Tag: Guillain-Barre syndrome

When Numbness Became My Wake-Up Call: My Journey to a CIDP Diagnosis

What started as tingling in my hands slowly turned into a life-changing diagnosis: CIDP. This is my story of pain, patience, and the grace I found along the way — proof that even in the hardest moments, there’s still light in the growing.

The Search for Answers

It started as something small — something I brushed off. A tingle here, a little numbness there. My hands felt like they’d fallen asleep and just hadn’t quite woken up yet. I figured maybe I’d slept funny, or perhaps I’d overdone it the day before. I’m used to pushing through discomfort. Most of us are.

At first, I thought it might be something simple. Vitamin deficiency? Maybe nerve compression? And then one day, I fell and couldn’t get up. An ambulance came and took me to the hospital, and I was admitted. And so began the long, confusing carousel of tests — bloodwork, nerve studies, pokes, prods, and more waiting than I ever thought possible.

Each test felt like a tiny chapter of hope — until another “We’re not sure yet” pushed me back into uncertainty.

If you’ve ever lived in that waiting space, you know how loud it can get inside your head. Every tingle becomes a question. Every unanswered call from the nurse’s office feels like a cliffhanger in a story you didn’t ask to star in.

The Day I Heard “CIDP”

I was initially diagnosed with GBS (Guillian-Barré Syndrome), but soon after, my neurologist finally sat me down and said, “We think it’s CIDP — Chronic Inflammatory Demyelinating Polyneuropathy.” I remember nodding like I understood, but truthfully, I didn’t. It sounded clinical, foreign — too big to fit into the small, quiet life I knew.

Part of me felt relief that it wasn’t “all in my head.” Another part of me grieved the simplicity I’d lost — the days when walking across the room didn’t require courage or calculation.

Learning to Live with It

CIDP changed my life. There’s no sugarcoating that. But it also slowed me down in ways that revealed unexpected grace. I began to notice the small mercies: my husband’s patience when I needed help standing, the way prayer and meditation became less routine and more lifeline.

Most days, I hurt — physically and emotionally. Some mornings, my body feels like it’s made of static. The truth is, living with CIDP means living in the in-between — between pain and peace, frustration and faith, exhaustion and endurance.

Finding Grace in the Growing

If there’s one thing this journey has taught me, it’s that growth rarely comes wrapped in comfort. But even when my nerves misfire and my muscles tremble, grace shows up — sometimes quietly, sometimes through tears, sometimes in the form of a hand I didn’t have to ask for.

I don’t have all the answers, but I have a story. And if my story helps someone else feel seen — even for a moment — then maybe that’s what all this is for.

Foot Massager Added To The Arsenal

Today has been another rough day, just like the previous days. I hurt all the time, no matter what I do. But I’m taking it minute by minute. Just breathe through it, Sharon, is what I keep hearing in my head. So that’s what I’m doing.

I used another device that John got for me. It’s a foot massager mat. I used it on my feet, but couldn’t really feel it because they are numb. I still used it for the recommended 20 minutes, thinking that maybe that would wake up my nerves and muscles. I also used it for my hands, and that was so good. I can actually feel my hands and fingers right now. There is still pain, numbness, and tingling, but it’s not as bad. I know I’m going to be using that a lot.

There’s really nothing else for me to talk about. I’m either on the couch or in bed. I try to keep up with what’s going on in the world, and visit Facebook to see what’s going on with my friends. Several have been so supportive since I posted about what’s going on with me. That’s really comforting.

I think that’s it for now. I know it’s short, but that’s just all I can do right now. More later.

What The Heck Is Guillain-Barre Syndrome?

Hey friends—Sharon here, bringing you a little health lesson that’s both eye-opening and oddly graceful in its own way. Today, I’m talking about Guillain-Barré Syndrome (GBS). No, it’s not a fancy French pastry. (Though I’d argue there’s nothing wrong with a buttery croissant on a rough day.)

I’ve been hospitalized by this twice this year alone and still have pretty bad effects to this day.

What the heck is GBS?

GBS is a rare autoimmune condition where, for reasons that remain puzzling, your immune system decides to accidentally attack your own peripheral nerves—the ones outside your brain and spinal cord. Think of it like a security system gone rogue, misidentifying family members as intruders and causing chaos.

