Marlene Thames clearly remembers cleaning her Charlotte, NC, home and heading to the space under the stairs to retrieve her Christmas decorations. The next thing she remembers is waking on the floor beneath the stairs, unsure of how long she had been there or just why she was there in the first place.
“I had lost a good 20 minutes,” the retired middle school assistant principal says. It was one of three fainting spells she has had since 2008. Each time, Thames, 55, wondered if the fainting was connected to aging or to the stroke she had 10 years earlier. She thought it might even be somehow connected to lupus, which she had been diagnosed with in October 2000.
Most people living with lupus are also living with the unanswered question, “Is the symptom I’m experiencing connected somehow to the disease?”
Some people suffer fainting spells; some experience skin issues or shortness of breath, while others have headaches or mouth sores. Each of these could be manifestations of lupus, side effects of medication taken for lupus treatment—or something else entirely. Unfortunately, the answers are never as clear as the question.
For example, consider fainting. “Fainting by itself is not a sign of lupus, but an epileptic seizure may be,” says Peter Schur, MD, of the Department of Rheumatology at Brigham & Women’s Hospital in Boston. “Most people who have epileptic seizures do not have lupus, but someone with lupus could experience a petit mal seizure, which may include fainting or sitting and staring without realizing what is going on around them.”
Schur says anyone who faints should go to the hospital for a full examination to find out exactly what is going on. “[Fainting] could be an indicator of a problem, but the majority of people with lupus do not have seizures,” he says.
The difficult path to diagnosis
The difficulty in knowing if a certain symptom is due to lupus, a side effect of medication, or something else entirely stems from the nature of the disease. “Lupus can affect skin, joints, lungs, the nervous system, kidneys, and other organs of the body,” Schur says. Unfortunately, there is no one way lupus manifests itself in the body, so symptoms and severity may vary from person to person.
“People with lupus are subject to myriad symptoms, complaints, and inflammatory involvement that can affect virtually every organ,” Schur says. One person with lupus may experience malar rashes, kidney involvement, and memory loss, while another can have seizures, pleurisy, or hair loss. Though any of these symptoms could be a manifestation of lupus, they also could signal another, problem.
Because lupus is different in each individual case, people living with lupus must communicate with their doctor regularly to determine exactly what is going on when medical problems occur.
The many faces of lupus
Although lupus appears in different ways, some unlikely symptoms seem to be more commonplace than others. One of the more frequent complaints is cognitive dysfunction, or “lupus fog.”
“I went to a neurologist because my cognitive abilities were diminishing by leaps and bounds,” says Judy Terrean of Newport Beach, CA. Terrean was diagnosed with lupus cerebritis five years ago.
“I used to work in real estate selling new tract homes. But it came to the point where I couldn’t figure out purchase agreement terms or loan amounts. Paperwork would trigger panic attacks. That part of my brain just wasn’t working,” she says.
“Cognitive dysfunction, such as memory loss or forgetting names, occurs in a significant number of people with lupus, even when the lupus isn’t active,” confirms Murray B. Urowitz, MD, director of the Centre for Prognosis Studies in the Rheumatic Diseases in Toronto.
Urowitz points out that the problem can be triggered by several things. “What’s the mechanism? It’s tricky. One possibility is there has been inflammation of the brain during active lupus, which may leave a person a little deficient in this area.”
It might be easy to blame tiredness for difficulties in thinking and mental processing; certainly fatigue is one of the most common issues of those living with lupus. In fact, lack of sleep can cause many health and wellness problems. But often the remedy to cognitive complications will require more than restful sleep. That’s why it is important to have a doctor look for any underlying problems.
Another lupus symptom may be a loss of balance. “Right before I was diagnosed, I started having equilibrium problems,” says Paul Rosenthal, 58, a physical therapist from Ashland, OR.
“I fell crossing the street one day, fell in my garage, and fell at work, putting a big gash in my arm and ending up in the emergency room,” he recalls.
“Loss of equilibrium may be related to lupus, or it may be something else entirely,” Urowitz says. “Again, you need to be examined to determine exactly what is going on.”
Another common issue is shortness of breath. “Sometimes my breathing gets very labored,” Rosenthal says. He recalls his 2008 Christmas vacation, when he was hospitalized for breathing issues. “Our family went to Lake Tahoe, and I spent the entire week in the hotel room. I had no energy and trouble breathing, which was made worse because of the altitude.”
