Living with Lupus
A Debilitating Disease Thousands of Years in the Making
“Let’s just hope it’s not lupus.” Those were the words Sara Gorman, 37, of Alexandria, Virginia, remembers her husband saying over a decade ago when she was faced with the sudden onset of many new and puzzling symptoms. Over the course of a month, Gorman had changed from a vibrant, outgoing young professional and newlywed to a woman crippled by chest pain, fatigue, joint swelling, sore throats, swollen lymph nodes and persistent fevers. Chest, side and back pain that worsened with deep breathing was her first symptom. After initially being told the pain stemmed from a pulled muscle, later X-rays revealed pleural effusion (fluid around the lungs), which led to specialists and ultimately the diagnosis her husband feared most. Gorman, then 26, was diagnosed with systemic lupus erythematosus (SLE), more commonly known as lupus.
WHAT IS LUPUS?
Lupus is a chronic autoimmune disorder that causes painful inflammation throughout the body and, in serious cases, can lead to vital tissue and organ damage, typically affecting joints, skin, kidneys, heart, lungs, blood vessels and brain. In general, autoimmune disorders cause the body’s immune system to mistakenly attack healthy tissue. Several forms of lupus exist, but SLE is the most common.
According to the Lupus Foundation of America, 1.5 million Americans have lupus. Of those diagnosed, 90 percent are women, and they usually develop the disease between the ages of 15 and 44. According to James Gore, MD, of Vanderbilt Rheumatology in Nashville, Tennessee, African American women are the group most prone to develop systemic lupus, although he points out that it can occur in anyone. There also is an increased frequency of lupus in Hispanic and Asian populations.
The exact cause of lupus is not known. However, experts believe it is caused by a combination of genetics, environmental triggers and possibly hormones. Experts believe that people are not born with lupus, but rather have a genetic predisposition to developing the disease, which may be brought on by unidentified triggers.
The symptoms of lupus can mimic other autoimmune conditions and, while no two cases of lupus are identical, patients frequently share some of the same symptoms. “Patients commonly experience fatigue, mouth sores, muscle and joint pain, skin rash, hair loss and occasionally chest pain and shortness of breath,” says Dr. Gore.
Other symptoms can include fever, headaches, anemia, sensitivity to light, weight changes, swollen lymph nodes, skin lesions, dry eyes, memory loss, easy bruising and anxiety or depression.
Gorman remembers when she began to lose fistfuls of hair. Feeling she was losing control, she fiercely protected the remaining long, wavy strands as long as she could. She feared that if she lost it all, she would succumb to the disease. Eventually, Gorman had to accept that lupus wasn’t going away and began to accommodate the illness. She created a “new normal” by making lifestyle changes, and marked her reclaimed independence with a new short haircut.
“I felt like a totally new person,” says Gorman. “When I cut my hair, I cut off my resentment towards lupus and started to believe that [life with lupus] was going to get better.”
MAKING THE DIAGNOSIS
Lupus is evasive; each case is different and there is no test or exam to diagnose it. The American Rheumatism Association has established 11 criteria that are closely related to common symptoms experienced by people with lupus. When a patient meets four or more of these criteria, lupus is a likely diagnosis.
“Patients usually present to a primary care physician with rash and fatigue as well as joint pain, leading to a series of labs that return abnormal,” says Dr. Gore. “The patient is then referred to a rheumatologist, who may perform further testing to confirm the diagnosis.”
COPING WITH PAINFUL FLARES
Pain is an individual experience, and for those with lupus it can be unpredictable. When inflammation and symptoms increase, it is often referred to as a “flare.” These flares can cause random achy, sore, stiff and/or sharp pain throughout the body.
“Sometimes patients will have flares despite being under good control,” says Dr. Gore. “The flare could be a result of surgery, infection or increased stress, or there may be no identifiable cause.”
Flares are most common in joints and muscles. In fact, more than half of people have joint pain at the onset of the disease, and more than 90 percent complain of both joint and muscle pain at some point during the course of the disease.
In addition to flares, lupus pain may include one or more of the following conditions.
Arthritis can cause pain, swelling, tenderness, warmth and fluid buildup in joints of the fingers, wrists, elbows, knees, ankles and toes. Joints are often inflamed on both sides of the body and tend to loosen during the day.
Today, Gorman’s arthritis is well controlled and she is mostly symptom-free, but that wasn’t always true. Before the right combination of medications and lifestyle changes were made, Gorman was unable to buckle her seat belt, hold a steering wheel, button shirts, zip pants, brush her hair or apply make-up. She never expected to have these limitations in her twenties.
