Community Views: What Lupus Pain Feels Like
Last updated: April 2023
As with any diagnosis, lupus affects people differently. However, most people with lupus experience pain at some point. It may include pain in specific joints for some people, while others experience soreness all over their body. No matter where or how pain affects you, there is no question that it can impact all areas of your life.
To learn more about how community members would describe their pain, we reached out to followers of our Facebook page. We asked you to fill in the blank: “My lupus feels like _____________.”
Nearly 120 of you responded, and here is what you shared.
Lupus pain feels like you have been run over
The overwhelming majority of people described their lupus pain as a sensation that affects their whole body. They feel battered as if every bit of them has been smashed or run over. Several said the pain feels like it knocked them out or knocked them over.
“It feels like you have been trampled by horses or in a car accident every day.”
“I am one big huge bruise that someone has their hand on!”
“Like I was used as a punching bag.”
“A Mack truck hit me at 55 miles per hour with a screaming migraine.
“I got hit with a Mack truck, and I did not get the plate number.”
Lupus pain feels like the flu
Many people described the pain of lupus as similar to having the flu. This means having chills and bone-weary aches throughout your entire body. The pain can be numbing and leave you feeling drained of all energy.
“Getting the flu (all over and when I feel feverish and clammy).”
“The flu, and I cannot get enough sleep.”
Feeling like your body is on fire
For some, the pain is sharp and intense, in a way that can be described as heat. That localized pain can seem more like shocks to the body. Some described it as a searing pain, much like a burning.
“My veins are pumping pain instead of blood. That is the way I describe my flares.”
“It is electric and very painful.”
“Like someone set my insides on fire.”
Lupus pain causes uncertainty
Perhaps the hardest part of dealing with lupus is that the pain changes from day to day. This evolving pain makes it hard to make plans. This guessing game is both physically and emotionally challenging.
“Every day is a roll of the dice. I wonder, ‘What am I going to get hit with today?’
And what I figured out to deal with yesterday might or might not work for today.
Nothing is guaranteed 2 days in a row.”
“A game of Russian roulette. Anywhere from OK to worse.”
Will lupus pain ever end?
Regardless of whether the pain is different every day or whether it shows up as the same pain day in and day out, nearly everyone said that the pain never goes away. The never-ending pain causes many people living with lupus to feel also feel fatigued and mentally drained.
“I do not honestly remember a day or night without pain.”
“A life sentence.”
Thank you to everyone who shared their experiences. We appreciate hearing from so many members of the lupus community and your willingness to be open with each other.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?