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Lyme disease often feels like a puzzle with missing pieces. One day you're enjoying a hike, and the next, you're struggling to piece together a list of baffling symptoms that seem to come from nowhere. This blog post shares my journey through a maze of Lyme symptoms, along with invaluable lessons learned along the way. Settle in as I share my wild ride with these peculiar symptoms!
What is Lyme Disease?
Lyme disease is a tick-borne illness caused by the Borrelia bacterium. Most people know of the classic “bull’s-eye” rash that can show up after a tick bite, but not everyone experiences that symptom. I am one that never noticed the bulls-eye rash or remember having that symptom. Lyme can manifest in weird and unexpected ways, leading to a range of symptoms such as fatigue, joint pain, and neurological issues, which can change in intensity over time. Let’s look closer at these symptoms as I share a little about what I experienced.
The Symptoms Start to Emerge: A wicked combination of fatigue and insomnia
It began innocently enough: I felt tired, but just figured it was due to my workouts and the busy life of motherhood. I thought no big deal, a good night's rest would fix it. As days melted into weeks, fatigue became a constant companion. This was not just tiredness, this became straight up exhaustion as if I had just run a marathon and couldn't recover after the race. No matter how much rest I got, it didn't seem to help. In all my years playing soccer, I had never in my life experienced this kind of fatigue. Not only did I experience this overwhelming fatigue, but I also started having restless nights which led to insomnia. If you have ever experienced insomnia, you are aware that it can lead to problems of it's own. So compile, extreme exhaustion/fatigue and insomnia on top of each other and you have a recipe for disaster. I have always prioritized sleep and most nights have a good bedtime routine so this was uncharted territory for me. I would go from having insomnia to sleeping hours on end trying to catch up on rest when my body allowed but with Lyme you never catch up. You literally just stay in a state of fatigue bouncing back and forth from sleeping a lot to not sleeping at all and no matter what, you're absolutely exhausted. It wasn’t just physical weariness; it drained me mentally and emotionally, casting a cloud over my daily activities.
Memory, where are you?
Soon, I began to experience memory lapses. Initially, these were minor annoyances, like misplacing items such as my keys. Gradually, I struggled to recall recent conversations and basic tasks, sometimes forgetting what I had for breakfast just hours before or if I ate anything at all. There were times I had no idea who people were or where I was at. Getting lost driving, or not remembering where my driving destination was became a frequent reality. For example, one day I was running an errand and kept circling a nearby town and had no idea where I was going even though when we set out for the errand, I knew exactly where I was going. It wasn't until my youngest son asked me where we were going, that it clicked and we were able to proceed to our destination. I was alert but couldn't remember where we were going or why we were in the car. I called my husband right away to tell him what had happened as communication with him was key. At that point, we were tracking every single symptom for my neurologist to see. I have always had a sharp memory so for me personally, this was an extremely scary feeling. This forgetfulness was not only unsettling but also disheartening, as I could feel my cognitive abilities slipping away but had no idea why. Still to this day, there are things I don't remember during the foggiest times, so I rely on my family and friends to keep me informed. The memory lapses were just the beginning of my cognitive and neurological symptoms.
The Bizarre Skin Reactions
Just when I thought things couldn’t get any stranger, unusual skin reactions began to appear. Hives and rashes erupted in random places on my body, especially on my extremities. These flare-ups arrived and departed unpredictably, leaving me frustrated and bewildered.
The Joint Pain Rollercoaster
Anyone who has had Lyme disease can attest that joint pain is a defining symptom. Some days, it feels like someone hit my knees and elbows with a hammer, making even simple tasks feel monumental. For instance, I could wake up feeling relatively normal, only to be blindsided by debilitating pain in the evening or vise versa. Not to mention it is a migrating pain...the arthritic like pain would not just be in one place, it migrates from joint to joint making it difficult to get things done. I live an active lifestyle and come from an athletic background so feeling some discomfort is something I can handle but this was on another level. I am in my early forties and the joint pain literally stops me in my tracks as if I am a 90 year old woman unable to move.
