Living with Intolerable Ache from Lupus: Strategies for Managing Lupus Discomfort
Lupus is a chronic condition that causes inflammation and pain in various parts of the body. For those living with lupus, managing symptoms, particularly during flare-ups, is crucial.
Lupus pain can be complex and cyclical, often resulting from an overactivation of B cells, leading to chronic, widespread pain. A 2017 study found that 62.9% of people with Systemic Lupus Erythematosus (SLE) experienced poor sleep quality, with pain being a significant contributor.
Before a lupus flare, a person may experience symptoms such as pain, increased tiredness, severe headache, dizziness, and fever. They may also develop a rash, and any existing symptoms may worsen. During an active flare, many people experience joint pain, headaches, chest pain when breathing deeply, ongoing fever, increased fatigue, skin rashes, sores or ulcers in the mouth or nose, swelling in the hands and feet, sensitivity to sunlight, and hair loss.
Common symptoms of a severe lupus flare include intense joint pain and swelling, new or worsening shortness of breath, persistent chest pain, severe headaches with vision changes, dark or foamy urine, swelling in the ankles, sudden drop in blood platelets, and persistent unexplained fever. These symptoms often indicate serious organ involvement and require urgent medical care.
Management strategies for severe lupus flares typically involve the use of glucocorticoids (steroids) such as prednisone to control inflammation and joint pain quickly. Antimalarials like hydroxychloroquine are also administered to help control disease activity. Rest during active flares with gradual resumption of activities, protecting skin from UV light to prevent worsening symptoms, using heat or ice on painful joints to reduce pain and swelling, avoiding infections, and prompt treatment of flare symptoms to prevent serious complications are also crucial.
It's essential for a person with lupus to consult a doctor about any changes in symptoms, as this could indicate a flare, a complication, or a side effect of current medication. Understanding their own warning signs at the onset of a lupus flare can help a person treat symptoms as early as possible and reduce the severity of the flare.
For emotional support and practical tips for living with and managing lupus, the Lupus Foundation of America offers an online platform called LupusConnect. The LFA website also offers a search function where individuals can find out about relevant services, programs, and events in their local area.
The pain and discomfort of flares commonly impair sleep quality, further impacting wellbeing. Lupus flares often negatively affect sleep quality, particularly due to pain such as tailbone (coccydynia) or joint pain that can disrupt comfort at night. Many individuals with lupus report pain interfering with falling or staying asleep, resulting in poorer overall sleep quality during flares.
Despite the challenges, 65% of people with lupus say that chronic pain is the most challenging aspect of living with the condition. However, with proper management strategies, early detection, and support, it's possible to live a fulfilling life with lupus.
- Lupus inflames and causes pain in multiple body parts, particularly during flare-ups, which must be managed carefully.
- A 2017 study revealed that over 62% of people with Systemic Lupus Erythematosus had poor sleep quality, due mainly to pain.
- Before a lupus flare, symptoms like pain, fatigue, headache, dizziness, and fever may manifest.
- A worsening rash, joint pain, chest pain, fever, fatigue, skin rashes, and mouth or nose sores are common during an active lupus flare.
- Intense joint pain, shortness of breath, chest pain, severe headaches with vision changes, dark urine, and ankle swelling can indicate a serious lupus flare and require immediate medical attention.
- Glucocorticoids such as prednisone are often used to control inflammation and pain during a severe lupus flare.
- Antimalarials like hydroxychloroquine are also administered to help manage lupus activity.
- Rest, UV protection, heat or cold treatments, infection prevention, and prompt flare symptom treatment are essential strategies to manage lupus flares.
- Consulting a doctor about any changes in symptoms is crucial to address potential flares, complications, or medication side effects.
- The Lupus Foundation of America's online platform, LupusConnect, provides emotional support and practical tips for living with and managing lupus.
- Lupus flares often lead to sleep disruptions due to pain, further impeding wellbeing.
- One of the most challenging aspects of living with lupus is managing chronic pain, affecting over 65% of individuals with the condition.
- With proper management, early detection, and support, it's possible to lead a fulfilling life despite chronic diseases like lupus and other health-and-wellness conditions such as cancer, respiratory conditions, mental health issues, psoriasis, skin conditions, nutrition concerns, and cardiovascular health issues.
