When Lauren Marchi entered college as a freshman at American University in Washington, DC, she was a classically trained pianist and ballerina. She had aspirations of pursuing degrees in piano performance and marketing while dancing on the side, but early in her senior year she was forced to question her well-laid plans.
She began having severe, sharp pain in her intestines, accompanied by flulike symptoms such as dizziness and weakness. After more than a dozen tests and procedures, she was diagnosed with extreme food allergies and an infected intestinal tract.
She implemented strict dietary changes, and her health problems seemed to subside for two years, during which time she pursued a master’s degree in advertising in San Francisco. Then, quite unexpectedly, severe pain began coursing through her ankles and wrists.
“I started dropping glasses, and I felt like someone was stabbing my wrist with a knife,” says Lauren, now 30. “One of my feet was also very swollen. I was 24 years old at the time, and I wondered what was going on with my body.”
Her mother recommended that she see a rheumatologist, and a blood test revealed that she had rheumatoid arthritis— an autoimmune disease that affects 1.3 million Americans.1 She was shocked that she had been diagnosed with a disease that she relegated to the elderly.
“One of the most common misconceptions is that arthritis is a disease reserved for the aging population, but it can also affect young adults and even children,” explains Uzma Haque, MD, an assistant professor of medicine in the Division of Rheumatology at Johns Hopkins School of Medicine in Maryland. “There are many different types of arthritis other than the most well-known degenerative joint disease.”
More than 52.5 million Americans 18 and older—or about 22 percent of the population—have been diagnosed with some form of arthritis by a doctor, according to a report published by the US Centers for Disease Control and Prevention (CDC) in 2013.2 Arthritis is a family of musculoskeletal disorders consisting of more than 100 different diseases or conditions that damage joints, bones, and cartilage, which in turn hampers or even halts physical movement. Although people age 65 and older are more likely to be diagnosed with arthritis, more than 30 percent of the population ages 44 to 65 has been diagnosed with the disease, and about 7 percent of people ages 18 to 44, according to the CDC report.
Arthritis is more common in women than men, though researchers have not yet pinpointed why this is so. According to the CDC report, 26 percent of women in the United States have the disease, compared with 19 percent of men. The prevalence among women is particularly high in certain types of the disease, such as rheumatoid arthritis, in which 75 percent of people affected are women, according to the American College of Rheumatology.
Although the high percentages may seem alarming, rheumatologists like Dr. Haque are adamant that patients who seek treatment can significantly improve their odds of staying mobile and even thriving. “People can fear that once they have arthritis, it is a progressive disease that translates to a life of pain,” Dr. Haque says. “If people are appropriately diagnosed and managed, they can take an active part in their care management and have a good quality of life.”
While there have been significant advances in treatment options, physicians also acknowledge that there is no cure for arthritis and that the disease requires lifelong management. In Lauren’s case, perseverance and patience became critical survival skills as she learned to navigate the new normal of living with rheumatoid arthritis.
Identifying the Disease
The most common form of arthritis is called osteoarthritis, which affects approximately 27 million Americans, according to the CDC.
“Our bodies break things down and then repair them, but as we grow older our ability to repair diminishes,” explains David Borenstein, MD, a clinical professor of medicine at George Washington University Medical Center in Washington, DC. “Osteoarthritis occurs when our cartilage thins and loses its ability to cushion the joint.”
Osteoarthritis is most common in the weight-bearing joints such as the knees and hips, but it can also occur in the fingers and toes, Dr. Borenstein says. It is more prevalent among women, and the risk increases with age—but regular exercise can reduce existing pain and even be preventive for those who do not have symptoms.
“It’s important to make muscles as strong as possible,” Dr. Borenstein says. “Cartilage is our main shock absorber, but it is really muscular strength that can help us absorb shock and minimize pressure on the cartilage. Resistance training, exercises in the pool, and walking are all good forms of exercise.”
Another common form of arthritis is rheumatoid arthritis, which is caused by completely different mechanisms than osteoarthritis. Typically, an environmental trigger activates the immune system about three to five years before patients start to experience symptoms, says Kristen Demoruelle, MD, an assistant professor in the Rheumatology Department at the University of Colorado, Denver.
