This SLE guide will cover some basic coping strategies for the more common disease symptoms. It is not intended to replace medical advice. “Lupus Guide” and “SLE guide” will be used interchangeably for the sake of clarity, although they are not quite the same (SLE is not the only form of the disease, but it is the most common.)
Lupus can attack cell tissue anywhere in the body, but the most common symptoms involve the skin, joints, lungs and kidneys. Skin damage can be a rash – particularly a “butterfly” or malar rash across the nose and cheekbones – or something with a more dramatic appearance such as lesions, dark, circular blotches or raised ridges and bumps. Lupus attacks on the lungs often produce inflammation in the outer lining, which rubs painfully against the ribs and causes difficulties with breathing. Kidney trouble could mean an attack on the kidneys themselves, or on the blood or blood vessels surrounding them.
Joint and muscle pain are the most commonly reported lupus systems, affecting some 95 % of patients; fatigue, reported by 80% of people with lupus, is nearly as common and generally chronic. Symptoms like these, experienced long-term, can have detrimental effects on a person’s mental health (as can many of the medications used to treat lupus symptoms.) Because of this, doctors customarily include cognitive (thought) and mood assessments in medical check-ups.
Self & Mood
Stress and anxiety can be caused by difficult situations – pressure at work or at home, changes in financial circumstances or relationships, etc. But poor physical health or chronic pain and fatigue also cause anxious feelings. A mood assessment will ask whether someone has felt deeply sad, guilty and self-critical for at least three weeks. A decreased interest in activities the person used to enjoy is another sign, as is sleeplessness and loss of appetite – or sleeping and eating too much. Doctors take thoughts of self-harm and suicide very seriously, especially in patients with chronic diseases like lupus.
There can also be a physical explanation for mood changes. Problems with the central nervous system, which includes the nerves, brain and spinal cord, can alter mood, thought process, memory and even personality. When lupus patients speak of “lupus fog,” the tendency to forget tasks, lose time or have difficulty remembering words or names, this can be a sign that there are issues with the CNS.
These physical, mental and emotional concerns take a greater toll. Although men and women voice their concerns differently, they worry deeply about impact of lupus on the people around them – co-workers and supervisors, family and friends, romantic relationships. Chronic illness and fatigue make it difficult to complete tasks, do chores, work full-time. People with lupus have less energy for social events; lupus flares and enters periods of remission, and energy levels rise and lower accordingly.
SLE (Lupus) Guide: Get Help, Get Healthy, Get Organized
The most important thing for people with lupus to do is to ask for help when they need it. There will be days where plans must be postponed and chores left for later; this is not laziness, it’s a part of life with a chronic illness. A support system of friends and relatives can assist when fatigue makes certain tasks impossible. A support system is also essential for encouragement and comfort during times of frustration or sadness, to keep these feelings from becoming overwhelming. Many lupus patients also belong to online chat groups or volunteer with organizations that support lupus research; it’s a good way to meet others who have firsthand knowledge of lupus symptoms, hear their encouraging stories and maybe pick up a few helpful tips.
Although it may seem restrictive or complicated at first, it is also important for lupus patients to establish a daily schedule, one that allows plenty of time for resting between tasks. Not only does it help with fatigue and lupus fog – it gives friends, family and co-workers a clear idea of the lupus patient’s abilities and limitations.
Regular exercise is key, even for those experiencing chronic fatigue. Studies show that exercise actually increases energy levels, and it is a natural way to elevate mood. A healthy diet is recommended, as well – lean protein, whole grains, lots of fruits and vegetables. These are simple, common-sense ways to improve overall health and make medical treatment more effective.
Lastly, it is important for lupus patients to regularly and fully communicate with their primary care physicians. Because lupus is a disorder of the immune system, which adapts to conditions within the body, lupus symptoms and secondary conditions can change as well as flare. Regular medical check-ups, including eye exams, are vital for lupus patients. Quality of life, for people with lupus, is a team effort – but more to the point, it is an achievable goal. With planning and help, lupus symptoms can be managed, flares can be minimized and life, though it may go more slowly, can go on.
