Lupus is a chronic inflammatory condition where your body’s natural defense system, your immune system, attacks healthy cells by mistake. This process can lead to inflammation, tissue damage, and at its worst death. Though the most commonly discussed areas affected by lupus are often the skin, joints, kidneys, heart, and lungs - lupus can also dramatically affect the brain and nervous system which can impact a persons mental health.
This blog will break down how lupus can affect your mental health, either from the disease itself, its treatments, and/or simply the emotional toll living with the ups and downs of an incurable illness like lupus can cause.
Here are some eye-opening statistics from The Lupus Research Alliance:
- Neuropsychiatric lupus affects 80-90% of people with lupus.
- 25% of lupus patients experience major depression.
- 37% of lupus patients have major anxiety.
Never heard of neuropsychiatric lupus?
You may have never heard of it, but chances are you are living with neuropsychiatric lupus if you have SLE.
Neuropsychiatric systemic lupus erythematosus or NPSLE is when neurological and psychiatric symptoms manifest as a result of having systemic lupus erythematosus.
The symptoms of NPSLE are diverse and can present as a broad spectrum from person to person. Some patients experience more moderate symptoms like headaches and cognitive impairment, while others experience severe symptoms such as extreme memory loss, seizures, and strokes. NPSLE can also cause feelings of depression and anxiety.
How is NPSLE diagnosed?
NPSLE or central nervous system lupus (CNS lupus) as it is sometimes referred to, is usually diagnosed after a medical specialist such as a rheumatologist, neurologist, neuropsychologist, or psychiatrist suspects you have nervous system involvement related to lupus.
They may suggest tests that include:
Blood tests
Electroencephalogram (EEG) to check the electrical activity in your brain
Brain scans, (CT or MRI of your head)
Spinal tap to check the fluid in your spine (source: LFA)
Since the nervous system has three parts (central nervous system — the brain and spinal cord, peripheral nervous system — the nerves that make your muscles move and tell your brain what your body is feeling, and autonomic nervous system — the system that controls internal processes like your heartbeat, breathing, and blood flow), it is important to get to the bottom of where symptoms are originating - so they can be appropriately treated.
How is NPSLE treated?
For many people with lupus, nervous system problems are reversible — and there are many different medicines that can treat them. Your doctor and other health care providers can help you find a treatment plan that works for you. Some of the more common treatments include: corticosteroids/immunosuppressants for inflammatory manifestations or generalized SLE activity, and antiplatelet/anticoagulation medications for manifestations related to antiphospholipid antibodies. Rituximab has been used in certain cases and has been shown to be beneficial in clinical studies to treat NPSLE.
Let’s talk about depression and anxiety:
Clinical depression and anxiety may be a result of the continuous ripple effect of
emotional and psychological stressors associated with living with a chronic illness. It is something rarely talked about with lupus because often there are so many other issues that are prioritized before a patient's mental health. Depression and anxiety can be dismissed (you're lazy), under-emphasized (you're fine), and even over-emphasized (you're crazy). It is imperative to give it the appropriate attention it deserves and destigmatize mental health issues. Moreover, if a doctor is not validating your mental health issues, time to find one who will.
Ever wonder if lupus medications can cause depression and anxiety?
The answer is yes.
Various medications used to treat lupus—especially corticosteroids—may cause clinical depression. Corticosteroids such as prednisone (and at a dose of 20mg or more) can trigger depression and anxiety because it alters hormones in the brain. Some pain medication, medication given to treat nerve pain, and even the biologic Benlysta can cause depression (though it is rare).
Can vitamin deficiencies associated with lupus cause depression and anxiety?
Yes.
Personally speaking, there have been two distinct times in my life where I have had seasons of anxiety, and both were caused by extremely low vitamin D levels. You guys, it is so important to stay on top of taking vitamin D. If your D is low, it can take you down...physically and mentally. Vitamin D is a key player in serotonin activity. Serotonin influences mood and sleep, as well as appetite and digestion. If you are deficient in Vitamin D, you may experience fatigue, depression or increased anxiety levels.
Another deficiency to look out for if you are experiencing anxiety or depression is iron (ferritin). One of iron's main jobs in your body is to help build and maintain serotonin and dopamine. These are mood-regulating chemicals, so if they are unbalanced, you may experience feelings of anxiety or stress.
Next on the list comes magnesium. Magnesium is known for being a mood-stabilizing mineral that can help process stress, and if it’s low, it can cause you to feel stressed, overwhelmed, and cause sudden mood changes. Other vitamins to look out for are vitamin B1, B6, and B12 which manage stress hormones as well.
Can just the social/economic/and overall mental pressure of living with a chronic illness like lupus cause depression and anxiety?
Yes.
Though depression and anxiety can be caused from all the things mentioned above, the most common cause is the emotional drain and stress of coping with lupus itself. The frustration of dealing with a lupus flare also can trigger clinical depression, because the pain, fatigue, and other symptoms of lupus can make it hard to work, socialize or do things you enjoy.
How to cope with depression and anxiety:
Unfortunately, there is not a cookie-cutter answer for this.
If you are living with neuropsychiatric lupus or your feelings are brought on from the stress of the illness or medication side-effects, it is imperative to understand that you are not alone. It is important to reach out to your doctor and be honest with how you are feeling physically and mentally. Feelings of depression, lupus fog, or anxiety are common and treatable. Your doctor can help relieve mental health issues caused by lupus, often by changing medications or adding one for anxiety or depression. There are several types of medications that can help ease the effects of clinical depression. Anti-anxiety medicines are also available to reduce worry and fearful feelings. In some people, improvements can occur in a matter of weeks once medication is started.
Here are some more suggestions with how to cope:
Psychotherapy. Clinical depression generally improves with a combination of psychotherapy and medication. Psychotherapy and cognitive behavioral therapy can be very helpful when you are living with chronic illness. Support groups, community gatherings, and building a support system are helpful as well.
Find ways to reduce pain. Chronic pain can be a factor in the development of clinical depression. Yoga, Pilates, acupuncture, biofeedback, and behavioral changes can help.
Exercise. If you are physically able, take part in some sort of physical activity every day. Exercise is also the only thing that has been clinically proven to help with fatigue.
Improve your sleep habits. Not getting enough restful sleep can cause many health problems, including symptoms of clinical depression.
Cultivate an attitude of gratitude. Replace negative, self-defeating inner language with truthful, productive thoughts, such as: “I feel lousy, but I have many blessings.” Try to write down things you are grateful for every day!
Meditation/Prayer. Being still and grounding your body, mind, and soul can help you cope with anxiety.
Volunteer. Helping others can have a positive impact on your sense of well-being.
Coping with an unpredictable and incurable illness like lupus is stressful. Living with lupus may induce fears about the future, especially when attempting to navigate shifts between flares and remissions and good days and bad. These fluctuations can perpetuate a sense of helplessness, making it feel like your lupus has become the maestro of your life and you are but a mere player being led by its every command.
The stress of those feelings and the “fear of the unknown” may cause intense anxiety, worry, anger, and sadness. All of those emotions are normal. However, if those feelings are not dealt with in a healthy way, they can have unhealthy consequences on your mind, body, and soul.
We hope you found this blog helpful and you feel hopeful that, even though lupus can be very challenging at times - your sense of well-being can improve if you are mindful and attentive to your mental health as much as your physical health.
Written By:
Kelli Roseta
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2021.
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September 2021