Experiencing Symptoms

This category refers to symptoms that affect your strength and stamina.

Fatigue

The fatigue of Lyme disease is not the same fatigue you feel when you are sleepy, or after a hard workout or a busy day. When you first get Lyme disease, the fatigue might feel like it does when you have the flu. You might be too tired to do your usual activities at home or work. You won’t feel better by taking a nap, as you might when you are just tired.

If your Lyme disease progresses, the fatigue could get worse. Your body might feel heavy with exhaustion, like it is being weighed down. You might need to rest even more, but will not feel significantly restored by doing so. You may not have the energy to work, go to school, or participate in your usual daily activities.

The intensity of Lyme fatigue varies from person to person. Your fatigue might be minor and not too disruptive to daily life. Some might be able to work part-time and then need to rest, while fatigue might prevent others from working at all. You might be able to sit outside with your kids but not feel up to a game of catch. For some people, the fatigue might be so severe that you might not have the energy to focus or to climb a flight of stairs. You might not be able to get out of bed for days at a stretch. No matter how much you rest or sleep, you never feel refreshed.

"The word fatigue is completely inadequate to describe what Lyme disease does, because someone hearing this word might relate it to their own idea of fatigue. What happens is more like 'collapse.'"

Lyme Disease Patient Experience Survey Respondent

Male, 55, Seattle, WA

Lethargy

Lethargy is a lack of energy or enthusiasm. You feel sluggish, even if you don’t feel the need to sleep. You lack the “oomph” to do your usual activities, whether it’s working, exercising, or helping out at home. This isn’t because you’re lazy, depressed, or don’t want to do these activities. It’s because you don’t have the physical energy to do these activities or do them well.

Malaise

Malaise is a general sense of not feeling well, sometimes referred to as “being under the weather.” You might feel sluggish, run down, or disinterested in your usual activities. Many people experience fatigue, malaise, and lethargy together, similar to the way you might feel when you have the flu.

Lyme disease can cause inflammation in the heart, called Lyme carditis. Lyme carditis is not common, but it can be fatal. The symptoms of Lyme carditis are described below and include chest pain, dizziness, fainting, heart palpitations, irregular heartbeat, and shortness of breath. These symptoms can also be caused by other serious heart conditions. Seek immediate medical help if you experience any of these.

Chest pain

You may feel discomfort in your chest, such as squeezing or tightness, or a dull burning sensation. You should report chest pain to your doctor.

Dizziness

You may feel woozy, weak, or unsteady. You may feel as if you might faint, especially if you stand up too quickly.

Fainting

Fainting is a sudden loss of consciousness. You may first feel lightheaded, and then pass out.

Heart palpitations

You may feel like your heart is racing, fluttering, or pounding too hard. Your heart may be racing as if you have been exerting yourself, even if you are sitting still or walking around your house. These sensations can come on while you are resting or can occur when you are active.

Irregular heartbeat

An irregular heartbeat means your heart is beating out of rhythm instead of at a steady pace. It may skip beats, or go fast and then slow down, for no apparent reason. Sometimes an irregular heartbeat can cause you to feel faint, lightheaded, dizzy, or sweaty.

Shortness of breath

You may feel like you can’t get enough air when you take a breath, feel breathless, or feel like you’re unable to take a deep breath.You may feel like it is an effort just to take a breath. You might also experience a tightening in your chest.

This category includes symptoms that affect your joints, the parts of your body where bones meet.

Lyme arthritis

Arthritis refers to joint inflammation. Arthritis associated with Lyme disease typically occurs in one or more large joints, like a knee, hip, or shoulder. The affected joint may be swollen and red, feel warm to the touch, and will likely hurt when you move it. This inflammation may come and go or move between joints.

Joint pain

See: Pain-related symptoms

Neurological symptoms affect thinking, memory, concentration, and judgement.

Brain fog

You may have heard this term in relation to COVID-19, but it also occurs in people with Lyme disease. While brain fog is not a medical term, it is used to describe how you feel when your thinking is slow, fuzzy, and not sharp. It might seem like you’re in a haze, similar to how you feel when you’re sleep-deprived or after taking a medication that makes you drowsy. You might be forgetful, have difficulty following conversations, or have trouble focusing on something you’re reading. You can’t sleep off or rest to clear the feeling of brain fog.

Concentration issues

Sometimes you might be able to concentrate for short periods of time, and other times not at all. You might have trouble following a conversation, or you might have to reread a paragraph a few times to grasp the meaning. It might be difficult to multitask, and you might have trouble planning and organizing.

Disorientation

You may suddenly find yourself getting lost in familiar places. For example, you might go for a walk in your neighborhood and not remember how to get home, or forget where you are when driving to work.

Memory issues

When someone asks you at dinnertime what you did that day, you might have trouble remembering. Or, if someone tells you to recall a list of three items, you might only remember one of them. Sometimes it may take you just a few moments longer than usual to come up with the answer. You might also lose your train of thought mid-sentence. Lyme disease can particularly affect your working memory, the ability to briefly hold and use information. Working memory enables you to briefly hold information in your mind while doing a task. For example, when you look up a phone number on a website, you need to hold that number in your head when you go to make a call.

