Fibromyalgia – Autoimmune Warrior

Celine Dion Reveals Stiff Person Syndrome Diagnosis

Celine Dion performing during her Las Vegas residency. Image courtesy of CNN.

Decorated Canadian singer-songwriter Celine Dion reveals she was recently diagnosed with a rare neurological autoimmune disorder called Stiff Person Syndrome. The diagnosis has lead her to cancel her summer 2023 shows, as well as re-schedule others to 2024.

According to Yale Medicine, Stiff Person Syndrome is believed to be an autoimmune reaction that occurs when the body’s own immune system attacks and destroys a vital protein called Glutamic Acid Decarboxylase (GAD). This protein is responsible for making a substance called gamma-aminobutyric acid (GABA), which helps to regulate motor neuron cells, and ensure they’re not over-active.

People with low levels of GABA have neurons that continuously fire, even when they’re not supposed to. This results in debilitating symptoms like violent muscle spasms, muscle stiffening in the torso and limbs, and difficulty with walking and movement. GABA also helps to regulate symptoms of depression and anxiety, so those with Stiff Person Syndrome are at a higher risk for developing these mental health conditions.

The 54-year-old Grammy award-winning artist has said that the condition has had a profound impact on her life, commenting: “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”

Getting diagnosed with Stiff Person Syndrome can be a challenge, since the symptoms can mimic many other neurological health conditions, like multiple sclerosis, Parkinson’s disease, fibromyalgia, and more. Patients typically undergo a thorough examination, such as blood tests and spinal fluid tests, to find elevated levels of anti-GAD antibodies, in order to get diagnosed.

Being diagnosed was not a straightforward process for Dion herself. “While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having,” she said.

Although anyone can develop Stiff Person Syndrome, the National Organization for Rare Disorders reports that adults ages 30 to 60 are most commonly diagnosed with the condition. The condition is considered rare, with only one in a million individuals being diagnosed with SPS among the general population.

There is no cure for Stiff Person Syndrome, but treatments like steroids to control inflammation, plus the use of sedatives and muscle relaxants to control muscle spasms, can help. Sometimes Stiff Person Syndrome patients are also prescribed immunotherapies to help calm an over-active immune system that’s destroying their GAD proteins.

In an emotional video on her Instagram, Dion said, “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again. But I have to admit it’s been a struggle.”

To learn more about Stiff Person Syndrome, visit the SPS Research Foundation’s website.

Carrie Ann Inaba Takes Leave of Absence Due to Autoimmune Diseases

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*Carrie Ann Inaba has said that she is taking a leave of absence from her TV hosting role to focus on her health.*

Carrie Ann Inaba, TV host on CBS’ The Talk and judge on ABC’s hit show Dancing with the Stars opened up about her struggle living with autoimmune diseases and chronic illnesses on her blog, Carrie Ann Conversations.

The Emmy award-nominated TV personality said that she has been diagnosed with several different autoimmune diseases and chronic conditions over the years, including Sjogren’s Syndrome, Systemic Lupus Erythematosus (SLE) and Rheumatoid Arthritis (RA), and she also has the markers for Antiphospholipid Syndrome (APS), which causes blood clots. The 53-year-old dancer and choreographer says she also struggles with fibromyalgia and spinal stenosis.

As a result of her various autoimmune conditions, Inaba has taken a leave of absence from her role on The Talk so that she can focus on her health, reports MedPage Today.

Talking about her health journey, Inaba said: “Even if we are fortunate enough to get a diagnosis, we can quickly end up with more questions than answers. Often when it comes to autoimmune conditions there is no perfect solution or clear path forward.”

Inaba continued, explaining: “Coping with autoimmune conditions can sometimes feel quite lonely. When I first got diagnosed, some encouraged me to keep my struggles to myself, but I’ve found that it’s always been better to be honest about my needs and realities than to stay silent. I believe strongly in sharing my journey, my solutions, and the things that have helped me.”

In this spirit, Inaba has shared on her blog the products that have helped her cope with her autoimmune disease symptoms – including eye dryness, mouth dryness, joint pain, fatigue, brain fog and more – so that others can benefit from these products and see if they work for them.

This isn’t the first time that Carrie Ann Inaba has opened up about her health struggles. The starlet previously posted on Instagram about how she felt ashamed of her autoimmune diseases, and wanting “…to be what people see. And people see a healthy person, from the outside.” However, confronting her health problems made Inaba reflect on who she is as a person, besides just her identity as a “sexy dancer chick.”

