I struggle with knowing when to talk about my disease and deciding who needs to know about it. What's more, I struggle to feel as though my friends and family truly understand the nature of this illness. It's unfortunate that the word "arthritis" is attached to a disease that is so insidious and affects its sufferers on so many physical and emotional levels. While "rheumatoid" comes before "arthritis", I sometimes feel like people don't hear what I am saying until they think they can identify a familiar word---oh, arthritis---I get that in my ankle when it rains, my grandmother has that, or I read that you can cure it if you stop eating white flour. And when they think they understand, they stop listening. I wish that we could rename this disease Systemic Autoimmune Syndrome, because for so many of us, RA is a cluster of symptoms that occur to varying degrees with or without actual joint pain. In addition, many different autoimmune illnesses seem to overlap and what I have learned is that having one can open the door for others. Treatments for such diseases can vary greatly according to each individual's tolerance for medication, co-occurring conditions, and pattern of disease activity.
Here are some points I would like to stress to those who know or love someone with Rheumatoid Arthritis. Please keep in mind that I am not a medical professional and this entry should not be misconstrued as medical advice; these are merely things I have learned about my disease over the past eight months through my own doctor and independent research.
1) RA is a serious autoimmune disease that occurs when a person's immune system suddenly attacks itself. In early stages of the disease, there may be few if any symptoms. As the disease progresses and the immune system destroys joint material, pain, swelling, and redness can occur. Small bones of hands, wrists, and feet are often the first attacked, but damage may take place in nearly any joint in the body including knees, shoulders, elbows, ankles, hips, cervical spine, larynx, or jaw. In addition, patients may experience fevers, numbness or tingling in hands and feet, "explosive" episodes of joint pain that comes on and resolves quickly, sore throats, swollen lymph nodes, extreme fatigue, and an overall "malaise" similar to a bad case of the flu.
2) RA is often invisible to the naked eye. Patients in early stages of the disease may show little if any signs of joint destruction or disability, but may still experience a high level of pain.
3) While symptoms of RA can be treated, it is a chronic illness that requires lifelong treatment. Autoimmune arthritis may be caused by a combination of environmental, genetic, or hormonal factors, but research has yet to pinpoint an exact cause. Therefore, it is not preventable.
4) RA can affect the entire body---lungs, heart, eyes, liver, kidneys, digestive, reproductive, and neurological systems may be involved. The disease can also affect the cricoartyrinoid joints in the larynx, causing problems with voice and breathing. Low grade fevers are common during disease flares. Pulmonary nodules are small cell growths that can occur on the heart and lungs as a result of an overactive immune system. Blood vessels throughout the body may be affected, a condition known as vasculitis. Complications of these issues may pose a serious threat to RA patients and if left untreated, may be fatal.
5) There are generally three classes of drugs used to treat the disease: cortosteroids, disease-modifying anti-rheumatic drugs (DMSARDs), and tumor necrosis factor (TNFs). Some of these drugs can trigger a host of problems such as diabetes, stomach ulcers, secondary infections (staph, MERSA), liver disease, eye problems, hair loss, periodontal disease, depression, sleep disturbances, loss of bone density, spinal instability, lymphoma, and heart disease. Many patients are monitored closely by their rheumatologists through frequent blood tests that look for signs of medication toxicity and secondary diseases.
6) Subsequently, the side effects of medication can be devastating. Common side effects such as dizziness, nausea/vomiting, diarrhea, headaches, widespread muscle pain, weakness and fatigue may make it difficult for sufferers to go about their daily lives without some loss of function.
7) While laboratory tests can find markers for RA, the disease may be present without such markers. There is no single, definitive test for RA; diagnosis uses blood tests, radiological evidence, and patient's medical history to determine if she/he may be suffering from autoimmune disease, such as RA. It is not uncommon for it to take several years before a final diagnosis is made.
8) There is no "typical" course of disease. In "classical" RA, joint symptoms occur symmetrically---at the same time on both sides of the body; but this is not always true, and when multiple joints are affected, they may be widespread. There are flares---periods in which levels of inflammation are high and disease is active---and remissions, in which symptoms such as pain and inflammation are reduced, and joint damage is limited. Some patients never experience remission, and live with increasing pain, joint deformity, and disability.
9) Recent studies seem to show that autoimmune diseases such as RA are often a precursor to other such conditions. It is not uncommon for people diagnosed with RA to develop additional autoimmune diseases such as Lupus, Sjogren's Syndrome, Hashimoto's thyroiditis, Vasculitis, Reynaud's syndrome, and Scleroderma. Fibromyalgia and Chronic Fatigue Syndrome seem to occur with greater frequency in people with RA.
10) Chronic illnesses such as RA can have a profound impact on emotional health. The social, economic, and physical stresses that a person with increasing pain and disability experiences are countless. It is estimated that ten years from diagnosis, as many as 50% of RA patients are so disabled, that they are unable to work full-time. In addition, many patients face increasing obstacles in managing family life while suffering from a chronic illness, or have a limited support system of family and friends. Due in part to the unpredictable course of RA, patients struggle to balance their own health needs while remaining socially engaged. It seems logical that a person with chronic illness requires the support of family and friends---and an ability to be flexible within these systems as the disease progresses.
Links for further reading:
Rheumatoid Arthritis Clinical Presentation
Johns Hopkins Rheumatoid Arthritis Treatment
Are individuals with Autoimmune diseases at higher risk for co-occurring diseases?
Multiple Autoimmune Syndrome
Rheumatoid Arthritis and Depression
Psychsomatics article on RA and Depression
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