"The short-term memory loss made it not only difficult to do anything but dangerous. Did I turn the oven off? Did the dog go outside? Or come in yet? It was awful."

Lyme Disease Patient Experience Survey Respondent

Female, 31, Atlanta, GA

Nerve-related discomfort (burning, stabbing, tingling sensations, or numbness)

See: Pain

Paralysis of the facial muscles (facial palsy)

Facial palsy is muscle weakness that causes one or both sides of your face to droop. Your smile might look more like a frown, or might be uneven, or one or both of your eyelids might droop. The drooping can be slight in some people and more obvious in others. You may also notice changes in taste, ear pain, or pain behind the ear.

Sleep disturbances

You might have difficulty falling or staying asleep. You might need more sleep than usual but wake up feeling unrefreshed no matter how much sleep you get. Poor sleep intensifies fatigue and contributes to concentration issues, brain fog, irritability, increased pain, and depression.

Trouble finding words

When speaking or writing, you may find yourself stopping mid-sentence because you can’t think of the next word. It’s that feeling of “it’s on the tip of my tongue” that everyone sometimes gets when trying to recall, say, the name of an old song or movie. But with Lyme disease, the difficulty with retrieval happens with more typical words. For example, if you’re planning to drive to the grocery store, you might say, “I need to get in the ___ to go to the store,” but blank on the word “car.”

Vertigo

Vertigo is the sensation that either your environment or your body is moving, usually spinning. It is not the same as feeling dizzy, which doesn’t involve a spinning sensation. You might feel like you are spinning, or that the room is spinning around you. You might feel off-balance or experience nausea, vomiting, or ringing in the ears (tinnitus).

Mental, emotional, and behavioral symptoms fall into this category.

Anxiety

People with anxiety have frequent or constant nagging feelings of worry or fear. These feelings are often intense and out of proportion to the real troubles and dangers in their everyday life. Anxiety can sometimes lead to panic attacks.

Behavioral changes

You or those around you might notice you are not quite yourself. You may be moody when you are usually cheerful, or you may get angry faster than you typically would. You might develop concerning new habits, for example, including obsessive-compulsive thoughts and behaviors such as repeatedly washing your hands, or checking the stove to make sure you’ve turned it off.

Depression

Depression is more than feeling a little sad sometimes. You may feel low, blue, sad, irritable, or unable to enjoy everyday activities most or all of the time. You may feel guilty, hopeless, or suicidal. If you are having suicidal thoughts, immediately seek medical help.

Depression can impact your appetite, sleep, and energy. It can also contribute to difficulty concentrating, memory issues, and trouble making decisions. Depression may be directly related to Lyme disease, and can also be an understandable response to new symptoms that impact your quality of life.

Mood swings

Your moods may fluctuate more than usual or unexpectedly. For example, you may be feeling calm and happy, and then suddenly become sad and irritated, or vice versa. You also might be suddenly tearful at times when you otherwise wouldn’t be. You may find that people or things “get on your nerves” more than usual. You may be quick to anger, be impatient, or just feel like you’re in a bad mood.

These symptoms of Lyme disease are not specific to one of the other categories.

Chills

Chills often accompany fever, but don’t have to. You may feel cold even though you’re not in a cold environment. Your body may shake, shiver, or tremble; your teeth may chatter; and you may get goosebumps. Chills are your body’s way of raising its core temperature — often to help fend off an infection.

Fever

Fevers associated with Lyme disease are most common early in infection. Lyme-associated fevers can be low or high.

Loss of appetite

The medical term for loss of appetite is anorexia, but this is different from the eating disorder anorexia nervosa. You may not feel hungry, or food may not seem appealing to you, which could lead to weight loss.

Swollen lymph nodes

Lymph nodes contain immune cells that fight infection. They are located all over your body. When you are fighting an infection, you may feel swollen lymph nodes at the side of your neck, or in other places like under your chin or in your armpits or groin. They may be tender or painful. It’s a good idea to let your doctor know about any swelling in the area of lymph nodes.

Lyme-related pain can cause a variety of sensations. Migratory joint pain, muscle pain, and nerve pain, which moves around the body for no obvious reason, is a hallmark symptom of Lyme disease.

Body aches

You might feel mild to moderate achiness, where parts of your body hurt but you can still function. Or you might feel intense achiness that makes you feel weighted to the bed or couch, causing discomfort that you can’t push through. Sometimes you might ache all over, and other times different parts of your body might ache.

Bone pain

You might feel pain in one or more bones, at different times and on different days. It might last hours or days in one location. The pain might be a dull ache, or it could be more of a sharp pain.

Burning sensations

You might feel burning sensations in your arms, legs, hands, or your torso. Rather than feeling hot to the touch, your extremities might feel hot on the inside, as if your nerves are on fire. Burning sensations that come and go and migrate around the body are known as Lyme neuropathy.You might feel mild to moderate achiness, where parts of your body hurt but you can still function. Or you might feel intense achiness that makes you feel weighted to the bed or couch, causing discomfort that you can’t push through. Sometimes you might ache all over, and other times different parts of your body might ache.

