Very Unfunny Fact: Every day, more and more people receive life-changing diagnoses of CIDP – chronic Inflammatory Demyelinating polyneuropathy

It’s like joining a club you never signed up for—complete with an initiation process that’s exhausting and, frankly, way too exclusive.

I became a reluctant member a few years ago, and let me tell you, that day changed my life forever.

But it wasn’t some overnight plot twist. My journey actually began way back in 2008, when I first noticed odd symptoms.

From there, it snowballed: endless EEGs, MRIs, EMGs, EKGs, X-Rays, blood tests—you name it.

I basically became a frequent flyer in the medical world, seeing about ten neurologists, a Lyme disease specialist, and even an orthopedic doctor.

Still, no one could crack the case.

Meanwhile, my left hand and arm were slowly doing their best impression of a wilting flower.

I lost strength, grip, fine motor control in my fingers—even lifting light things became a challenge.

Finally, after years of frustration, three neurologists were able to put the puzzle together.

The diagnosis?

A rare chronic autoimmune neurological disorder called Lewis-Sumner Syndrome—a variant of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).

How rare, you ask? Fewer than 5,000 people in the U.S. have it.

Talk about being part of an exclusive group!

Common Symptoms of Lewis-Sumner Syndrome rare variant of cIDP

• Weakness in arms or legs
  Often begins asymmetrically
• Muscle wasting
  Muscles shrink or lose definition over time.
• Numbness or tingling
  That “your limb fell asleep” sensation… except it forgot to wake up.
• Loss of reflexes
  Doctors will tap your knee and get a whole lot of nothing.
• Decreased grip strength
  Say goodbye to jar lids and hello to awkward attempts at opening anything.
• Impaired motor control
  Fine motor skills? Not so fine anymore. Buttons and zippers become small, cruel puzzles.
• Chronic fatigue
  Not just tired—drag-a-blanket-through-the-day tired.
• Pain or discomfort
  Nerve pain, burning sensations, or just general body betrayal.
• Muscle twitching (fasciculations)
  Little spasms that feel like your muscles are texting each other behind your back.
• Balance and coordination issues
  Walking can feel like a tightrope act… with no safety net.

Living with mysterious symptoms of CIDP for years was like starring in a never-ending medical drama.

Except there was no dramatic music—and no team of hot, brilliant doctors solving it all in 42 minutes.

At first, I hoped it was just a quirky case of nerve damage. Something rare, sure, but totally fixable.

I mean, there’s actually a thing called honeymoon palsy. Or Saturday night palsy. Sounds like the aftermath of a wild weekend, right?

I imagined a weird diagnosis with a fun name, a bit of surgery, some rehab, and a dramatic ta-da! recovery.

Spoiler alert: it wasn’t.

But hey, a person can dream.

When the diagnosis finally came, it brought a complicated cocktail of emotions.

Relief—because finally, I had a name for my medical nemesis.

Fear—because “chronic” and “incurable” are not the comforting words you want to hear.

And oddly enough, gratitude.

Because it could have been so much worse. Some chronic neurological conditions are more painful, more paralyzing.

Even now, I’m not sure if I should feel lucky or just oddly fortunate.

Once the initial shock wore off, I realized that living with a chronic illness meant I had two options: adapt or let it run the show. I chose to adapt.

The first two sensible insights I had were:

Managing a chronic illness isn’t a one-size-fits-all deal, but it’s a mix of medical, emotional, and lifestyle strategies.

Autoimmune disorders might not have cures, but with the right care, they can often be managed. It’s not about finding the silver lining; it’s about creating your own.

common aspects necessary to thrive while living with CIDP/Lewis-Sumner Syndrome:

Let’s get real for a second: if you’re a rare chronic illness warrior like me, you know it’s not all sunshine and green smoothies. It’s more like a rollercoaster with extra loops, and you’re just trying not to lose your lunch.

