People who suffer from stiff person syndrome share what it’s really like
Stiff person syndrome is suddenly in the news after Celine Dion shared earlier this month that she was diagnosed with the rare condition. Dion, 54, revealed in an Instagram post that her recent diagnosis helps explain “all of the spasms that I’ve been having.”
Stiff person syndrome, aka Moersch-Woltman syndrome, is a neurological disorder that can cause symptoms such as stiffening in the muscles of the trunk, along with stiffness and rigidity in the legs and other muscles, according to the Cleveland Clinic. It can also lead to painful spasms that either happen at random or are triggered by things such as noise, emotional distress and even light physical touch, according to the Cleveland Clinic.
The condition is incredibly rare, though. Dr. Amit Sachdev, medical director for neurology and director of the Muscle Dystrophy Clinic at Michigan State University, tells Yahoo Life that many neurologists will never see a patient with stiff person syndrome. He specializes in the disorder and says he diagnoses a new patient about once a year. “I have six patients. This is a very large practice for this disease,” he says.
Treatment usually involves two approaches, Sachdev says: stopping progression of the disease with IV immunoglobulin treatments, and treating spasms caused by spinal cord injury that a patient develops over time. “Many providers miss the second step, but it is really important to remember that spinal cord damage has occurred by the time the disease has been picked up,” Sachdev points out.
So what is life like for people who actually live with this disease? Several people with stiff person syndrome opened up to Yahoo Life about their experiences. Here’s what you need to know.
‘I have to be careful when driving, because if someone honks their horn and it startles me, I get spasms in my back and ribcage that take my breath away.’
Janet Galgani, 54, first developed symptoms of stiff person syndrome 23 years ago, after her son’s birth. She tells Yahoo Life that she had a spinal block for her son’s delivery and “for years, I thought that having that caused my issues in my back.”
Galgani says she had “severe pain” in her upper back that felt like spasms. “When I tried to lay flat on my back on the floor and play with my infant, I would often end up in tears due to the pain I had,” she says. “My doctor did an X-ray and said, ‘Nothing is wrong, so don’t lay on your back if that hurts.’ He told me it was probably just a temporary thing and sent me on my way.”
But Galgani continued to develop uncomfortable symptoms, including pain and stiffness in her legs and feet, and saw a series of doctors who misdiagnosed her with depression and fibromyalgia. She suddenly developed diabetes at age 35 — a condition that’s commonly linked with stiff person syndrome — but didn’t have an explanation for why it had happened.
By 2017, Galgani says she was living in chronic pain. “I could not wash dishes, fold laundry, sweep or mop the floors without my back spasming,” she says. But it wasn’t until 2019 that she was officially diagnosed with stiff person syndrome.
“I was both terrified and relieved,” she says of her diagnosis, noting that it made her “feel like I am not crazy and this isn’t all in my head.” Now, Galgani says, she can’t do a lot of the things she used to enjoy, including horseback riding, roller skating and cooking.
“Triggers for me are things like vacuuming, sweeping, mopping the floors, washing dishes, blow-drying my hair, even wiping myself after going to the bathroom,” she says. “Getting dressed can be difficult and having to learn how to put on a bra in a way that doesn’t cause a spasm is a challenge. I have to be careful when driving, because if someone honks their horn and it startles me, I get spasms in my back and ribcage that take my breath away.”
‘It would feel like my tendons were about to tear apart, and there was nothing I could do.’
Michelle Auerbach was diagnosed with stiff person syndrome four years ago, when she was 26. Her symptoms started when she was a college student and had trouble physically getting to class. “I was having so much pain, and by the time I got to school, I felt like I had run a marathon,” she tells Yahoo Life. “I knew something was wrong, but I didn’t know what.”
Auerbach says she saw her family doctor, who quizzed her on her history of depression and then wrote her off after her bloodwork came back normal. “She shrugged her shoulders and told me that maybe I should try exercising more,” she recalls. After that, she started experiencing “horrible, twisting, pulling, contorting muscle spasms that could last hours on end.”
She says, “It would feel like my tendons were about to tear apart, and there was nothing I could do but wait it out until the next one came along.” Auerbach says walking became “more and more of a struggle” and, if a muscle spasm came on when she was standing, she would fall over. “An ambulance would have to be called if we were out or if I hit my head,” she adds.
A neurologist mentioned stiff person syndrome to her in 2017, but she says she “couldn’t believe it was a real thing.” Her doctor was also “noncommittal about the diagnosis.” It wasn’t until she visited a specialist that she received a proper diagnosis of stiff person syndrome — seven years after her symptoms first began. “I felt validated and like there was a huge weight off my shoulders,” Auerbach says of her diagnosis.