Headache

In early Lyme disease, you might get a headache as a result of fever. Over time, you might also get headaches that come and go, like other Lyme-associated pain. You might feel pain in one area of the head, in multiple areas, or all over. You might feel a dull ache, like when your temples are throbbing, and still be able to go about your daily activities. Or you might feel more severe pain that keeps you in bed. In early disseminated Lyme disease, headache can be a sign of meningitis; this is usually associated with neck stiffness and sensitivity to light and sound.

Joint pain

Joint pain from Lyme disease is migratory, meaning that it moves around the body. Your wrist might hurt one day, and your knee might hurt the next. The pain can last hours or days in one location. Typically, unlike Lyme arthritis, there is no redness or swelling. (see: Joints.)

Muscle pain

Pain can occur in any muscle of your body, and in different muscles on different days. It might last hours or days in one location. The pain can range from soreness, similar to what you might feel after a workout, to a deep ache or sharp pain. You might feel muscle pain when moving around, but you also might feel uncomfortable just sitting on the couch, or your arms might hurt when you’re typing.

"There were literally dozens of symptoms. Muscle and joint pains, nerve pains, shooting pains, from head to toe. These pains varied from day to day and week to week and ranged from mild to severe. I had fatigue, anger, depression, memory problems, cold intolerance, persistent rashes, and vision issues."

Lyme Disease Patient Experience Survey Respondent

Male, 69, Moreno Valley, CA

Neck stiffness

Your neck might feel tight and achy, the way it can when you’ve slept in a funny position. It might hurt to turn your neck. You may have pain down the back of your neck when you bend your head forward. You should speak with your doctor immediately if this occurs.

Numbness

It’s how you feel when you get novocaine at the dentist, and you can’t feel your cheeks or lips. You might lose feeling in any part of your body or face, but it most typically affects the fingers and toes.Numbness may come and go and migrate.

Stabbing sensations

You might feel pain that radiates down your arms or legs, or feel like you are being poked with something sharp in any part of your body. You may experience these sensations on different parts of your body on different days.

Tingling sensations

You might feel a tingling sensation in your nerves, running to your arms, legs, hands, or feet, similar to the “pins and needles” feeling you get when you have been lying on your arm or leg too long and it “falls asleep.”

The rash associated with Lyme disease is called erythema migrans (EM). It sometimes, but not always, has a target-like appearance, so it is sometimes called a “bullseye rash.” It’s important to know that not all EM rashes look like bullseyes, especially not early on. EM rash typically appears at the site of your tick bite, but in later stages of disease might appear elsewhere on your body. Your rash could be red or blue-ish purple, and it might be blotchy. It also might develop blisters or a crust. EM rashes can look different on different people and on different shades of skin.

One thing that’s true about all EM rashes is that they expand (“migrans” means spreading). Over days or weeks, you’ll probably notice your rash spread across your skin, up to 12 inches across or more. Sometimes, as the rash expands, it will develop a central clearing, which is what can make it look like a bullseye or target.

Your rash might feel warm or hot to the touch, but it is not usually itchy or painful. The rash should go away in a few weeks. However, if your Lyme disease is not treated, multiple EM rashes can appear on different parts of your body. They might be grouped together, or the rashes might appear on various parts of your body.

"I only ever experienced the rash."

Lyme Disease Patient Experience Survey Respondent

Male, 32, Bloomington, MN

Lyme disease can affect the way you perceive your environment, making normal stimuli feel uncomfortable or overwhelming.

Cold intolerance

You may find yourself feeling cold temperatures more intensely. You may find that you have trouble staying warm, need multiple layers of clothing, even in warm weather, or find that you often feel cold while others in the room are warm.

Sensitivity to light

Light (inside or outside) might feel too bright and almost overwhelming. You may feel the need to turn away from flashing lights from an emergency vehicle or find it uncomfortable to watch TV. Exposure to light may give you a headache or eye pain or cause a panic attack.

Sensitivity to sound

Standard volumes of conversation or TV might sound too loud, and you might be bothered by sounds that other people don’t notice, like the buzzing of a fluorescent light bulb. You may feel overwhelmed by noisy restaurants or crowded places like stadiums. In certain situations, you might notice a ringing or buzzing in your ears or head.

• constipation

• cough (as an upper respiratory symptom in early Lyme)

• decreased libido

• hearing loss

• neuropsychiatric issues, including a sense of being dislocated from reality, hallucinations, mania (an unusually high level of energy, activity, mood, or behavior), and paranoia.

• pink eye (conjunctivitis)

• psychosis

• seizures

• sore throat (as an upper respiratory symptom in early Lyme)

• tinnitus (ringing in the ears)

• tremors

• twitching (of facial muscles or elsewhere in the body)

• visual disturbances (floaters, blurry or double vision)

• urinary problems (difficulty urinating, bladder infection, leaking).