnosis.
Lucido exchanged emails with Cohen and, with the help of a physical therapist, was able to schedule a quick consultation with Cohen. Muriel BabyHe is an endocrinologist specializing in bone diseases at the University of California, San Francisco.
Dr. Baby diagnosed Lucid with PLO and said he suspected her case may have genetic factors, such as a family history of osteoporosis. A second DEXA scan, taken shortly after she stopped breastfeeding, showed Lucid’s bone density had dropped to -4.2. During the four months she was breastfeeding, she broke eight bones.
Because so few women of childbearing age have had a DEXA scan (it’s usually recommended starting at age 65), most don’t realize they have low bone density until they break a bone.
“If you start off with very low bone density, you put yourself at risk for complications,” Dr. Baby said, recommending that Lucido start taking osteoporosis injections to strengthen her bones.
“I’m feeling a lot better,” Lucido said in May, after returning from a two-week trip to New York that involved a lot of walking, something that would have been unimaginable in January.
“I feel hopeful,” she said. “For a while I wondered, ‘Am I ever going to walk again?'”
Her life changed dramatically as a result of her diagnosis, and because she needed more help immediately, Lucido and her husband sold their Berkeley home in March and temporarily moved to her parents’ home in North Carolina, with plans to move to the New York City suburbs in August.
“We realized we couldn’t be that far away,” said Lucido, a recent patient of Cohen’s who is also taking part in the Columbia University study.
Since she stopped breastfeeding, Lucido has had little pain and no broken bones, but her long-term prognosis is unclear. If she’d known there was a risk of PLO, she says, she would never have breastfed. She worries about falls and is taking precautions to avoid them: She’s stopped running, is careful when bending over, and avoids lifting heavy objects.
What Lucido found most frightening and infuriating, she said, was the combination of skepticism about the severity of her pain and apparent indifference to its cause at a time when she was feeling particularly vulnerable.
“I couldn’t bathe myself, I couldn’t put on my pants, I couldn’t get out of bed,” Lucido said. “I remember thinking, ‘Why is no one interested in the fact that a healthy 33-year-old suddenly breaks a bone?'”
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