Now, Auerbach says, she struggles with mobility and relies on an electric wheelchair for traveling long distances. She also receives IV immunoglobulin treatments on a monthly basis. “Some days are definitely better than others,” she says. “When I’m nearing my next treatment, I start to feel more spasms in my muscles, but I’m grateful that, with the treatments I’m on, my spasms are nowhere near as frequent as they once were. I am very grateful for modern medicine and what it’s done for me.”
‘I used to be able to go and do pretty much everything, but now even a 40-hour work week is very difficult to accomplish.’
Andrew Larcher, 26, first developed symptoms of stiff person syndrome in 2016. “My journey, as many others, included lots of doctor visits, hospital stays and very expensive medical tests,” he tells Yahoo Life, noting that it took five years to get a diagnosis. “I was upset and confused, but I never lost hope,” he says.
Larcher receives IV immunoglobulin treatments twice a month and goes to physical therapy, but says that stiff person syndrome “limits what I can do in a day a lot.” He adds, “I used to be able to go and do pretty much everything, but now even a 40-hour work week is very difficult to accomplish.”
‘I was ignored by most doctors. I was told it was all psychosomatic and that I needed therapy.’
Jennifer Trujillo, 38, tells Yahoo Life that she struggled to have doctors take her seriously when she developed symptoms of stiff person syndrome when she was pregnant with her sixth child. “I developed a tremor in my arm and a spasm in my back,” she says.
But Trujillo says she was “ignored by most doctors,” adding, “I was told it was all psychosomatic and that I needed therapy.” She says it took five years of misdiagnoses until she was finally diagnosed with stiff person syndrome. Now, her children have been taught how to use her rescue medication in case of bad spasms. “We had to have a game plan, just like some families have a plan for fires,” she says.
Trujillo says she “used to be a singer” but that stiff person syndrome now impacts her singing. “I have to mostly depend on my kids to manage the house,” she says. “I do the online shopping, but I rarely leave my room or my bed. If I’m active, it sets me off. Cold, sounds, touch, stress, smells, being startled could all cause a sudden attack.”
‘I stopped running when my legs just froze, and I was stuck on the pavement during a 13-mile run.’
Rae First was officially diagnosed with stiff person syndrome in April, although his symptoms started 12 years ago, when he was in high school.
“I was a violinist and I thought that was what I was going to do with my life,” he tells Yahoo Life. “But I would randomly start dropping my bow, and my hand would freeze up. Then came college and the neck stiffness, and episodes where I would be sitting and unable to stand up.”
First says he became a long-distance runner after college and would have episodes where his feet would turn inward. “I stopped running when my legs just froze, and I was stuck on the pavement during a 13-mile run,” he says. “I tried biking instead and that didn’t last long. I fell off my bike because my muscles froze when a truck horn went off right next to me.”
He shares he saw several specialists who told him it “was in my head.” Finally, he was diagnosed with stiff person syndrome. “I really had never heard about it before,” he says, adding that he thought his doctor “made it up.”
He now takes diazepam, a medication that’s used to treat anxiety, muscle spasms and seizures, and IV immunoglobulin treatments, which he says is “slowly helping me get some things back.”
“I want other people to know that it’s real,” says First. “That it’s painful. That people go years undiagnosed because doctors don’t understand it.”
He adds: “I may not look like I’m on death’s door, but I am sick.”
‘I only have the use of both index fingers and thumbs.’
Dylan Collins first noticed something was off when he was 14, and the middle finger on his right hand wouldn’t flatten while he did push-ups in gym class. “I knew this wasn’t right,” he tells Yahoo Life.
Collins, 24, went to several doctors before seeing a child neurologist about two years after his symptoms started. He was diagnosed with stiff person syndrome a few weeks later. “It was a relief to hear stiff person syndrome was treatable, at the least it gave me hope I could live a life still,” he says. “I accepted it wasn’t going away but, under all that was a scared kid with a bunch of questions.”
He says he takes Valium three times a day to help manage his symptoms. “I only have the use of both index fingers and thumbs because of stiff person syndrome,” he says. While he’s able to walk the 1.4 miles to his local store and back, he says that things such as his appetite, sleeping, anxiety or even walking can be impacted by his condition.
“The disease is invisible,” he says. “Some days I may not be physically up to things I could easily do other days. I’m not being lazy — that’s just the nature of this beast.”
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