Strange or Unexpected Lupus Symptoms
Last updated: August 2023
Living with lupus brings many challenges. Odd and unexpected symptoms arise. People with lupus may not be prepared for these strange symptoms. Sharing experiences is helpful for everyone.
Members of the Lupus.net Facebook community shared their responses to the question:
“What are the strangest symptoms you experience with lupus?”
Sensitivity to odors
Many respondents mentioned a heightened sense of smell. Lupus amplifies odors for some people. Others experience olfactory hallucinations – smelling something that is not there. Both symptoms feel unnerving.
“I smell bad stuff! It drives me crazy!!”
“I smell things that aren’t there. Unfortunately, I don’t smell roses – I smell rotting things.”
“I just find that my sense of smell has become amplified and oversensitive.”
“I sometimes smell something burning. I walk around looking all over the house to make sure it’s not on fire, and it never is, thank goodness.”
Another strange symptom respondents mentioned was various types of mouth sores. In addition to being painful, these symptoms can make eating difficult.
“I have ulcers in my mouth after I take my methotrexate shot.”
“I get whiteheads all over my lips.”
“Thrush in my mouth out of nowhere.”
“Inside of mouth peeling.”
“I get ulcers on my tongue.”
Burning or stinging sensation
Respondents mentioned a burning or stinging feeling in their bodies. People experience the sensation in different places, including feet, fingers, and legs.
“My fingers burn – it hurts to touch things. I have to be careful when picking up things.”
“I feel like someone is sticking pins from my knees down. The bottom of my feet feels like a carpet burn.”
“This constant stinging mostly on my legs. It feels like I am being stung by bees.”
“Sharp pain under the fingernail bed.”
The scalp can become very tender with lupus. Respondents experience pain when touching their heads or brushing their hair. Lying down to sleep feels uncomfortable when the scalp hurts. Any pressure or touch on the head increases the pain.
“It hurts to barely touch my scalp.”
“Burning sensation of my scalp when I lay down at night.”
“My scalp hurts to brush.”
“My head goes through spells of uncontrollable itching and burning. It gets so sore that it hurts even to touch my head.”
One very unsettling symptom is a rapid heartbeat. Many respondents feared they were experiencing a heart attack. The intense and painful pounding in the chest feels scary.
“The whoosh, the electric surge of a rush that spins the room, and my heart beats 196 times a minute, then everything is fine.”
“Chest pains so severe I thought I was having a heart attack.”
“My heartbeat when I go to bed some nights feels like my heart is beating through my ribs.”
Several types of skin rash occur with lupus. Respondents shared about their various rashes. Some get the classic lupus "butterfly" rash. Others break out from sun exposure. Rashes can be widespread or localized to one area.
“Rash on the bottom of my feet.”
“Random butterfly rashes on different parts of my body when warm weather comes.”
“Very large blisters on my face.”
“The rash from the sun is not fun!”
“I had a burning, painful, red rash covering my entire body (also scopes showed rash internally).”
The Lupus.net team appreciates all the responses to this prompt. There are many seemingly unusual lupus symptoms. It is affirming to know others experience the same symptoms.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?