But here’s the thing: learning to manage your symptoms and live your best life (even if it’s a new version of “best”) is possible. Here’s how I’ve been keeping it together—or at least trying—with a mix of humor, resilience, and a lot of trial and error.

1. MEDICAL TREATMENT AND MONITORING

Regular medical care: Ongoing check-ups and treatments with healthcare professionals are essential. Depending on the condition, this may involve medication, therapies, or surgeries.

Lewis Sumner Syndrome is treated with immunoglobulin infusions that I take every 7-8 weeks at the neurological ward of the hospital in a nearby city, under the care of a doctor who specializes in this type of treatment. She is licensed to administer it. 

Twice a year, I undergo treatments at the rehabilitation center in my town, which typically include phototherapy, massages, and muscle electrostimulation.

There was a time when life felt like a bad episode of “Everything That Can Go Wrong, Will.”

Not only was I dealing with a mysterious illness that had doctors scratching their heads, but my family and I were also caught in a whirlwind of unfortunate events. It was like stress had taken up permanent residence in my life, and before I knew it, I was drowning in depression.

That’s when my doctor suggested SSRI antidepressants. At first, I wasn’t exactly jumping for joy at the idea.

I mean, there’s a certain stigma that can come with taking medication for mental health, right?

But here’s the thing: when you’re dealing with a chronic illness—especially in the beginning—sometimes you need all the help you can get. And there’s absolutely no shame in that. After a lot of hesitation I gave the meds a shot. And you know what? They made a world of difference.

If you’re ever in that place where everything feels like too much, remember: reaching out for help doesn’t make you weak. It makes you human. And sometimes, the right support—be it medication, therapy, or both—can be exactly what you need to start finding your footing again.

Medication adherence: Consistently taking prescribed medications is crucial for managing symptoms and preventing complications.

Except for immunoglobulins in the hospital, I don’t have any other complicated medication regimen. 

I am taking prescription B vitamins to support my nervous system. Additionally, I take magnesium, zinc, and vitamin D. I started vitamin D when I had depression and noticed that it made a huge difference in my mood – since then I have been taking it constantly until this day. 

Monitoring symptoms: Tracking symptoms and changes in health status helps detect potential problems early.

First off, let’s talk about being overly in tune with your body to the point when you cannot help but give off hypochondriac vibes. I’m talking about the kind of sensitivity where a random twinge can spiral into a full-blown WebMD rabbit hole.

My advice on that matter?

It’s never a good idea to Google your symptoms at 2 a.m. unless you’re looking to add insomnia to your list of woes. For me, ignorance is not bliss—but it sure does help me sleep better.

2. LIFESTYLE MODIFICATIONS

Healthy diet: Many chronic conditions require a well-balanced diet tailored to the individual’s needs.

When I got my diagnosis, I knew I had to rethink my relationship with food. Out went fast food, soda, and sugary snacks—all the fun stuff. In came fermented foods, fiber-rich veggies, kefir, and yogurt.

Vitamin B?

Yes, please. I’m no gourmet chef, but cooking from scratch gives me peace of mind (and fewer mystery ingredients). Plus, there’s something oddly satisfying about knowing exactly what’s on your plate—even if it’s your 50th kale salad of the month.

I’d call it the diet makeover but it really doesn’t mean that I don’t inhale food truck burrito, a SevenEleven Boston cream donut, or a package of chips drenched in delicious saturated fats once in a while. I

t means more like I refrain from unhealthy foods as much as I can, and I am mindful about ingredients, additives or even the hours of when I had my last meal.

Regular physical activity: Exercise helps manage symptoms, improve overall health, and boost mental well-being, but it should be done in a way that accommodates the illness.

Exercise wasn’t optional for me—it was a necessity. My left arm and hand needed all the help they could get after losing muscle mass. So, I got serious: swimming, Nordic walking, morning stretches, and even dumbbell lifting (light ones, don’t be too impressed).

Hiking is my happy place, and honestly?