“We are learning that something enters the body through the mouth, lungs, or gastrointestinal tract that triggers an abnormal autoimmune response in which the body starts attacking its own tissues,” Dr. Demoruelle says. “The environmental triggers can be things like cigarette smoke or some type of infection.”
The most common symptoms include pain, stiffness, and swelling in the small joints of the hands and feet. The pain is also typically more severe when waking in the morning and decreases throughout the day. Although it may be tempting to dismiss these symptoms as typical aches and pains, Dr. Demoruelle says it is important to seek treatment as soon as possible if the pain persists.
“We know that the earlier you initiate treatment and get the disease under control, the better people do,” she explains. “The medication for rheumatoid arthritis decreases the risk of incurring joint damage to the bone.”
Within the past decade, treatment options for rheumatoid arthritis have expanded dramatically as drug companies have started producing an increasing number of “biologics,” or medication that targets specific pathways in the immune system. The specific pathway that is malfunctioning can vary from patient to patient, Dr. Demoruelle says, and for this reason rheumatologists may prescribe several different biologics—one at a time—to find which medication is most effective for the patient. The process of finding the right treatment can take months, but advancements in measuring disease activity are helping physicians more readily pinpoint which medications are most effective. Vectra® DA, for example, measures the levels of 12 proteins in the blood that represent multiple biological pathways.
In Lauren’s case, biologics have significantly reduced the swelling and pain in her wrists and ankles, and she now works full-time as an advertising account executive in Denver. Although the medication has dramatically improved her pain, she still navigates the challenges of monthly flares and side effects such as migraines and nausea.
“When I wake up, the first thing I do is check if my face and neck are swollen or if it feels hard to move,” she says. “That will tell me if I am going to have a difficult day. It is easy to want to stay in bed on those days, but luckily I am stubborn and have a high pain tolerance, which keeps me moving. I am still active and enjoy going to the gym, hiking, and swimming, and I still play the piano.”
Arthritis of the Spine
Another category of autoimmune disease in the arthritis family is known as spondyloarthritis, which affects 0.6 to 2.4 million adults in the United States.1 This type affects the area where ligaments and tendons attach to bones and can manifest in two main ways. One form causes inflammation that leads to pain and stiffness in the spine. The second causes bone destruction that creates deformities in the spine and poor function in the shoulders and hips.
Katherine Piscatelli started experiencing the symptoms of spondyloarthritis when she was nine years old, but it was years before doctors accurately diagnosed her condition.
“My hip would lock and spasm to the point that I could not walk,” Katherine says. “I was in so much pain that I couldn’t sleep well and I would be on crutches, but it would come and go. I could go for weeks without symptoms.”
She visited a plethora of doctors in search of an answer and was tested for everything from Lyme disease to bone cancer, yet the symptoms persisted. Her pediatrician finally suggested that she see a rheumatologist, who diagnosed her with spondyloarthritis. During the next several years, Katherine cycled on and off several different oral medications, and methotrexate proved to be the most effective. The drug blocks several enzymes involved in the immune system, and Katherine says she started to enjoy a life free of pain for the first time in years.
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After college, however, the medication stopped working as effectively and the side effects were becoming intolerable. She started feeling chronic back pain as her muscles began tightening. She switched to regular infusions that included biologics, which significantly reduced her pain and gave her the ability to work full-time and stay active.
“It feels like I have tried almost every drug available and have finally found a combination that works for me,” she says. “At the same time, I have been transparent with my work colleagues about my disease, and they are supportive. There are some days when I cannot go in to work because I am in severe pain, and I work from home on those days.”
Other Types of Arthritis
Although many forms of rheumatic disease can be difficult to diagnose in the early stages, one in particular is vague and often misunderstood: fibromyalgia. This condition is characterized by widespread pain and tenderness, sleep disturbances, and fatigue. Although it can mimic the symptoms of arthritis, it is not truly a form of arthritis because it does not damage joints, muscles, or other tissues.
“These patients experience persistent widespread pain without an underlying demonstrative disease,” says Norton Hadler, MD, MACP, MACR, emeritus professor of medicine and of microbiology/immunology at University of North Carolina at Chapel Hill. “They need a port in this storm of illness, a trustworthy primary care resource where they are spared overtreatment. Of the treatments that have been studied, the most efficacious with the fewest side effects is cognitive behavioral therapy—a form of talk therapy—which helps them reconsider the way in which they think about their pain.”
