‘I’m a Rheumatologist—These Are the Symptoms I Ask About Before Suspecting Autoimmune Disease’ ...Saudi Arabia

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Sometimes, the quest for a diagnosis can be as frustrating as the symptoms themselves. You know something is off, but doctors can’t figure out what it is. This is especially common when it comes to autoimmune diseases.

According to Cleveland Clinic, there are more than 100 different autoimmune diseases recognized by medical organizations. The average time it takes to get a diagnosis is 4.5 years, and in that time, a patient has seen an average of four doctors. 

“Autoimmune diseases occur when the immune system, which is normally designed to protect us from infections and other threats, mistakenly recognizes the body’s own healthy cells or tissues as something harmful and attacks them,” Dr. Saira Z. Sheikh, MD, a Linda Coley Sewell Distinguished Professor of Medicine at the University of North Carolina at Chapel Hill, tells Parade.

Here, Dr. Sheikh shares the first symptom she asks about before suspecting an autoimmune disease and how a diagnosis is reached. Use this information to feel empowered when talking to your own healthcare provider.

Related: 10 Rare Autoimmune Diseases That Don’t Get Enough Attention

What Causes Autoimmune Diseases?

Autoimmune diseases aren’t contagious, like the flu, COVID or common cold. So what causes them? Dr. Sheikh explains that, typically, there isn’t just one cause. “Autoimmune disease is thought to develop from a complex interaction between genetic susceptibility and environmental triggers,” she says.

While genetics can play a role in autoimmune diseases, Dr. Sheikh explains that just because a parent has an autoimmune disease doesn’t mean it will be passed down. “In many cases, there appears to be a ‘second hit,’ perhaps an infection or another trigger that can turn the switch ‘on,’ resulting in activation of an abnormal immune response, in someone susceptible,” she says. 

For example, Dr. Sheikh explains that could include certain viral infections, smoking, ultraviolet light exposure, medications and other environmental exposures, although the specific triggers vary considerably from one autoimmune disease to another.  

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The Symptoms a Rheumatologist Asks About Before an Autoimmune Diagnosis

As previously mentioned, the quest for an autoimmune disease diagnosis can be tedious. Because autoimmune diseases can affect many different organs and their symptoms can overlap with many other conditions, Dr. Sheikh notes that there isn’t one question, examination finding or blood test that leads to an answer. “In fact, there is no single gold-standard diagnostic test for autoimmune disease,” she explains.

However, Dr. Sheikh says she starts by asking what symptoms a patient is having, how they have evolved and what living with those symptoms has been like for them. She asks whether their symptoms are constant or come and go, whether they experience periods of flares and what seems to make things better or worse.

Related: ‘I’m an Immunologist—This Is the First Thing I Ask When Someone Says They’re Always Getting Sick’

Symptoms that cause her to dig deeper include:

Joint pain or swelling Morning stiffness Muscle pain or weakness Unexplained fevers Fatigue Rashes Mouth sores Hair loss Dryness of the eyes or mouth Changes in the urine Chest pain Shortness of breath

“Sometimes what feels to a patient like a collection of unrelated problems, perhaps joint pain, a rash and persistent fatigue, may actually be important pieces of the same puzzle,” Dr. Sheikh explains.

To someone without a medical background, different symptoms may not seem related. But sometimes they are, which is why Dr. Sheikh asks about all of the ones listed above. Besides asking about symptoms, she also inquires about one’s personal and family history, medications and supplements, previous illnesses or infections and other relevant exposures.

Based on the answers to all these questions, she says she may order specific blood or urine tests, a metabolic panel to check kidney and liver function and tests that look for inflammation markers. 

“Diagnosing an autoimmune disease is often like putting together a puzzle. There usually isn’t one test that gives us the answer. I start with the patient’s symptoms, medical and family history and a thorough physical examination. Then I use targeted blood tests, imaging and sometimes a biopsy to look for patterns that point toward a specific disease,” Dr. Sheikh says.

When To See a Doctor

Sometimes, symptoms may sound like they stem from an autoimmune disease, but that isn’t always the case. “Many symptoms associated with autoimmune disease, particularly fatigue, joint or muscle pain, headaches, brain fog and digestive symptoms, are very common and can have many different causes and can overlap with other diseases,” Dr. Sheikh says. For example, fatigue can be related to anemia, thyroid problems, sleep disorders, infections, medications or other medical conditions.

Dr. Sheikh emphasizes that no one knows your body better than you. But while listening to your body is important, Dr. Sheikh warns against assuming any unexplained symptom is due to an autoimmune disease. “These conditions can be complex, and diagnosis sometimes takes time because symptoms may come and go or resemble other illnesses, and often symptoms can also evolve,” she says.

If you have persistent or unexplained symptoms, especially symptoms affecting multiple parts of the body, Dr. Sheikh suggests talking with your healthcare provider. “You don’t need to arrive at the clinic appointment with a diagnosis; you just need to bring your symptoms, your questions and your observations,” she says. What’s most important is seeking answers. Don’t suffer in silence. 

If you do receive a diagnosis for an autoimmune disease, she emphasizes that it’s important to remember that it’s just a starting point. “Once we understand what is actually causing the symptoms, we can focus on the right treatment and help people feel better and live healthier, happier lives,” Dr. Sheikh says. Together, you can work toward a solution that stops symptoms from interfering with your daily life.

Up Next:

Related: Rheumatologists Say This ‘Healthy’ Habit Could Actually Worsen Joint Pain

Sources

Autoimmune Diseases. Cleveland Clinic. Diagnosing Autoimmune Diseases. Benaroya Research Institute. Dr. Saira Z. Sheikh, MD, Linda Coley Sewell Distinguished Professor of Medicine at the University of North Carolina at Chapel Hill. She is trained and triple board-certified in Internal Medicine, Rheumatology and Allergy/Immunology. She is the Director of the Clinical Trials Program at the UNC Thurston Arthritis Research Center, as well as the UNC Rheumatology Lupus Clinic.

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