These nerves are responsible for movement, touch, temperature, and pain. So when they’re under attack, you start feeling tingling or weakness that usually begins in your feet or legs and slowly travels upward. Sometimes your face, arms, or other areas can get involved, too.

Thankfully, I have not experienced this farther than my forearms, and I pray that’s where it stays.

Why does GBS happen?

The short answer? We don’t totally know—and that’s the frustrating part. GBS typically pops up after an infection (like a stomach bug or respiratory virus), and occasionally after a vaccine—but the risk from vaccines is still far lower than the risk from infections themselves. I haven’t had any infections that I’m aware of, and I did have the COVID-19 vaccine a few years ago. This honestly came out of nowhere.

How scary is it?

GBS can ramp up quickly—over days to a few weeks. In some cases, it can be severe enough to affect breathing muscles, and even heart and blood pressure regulation—yeah, it’s serious enough to earn a spot in the ICU. (World Health Organization, Hopkins Medicine, Wikipedia, Cleveland Clinic)

For me, I think it came on over a few weeks, but I didn’t realize what it was at the time. I just knew that I hurt in my feet, legs, and hands.

But here’s a bright side: with early treatment—like immunoglobulin therapy or plasmapheresis—many folks recover fully or nearly fully. Recovery can take months or even a couple of years, but most go on to walk again and resume their lives. (Verywell Health, Hopkins Medicine, Mayo Clinic, Health, Wikipedia)

I had the Immunoglobulin therapy each time I was in the hospital. It’s a five-day treatment, that’s why I was in the hospital for so long.

A little Sharon-style twist to end on:

So yeah, GBS is like that rogue, well-meaning auto-correct that turns “heart” into “hart” and suddenly you’re in a medieval hunting lodge when you meant to tweet love. But here’s the silver lining: with the proper care and patience, it often corrects itself—and you come out wiser, stronger, and maybe with an unexpected appreciation for your toes. That is what I am counting on.

Hang in there, I try to be kind to myself, and try to remember that my body is acting like an over-caffeinated intern, maybe it’s my immune system just trying to make things… interesting.

Wobbling Into The Woobles: My First Crochet Adventure

Today was an okay day. I’ve been in pain — manageable in the morning, but by afternoon, my hands start complaining, and walking even short distances (like to the kitchen or bathroom) kicks things up a notch. My hands, especially, have been feeling it lately. Still, I’m trying not to let it get me down.

One thing that definitely lifted my mood? My Woobles package arrived! For those who haven’t heard of them, The Woobles creates beginner-friendly crochet kits that walk you through making your own adorable little animals — no experience required. Each kit comes with everything you need, plus super-clear video tutorials that make it easy and (dare I say?) fun.

I’m starting with Nico the Cat, because of course, I am the Cat Mom. My hands aren’t thrilled about a crochet project right now, but I’m looking at it as both a fun challenge and a way to give my fingers some gentle exercise. Plus, the Woobles kits are so cute, it’s hard not to want a whole menagerie.

If you’re curious, you can check them out here: thewoobles.com. They have everything from penguins to bunnies to dinosaurs — basically a small zoo you can make with yarn.

Tomorrow, the adventure begins. Fingers crossed… literally.
Stay tuned to see if Nico the Cat turns out picture-perfect — or if he ends up looking more like Nico the “What-Exactly-Is-That?” 🐾

Helpful Equipment I Use

John has been so helpful to me. He has purchased or rented the equipment I need, even before I knew that I needed it. I use them every day, and they have allowed me to move around my home almost as if my legs were not hampered by the CIDP. Here is a list of what I use.

I want to add links to each of the products below, but that is taking a while. I’m going to publish this without the links, but I hope you’ll come back as I update them. It is so weird to use my hands and fingers right now. Even my fingertips are struggling.

So, here we go.

Shower head
This shower head has a rainshower head mounted at the top with a handheld shower head with a hose that easily reaches when I am seated. It also has a toggle to pause the water when needed and turn it back on again.