From all of us at Autoimmune Warrior, we want to thank Carrie Ann for opening up about her health journey as an #AutoimmuneWarrior, and raising awareness about the 80+ autoimmune diseases affecting over 23 million Americans. Because of celebrities like her, more people among the general population are learning about autoimmune conditions, and why extensive research is needed to find better treatments, and eventually, a cure.

Autoimmune Disease & Peripheral Neuropathy

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*Peripheral Neuropathy is a common complaint among autoimmune patients.* Image courtesy of the Southern Regional Pain Services.

Did you know that autoimmune disease can cause debilitating nerve pain and other nervous system difficulties?

Many medical professionals are unaware that autoimmune conditions can cause a variety of neurological symptoms, or neuropathies, in patients. Though it is commonly known that autoimmune diseases are responsible for joint pain and other kinds of inflammation, nerve pain is often overlooked.

According to the National Institute of Neurological Disorders and Stroke, peripheral neuropathy refers to conditions that involve damage to the peripheral nervous system, which is the vast communication network that sends signals between the central nervous system (the brain and spinal cord) and other parts of the body. Research has shown that over 20 million Americans suffer from some form of peripheral neuropathy, of which there are over 100 known unique types!

How can autoimmune disease cause peripheral neuropathy?

Systemic autoimmune diseases that impact the entire body can cause peripheral neuropathy because of the impact these diseases have on one’s nerves. Conditions like Type 1 diabetes, lupus, Sjogren’s syndrome, and rheumatoid arthritis can all cause nerves to become compressed or entrapped as a result of inflamed surrounding tissues.

Some autoimmune diseases aren’t systemic, or body-wide, but rather, target the nervous system directly. For example, in autoimmune conditions like Guillain-Barre, multiple sclerosis (MS) and chronic inflammatory demyelinating polyneuropathy (CIDP), the immune system may go after the motor nerves, motor fibers, or the myelin sheath coating the nerves. In other instances, the small fibers are attacked, resulting in ongoing chronic pain.

How does peripheral neuropathy manifest?

Peripheral neuropathies can manifest for different people in different ways. For example, rather than a sharp, jabbing, throbbing pain, for some patients it may feel more like prickling, tingling, burning, numbness, or even a complete loss of sensation.

According to the Mayo Clinic, peripheral neuropathy can also make you feel like you’re having a sensation that you’re not; for example, feeling like you’re wearing gloves or socks when you’re not. Peripheral neuropathies can also cause you to feel pain for activities that you know shouldn’t cause pain, such as pain in your feet after they’re underneath a blanket.

What you can do about your autoimmune nerve pain

Medical Interventions

If you have autoimmune nerve pain, don’t suffer in silence. Talk to your primary care physician and see if they can refer you to a neurologist or chronic pain specialist. From there, your physician can help put together a treatment plan to ease your pain.

I have Sjogren’s syndrome and for a period of 7+ years, chronic pain was a regular part of my life. My rheumatologist prescribed me all kinds of joint pain medications, from plaquenil (generic name: hydroxychloroquine) an anti-malarial drug, to prescription-strength nonsteroidal anti-inflammatory drugs (NSAIDs), steroid medications, and even chemotherapies! It wasn’t until my pain was identified as nerve pain, not joint pain, that I was able to switch to a medication that worked to reduce my peripheral neuropathy.

In addition, I worked with a neurologist to determine that I had a co-morbid condition, called benign fasciculation syndrome, which was also contributing to my pain. This is important, because many chronic pain sufferers have co-morbidities, like fibromyalgia, which can increase your pain levels or even be the real driving force behind it.

Lifestyle Considerations

Beyond medications, your lifestyle is also an important component of reducing your neuropathic pain. Vitamin deficiencies, for example, have been identified as a cause of peripheral neuropathies. This is because certain B vitamins, including vitamins B1, B6 and B12, as well as vitamin E and niacin, are crucial for maintaining nerve health. Since alcoholism can result in serve vitamin deficiencies, avoiding substance abuse is also key.

Exposure to certain toxins or poisonous substances, such as lead and mercury, can also impact your nerves and cause resulting pain. Finally, trauma and pressure on the nerves can cause neuropathies as well, so alleviating pressure on your nerves, such as decreasing repeated motions on the parts of your body experiencing pain, is important.

Do you have an autoimmune condition(s) and suffer from peripheral neuropathy? What do you do to cope with your chronic pain? Let us know in the comments below!