Living with lupus can be a challenging experience, and one of the most common symptoms that people with lupus report is pain. According to a recent survey conducted by Lupus LA, a nonprofit organization dedicated to finding the causes of and cure for lupus, 94% of lupus patients reported experiencing pain related to their condition. The survey also revealed some interesting insights into the different types of pain experienced by lupus patients and the ways they manage their symptoms.

Joint pain was the most commonly reported type of pain, with 46% of survey respondents reporting experiencing this symptom. Bone pain and muscular/skeletal pain were also commonly reported, at 43% and 46% respectively. Back pain and headache/migraine were also frequently reported, at 37% and 29% respectively. Interestingly, 16% of respondents reported experiencing full body pain.

One of the most significant findings of the survey was that a large percentage of respondents experienced pain on a daily or weekly basis. 22% of respondents reported experiencing pain daily, and 33% reported experiencing pain 3-5 times per week. This highlights the chronic nature of lupus pain and the ongoing challenge it presents for those living with the condition.

To manage their pain symptoms, the majority of lupus patients surveyed reported seeing a pain specialist, with 90.3% reporting doing so. When it comes to the effectiveness of different pain management techniques, the survey revealed some interesting results. 62% of respondents reported that prescribed medications helped to alleviate their pain, while 40% reported that over-the-counter medications were effective. A surprising 26% of respondents reported that CBD or cannabis helped to alleviate their pain, and 38% reported that acupuncture or massage were helpful.

The survey also revealed that pain symptoms can have a significant impact on various aspects of a lupus patient’s life. 45% of respondents reported that their pain symptoms affected their professional/work life, 38% reported that their pain symptoms affected their family events, and 17% reported that their pain symptoms affected their social engagements.

This survey provides valuable insight into the experiences of lupus patients when it comes to pain. It highlights the chronic nature of lupus pain, the different types of pain experienced by patients, and the various techniques used to manage symptoms. It also underscores the significant impact that pain symptoms can have on a patient’s life, emphasizing the importance of finding effective management strategies.

Full Survey Results:

94% of lupus patients reported experiencing pain symptoms related to their lupus. 

• 46% of respondents reported having Joint Pain
• 43% of respondents reported having Bone Pain
• 46% of respondents reported having Muscular/Skeletal Pain
• 37% of respondents reported having Back Pain
• 29% of respondents reported having Headache/Migraine
• 16% of respondents reported having Full Body Pain

How often do you experience pain?

• 22% of respondents reported that they experience pain daily
• 33% of respondents reported that they experience pain 3-5 times per week
• 35% of respondents reported that they experience pain 1-2 times per week
• 10% of respondents reported that they experience pain rarely

90.3% of lupus patients surveyed reported seeing a pain specialist to manage their symptoms 

What helps to alleviate your pain?

• 62% of respondents reported that Prescribed Medications help to alleviate their pain 
• 40% of respondents reported that Over the Counter Medications help to alleviate their pain
• 26% of respondents reported that CBD/Cannabis helps to alleviate their pain
• 38% of respondents reported that Acupuncture/Massage helps to alleviate their pain 

How do your pain symptoms impact your life?

• 45% of respondents reported that their pain symptoms affect their Professional/Work
• 38% of respondents reported that their pain symptoms affect their Family Events
• 17% of respondents reported that their pain symptoms affect their Social Engagements

95% of respondents expressed wanting access to more patient education around pain management from Lupus LA.