Moving my body has transformed me in ways I never expected. Movement is medicine for me now. Better sleep, more energy, clearer thoughts, and a mood boost that even chocolate can’t top. Okay, maybe it’s a tie.

Adequate sleep: Rest is important for the body to heal and manage stress, especially with the added burden of chronic illness.

Sleep is your best friend when it comes to chronic illness because it’s when the body secretes hormones to repair our cells and tissues and the damage that chronic illness causes daily. It’s when your body does all the behind-the-scenes magic, repairing damage and keeping you functional.

I’ve had my fair share of restless nights, filled with nightmares, intrusive thoughts, and the occasional existential crisis. But committing to exercise has made a huge difference.

Also, pro tip: pay attention to what you eat before bed, ditch the horror movies, late-night news binges, and scrolling through social media before bed. Try gentle books, meditation, or even a little prayer to ease into sleep. Works like a charm for me (most nights).

3. EMOTIONAL AND MENTAL HEALTH SUPPORT

Coping mechanisms: Learning how to manage the emotional toll of living with a chronic illness is critical. This might include therapy, meditation, or mindfulness practices.

Getting used to a new health situation doesn’t happen overnight—it’s more of a slow, sometimes clumsy dance. I did see a therapist, though not specifically for my illness at the time.

Still, those sessions turned out to be pretty enlightening.

I picked up a few gems that stuck with me: how to master relaxation breathing techniques (hello, instant zen), the art of setting boundaries (because “no” is a complete sentence), and the realization that stress management strategies are everywhere.

Seriously, there’s no shortage—they’re in books, on the internet, on TV…you name it. The best part? I got to cherry-pick what actually works for me, my illness, and my lifestyle. It’s like a self-care buffet—just dig in…

Support networks: Having emotional support from family, friends, or support groups can make a huge difference in managing the mental strain of chronic illness.

Although I don’t belong to any support group as of today, I am very grateful to have very loving and caring people around me – family and friends as well. This means the world to me and I don’t take it for granted. 

Stress management: Chronic illness can lead to increased stress, which can worsen symptoms, so developing stress reduction techniques like breathing exercises, yoga, or journaling is key.

Stress and I go way back—like that one friend who just won’t take a hint and leave.

Prolonged exposure to it ?

Oh, it’s been like signing up for a rollercoaster I didn’t want to ride.

The dips?

Harmful psychosomatic symptoms galore. Over time, the stress baggage I carried turned into Chronic Fatigue Syndrome, complete with a grab bag of fun symptoms: lethargy, tension headaches, insomnia, irritability, and restlessness. Imagine trying to function when your mind and body are stuck in “low battery” mode.

At one point, things got so overwhelming that I had no choice but to hit the pause button.

I had to reevaluate and reorganize my life just to keep myself running on something other than sheer fumes. Stress relief wasn’t just a self-care buzzword anymore—it became a survival skill I had to master.

And that’s actually one of the big reasons I’m writing this blog. If you’ve ever felt like you’re barely keeping it together, I promise you’re not alone. Let’s figure this out together—because everyone deserves to feel like they’re thriving, not just surviving.

4. EDUCATION AND SELF-ADVOCACY

Understanding the illness: Educating oneself about the condition helps in making informed decisions about treatment options and managing day-to-day health.

Once I knew what I was up against, educating myself got a whole lot easier.

The internet became my best friend (and, okay, sometimes my worst enemy—but that’s another story).

It’s amazing how much information is out there—from medical articles to support groups to videos that explain things in plain English.

The real MVP?

Connecting with specialists or even other people navigating the same struggles. It’s a game-changer and something I’ll never underestimate again. 

Self-advocacy: Communicating effectively with healthcare providers and making sure personal needs are met is important for receiving the right care.

Self-advocacy is a sensitive subject that imparts valuable lessons. It certainly teaches self-awareness, self-confidence, and forces self-education.

