Members of MyLupusTeam have asked about a possible connection between lupus and Ehler-Danlos syndrome (EDS). One member asked, “Does anyone else here have Ehler-Danlos or a similar connective tissue disease?” Another wrote, “Hi all, any other lupus/EDS zebras out there?” Like other MyLupusTeam members, you may have wondered: Is lupus related to EDS?

Lupus and EDS are both connective tissue disorders. They can affect the skin, muscles, joints, and organs. Some people have both conditions, and it can be hard to tell which symptoms come from which disorder.

What Is Ehlers-Danlos Syndrome?

EDS is an inherited genetic disorder that disrupts the formation and function of collagen. Collagen makes up 30 percent of the body’s protein. It’s essential for healthy muscles, bones, ligaments, tendons, blood vessels, organs, intestines, and skin to function properly.

There are several types of EDS. The most common type is hypermobile EDS (hEDS), which causes:

• Joint hypermobility (loose joints)
• Stretchy, fragile skin
• A higher risk of joint dislocation

EDS can also lead to ruptures in organs or blood vessels due to abnormalities in connective tissue. Though it’s considered a rare disorder, hEDS affects about 1 in 10,000 to 15,000 people. The exact number is unknown. The second most common type of EDS is classical EDS, while other types are much rarer.

Lupus vs. EDS

Unlike EDS, lupus is an autoimmune disease where the immune system mistakenly attacks healthy tissue. Both EDS and systemic lupus erythematosus (SLE) — the most common type of lupus — can affect many parts of the body and share similar symptoms, making them hard to tell apart. Common symptoms for both conditions include join paint and fatigue, though other symptoms vary from person to person.

One MyLupusTeam member shared, “EDS is genetic. I got it from my mom’s side of the family, and I passed it on to both my kids. What I thought were EDS exacerbations turned out to be lupus.”

Connections Between Lupus and Ehlers-Danlos Syndrome

While lupus and EDS are different, research shows that autoimmune conditions like lupus and rheumatoid arthritis are more common in people with hEDS than in the general population. Both conditions also occur more often in women.

Another MyLupusTeam member shared that they were diagnosed with both EDS and undifferentiated connective tissue disease (UCTD). “I was told connective tissue diseases can overlap, and I think it is much more common than we realize,” they shared

Although people with EDS are more likely to have inflammatory conditions like lupus, the reasons for this are not fully understood. Having both EDS and lupus may increase the risk of complications, such as joint dislocation and bleeding due to weakened skin and, in severe cases, ruptured blood vessels or organs, which can be life-threatening.

The Importance of an Accurate Diagnosis

While EDS and lupus share some symptoms, EDS has distinct features like loose joints, delicate skin, and stretchy skin — especially in hypermobile EDS (hEDS) and classical EDS (cEDS). These features help doctors diagnose the condition. Although EDS is genetic, there is currently no genetic test for hEDS. However, rarer subtypes of EDS can be diagnosed through genetic testing.

One MyLupusTeam member shared, “The good: My rheumatologist doesn’t think I have lupus, but he will be running more lab tests. The bad: He diagnosed me with Ehlers-Danlos syndrome and fibromyalgia.”

An accurate diagnosis of either EDS or lupus is crucial for proper treatment. It helps manage EDS symptoms or slow lupus progression.

EDS is often managed with over-the-counter (OTC) pain relievers, like ibuprofen (Motrin), acetaminophen (Tylenol), or naproxen (Aleve). Blood pressure medication may also be prescribed to reduce stress on blood vessels. Physical therapy is recommended to help prevent dislocations in hypermobile joints.

Treatment Challenges When Both Conditions Are Present

For people with both EDS and lupus, treating symptoms can be tricky because they overlap. Other comorbidities — health conditions that happen simultaneously — with lupus that also cause joint pain, chronic pain, or chronic fatigue can make treatment even more complicated.

One MyLupusTeam member shared, “Having comorbid Ehlers-Danlos syndrome with borderline lupus is hard because I don’t always know which one is causing the issues. My neck pain is constant.”

Another member wrote, “Can anyone tell if their pain is from arthritis, fibromyalgia, Ehlers-Danlos, Sjögren’s, Lyme disease, Baastrup’s disease, lupus, or spinal stenosis? Sometimes, I can’t figure out what’s causing it — or if it’s everything at once.”

Sticking to your treatment plans and communicating openly with your healthcare team are key to managing your care.

When symptoms are confusing, give your doctor a detailed description of what you’re experiencing. Writing down your symptoms can help ensure you provide a full report for evaluation. It may take time and patience to find the right treatment for conditions like lupus and EDS, which share similar symptoms.

Find Your Team

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 289,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you been diagnosed with Ehlers-Danlos syndrome? Share your experience in the comments below, or start a conversation by posting on your Activities page.