DOCTORS RECOMMEND THESE SELF-CARE PRACTICES FOR PEOPLE LIVING WITH THE AUTOIMMUNE DISEASE
Most lupus patients feel the impacts of the disease in their daily life. In many cases, the autoimmune disorder knows no bounds and symptoms can flare up unexpectedly and severely in any part of the body. This can make it challenging for those living with lupus to feel well and be productive in their everyday routines, and there is unfortunately currently no cure for this long-term illness. Experts suggest lupus patients create a consistent self-care regimen to incorporate in their daily routine to help manage lupus symptoms and optimize physical, emotional and mental wellbeing.
What is lupus?
There are a few variations of lupus. According to the Lupus Research Alliance, the most common is systemic lupus erythematosus (SLE). Lupus is a chronic autoimmune disease that can cause inflammation and pain in any part of the body. It also hinders the body's ability to fight off infection as the immune system instead attacks its own healthy tissues and the body's organs. The disease typically affects the skin, joints, blood vessels and internal organs including the kidneys and heart. It can also impact the digestive and nervous systems, muscles, tendons, lungs, eyes, mouth, liver and the mind.
What are the symptoms of lupus?
Lupus is a complex disorder of which symptoms and their severity vary from one person - and even one day - to the next, according to the National Resource Center on Lupus. Doctors refer to a period where a person is experiencing minimal to no symptoms as remission, and prominent symptoms as a flare. Some people experience lupus symptoms infrequently or exclusively on one part of their body, where others can face serious and widespread side effects almost daily. Symptoms can better or worse and generally change over time.
The most common lupus symptoms tend to be extreme fatigue, pain or swelling in the joints, hands, feet or around the eyes, headaches, mild fevers, sensitivity to light, chest pain with deep breaths, skin rashes, hair loss and sometimes sore in the mouth or nose.
Who can get lupus?
Anyone can get lupus, and while it is not contagious, it can sometimes run in families. Some groups are at higher risk of developing the disease. This includes women ages 15 to 44, people who are African American, Asian American, Hispanic/Latino, Native American, or Pacific Islander and who have a family member with lupus or another autoimmune disease. Nine out of ten people with lupus are women.
What causes lupus, and can you prevent it?
The medical field is still not certain what exactly causes lupus, but studies have suggested that genetics and hormones play a role. Additionally, there are some environmental factors that can increase chances of developing the disorder or worsen symptoms including smoking, ultraviolet rays and certain drugs that might increase sun sensitives, infections, viruses, colds, illness or other bodily trauma like injury or surgery. There is no way to completely prevent to disease, but there are treatments that can help control symptoms.
Related: For Women, Autoimmune Diseases Are on the Rise - Here's What To Look Out For
How is lupus diagnosed?
It can take quite some time for a doctor to diagnose a patient with lupus and various tests will need to be conducted. Many symptoms of the disease are also associated with other health issues like diabetes and arthritis, and experiencing any of the symptoms doesn't necessarily guarantee that a person carries lupus.
Self-care strategies for people living with lupus
Doctors advocate strongly for lupus patients to create a thorough self-care plan that helps enhance mental, emotional and physical quality of life. Active lupus symptoms take a toll on the mind and body, often making it more strenuous to handle common life stressors and maintain productivity. The Lupus Resource Center conducted a survey which said that 65% of people with lupus say chronic pain is the most difficult part of having lupus, 76% of lupus patients say fatigue caused by lupus has forced them to cut back on social activities, and 89% of people with lupus say they can no longer work full-time due to lupus complications.
Experts say the right personalized self-care plan can help ease lupus symptoms and aid those with lupus in cope with those ailments.
"It is very important for a person living with SLE to have an ongoing relationship with his/her physician that is based on trust and shared decision-making," says Maria Dall'Era, MD a Jean S. Engleman Distinguished Professor and Chief of the Division of Rheumatology at the University of California, San Francisco.
Dr. Dall'Era, who is also Director of the UCSF Lupus Clinic and Rheumatology Clinical Research Center, and Lupus Therapeutics Lupus Clinical Investigators Network Chair adds, "Adherence to medications will serve to control SLE disease activity and help ease symptoms. In addition, obtaining recommended vaccinations, regular physical activity, a healthful diet, maintenance of a healthy weight, and stress reduction all play a role in improving the symptoms of SLE."
Protect yourself from light
People with lupus tend to have photosensitivity, placing them at risk when exposed to ultraviolet rays from sunlight and even some types of indoor lighting as the rays can cause inflammation throughout the body. This can cause painful, itchy rashes and other skin irritations, and can even trigger other symptoms including joint pain, fatigue, and flu-like symptoms.
