Chronic Pain – Autoimmune Warrior

Autoimmune Warriors, How Are Your 2023 Resolutions Going?

We’re 10 days into the New Year, and I wanted to check in with my fellow Autoimmune Warriors to see how your 2023 resolutions were going.

One of my New Year’s resolutions was to get back into doing yoga. I started doing yoga as a teenager, and then moved into doing more team sports like field hockey or doing other fitness classes like pilates and spinning. But I realized these past few months how much I missed doing yoga. I think it’s great not only as a form of exercise, but to help with stress relief as well. The problem is, I moved to a new neighborhood and wasn’t familiar with the local studios in my new hood.

The great thing about the New Year, is that if you have fitness and health related goals, that there are plenty of gyms, fitness centers, and health products doing promotions around this time to get your business. I ended up finding a local yoga studio on the MindBody app that was doing a promotion for only $10 for your first class.

It’s been ages since I went to a yoga class, and although there are similarities between yoga and pilates, which I had more experience with, it’s still not the same! Doing the class made me realize how important flexibility is in yoga; at one point, we were doing a stretch where everyone ended up in the splits…except me. But I was surprised by how flexible I was given that I hadn’t been to a yoga class in ages.

Other than getting back into yoga, another resolution of mine is to be more proactive about my health. In the busyness of life, it can be easy to slip with your healthcare routine. As an Autoimmune Warrior, you probably spend a lot more time than the average person when it comes to going to doctor’s appointments, ordering and picking up prescriptions, sorting and taking your medications, getting lab work done, preparing healthy meals, and more. It’s basically like having a part-time job, on top of all of the other work that you have to do!

In my case, this means making sure I make those appointments with my various specialists, ensure that I’m getting my lab work done on a quarterly basis, making any follow-up appointments if any abnormalities arise in my labwork, and ensuring that I’m always fully stocked on my meds. It also means ensuring that I get a good night’s sleep (at least 7 hours) and do daily exercise. I’m also putting more effort into making healthier meals, and using more fresh produce from our home garden.

The interesting thing about having an autoimmune disorder is that it’s chronic in nature, meaning that autoimmune symptoms are continuous and never-ending. So it’s not like a weight loss goal, where I can say, “I want to lose 20 pounds” and then I’ve achieved the goal once I’ve lost that amount of weight. In other words, there isn’t an exact ‘outcome’ that we can really strive towards or predict. This makes measuring your goal progress a little trickier.

However, I remind myself that it’s not always about achieving a specific outcome (i.e. lose 20 lbs) but more so about adopting an overall healthier lifestyle. Do you notice that the people with the greatest longevity in the world, who live in the so-called Blue Zones, don’t ever count calories or even own a scale? It’s their daily habits that contribute to their overall healthy lifestyle.

So cheers to 2023, and I hope that your New Year’s resolutions are going well so far and continue to progress as the year goes by. Let me know your goals (health-related or otherwise) in the comments below!

Celine Dion Reveals Stiff Person Syndrome Diagnosis

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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.

Podcasts Every Chronic Illness Patient Should Listen to

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Back in 2019, I wrote a blog post about my favorite autoimmune disease YouTubers. These are YouTube channels that I personally follow as they document life with a chronic illness.

As a follow-up to that blog post, I wanted to share my favorite podcasts on the topic of managing life with a chronic illness. Although I still do watch YouTube videos fairly frequently, I also enjoy listening to podcasts since it’s so convenient to tune into a podcast while I’m working, doing chores, driving etc. without having to watch something visual.

So, without further ado, here’s my list of chronic illness podcasts that I enjoy listening to!

1. The Chronic Illness Therapist

The Chronic Illness Therapist is a podcast run by Destiny Winters, a licensed therapist in the Atlanta, Georgia area. Destiny has several chronic illnesses herself, including Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS), and Mass Cell Activation Syndrome (MCAS). Since she’s both a therapist and a chronic illness patient herself, Destiny understands the impact that managing an illness can have on a patient’s mental health.

As part of her podcast, she delves into a number of challenges that chronic illness patients face, including:

Medical gaslighting and questioning one’s own sanity
Lack of support or understanding from family and friends
Coping with pain and other difficult symptoms
How to live a meaningful and full life while battling illness
Adverse childhood experiences and the mind-body connection
Grief and acceptance

I have found all of these topics to be relevant to my own life, and I think that many readers would find the same. Plus, I highly appreciate her perspective as a therapist and as a patient, because not many people have both the academic and real-life expertise of both of these roles!

2. Sjogren’s Strong

Sjogren’s Strong is a podcast co-hosted by Lupe, a patient living with the autoimmune condition Sjogren’s Syndrome, and her partner Brian. I first learned about this podcast via their blog, after I was first diagnosed with Sjogren’s myself and was looking for information from other patients. The podcast delves into many subjects specific to living with Sjogren’s Syndrome, such as:

Managing common symptoms, like dry eyes, dry mouth, joint pain, fatigue, and brain fog
Sjogren’s medications, treatments, and medical insurance
Living an active lifestyle with a chronic illness

Although the podcast is clearly specific to Sjogren’s, I think it’s valuable for many chronic illness patients, such as those with Rheumatoid Arthritis and Lupus.

3. The Chronic Ills

The Chronic Ills podcast is co-hosted by Alina and Angelica, two Australian women who talk about living with a chronic illness as young adults in their twenties. Some of the topics they discuss in their podcast episodes include:

Body image with chronic illness
Medication and alternative therapies
The cost of being ill
Living with a chronic illness and anxiety about the global pandemic
Navigating relationships and friendships with a chronic illness
The portrayal of disability in the media

Alina and Angelica have had very different experiences as a chronic illness patients; one of them experienced becoming ill gradually, while the other had a sudden onset of their symptoms. What I like is that they show that not all cases are alike, and that every patient’s story is unique.

Those are the top three chronic illness podcasts that I’m listening to at the moment! Do you have any Spotify podcasts that you would recommend? Let us know in the comments below.