Lupus can come with a wide array of symptoms, including fatigue, insomnia, and skin rashes. In a survey of more than 500 members of MyLupusTeam, respondents identified their top lupus symptoms, and here are the five most common: fatigue, painful swollen joints, sleep problems, pain, and skin rashes. Nearly three-quarters of members also reported depression and anxiety with their lupus.

1. Fatigue or Tiredness

Nearly every survey respondent (97 percent) reported that they experience fatigue or tiredness related to their lupus.

One member commented in the activity feed, “There’s the fatigue where I go ahead and push through and do stuff and then there’s the fatigue where all I can do is lay on the couch.”

Fatigue can take a toll on MyLupusTeam members’ sense of self and mental well-being. “I too have severe fatigue,” a member responded to another. “It makes me very angry, as I used to be very mobile and always on the go. Doing and going everywhere. Now I can barely get through the house.”

2. Painful Swollen Joints

Painful swollen joints was the next most common symptom. A total of 92 percent of survey respondents reported this type of pain.

“I have severe joint pain and I cannot lift my arms over my head,” one MyLupusTeam member shared. Another member commented, “The point of my pain is my thumb joint. It feels like ground glass is inside the joint.”

Swimming is one way members deal with joint pain: “It felt so nice to relax in water with all my joint pain and nerves pinching when I walk!”

3. Problems With Sleep

Insomnia and other sleep problems are a frequent source of frustration for MyLupusTeam members. Among survey repondents, 87 percents reported problems sleeping.

Pain is one culprit for insomnia. “Painsomnia tonight,” a member shared on the activity feed. “I’ve tried everything I have and it’s not helping.”

“Insomnia is rearing its ugly head again and I can’t fall asleep,” a member vented.

4. Pain

General pain affects 79 percent of survey respondents. The pain can be all over the body and varies from person to person. “Having one of the worst days to date. The pain in my legs is so bad I can barely walk. Does anyone else suffer from leg pains during a flare?” one member wrote.

Another member shared, “I’m experiencing horrible right shoulder deep pain, pins and needles in hands, cold hands, legs hurting (can’t kneel down on legs without horrible pressure and pain), and tailbone pain.

5. Rash

Rash was the fifth most commonly reported symptom, with 78 percent of respondents sharing that they have a rash. Members experience rashes across the body. One member wrote, “I am battling a rash on my arms and legs. The itching drives me nuts. I was in the sun and ended up with this.”

Another member shared a sun-related rash experience: “I had a horrible rash that itched like crazy and hurt when touched. I developed the rash after a trip to the Bahamas. It covered 60 percent of my body.”

Managing Symptoms

Living with symptoms like fatigue, pain, or insomnia is never easy. Your doctor can help you determine the best way to manage your symptoms, whether that is modifying your lupus medication, adding a new medication to manage sleep problems, or making lifestyle adjustments like wearing protective clothing in the sun.

Lupus symptoms can also take a toll on your mental well-being. In fact, 73 percent of survey respondents reported depression or anxiety related to their lupus. Talking to a mental health professional and connecting with others with lupus can help when lupus symptoms are affecting your emotional health.

MyLupusTeam members always encourage each other. One shared, “This disease changes your life, but the trick is to not let it take full control. I push through pain every day, all day. I refuse to let this disease stop me from living and enjoying the life that I do have.”

The infographic below represents what members of MyLupusTeam have experienced as their most common lupus symptoms. All quotes have been anonymized.

Find Your Team

On MyLupusTeam, the social network for people with lupus and their loved ones, more than 214,000 members come together to ask questions, give advice, and share their stories with others who can relate to lupus.

Are you living with lupus? Share your experience in the comments below, or start a conversation by posting on your Activities page.