Doctor reveals cause of Celine Dion’s spasms on camera after singer gives glimpse into her struggle with ultra-rare stiff person syndrome

The debilitating ‘stiff person’ syndrome suffered by Celine Dion and one in a million people causes muscle spasms so powerful they can break bones.

A recently released clip from Celine Dion’s biographical documentary showed the Canadian singer stiff as a board and whimpering in pain as muscle spasms overtook her body.

Doctors say the rare condition is caused by an immune system turbo response that attacks the body’s own cells, particularly those that regulate motor function.

A doctor told DailyMail.com that with Stiff Person Syndrome (SPS), “it appears as if the body’s ‘off switch’ for muscle contraction malfunctions, leaving the muscles in a constant state of activation.”

In the documentary, Mrs. Dion performs physical therapy exercises when the spasms overcome her and she has to lie still on her side.

Her wrist is stiff and bent and she cannot move it. Her face is contorted in pain and she is crying, but she cannot move her neck or head.

Dr. James Chung, an expert in autoimmune diseases and Chief Medical Officer at Kyverna Therapeutics, told DailyMail.com: ‘Patients with (stiff person syndrome) often describe their pain as intense sharp pain that makes it painful to move. Many report constant underlying muscle tension as if their body is constantly braced.

‘During acute spasms, patients have likened the feeling to severe cramps or ‘seizing’ of their muscles. Some describe a burning or electric sensation that accompanies the spasms.”

Dr. James Chung (pictured) explained in SPS that the body’s own immune system inhibits the production of a neurotransmitter that regulates muscle movements and contractions

Her legs also seem completely immobilized to her.

During her crisis, Ms. Dion’s doctor administers a benzodiazepine spray to relieve anxiety and reduce muscle spasms.

Her spasms last at least 30 minutes before she can sit up on her own.

Ms Dion said in the aftermath: ‘Every time something like this happens I feel so ashamed.

“I don’t know how to express it, you know, that you have no control over yourself.”

SPS is an attack on the body, especially the central nervous system (CNS). SPS produces antibodies that attack proteins responsible for regulating muscle contractions.

This attack reduces the levels of an enzyme that produces an important neurotransmitter in the central nervous system called GABA, which normally relaxes the muscles. But when its levels are reduced, the muscles do not receive signals to release tension, leading to prolonged muscle contraction.

External stimuli, such as bright lights or loud noises, often trigger spasms, and emotional stress can trigger or worsen the involuntary movements.

Dr. Chung said: ‘This autoimmune attack means that muscles now do not have proper control over how they contract and relax, leading to stiffness, reduced movement, excessive muscle tension and painful spasms.’

Celine Dion secretly dealt with stiff person syndrome for 17 years before making her diagnosis public in 2022. The condition makes performing extremely difficult, but she would like to continue with her music career.

Spasms can last seconds to an hour and have been described by patients such as Carrie Jean Robinette of San Diego as “excruciating pain” that leaves her “temporarily paralyzed” and “feels as if I have been physically struck.”

She said: ‘Every day I am confronted with this condition which sometimes looks different from hour to hour.

“Some days I walk without assistance, other days I need my forearm crutch, and most days I need a mobility chair if I want to walk more than 20 yards.”

SPS is extremely rare and affects fewer than 5,000 Americans.

The disease is chronic and cannot be cured. SPS itself is not fatal, but patients can die from complications of the disease.

Muscle spasms and stiffness increase the risk of fatal falls and injuries.

Muscle stiffness can also affect the muscles in the chest and diaphragm, which can lead to respiratory failure.

Some people may also experience problems with their autonomic nervous system – the network of nerves that regulate functions we don’t think about, such as heart rate, blood pressure and digestion.

Treatment for the condition typically includes muscle relaxants such as diazepam and immunotherapy to reduce the amount of antibody attacks on the body.

Pain management is critical, but does not necessarily require the use of an opioid, which can be addictive.

Physical therapy, like Ms. Dion does, is also essential for maintaining mobility and muscle strength over time.