Self-advocacy is a skill that’s as useful as it is awkward to learn so let’s talk about it. After getting my diagnosis, I suddenly found myself face-to-face with a revolving door of medical professionals, from technicians to big-shot professors.

If you’ve ever tried explaining your symptoms while feeling like a tiny fish in a very big pond, you’ll know what I mean.

I’m still working on speaking up confidently, but I’m getting there.

One thing I’ve learned?

Medical staff are human too. They’re often overworked and juggling a million things at once. This hit me after a few hospital stays, and honestly, it made me think twice before speaking up about my needs, specifically during my frequent hospital stays.

Being an independent, ambulatory patient sometimes made me feel like my issues weren’t “urgent enough.”

But here’s the important thing: you need to be considerate when and how to speak nevertheless self-advocacy is a must, and it’s worth the awkward moments. It teaches you to know yourself better, stand up for what you need, and dig into the info that helps you make better decisions.

It’s not always easy, but it’s definitely empowering—and, hey, no one knows your body better than you do.

5. ADAPTABILITY AND PATIENCE

Flexibility: Chronic illness can be unpredictable, so learning to adapt to changes in health, energy levels, or physical abilities is essential. 

Trust me – the faster you learn to be flexible, the less mental pain you will experience. However, I can’t preach or teach this, as it is a unique and individual experience.

I’ve realized that different people have varying levels of flexibility. It all depends on their mindset and the nature of their illness.

CIDP has taught me the art of flexibility—and no, I don’t mean touching my toes (though that’s a nice bonus).

Life with an unpredictable condition means adapting on the fly. Energy levels fluctuate, plans change, and some days, just getting out of bed used to feel like winning the lottery for me. But here I am – still standing.

Resilience: Surviving a chronic illness often requires resilience, the ability to bounce back from challenges and continue pushing forward despite setbacks.

Here is a confession: in the beginning, I had no resilience at all; everything would break, bruise, and bend me. I’ve learned how to be resilient by observing others who were much sicker than I was.

I can only express my gratitude in my heart for getting to know them because their bravery, toughness, faith, patience, and positivity in the face of visible pain and suffering keep inspiring me deeply every single day.

Their bravery and positivity (and I’ll probably never know how much of a mental effort it costs them to keep afloat) lit a fire under me.

Now, every time I face a challenge, I channel that inspiration. If they can endure with grace, so can I—even if my version of grace involves a little grumbling.

6. PREVENTIVE CARE

Preventing complications: Managing symptoms to prevent them from worsening is a core focus. This might involve preventive measures such as regular screenings, or maintaining a healthy weight.

Let’s be real: keeping an eye on your symptoms can feel like playing a never-ending game of “What’s That?!” But it’s crucial.

Neurological symptoms are especially sneaky—they don’t always come with visible signs like swelling or redness.

You’ve got to know your body like the back of your hand (or at least better than you know the plot of your favorite Netflix series).

Lifestyle maintenance: Sticking to healthy habits over the long term is crucial to slowing the progression of many chronic diseases.

Managing a chronic illness like CIDP means adopting a whole new lifestyle.

Diet, exercise, sleep, work, friendships—it all changes.

And yes, it’s overwhelming.

But here’s the thing: these changes can also lead to growth. It’s safe to say that you might emerge as a different person; the impact of living with a chronic illness is profound.

You’ll discover weaknesses or strengths you never knew you had; meet incredible people, and gain a perspective that many don’t get until much later in life. It’s not the life you planned, but it’s still your life—and it can be beautiful.

FINAL THOUGHTS

Living with a chronic illness like CIDP isn’t a walk in the park. It’s a balancing act of medical care, lifestyle changes, emotional resilience, and proactive health management.

But here’s the good news: you’re stronger than you think, and with the right mindset and support, you can thrive—even on the wildest rollercoaster.

So, if you’ve found yourself on a similar journey, just know this: you’re not alone. We may be in an uninvited club, but we’re in it together.

And who knows?

We might just surprise ourselves with how resilient we can be.