Responses from a survey conducted by the Lupus Foundation of America revealed that 63% of Americans had never heard of lupus or knew very little about it.1 This state of limited lupus awareness is alarming because African Americans are more likely to have more serious cases of lupus.1
Early detection and diagnosis are essential. Raising lupus awareness, especially in Black communities, can help increase knowledge, reduce anxiety, and empower others to know and recognize the signs.
There are a variety of symptoms you may experience if you have lupus.2 Symptoms may come and go at different intervals, and the severity of symptoms may vary from person to person.3 Symptoms may also change over time. Common signs and symptoms of lupus include:
- Feeling tired frequently
- Joint pain or swelling
- Light sensitivity
- Skin rashes
- Fevers
- Mouth or nose ulcers
- Hair loss
- Chest pain
Lupus signs and symptoms often overlap with other medical conditions. It can be challenging to recognize whether you have lupus based on symptoms alone.3 Don’t wait. Be proactive and speak with your healthcare provider if you are experiencing symptoms. Additional evaluation and testing may be needed.
Living With Lupus
Living with lupus can be challenging for anyone diagnosed whether it has been a few months or several years. A group of lupus patients surveyed reported that the most difficult parts of coping with their diagnosis were chronic pain, lifestyle changes, and emotional issues.1
Manage Lupus-Related Pain
You can take practical steps to help manage your lupus-related pain. Applying heat to painful areas can be soothing. Take a hot shower or bath, use a heated towel
or warm compress, or apply a heating pad to areas where you are experiencing pain.
You may also find relief in being more physically active. You must listen to
your body and avoid overexerting yourself which can worsen pain. Taking a brisk
walk or swimming in the pool are examples of ways you can get your body moving.
Because several factors can impact your pain, it is also important that you communicate your concerns to your healthcare team and work together to develop a safe and effective plan.4
Adapt Your Lifestyle
Making lifestyle changes can be difficult, but doing so can help you cope with your diagnosis and feel better overall.
If you are living with lupus and hoping to make lifestyle changes that may improve your health and quality of life, you should:
- Eat a healthy diet
- Exercise if approved by your provider
- Stay well-rested
- Avoid overexposure to the sun
- Find a community of others living with lupus
- Keep your family and loved ones informed on how they can support you
- Be positive
Prioritize Self-Care
Your mental health and well-being are important. Try to keep your stress levels low by making time for things you enjoyed doing even before your diagnosis as long as it is safe. Some activities that can help promote relaxation and self-care are practicing meditation, deep breathing exercises, and reading. Consider seeking counseling or joining a support group if you are having trouble coping.
Take Action
You can advocate for yourself and others living with lupus by participating in a clinical trial. If you are living with lupus and taking medication for it, you may be eligible to participate in the TOPAZ Studies. Clinical trials allow participants to receive expert care, regular monitoring, and access to investigational medication at no cost. Click here to learn more and determine if you may be eligible.
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References
- Lupus Foundation of America. Lupus facts and statistics
- CDC. Systemic Lupus Erythematosus
- Lupus Foundation of America. Lupus Symptoms
- Lupus Foundation of America. Strategies for managing pain
- NIH. Lupus Basics: Diagnosis, Treatment, and Steps to Take
- CDC. Lupus Awareness
- Lupus Foundation of America. Quick Guide: African Americans and Lupus
