You might experience a large range of symptoms if you have Lyme disease. But sometimes it seems like the same few symptoms get talked about more than others. Conversations about Lyme disease tend to revolve around the bullseye rash, flu-like symptoms, joint pain and fatigue. But the infection spread by a tick bite can infiltrate any organ in the body and thus lead to tons of symptoms affecting the muscles, brain, nervous system, heart, sleep and more.
Lyme disease symptoms overlap with many other chronic conditions, like fibromyalgia, multiple sclerosis and rheumatoid arthritis (and the testing for Lyme is not always reliable), so it can be difficult to get a Lyme disease diagnosis — making it all the more important that we keep talking about all the different symptoms Lyme disease can cause and raise awareness of its manifestations. So we asked our Mighty community to share a “little known” or less-talked-about symptom of Lyme disease they experience. If you have Lyme disease, perhaps some of these symptoms will ring true for you, too.
Of course, if these symptoms look familiar to you, check with a doctor to confirm they are due to Lyme disease and not a separate condition.
Here’s what our Mighty community shared with us:
“This is a picture of me in the middle of a seizure. My seizures caused by Lyme disease are frustrating since I lose all control over my body and am unable to do anything for myself during my seizure episodes. I can’t even see during these episodes if my eyelids are fluttering. My seizures due to Lyme make me feel vulnerable and dependent on others.” — Caitlin F.
2. Skin Sensitivities
“Since Lyme I get a rash under my ring.” — Jeannette H.
“In honor of Lyme Disease Awareness Month I am posting a photo of my current state. I have had a migraine for about five days straight and as a result my palsy has flared up…” — Shymala H.
4. Depression and Anxiety
“When people think about Lyme disease, they often think of physical aches, pains, fever and flu-like symptoms. I don’t think that most are aware of the soul-crushing depression, debilitating anxiety and cognitive issues the disease causes. I went from leading an active, vibrant life with a career, lots of friends and interests, to a life of isolation and despair. I don’t even recognize myself in this picture. It’s almost too awful to share! I spent many days in that bed you see in the background, curled up in the fetal position, zoned out, in agony, unable to reach out for the support that I desperately needed.” — Milena L.
5. Light Sensitivity
“Hiding behind my sunglasses when your head feels like it’s filled with sledge due to brain inflammation and light sensitivity.” — Amy B.
6. Frequent Falling
“These are my teeth bonded together after one of many falls. I’ve had multiple stitches in my face and a couple of concussions from a) my leg or legs going numb or jerking and b) damage to my vestibular system. If you look closely you can see the scar above my lip. That one caused 14 stitches inside my mouth and two on the outside where my teeth went through. But the good news is that I can write this message. I find it very difficult to read and somewhat difficult to write most of the time.” — Stacie R.
7. Panic Attacks
“Extreme panic attacks heightened by medicine. Panic attacks that make you feel like dying.” — Alyssa W.
8. On-and-Off Paralyzation
“I have on-and-off paralyzation. Here I was in the lower part of the ICU because I woke up from anesthesia paralyzed from the waist down and couldn’t go to the bathroom myself. I also get Bell’s palsy and paralyzation in other parts of my body.” — Kali H.
9. Loss of Self
“Having Lyme disease has made it difficult for me to get at the root of who I am and what my identity is. Because healing isn’t linear, when I feel like the healthy version of myself, I can participate in my favorite hobbies, engage socially with others, and feel confident about myself, but when I feel unhealthy my image becomes warped and I identify with being sick, weak, struggling and unable to achieve my dreams. This can be jarring and unsettling to deal with on a daily basis.” — Julie M.
“Vulvodynia. It is a symptom/condition that causes extreme genital nerve pain. It makes it hard to wear any kind of pants, sleep at night, walk, or even move. It can also get infected and land you in the hospital from lesions and bleeding. It feels like living with razor blades in your underwear but having to pretend you’re fine.” — Anonymous
11. Immune System Dysfunction
“These photos show just how bad Lyme disease messes with your immune system. At the height of my illness I was reacting to absolutely everything, I couldn’t even hold a warm cup of tea without having a mast cell flare up. When you have untreated Lyme for a long time your body loses its ability to determine what it should be fighting off, and instead just attacks everything.” — Melissa B.
12. Sensitivity to Caffeine
“Any amounts of caffeine will set off random tremors in my body. The last time a barista topped up my decaf with regular brew my head twitched from forward facing to looking at my shoulder constantly for 20 minutes. I was so dizzy and exhausted by the end of it I laid down for fwo hours.” — Lanna B.