There was one particular day I remember finding myself unable to walk up and down the stairs in the morning, yet by evening I was shooting hoops with my kids. There have also been days where I wake up feeling great just to be blindsided with pain by the afternoon/evening. This unpredictable nature of joint pain has challenged me to stay resilient and adaptable knowing that at any moment I could be sidelined.
Double Vision: What the heck is going on with my eyes?
Another symptom I experienced was double vision. I have always had good vision ranging from 20/20 in one eye and 20/15 in the other. One morning, I woke up and had a hard time seeing. At first, I just thought oh, I'm so tired I'm not seeing straight. I sat up in bed and told my husband my eyesight was off and I was seeing two of everything. Shortly after that, the brain fog and muscle weakness set in and I had a hard time getting out of bed. I was scared as I knew this was not normal but up until this point I had never experienced any vision problems. My husband immediately took me to the ER because the vision was a new symptom and we knew we could not get into my neurologist the same day. My memory is very shaky when it comes to that ER visit as that was right before I ended up being bedridden for three weeks. I do remember the triage nurse asking me to verify my info on my license. I had to hold her wrist in order to really focus on what was on my license. I couldn't read it otherwise. I was seeing double and it came out of nowhere. My husband and I were both like, what the heck...what is going on?
Brain Fog: The Invisible Thief
The most frustrating symptom for me is “brain fog” as some of us call it Lyme brain. It feels like a thick cloud has settled over my mind, rendering simple tasks—like texting, writing emails, or reading a book—extremely difficult. Brain fog is a common symptom in patients with Lyme neuroborreliosis (discussed in an upcoming post), where the Lyme bacteria (Borrelia) has crossed the blood-brain barrier into your CNS which is what I am dealing with.
This invisible thief stole my focus, often leading to feelings of embarrassment and confusion. Some days, I was relatively sharp, yet others left me staring blankly while trying to remember a simple word like “book” for twenty minutes. There were days I was not able to communicate at all...imagine going from talking, texting and writing all the time to not being able to do any of those. Then you add the memory lapses (mentioned above) on top of that and you have a very scary situation not only for me but for my loved ones. They had a front row seat watching me deteriorate physically and neurologically with no answers as to why this was happening. I went from being a young, active and healthy adult to someone that couldn't walk, talk and was bedridden within a matter of months. Those days were some of my darkest days as I didn't know if I would survive whatever this was. Implementing strategies like writing down tasks (on my good days) helped me regain some control over my mind.
Navigating the Maze of Lyme Symptoms
The symptoms listed above are my more severe symptoms I struggled with and continue to struggle with depending on the day. I have also experienced other symptoms that I did not go into detail about. Inflammation of the brain, facial numbness, muscle weakness, neuropathy (numbness/tingling in arms/hands/feet), heart palpitations, chills/regulating body temp, and severe headaches just to name a few. Living with Lyme is a winding road with a bunch of twist and turns, trying to navigate different symptoms that can pop up out of nowhere.
Managing Lyme disease doesn't come with a clear manual, and the diverse symptoms can feel overwhelming. From bizarre skin reactions to puzzling brain fog, my journey has been one of ups and downs.
Through it all, I learned the importance of advocating for my health, finding community, and being adaptable amid uncertainty. It's crucial to maintain a positive mindset even when things get tough and surround yourself with a strong support system because living with Lyme is not for the weak. If you face similar symptoms, remember that you are not alone. For me, I am still battling as I am currently undergoing treatment. So no matter what stage of the fight you're in, just remember to keep going because there is a light at the end of the tunnel no matter how long that tunnel may seem.
Life can throw you a curve ball with unexpected challenges, but with resilience, support, and self-care, we can confront them. Here's to navigating life's peculiarities and conquering Lyme, one strange symptom at a time!
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