Even though there are more than a hundred forms of rheumatic disease with variations in the symptoms and treatments, there is one thing most have in common: many people managing these chronic conditions look healthy on the outside. The fact that outward appearance can betray the inward pain makes it difficult for coworkers, friends, and even strangers to understand, explains Lauren.
For this reason, Lauren created a blog in 2011 called The Daily Chronic (thedailychronic.wordpress.com) to help her connect with others who have arthritis. Now she communicates regularly with people around the world who share their experiences and wisdom, and those exchanges can make all the difference on the days when it is difficult to tie shoes or chop vegetables for dinner.
“I am living in what feels like an 80-year-old body at times, and this can feel lonely,” Lauren says. “We go through so much with doctors, health insurance, and an entire lifestyle change, and I wanted to be able to educate others that young people can have this disease. Now I hear from people all over the world who respond to my posts, and I hope that by sharing my story I can help someone on their journey.”
Living with Scleroderma
Preschool teacher Natalie Puccio was 24 years old when she noticed something changing in her hands and legs. She could not stand after sitting on the floor with her students or twist caps to open bottles. Soon she was struggling to walk because her hips were tight and her legs were swollen.
Natalie went to a doctor and was diagnosed with an autoimmune rheumatic disease called scleroderma, a chronic hardening and contraction of the skin and connective tissue that affects more than 75,000 people in the United States, mostly women. The less-severe form affects only the skin, but Natalie had systemic scleroderma, a more severe form that can cause damage to internal organs such as the heart, blood vessels, lungs, and kidneys.
Luckily, Natalie’s mobility improved when she started taking medication, but there was no treatment for her fingers—which were fully contracted within a year after diagnosis. Numerous surgeries on her hands coupled with a strong sense of determination have allowed her to work as a nanny and raise her six-year-old daughter as a single mother.
Natalie, now 36, has adapted by using things like automatic jar openers and simple slip-on boots. She also finds support through groups such as Creaky- Joints (creakyjoints.org), an organization focused on helping people and their families who live with arthritis.
“I have found most of my support online, say Natalie. “We may not have the same diagnosis, but we have similar symptoms and help each other find a way to cope.”
Ankylosing Spondylitis An autoimmune disease that primarily affects the spine, sacroiliac joints (where the spine attaches to the pelvis), and hip joints.
Fibromyalgia A condition associated with widespread chronic pain, fatigue, memory problems, and mood changes. It is not life-threatening and does not lead to muscle or joint damage.
Gout A form of arthritis that develops in some people who have high levels of uric acid in the blood. The acid can form needlelike crystals in a joint and cause sudden, severe episodes of pain, tenderness, redness, warmth, and swelling. The first common symptom is excruciating pain and swelling in the big toe.
Osteoarthritis A breakdown in the cartilage covering the ends of bones where they meet to form a joint. Symptoms include stiffness, and pain often occurs in the lower back, hips, knees, and feet.
Psoriatic Arthritis An autoimmune disease that can cause pain, swelling, and sometimes damage to any joint of the body. It often appears in people who have psoriasis, a disease that causes a scaly, reddish skin rash.
Rheumatoid Arthritis An autoimmune disease that most commonly affects the hands, feet, wrists, elbows, knees, and ankles. The joint involvement is usually symmetrical (if one joint is affected, the same one on the opposite side is usually involved as well).
Scleroderma Literally “hard skin,” this chronic systemic autoimmune disease mainly affects the skin, but it can also affect the blood vessels, digestive system, heart, lungs, kidneys, muscles, and joints.
Systemic Lupus Erythematosus An autoimmune disease that affects nearly every organ system in the body, including the skin, joints, kidneys, heart, lungs, and central nervous system. Fatigue is one of the most prominent and life-affecting symptoms. Joint pain is another prominent symptom.
Source: The Arthritis Foundation
1.Helmick CG, Felson DT, Lawrence RC, et al. Estimates of the prevalence of arthritis and other rheumatic conditions in the United States, Part I. Arthritis and Rheumatism. 2008;58(1):15-25. doi: 10.1002/art.23177.
2.Morbidity and Mortality Weekly Report: Prevalence of Doctor-Diagnosed Arthritis and Arthritis-Attributable Activity Limitation—United States, 2010–2012. Centers for Disease Control and Prevention website. November 8, 2013. Available at: