Misdiagnosis and Other Conditions Alongside Lupus

As the saying goes, lupus invites all its friends to the party – or in this case, the body. Our 2nd Lupus In America survey gave us a more detailed look at the other conditions you have been diagnosed with or misdiagnosed with before a lupus diagnosis.

The survey included responses from 836 people living with lupus. Of those, 99 percent cite having other health conditions, with arthritis being the most common. Plus,63 percent are also diagnosed with another autoimmune condition. Here is a breakdown of other conditions people are living with in addition to lupus:

• Arthritis (osteoarthritis) – 57 percent
• Chronic pain – 54 percent
• Allergies – 53 percent
• Anxiety – 50 percent
• Depression – 48 percent
• Overweight/obesity – 48 percent
• GERD (Gastroesophageal reflux disease) – 46 percent
• Hypertension (high blood pressure) – 45 percent
• Fibromyalgia – 44 percent
• Insomnia – 44 percent

Other conditions included neuropathy, migraine, dental issues, high cholesterol, IBS, Sjogren's syndrome, thyroid/gland disease, asthma, chronic fatigue syndrome, and rheumatoid arthritis, and more.

Diagnosis before lupus

Nearly half of those who took the survey also said they were initially misdiagnosed with 1 or more other conditions, including fibromyalgia (41 percent), rash or other skin condition (37 percent), chronic fatigue syndrome (33 percent), and rheumatoid arthritis (30 percent), to name a few.

We asked the Facebook community, "Did anyone here receive a diagnosis (like fibromyalgia or RA) prior to lupus? If so, what was it?"

Rheumatoid arthritis

"Yes. RA came first, and lupus 21 years later."

"Mine was done 25 years ago. Doctor said RA by the tests but will see what develops. I ask what, she said lupus. Within 6 months it did develop; also the numbness in the bottoms of my feet many other autoimmune diseases over the years. Doctors do try and are trying and have kept me alive functioning to the best of my ability."

"Started off telling me I had RA, but when doing further testing really, it was lupus."

Fibromyalgia

"Fibro and Sjogrens Syndrome, took me several years to get my lupus."

"Fibromyalgia, then RA, and then lupus. It’s been a 'fun' ride. Mainly just so tired of being tired."

"Yes, I was first diagnosed with fibromyalgia about 35 years ago. I had several doctors tell me I had more than fibromyalgia going on. I was later diagnosed with lupus."

Connective tissue disease

"Connective tissue disorder for years, then RA. Finally had the right diagnostic blood work done, and it was determined to be lupus. It was a tough 15 years."

"Yes, First it was MCTD and was told to go home and wait. The doctor said it would eventually change to one specific illness. That was from Mayo Clinic in Minnesota. Then had fibromyalgia and then SLE. It was a long time being diagnosed with lupus."

"I was diagnosed with connective tissue disease/psoriatic arthritis first. My rheumatologist has now told me I’m in pre-lupus stage. Not exactly sure what that means."

The long path to a lupus diagnosis

For many people, getting a definitive lupus diagnosis has been a struggle, to say the least. It can often take years and several doctors to receive the right diagnosis and subsequent treatment plan. Eleven percent of our survey participants reported seeing 10 or more doctors before being correctly diagnosed with lupus.

We hope that learning about others within the community validates your frustrations throughout your journey with lupus. We are so grateful for your insight and advocacy in this space. It creates awareness for others who are new to lupus or supporting a loved one with the condition.

The Lupus In America 2021 Survey was conducted online from February through March of 2021. Of the 836 people who completed the survey, 592 were 50 years or older, 95 percent were women, and 5 percent were men.