A rheumatoid arthritis (RA) diagnosis can leave you – and loved ones – reeling. How will the disease affect your life? What treatments can lessen the pain? Your best defense against RA is learning how to manage symptoms, medication and bodily changes. Read on for expert advice for sufferers and caregivers. Plus, how much do you know about inflammation? Take our quiz to find out…
You wake up one morning feeling like a truck backed over you. You also detect a slow progression of discomfort that includes stiffness, pain, and joints that are red, tender and swollen.
Initially, the aches, fever and fatigue seem like the flu. But now, you’re noticing less flexibility in wrists and ankles.
Over time, fingers and hands may become misshapen, the result of chronic inflammation that can lead to inflamed tendons, swollen knuckles and joints, torn ligaments and ultimately even bone damage.
If symptoms linger without a diagnosis and information from your doctor, depression can set in.
Finding Answers
Diagnosis for early rheumatoid arthritis (RA) isn’t simple or definitive. But if you suspect RA, see a rheumatologist as soon as possible. The quicker you get the right medication, the better your chances of avoiding debilitating RA problems.
Your doctor may order X-rays and lab work to determine RA. Most important are tests measuring levels of rheumatoid factor (RF) – proteins produced by the body’s immune system that can attack tissues – and anti-citrulline antibodies (CCP), immune system proteins that help with amino acid conversion.
People who test positive for CCP are 90%-95% certain to have RA. The CCP test will detect antibodies earlier than the RF test, expediting diagnosis and treatment. But neither test is entirely conclusive; you can have negative test results, but still have this chronic autoimmune disease.
Once diagnosed, defining RA to loved ones can be challenging. Well-meaning family and friends may not understand all aspects of the condition and could minimize what you’re experiencing.
“I go into reporter mode, just stating the facts,” says Kat Elton, OTR, an occupational therapist at Salt Lake City Veterans Hospital, who has had juvenile RA since she was 2 years old.
“I say, ‘I appreciate that you think you understand, but this is what RA really is – constant pain, even with medication.”
RA Medication Options
Many effective RA drugs are available, but finding the right one can be frustrating. Discovering the most effective medication or combination of drugs is often a matter of trial and error.
Then, it can take several months for the medication to get to work suppressing your immune system’s signals and offering relief.
New disease-modifying anti-rheumatic drugs (DMARDs), such as methotrexate (Rheumatrex), can slow RA’s progression.
If you don’t respond to DMARDs, your doctor may prescribe biological response modifiers, such as etanercept (Enbrel) or infliximab (Remicade). These block immune system substances that decrease the body’s autoimmune response, slowing RA’s progression.
If DMARDs are only somewhat effective, ask your doctor about combining them with biological response modifiers.
Until you find a treatment that works, your doctor may prescribe non-steroidal anti-inflammatory drugs (NSAIDs) and other medicatios to reduce pain and inflammation. These include steroids, such as prednisone (Deltasone, Meticorten), which also stop or slow damage to joints; pain relievers such as acetaminophen (Tylenol); or even opioids that include hydrocodone.
Steps you can take:
Educate yourself. Learn about RA, push for the best and earliest care, and don’t give up, despite painful or discouraging days.
Exercise. Low-impact aerobic exercises – swimming, walking, strength-training and range-of-motion workouts – help keep joints healthier and more flexible, and rev up your energy and spirits.
Don’t push yourself. When you’re tired, take a break. Listening to your body protects you from future pain.
Lose weight. A diet rich in vegetables, fruits, whole grains, lean protein and low-fat dairy can improve overall health and help you lose weight, which reduces stress on joints.
Pamper yourself. When you’re hurting, take a warm Epsom salt bath. Treat yourself to a massage. And get out the ice bag to reduce pain and swelling of snarled joints.
Living with RA
DMARDs may address your symptoms, but they can interfere with the body’s ability to fight infections, such as colds and flu.
Also challenging: learning your body’s new limitations. For example, on days when you feel great, you might push yourself too hard by shopping or spending hours in the garden, which results in spending the next day in bed.
“You feel in control until the hurricane blows the house down,” Elton says.
If you develop joint damage from RA, your doctor may recommend replacement surgery, which can increase mobility and relieve pain. Most replacement surgeries are very effective: Hip replacement surgery, for instance, has a 90% success rate.
Steps you can take:
Monitor your health closely. Keep a journal of how you feel, symptoms you experience, and any changes or patterns you notice. Keep your doctor informed about new symptoms and how well a treatment is working.
Prepare for doctor visits. Keep a running list of questions so you won’t forget to ask your doctor.
Don’t give up. Even if you’ve tried several treatments that don’t help, it’s not hopeless. “There’s a likelihood that a new drug or combination will be effective,” Elton says.
Tips for Caregivers
Caregivers may experience both sorrow for the RA sufferer, as well as worries about their own future and losses.
“Loved ones [with RA] may not feel like doing as much, and the levels of companionship and intimacy have likely changed,” says geriatric psychiatrist William Uffner, M.D., medical director for the Older Adult Program at Friends Hospital in Philadelphia.
This can lead to anger, sadness, fear or resentment that your life is shrinking as you focus on your ill loved one.
If you’re exhausted, depressed, experiencing muscle aches or headaches, your physical health may be suffering from caretaking stress.
Caregivers should take breaks and engage in work, other relationships, or hobbies, Uffner says. “No one can be a full-time caretaker and be psychologically healthy.”
If left untreated, such stress can shorten a caregiver’s life by 10 years, according to a 2004 University of California study.
Steps caregivers can take:
Let the person with RA be in control. Offer support, but also let her tell you what she needs, Elton says. “As counterintuitive as it may seem, avoid saying things like, ‘Let me do that for you.’”
Encourage movement. People with RA need to exercise at least a little every day, Elton says. Indirect encouragement is most helpful, especially to someone in pain. Elton’s caregiver – her mom – invites her to go swimming, then thanks her for coming along.
Educate yourself about RA. One of the best things you can do: Acknowledge the sufferer’s pain. “You don’t have to fix it. Just validate the pain,” Elton says. The worst: Pity. “Never say, ‘You poor thing.’”
Encourage the RA sufferer to help when she can. Let her take care of the bills, fold the laundry, and crack the jokes. “Just because I’m in pain doesn’t mean I can’t give my boyfriend a massage when his neck hurts,” Elton says.
Be a good role model. Get enough sleep, eat right and exercise. “Think of being in an airplane: You have to put your oxygen mask on first before you can provide help,” she says.
Have fun together. Find a hobby or activity unrelated to RA and its symptoms. “Take a drive to the mountains or watch a movie together,” Elton says.
For more expert advice and information, visit our Rheumatoid Arthritis Health Center.
What’s Your Inflammation IQ?
Inflammation has become a hot topic over the last few years. The latest scientific research indicates that inflammation is behind more than 80% of the conditions we suffer from – everything from arthritis to heart disease. Dr. Mark Hyman, author of The UltraSimple Diet, agrees that inflammation leads to a host of health problems. Fighting it can get you on track to a healthier, happier life.
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