“I lost my ability to grasp things,” says Gorman. “I felt like my whole body was throbbing at times. I was in pain from head to toe, and I had to get over the idea that giving in to pain was weak.”
For Gorman, hot showers and baths were the most therapeutic remedies for her aching joints. She also took anti-inflammatory medications and painkillers. Recognizing limitations and implementing lifestyle changes — such as moderate exercise, walking and hand exercises — also helped ease Gorman’s pain.
Lupus arthritis is best treated with non-steroidal anti-inflammatory drugs (NSAIDs). Inmore severe cases, antimalarial agents (such as hydroxychloroquine) and corticosteroids can be used as well. Patients also benefit from physical therapy and occupational therapy, which can be taught in a clinic setting and implemented at home.
Muscular inflammation causes significant muscular damage, pain and weakness, which together are referred to as myositis, and present extreme mobility and comfort challenges. Lupus myositis mainly affects the muscles of the neck, shoulder and pelvis, making it difficult to lift objects, climb stairs or lift one’s head.
Molly Blomeley, 34, of Brookwood, Alabama, has never been officially diagnosed with lupus myositis, but her symptoms are suspicious for the condition. Having lived with lupus for more than ten years, Blomeley, now a fitness coach, mother and wife, has learned to compromise with her disease in order to get through each day.
“My hips are easily bothered,” says Blomeley. “If I work out harder than usual, then I will experience muscle weakness. It feels like you weigh a million pounds and just want to sleep. I’ve even had my hips ‘lock up’ to the point where I can’t walk up stairs.”
To diagnose lupus myositis, blood is drawn to look for increased levels of plasma and liver enzymes. Then, an electromyogram (EMG) is conducted to measure the electrical activity of the muscle fibers. Abnormalities in either of these tests can suggest lupus myositis. Sometimes a muscle biopsy is ordered for further confirmation. Treatment includes a high dose of corticosteroids that is tapered gradually as muscle weakness improves. A supervised exercise program also is helpful in regain-
Up to 30 percent of lupus patients have fibromyalgia, a chronic disorder characterized by fatigue, generalized weakness and diffuse pain in muscles and joints. Sometimes patients are misdiagnosed with lupus when they actually have fibromyalgia, because the conditions share similar symptoms.
According to the National Fibromyalgia Association, the symptoms of fibromyalgia include widespread and chronic pain (especially in the jaw, neck and shoulders), muscle cramps, muscle weakness, sleep disturbances and fatigue.
Diagnosing fibromyalgia is as challenging as diagnosing lupus, making it difficult to distinguish the two. There is no definitive test for fibromyalgia, so doctors rely on a patient’s history, reported symptoms and a physical exam to make a diagnosis. The American College of Rheumatology established a standardized set of criteria to follow; including tenderness in at least 11 body tender points.
OTHER LUPUS PAIN
Dr. Gore indentifies three other pain symptoms associated with lupus: chronic headaches that mimic migraines; chest pains, which occur when the lining around the heart or lungs becomes inflamed; and extensive nerve pain, which causes burning, numbness and tingling sensations.
Dr. Gore explains that gastrointestinal issues can also result from taking anti-inflammatory medications such as prednisone. He says this gnawing pain may require medication that reduces the amount of stomach acid.
TREAT THE INFLAMMATION, CURE THE PAIN
Knowing your limits is probably one of the best ways to live well with lupus. Blomeley knows she has to trade one activity for another, and Gorman knows when to nap instead of running errands. The consequences of not listening to their bodies are too great. Stress, fatigue, even an overexposure to sunlight can trigger lupus pain, so resting, eating well, avoiding stress when possible and following a physician-approved exercise program are important to maintain good health.
While there is no cure for lupus, there are reasons to be hopeful. Ongoing research, online and community support, and awareness campaigns provide resources and guidance.
“People with lupus should know that they are not the only ones living with lupus,” says Sherry Hammond, president and CEO of the Lupus Foundation of America, Mid-South Chapter. “There are support systems within the local Lupus Foundation of America chapters, whether through support groups or just a call to the office.”
PainPathways is the first, only and ultimate pain magazine. First published in spring 2008, PainPathways is the culmination of the vision of Richard L. Rauck, MD, to provide a shared resource for people living with and caring for others in pain. This quarterly resource not only provides in-depth information on current treatments, therapies and research studies but also connects people who live with pain, both personally and professionally.
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