Walker
This is what I used in the hospital and when I first came home. It was helpful, but after a while, it became a bit difficult to use. It had small wheels on the back legs, but I still had to pick it up to move a step across the carpet. I really wanted something that would help me achieve a more normal walking gait. Soon after, John invested in a rolling walker. That was a game-changer.

Rechargeable hand massager
John gave me this when I first started having hand pain and mobility issues. It gently massages and warms my hands one at a time. I usually use it for 15 minutes at a time, but lately, because my hands have been hurting more, I can only use it for about five minutes.

Step and handrail beside the bed
We have a high bed, and these help me to get in and out of bed safely.

Electric Leg Exerciser
I use this while seated on the couch. It has pedals that move my legs like those on a bicycle. It does it automatically, and I have a remote control to turn it off and on and adjust the speed.

Foot massager
This is similar to the hand massager, but for my feet. I can have both feet massaged at the same time. My feet and legs hurt all the time, and this helps to give me some temporary relief.

Bedside commode chair
We haven’t placed this beside the bed, but instead removed the bucket underneath and put it over the toilet in our bathroom. It is raised higher than the toilet bowl and has arms. That helps me to be seated appropriately.

Rollator Walker
This has been the most helpful for me. It has handlebars with hand brakes that I use when the rollator is parked, and a seat with a basket underneath. I use the basket to transport small items from room to room, like the book I’m reading, a notebook and pen, or my iPad. It also has a cup and phone holder that I use to hold my water bottle and iPhone.

Pouch for the front of the rollator
This was gifted to me when I was in the hospital the last time. It was handmade by volunteers. It is meant for a walker, but it fits nicely on the front of the rollator. It has pouches that allow me to carry things from room to room, like my pain meds, crackers for a snack, etc.

Cup and Phone Holder for the Rollator
John thoughtfully got me a cup/phone holder that clips onto the handlebars of my Rollator. It is very helpful to carry my water bottle to be refilled or even a glass of wine in the evening. The phone holder is, obviously, where I place my phone when moving from room to room. I’m due for a new iPhone, and we have confirmed that it will fit in the phone holder.

Bench for the shower
This is a bench that fits the back of the shower so I can sit facing the shower head. I’m still afraid of taking a shower because getting in and out, especially when the floor is wet, is a bit dicey, but the bench helps a great deal.

Hand cream for pain and nerve relief
I use two different hand creams throughout the day. They help a little bit, but applying the cream and massaging my hands is mostly what gives me temporary relief. The creams I use are Hempvana Ultra Pain Relief Cream and Nervive Pain Relieving Cream. I have also used Aspercream with Lidocaine.

CBD Oil
This oil is THC-free and contains 2000mg. I use the dropper to put the oil under my tongue. I use it 2-3 times a day.

This seems like a lot when I see a list like this, but they are used throughout the day and only take a short amount of time. Each of them is helpful in its own way, and I will continue to use them until they are no longer needed (which I’m praying will be sooner rather than later).

Some of the products mentioned here are affiliate links, and I make a small commission. There is no cost to you.

Uncertainty

Today has been another rough day. I don’t know where my fingers are, I don’t know where my feet are. It’s the weirdest thing I have ever felt. And also the most frustrating.

I think I may have posted this before, but it’s hard to tell where my feet are when I need to get up and walk. Yet, they do what they need to do. My hands hurt and are numb. I don’t know how I am typing this entry, yet I am. It’s like the mind wants to do something, but the body doesn’t want to cooperate.

This is the absolute weirdest thing I have ever gone through.

Let’s Do This

Well, here I am. I’m starting a new blog to document the illnesses I am going through, but more importantly, how I am dealing with them.

My diagnosis has been Guillain-Barre Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy.

This has been one of the hardest things I have had to go through. It has tested me to my limits, but I am glad to say that I have not let it take me down.

I most certainly am having some hard things to deal with. Just typing this entry is painful for me, but I am determined to push through it. I can’t allow myself to just sit by and let this illness take over me. I have things I want to do, and I am determined to still do them. It might take longer than I would like, and it will probably hurt quite a bit. But I will win.

The purpose of this blog is to document what I am experiencing and how I am getting through it. I’m hoping that it might help someone who is starting to experience the same thing.

So, let’s do this.