A lupus diagnosis can leave you reeling. Initially, it may be a relief to have a name for the fatigue and pain you have, but what now? Chronic diseases need a lifetime of care.
It will impact not only your health but your lifestyle as well. Lupus can create physical changes, mental health challenges, and affect your personal relationships. It may be frustrating to feel limits and setbacks, but know that there is a lot you can do to manage lupus.
Lupus is a disease marked by periods of remission with no symptoms, offset by periods of symptom flare-ups. A flare-up is an unwelcome and often frustrating event. Symptoms will vary from person to person. But for each individual, the flare-ups may be similar each time. They may include:
- Persistent fatigue, weakness
- Loss of appetite, recurring abdominal pain, nausea or vomiting
- Unusual headaches, aching all over
- Painful and swollen joints, increased swelling of the feet and legs, stiff joints in the morning
- Unexplained skin rash, hives , sores on skin, increasing hair loss, sores on roof of the mouth
- Involuntary weight loss
- Recurring nosebleeds , coughing up blood
- Shortness of breath, pain in chest when breathing
- Blood in urine
Neuropsychiatric symptoms may include:
- Cognitive problems
- Personality disorders
- Neuropathies—disorders that affect sensation or movement
You will most likely be able to recognize signs that a flare-up is on the way and even understand the triggers. Triggers can be from regular habits like diet, lack of sleep, too much stress, and exposure to colds , the flu or sunlight. You cannot completely control all flare-ups, but you can better understand them. Keep a journal when flare-ups start. Track the symptoms and triggers. The more you know about the flare-ups the better you can decrease their intensity or frequency.
Most people with lupus will have joint and muscle pain. At times the pain may be disabling. People with lupus are also more prone to osteoporosis and the bone fractures associated with it. Some of the bone damage may be due to medications. Follow your doctor’s instructions for medication and supplements to decrease bone loss as much as possible.
It may seem like rest is best for joints and bone problems, but this can make the situation worse. Keeping physically active can help decrease the strain on joints and muscles and make bones stronger. It is best to take into account your current symptoms when developing an activity program. Fortunately, there are many ways to be active.
- Water activities , such as water aerobics or swimming, low-impact devices, such as cushioned treadmills or elliptical machines, and proper footwear can help take pressure off of joints while giving you a good workout. An exercise specialist can help you find appropriate activities.
- Focus on a progressive routine by beginning at a low intensity. Gradually work your way up. Attacking a program that is too intense can backfire on you.
- You may need to create a program that allows for rest periods.
- Develop a program that includes both cardiovascular and strength activities .
Back off of your routine during flare-ups. Work with physical or occupational therapists to address problems that are interfering with your everyday life.
Skin rashes and lesions are a common symptom of lupus. In most cases, it is due to the disease itself, but medications may also make your skin more vulnerable. Precautions need to be made to protect your skin. For optimal skin health:
- Wear sunscreen with SPF 30 or higher that blocks UVA and UVB rays. Sunlight is a trigger for lupus flares.
- Limit outdoor activity during peak hours between 10am-4pm
- Choose protective clothing: wide-brimmed hats, long sleeves, UV-protective clothing.
- Make-up is fine, but choose hypoallergenic brands. Look for makeup that is also UV-protectant.
Sometimes rashes cannot be prevented. Skin changes can have an emotional impact because of the highly visible nature. If you feel that your rashes or sores are interfering with your life, talk to your doctor.
It is common for anyone managing a chronic illness to have bouts of depression . In addition, some of the necessary lupus medication can cause anxiety , personality and mood changes, forgetfulness, and other psychological problems. Some neuropsychiatric problems, such as those listed in a previous section, are caused by lupus, not with the stress of having it.
- Know what signs to look for and keep open communication with your doctor about them.
- Let your family and friends know about the possible side effects so that they may help as well.
Stress can also make you more prone to fatigue and illness. While it may be in your nature to do it all, you may need to delegate some of your tasks or let them go. A busy schedule can decrease your sleep, cause poor nutrition habits, and leave little time to catch your breath. This is a perfect recipe for a flare-up. Remember, the healthier you are, the better you will be to do the things you want to do.
There is a lot of information to absorb about your disease, steps for management, and medical care. Become a partner with your doctor. Keep an open dialogue about your lupus management. Open and honest communication can help you both create the best treatment plan for you.
- Take the time to understand why certain medications, treatments, or procedures are being recommended.
- Talk to your doctor about the course of the disease and what signs or symptoms you should be aware of.
- Keep your doctor apprised of information you learn from tracking your behaviors and symptoms.
- Ask about treatments, studies, or problems you have come across. Information flowing both ways will help create a complete picture of your health and care options.
Regular visits to your doctor when you are healthy may help find problems before they start. If you only see your doctor for emergency situations, you will always be playing catch-up. Preventative care, such as immunizations, will help ward off infections like the flu which can trigger flare-ups. Maintenance of your overall health will help you feel well and may prevent more serious complications from developing.
Managing a chronic disease can be difficult for you, your friends, and family. Common lupus symptoms like fatigue and joint pain are not visible to others. Some may have a hard time understanding how lupus is affecting you. Help your friends and family understand the disease process so that they may be able to participate in your healthy lifestyle. Use brochures, lupus websites, or other written material to explain the disease process to them.
Your lifestyle may change now and during future periods. Keep communication open with family and friends as changing responsibilities and roles may affect them as well. Honest communication will help dispel fears, confusion, and frustration for you and your family.
Find support groups that fit your needs. The people that most understand what you are going through are going through the same thing. A lupus support group can provide emotional support and coping success stories.
The good news is that most people with lupus can maintain a high quality of life. Work to make changes in line with your goals. The exact path of the disease is not always predictable despite best efforts. Know that future plans may need to be adjusted. Make the choices that are right for you, leave flexibility in your plans, and communicate openly.
- Reviewer: Michael Woods, MD
- Review Date: 01/2014 -
- Update Date: 01/08/2014 -