What Does Lyme Disease Feel Like? A Firsthand Account of Joint Pain and Lingering Effects
Key takeaways:
A tick bite in 2023 exposed Julie Chappell to Lyme disease, leaving her with joint pain and fatigue.
She was prescribed the antibiotic amoxicillin, and her doctor later recommended physical therapy to relieve her muscle and joint pain.
These days, Julie is feeling better, but she still has symptoms.
During a lifetime of outdoor adventures, Julie Chappell has received plenty of tick and insect bites. But the tick bite she discovered on May 2, 2023 troubled her from the beginning.
Julie, a 74-year-old retired college English professor, felt the tick on her shoulder when she first woke up. “I pulled it out and flushed it but saw another entry point next to it that was larger and redder,” she recalls.
Lyme disease and its long-lasting effects
Julie was concerned about the redness, so she called two of her neighbors who are retired nurses. They advised her to watch for symptoms of Lyme disease, she says, including a rash in a “bull’s-eye” pattern around the bite.
Over the next several days, Julie developed several symptoms, including a fever, severe fatigue, and impaired vision. And she had so much joint and muscle pain that she sometimes found it hard to walk.
About 2 weeks after discovering her tick bite, she visited a clinic her neighbors recommended. At the clinic, a blood test confirmed what Julie already suspected: She had Lyme disease.
The doctor Julie saw prescribed her a 2-week course of the antibiotic amoxicillin and told her that her symptoms might last for months or longer.
What does a tick bite look like? A tick bite usually causes a small, red bump, but not always.
How do you know if you’ve been bitten by a tick with Lyme disease? If a tick that’s carrying Lyme disease bites you, you may develop a distinctive bull’s-eye rash.
What can happen if Lyme disease goes undiagnosed? For one woman, it led to years of mysterious symptoms and lots of medical bills.
That marked the beginning of a challenging year.
Treatment helped, but her symptoms are ongoing
Julie says she thinks that she picked up the tick from her neighbor’s dog, who had wandered over for a biscuit and a hug.
Julie and her husband, Hank Jones, live in Keystone Lake, Oklahoma, a wooded area in the northeastern part of the state. The region is home to plenty of wildlife — including black-legged ticks (deer ticks), which spread Lyme disease. And ticks are abundant in Oklahoma in early May, when she was bitten.
For people who work at colleges, May is a terrible time to get sick. Although Julie is retired, her husband is a professor at a Texas college more than 350 miles away. And because of the distance, he spends most of the week staying near the school and comes home on weekends.
With his calendar full from finals and end-of-year events, the days after Julie was bitten were a busy time for Hank, which is why she waited to go to the clinic. During the two weeks after discovering the bite, Julie navigated the household chores and cat care as best she could without him there. And when he was through with finals, she went to the clinic, received her diagnosis, and started treatment.
The amoxicillin Julie was prescribed did its job, and her symptoms gradually improved. But they didn’t go away completely.
The ongoing joint and muscle pain was especially difficult to deal with, Julie says. As the hot Oklahoma summer progressed, her pain still didn’t resolve. So her doctor recommended physical therapy.
Then, Hank was diagnosed with skin cancer. Julie was seeing results from the physical therapy and felt better by that time, but it was still a difficult season.
“His cancer was more unsettling than the Lyme disease for me,” she says, adding that Hank is now cancer-free.
Julie has continued with physical therapy, although she’s taking a brief break because of a pulled muscle.
A history of insect-borne illness: Lyme disease vs. West Nile virus
This wasn’t Julie’s first brush with insect- or tick-borne illness. She and Hank both contracted West Nile virus in Texas in the early 2000s. And she remembers that the symptoms were similar to Lyme disease.
“West Nile hit our muscles and joints hard, turned our skin red all over,” Julie recalls. She says they also had fatigue and headaches. But they eventually made a full recovery.
“I wouldn’t recommend either West Nile or Lyme disease,” Julie says. “But the Lyme keeps on giving over a year later.”
How Lyme disease has changed Julie’s life
A Kansas farmer’s daughter, Julie has always loved the outdoors. She has spent time in the woods and grassy areas of several states, from Virginia to California to Texas.
“I had lots of ticks and loads of mosquito and chigger bites in most of these places,” she says, explaining that it wasn’t until the 2000s that she contracted any diseases, which happened to occur in Texas and Oklahoma.
Julie says she thinks climate change and population growth are contributing to an increase in tick-borne illnesses. And the science seems to back up that claim.
The CDC has reported a sharp increase in tick-borne illnesses in the U.S. since 2004. A 2018 report noted that illnesses from mosquito, tick, and flea bites tripled between 2004 and 2016, with ticks responsible for more than 60% of these cases. A 2021 article from CDC experts further emphasized ticks as a growing public health threat.
She’s not symptom-free yet, and she’s more cautious
These days, Julie is back to enjoying sunsets on the lake, traveling to poetry events with Hank, and snuggling with her cats. But she isn’t symptom-free. She continues to have joint and muscle pain, compounded by arthritis. And she gets more headaches than she used to.
“Full recovery is possible,” she says, “but my age probably makes it less likely.”
Julie still loves gardening, hiking, and spending time in nature. But she’s more cautious outdoors than she used to be.
“I no longer feel very adventurous outside my place,” she says. “I’m fine when I visit my son in Denver or my daughter in Honolulu — no ticks in the city or on the beach.”
Julie’s tips for preventing and treating Lyme disease
Although Lyme disease is most common in the Northeast and Upper Midwest, cases have occurred in almost every state. That’s one of the reasons that Julie says Lyme disease awareness and prevention are important, no matter where people live.
Below are Julie’s four tips for reducing the risk of contracting Lyme disease.
1. Consult a healthcare provider if you notice a suspicious bite
For Julie, the unusual redness near her bite was a clue that something was wrong. If she hadn’t sought treatment, the disease could have taken an even worse toll. Julie also developed the bull’s-eye rash that’s a common indicator of Lyme disease. But not everyone with Lyme disease develops this rash.
2. Consider getting a blood test if you suspect Lyme disease
Lyme antibodies can be detected with a blood test, which is how Julie’s doctor confirmed her diagnosis. But the antibodies don’t show up until several weeks after exposure. So healthcare professionals also rely on other criteria to diagnose Lyme disease, including a person’s symptoms and history of tick exposure.
3. Take precautions to prevent tick exposure
The best way to avoid Lyme disease is to avoid tick bites altogether. A repellent approved by the Environmental Protection Agency (EPA) is one of the best defenses. Products containing DEET are especially effective. But if you’re allergic to DEET, as Julie is, alternatives are available.
Julie also recommends covering up exposed areas of skin when you’re outside. If you’re strolling through a tick-prone area, wear long pants, long sleeves, high socks, and a hat.
4. Be careful around animals that may carry ticks
Julie offers one final tip gleaned from her own experience: “Don’t cuddle other folks’ dogs who are left to run in the forest and fields near you.”
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