“I’ve lost all tolerance for exercises,” Terrean says. “I used to be very active—tennis, golf, you name it. I lose my breath, though I don’t understand why.”
Shortness of breath usually indicates something is wrong with the lungs. Schur suggests having a doctor listen to the lungs for abnormal sounds. If necessary, an X-ray, CT scan, or pulmonary function study should be performed.
“A doctor will be able to identify what’s going on and treat it properly,” he says. Similar advice is given to those who complain of chest pains, which could be a sign of pleurisy, caused by inflammation of the lining of the lungs.
Inside and out
The malar or “butterfly” rash on the face is one of the most widely recognized symptoms of lupus. However, people living with lupus may deal with other skin issues, sometimes never connecting them with the disease.
“I’m 55, but my aunt who is 92 has better skin than I do,” says Terrean, whose skin is thin and bruises easily. Lupus can attack tissue, which leads to a loss of collagen in the skin. Terrean uses a prescription cream on her arms to build collagen and a prescription vitamin D cream. “It’s expensive, but it has helped,” she says.
A rash on areas of the skin exposed to the sun also may be a sign of lupus or of a disease flare. A dermatologist can diagnose and treat symptoms.
Another manifestation of lupus may occur on the skin inside the mouth. “Within the past six or seven months, I’ve had sores in my mouth under my dentures,” Thames says. “I had my dentist look at them, and he’s whittled down my plate but it doesn’t seem to matter. The sores disappear but are replaced with sores in other parts of my mouth.”
“Mouth ulcers, or oral aphthae, are a classic feature of lupus,” says Urowitz. “If you are having frequent bouts of mouth ulcers, you should be examined. Most of the population gets canker sores due to sensitivity to certain foods. Those with active lupus get them without any other cause.”
Urowitz says treatments such as mouthwashes and steroid preparations that can be applied to sores may help with discomfort. “But if lupus is the cause of the ulcers, the main treatment for them will be the treatment of the lupus itself,” he says.
Head to toe
One controversial lupus symptom is the lupus headache. Thames, Terrean, and Rosenthal experience headaches in varying degrees, but the existence of a headache specific to lupus is still open to debate.
“Headaches are very common in the entire population,” Urowitz points out. “The term ‘lupus headache’ refers to a very specific definition. It’s a headache due to the inflammation of the brain, rated very severe, and doesn’t respond to adequate doses of analgesic narcotics.
“Though these headaches are associated with active lupus and must be treated, they’re the least common of the headaches that occur in people with lupus,” he adds.
If a headache is persistent, it is very important to have your doctor identify the type of headache and treat it accordingly.
Those living with lupus may also experience a variety of circulation problems. “If I have my feet down for a long period of time, my blood pools in my feet,” says Terrean. She says this may be due to the autonomic nervous system disruption she’s experienced.
People with lupus may also have Raynaud’s disease, or phenomenon, in which blood vessels in the fingers and toes contract and the extremities become cold and white or blue; when circulation is restored, extremities may become red and painful.
“Raynaud’s phenomenon is a clue for lupus, but a lot of people without lupus have it as well,” Schur says. He instructs his patients with this complaint to avoid anything that constricts the blood vessels, including cigarettes, caffeine, and decongestants.
Another common blood-related symptom is anemia. Urowitz notes that the most common reasons for anemia are a low amount of iron in the blood or heavy menstrual periods. However, it is another clue a doctor will consider when trying to determine the presence or absence of lupus.
Urowitz adds that some people with lupus complain of being slow to heal, but statistically, these numbers are in line with the general population. “A lot of people have been told they are taking medications to suppress the immune system, so they feel they are healing more slowly,” he says.
However, he says, when individuals with lupus need surgery, they heal as well as anyone else does. “Infections, however, are a real problem for anyone taking immunosuppressive medications, especially young people with lupus who may forget to be careful around friends who are sick,” Urowitz says.
Rx: call your doctor
Because lupus may manifest itself in a variety of ways, it is often hard to tell just what is—or isn’t—a symptom of lupus, its treatment, or something else. However, if symptoms are persistent, don’t ignore them. They signal a problem, whether lupus-related or not.
“Some people may shrug things off [not knowing] the cause is active lupus, or attribute symptoms to their lupus when it’s something else entirely,” Schur says. “When in doubt, call your doctor.”