The Resource Center on Lupus advises patients to shield themselves from light whenever possible. When outdoors, lupus patients should liberally and consistently use strong, broad-spectrum sunscreen that blocks both UVA and UVB rays (even during winter months). Additionally, wear as much coverage as possible with clothing and accessories such as hats and sunglasses. Artificial light can also pose a threat to lupus patients, so windows should be covered to prevent sunlight streaming inside and depending on state laws (some require doctor's notes), you might be able to tint your car windows for protection on the road. Try to replace bulbs with LED bulbs which do not emit UV light, and cover halogen and fluorescent light bulbs with light shields or UV filters.
Ensure you're getting adequate Vitamin D
One drawback to avoiding sun exposure is the lack of natural Vitamin D. "Many do not realize that vitamin D is actually a hormone, which has a receptor on every cell in your body," explains Glenicia Nosworthy, MD is an internal medicine physician and the CEO of Nuspecies Integrative Medical Practice. "Not only is vitamin D important in the regulation and balance of hormones, but it is also a vital component for the immune system. I recommend that all of my patients have their vitamin D levels checked and start supplementation if needed."
Drink green juice as part of your lupus self-care routine
"Green juice is an excellent way to get additional vitamins and minerals in your body without having to consume a countertop full of vegetables," Dr. Nosworthy says. "My mother started green juicing decades ago, and our family has never looked back. We purchase organic produce, including broccoli, parsley, kale, cucumber, collard greens, and a whole green apple. Be sure to use a juicer that does not overheat because heat kills nutrients. Most importantly, do not let your green juice sit; drink it freshly made every single time. This is because green juice will oxidize and lose its nutrients, just like an apple turns brown after you cut it."
Treat yourself to healthful foods you love
Nutrition plays a vital role in our health, and this is especially true for lupus patients. Your diet should be balanced and include foods you enjoy, and no food has to be completely cut unless you find that it triggers flares. Lupus research suggests you should incorporate plenty of fruits and vegetables into your meals, opt for whole grains such as whole-wheat bread and pasta or brown rice, and eat lean meats, poultry, seafood, beans, nuts, and eggs.
Since lupus places your heart, kidneys and bones at risk, you'll want to obtain key nutrients for protecting your bones and organs. This means calcium-rich food and drinks such as leafy greens and dairy products. Foods rich in fatty acids such as salmon, mackerel and sardines, nuts and seeds can also fortify heart health.
"Eating a well-balanced diet, reducing processed and inflammatory foods, and reducing sodium intake also help manage lupus symptoms," says Brynna Connor, MD, family medicine physician and Healthcare Ambassador for NorthWestPharmacy.com.
Move your body in ways you enjoy
Regular physical activity is also helpful not only for managing lupus symptoms, but warding off other health issues that lupus is known to accelerate. For example, low impact exercises can help delay or prevent bone issues such as osteoporosis, enhance cardiovascular health, make muscles less stiff and increase range of motion, increase energy levels and help control weight gain caused by use of medications you might be taking to control lupus.
"It's important to move your body in a way that's doable for you and your pain level," says Dr. Connor. "If there are movements that you find difficult or painful, listen to your body, and take up calming exercises to help you continue to move – walk, learn yoga, or even Qi Gong to help with your balance."
Related: Doctor + Physical Therapist: These Are the Best Foods and Exercise To Prevent Osteoporosis
In addition to that fact that dealing with a lupus diagnosis and feeling its physical effects can be extremely stressful, the disease itself and medicines used to treat symptoms can also impact mental state. The Lupus Research Alliance says neuropsychiatric lupus affects 80 to 90% of people with lupus. This disorder can bring about feelings of depression, headaches, brain fog and trouble focusing. The organization also found that 25% of lupus patients experience major depression and 37% have major anxiety.
It's important to tune in to your mental health and your body's reactions to what you're feeling. You can keep a schedule to make sure you're regularly dedicating time to decompress and relieve stress, take part in activities and hobbies that make you feel happy, calm and relaxed.
"Depression, anxiety, and brain fog are extremely common symptoms for individuals with lupus and very debilitating," says Meggan Mackay, MD, MS, Professor, Institute of Molecular Medicine, Feinstein Institutes for Medical Research and investigator with Lupus Therapeutics. "Coping with chronic illness is difficult enough but we also know now that some of the proteins and antibodies that cause inflammation in organs like the kidney can also cause inflammation in the brain, so it is not surprising that mental health is a huge unmet need in lupus. While we do not know yet how to treat lupus in the brain, we do know that physical exercise is one of the best ways to alleviate stress and anxiety and a healthy diet is essential. I frequently advise my patients to take time for activities and people they love, involvement in the community or work helps battle feelings of depression, anxiety, and loneliness. "
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This content is not a substitute for professional medical advice or diagnosis. Always consult your physician before pursuing any treatment plan.
2024-06-08T16:29:07Z dg43tfdfdgfd