Mental health problems are very common symptoms of lupus, and can get worse during a flare – but can they also cause flares?
Lupus has a complicated relationship with mental health. Mental health and psychiatric symptoms are some of the least acknowledged symptoms of lupus. However, psychiatric symptoms are also very common. Lupus is a chronic, painful disease that puts a lot of stress on a person’s mind and body. Many people with lupus develop anxiety and depression as a result. Fatigue and a condition called ‘brain fog’ are also very common.
You can read more about these mental symptoms, here.
Mental Health as a Physical and Psychiatric Symptom of Lupus
Mental health problems are often wrongly considered to be ‘less real’ than other symptoms, because they are invisible and often difficult to measure. This leads to people with lupus feeling uncertain about their mental symptoms and ignored by medical professionals. Research shows, however, that these symptoms have very physical, very real, and very measurable factors.
Lupus can directly affect the brain and nervous system, leading to symptoms like fatigue, brain fog, and mood problems. Although inflammation can harm the brain on its own, studies have even found some specific antibodies that show up in people with lupus. For example, anti-NMDA receptor antibodies, that attack a receptor on neuron cells important for learning, memory, and vision. Problems with this receptor have been linked to many mental health conditions. This is not the only antibody that may be involved, or even the only cause of lupus’s effect on the brain: You can read more about messenger molecules and lupus, here.
According to a 2019 article in Frontiers in Psychology, Lupus can also cause seizures, memory loss, nightmares, hallucinations, and even, in some cases, lupus psychosis. Depression and anxiety can be caused by this direct effect on the brain and nervous system in addition to the stress of this often debilitating and frustrating disease. Steroid medications, often taken for lupus, can also cause severe mental health symptoms, and make existing ones worse.
You can read more about lupus and its effects on mental health, here. Other mental health conditions, such as schizophrenia or post-traumatic stress disorder (PTSD) can also occur alongside lupus, adding to the burdens that a person with lupus has to carry through life.
So how does mental health relate to flares in lupus?
Mental Health, Flares, and Lupus
A lupus flare is a sudden increase in the symptoms of lupus and the intensity of those symptoms. Flares can last for a wide range of time, from weeks to years, and are different for each person with lupus. While flares can usually be traced to a trigger, such as certain foods, weather, stressful life events, infections, or even sunlight exposure, sometimes they seem to come from nowhere after periods of lower disease activity.
Of course, mental symptoms of lupus can increase during a flare, like any other symptom of lupus. Flares also are stressful, which lead to anxiety and depression as a very normal response to that experience.
You can watch Progentec’s video on flares, here.
Can Depression and Anxiety Cause Flares?
But can the mental health disorders themselves cause the flares? As in, can a flare-up of anxiety or depression lead to a lupus flare?
The answer is yes. The stress of those conditions, on their own, can cause lupus symptoms to flare. This increases anxiety and depression, which leads to more stress, more inflammation, and worsening symptoms.
Depression and anxiety are also linked to physical symptoms such as increased pain, chronic fatigue, lower libido, poor appetite, and insomnia. These symptoms are measurable, much more accepted by doctors, and affect lupus symptoms in many ways. You can read more about depression and lupus here.
Can You Predict Lupus Flares?
Many people with lupus learn to recognize potential triggers or early warning signs that a flare may be coming. Being able to anticipate a flare can help individuals plan important life events and take extra care to avoid known triggers. But beyond personal observation—are there other ways to predict a flare?
Thanks to new technologies and medical advancements, the answer is yes. Emerging tools may be able to detect lupus flares before symptoms are even felt. Early prediction allows healthcare providers to proactively review treatment plans and ensure that medications, lifestyle strategies, and other interventions are on the right track. In some cases, providers may even be able to treat the flare early, reducing its severity or possibly preventing it altogether.
Progentec Diagnostics, a leader in autoimmune testing, has developed a suite of innovative tools for flare prediction and disease monitoring. Their aiSLE® DX Flare Risk Index and aiSLE® DX Disease Activity Index are now available through your doctor. You can hear more about it in this Mayo Clinic Laboratories podcast, here. The hope is that these tests can be used to improve the treatment and quality of life for people with lupus.
Treating Mental Health Symptoms and Lupus
Preventing mental health from causing flares is obviously going to be tricky for people with lupus. Avoiding stress triggers can, itself, be stressful, and we can’t control our lives or the events that we experience. The very nature of lupus is also stressful, and it can create a loop of stress triggers that is immensely difficult to break out of. These are not things that we can help.
However, there are many options for managing mental health. Many people with lupus find that medication, or even certain supplements, can be useful. Treating the underlying lupus can improve mental health symptoms overall, though changes to lupus medications may be needed to avoid certain side effects.
Dietary changes can have a surprising effect on mood, both due to nutrition and to simply enjoying the food. Staying hydrated and fed can make a huge difference. Regular exercise and proper sleep both have incredible effects on mental and physical health, and there are many strategies that people with lupus have discovered that help them on both fronts.
Managing Flares and Lupus
Managing a flare can be difficult, but there are several techniques that work for people with lupus. First, prioritize your tasks – figure out what’s the most important thing to attempt, and do what you can. Food and water should always be high on that list, as should getting a good amount of sleep. You might not get everything that you need to do finished in one go, and you might not be able to complete the task. If possible, do the task in phases – for many tasks, even a little bit of progress will work. Pushing yourself can make it more difficult to recover and take energy from another task that needs to get done. Second, make sure that you are eating, getting plenty of water, and resting. Your body is trying to recover and needs to have its needs met in order to recover. It doesn’t need to be perfect – but do what you can for yourself.
You can read more about flare management here.
Self-Care and Lupus
We can’t avoid stress, unfortunately. However, we can find ways to reduce the effects of stress on our bodies and mind:
Learning our limits and working within them can reduce the burdens we put on our body and mind, while still allowing us to do what needs to be done. This can involve changes to how we approach problems and tasks, or tools that help make daily life and essential chores and work tasks easier to handle. It can also be finding someone who can take on certain tasks or chores, such as cleaning, leaving you to focus on other things. You can read more about figuring out your “energy limit” here. Services such as meal plans, might be helpful. It can, simply, be having disability payments or social support available, lessening some of the financial stress of lupus.
It can be finding hobbies or creative outlets, or social groups that are accepting of the unpredictable nature of lupus. Online groups can be very useful for socialization for people with lupus.
Taking care of one’s mental health can also be as simple as meditation. Mindfulness is a very well-known form of meditation that can be practiced simply by taking a moment to yourself. It sounds very simple, but research has shown significant improvements, seemingly from doing ‘nothing.’ Other forms of meditation also are effective, giving the mind a break and a rest, including yoga (which also helps with exercise and joint pain.) You can read more about yoga and lupus here.
Therapy can help with processing emotions, finding ways to approach life in ways that are more lupus-friendly, and simply having someone to listen to you. However, therapy is not always easy to access (even with video visits,) and can be prohibitively expensive. There are inexpensive apps out there, however, as well as books. AI chatbots are proving to be a surprisingly effective and highly accessible alternative (or addition to therapy,) but use them with caution.
If you are looking for other resources for mental health help, you can find a list at Lupus.org, linked here. There is an article for sleep tips and lupus here.
Managing mental health with lupus is possible, and finding the strategies that work for your depression, anxiety, and other mental health symptoms can help prevent flares. It may be a long journey to find ways to bring things back to normal, or even remission, but you are not alone.