Lupus and Anxiety: A Difficult Combination

The Connection Between Lupus and Anxiety

Two lupus warriors share their thoughts and experiences with lupus and anxiety.

Brandy's Tips for Coping With Lupus and Anxiety

Anxiety is inevitable. Virtually everyone that exists will experience some kind of anxiety at some point in his or her life. For some, it is the simple worries, whereas for others, it is more severe and can be crippling.

It seems lupus sufferers are prone to experience this unpleasant emotional state – and really it's no wonder those with chronic illness often suffer from generalized anxiety disorder in addition to their respective illness complications. Medical bills, doctor appointments, household tasks, family duties, livelihood, workload, and mortality may be some of the issues that weigh heavy on your mind. At least they do for me.

I have the diagnosed condition of “anxiety disorder” and suffer from the occasional panic attack. The racing heart, shaking hands, chattering teeth, hair pulling, jitteriness, apprehension, and endless worries that plague me are not easy to deal with, and it is no laughing matter. I am often left with feelings of powerlessness, nervousness, weakness, fatigue, and impending doom. There are times that it gets so bad I cannot think straight and suffer from insomnia for days on end — and other times, I feel overwhelmed with anticipation, but I am not certain of the cause.

Stress encourages and feeds lupus flare-ups, so learning how to control those anxious feelings is essential. I have learned through many years of trial and error how to get a handle on my anxiety when it strikes. Granted, I have not been able to alleviate it completely, but I have been successful at taming the beast, so to speak, when I know my health, happiness, and the well-being of my family depends on it.

Prescription Medication

Relying on prescription medications to control anxiety is certainly appropriate, especially if your anxiety is severe. I have been prescribed a number of these medications throughout the years, and they have proven beneficial in my particular case.

However, you should exercise caution, as many of these medications are benzodiazepines, anticonvulsants, sedatives, or hypnotics. They may be effective, but the consequences that ensue may be less than desired, as many are habit forming and have unique consequences in your daily life. Other anti-anxiety medications are also anti-depressants, so if you suffer from both conditions, this could be a viable option.

With the myriad of medications I already take to control lupus and related complications, I tend to reserve the anxiety medication (depending on severity) in times of absolute necessity. But don't fear the medication or feel ashamed if you have to take it!

Another excellent choice when battling anxiety is seeking professional assistance from a therapist. However, if you are inundated with doctor appointments or homebound due to prolonged immunosuppression, this option may be “easier said than done.”

When anxiety is a mere annoyance or medication and/or therapy are not viable options for you, there are natural remedies you can try that might keep it at bay, motivate your productivity, and ease your anguished mind. Furthermore, there are things you can do to cope with your anxiety and help prevent future attacks.

Lifestyle Changes

• Stay active! This is not always an easy task when we consider the aches, pains, symptoms, and complications that come with lupus. However, physical activity reduces stress, improves your mood, and supports your health. Intense activity is not necessary – start slow, keep it simple, and increase gradually when you can. As long as you avoid being sedentary most of the time, activity can help control anxiety.
• Say no to harmful substances. Avoid alcohol, refrain from smoking, and cut back on caffeine as these substances can worsen anxiety. Furthermore, inappropriate drug use can intensify anxiousness.
• Get enough sleep. If you are not sleeping properly, see your doctor. Lack of adequate rest can cause irritability, which promotes anxiety.
• Eat a healthy diet. Some research indicates that eating whole foods such as vegetables, fruits, and whole grains contribute to anxiety reduction.
• Utilize relaxation techniques. Meditation, yoga, and aromatherapy can ease your anxiety. I diffuse essential oils frequently. Lavender, ylang ylang, bergamot, and clary sage are excellent choices to boost your mood and reduce stress and anxiety. Add these oils to a bath to aid in relaxation. Additional “mood-boosting” oils include basil, lime, grapefruit, rose, orange, geranium, and sandalwood.

Supplements

As with any supplement, consult a physician before adding alternatives to your regimen. Some seemingly helpful options can contribute to lupus complications or have adverse interactions with necessary medications.

• Vitamin B. Thiamine (B1) promotes healthy cell growth and protects the immune system. Often referred to as “the anti-stress vitamin,” Thiamine has a major impact on anxiety. Inositol (categorized as B8 in some research) is effective at treating anxiety without the side effects of some anti-anxiety medications. Pantothenic Acid (B5) promotes healthy skin, helps resist infection, and is widely known to help alleviate chronic anxiety. Because of the close link between anxiety and depression, Folic Acid (B9) and Cobalamin (B12) may be beneficial as well.
• Valerian can help with stress and anxiety according to some studies, although there is a need for more research. Often taken to combat insomnia, small doses of this herb appear to be more effective when combined with lemon balm. However, this herb may have withdrawal symptoms, so tapering off is essential.
• Theanine is an amino acid found in green tea. Although there is not sufficient scientific evidence to show it helps treat anxiety, many who have taken it report feeling calmer. It reduces physiological responses to stress and raises levels of GABA, the calming neurotransmitter.
• Magnesium helps prevent anxiety, nervousness, restlessness, and irritability. It is a “calming” mineral and helps to nourish the nervous system and protect the heart and arteries.
• Tryptophan is an amino acid with a natural relaxation component that induces a calming effect when ingested (which is why you probably feel sleepy after eating turkey on Thanksgiving!) It helps control mood and plays an important role in maintaining serotonin levels, which aids in the prevention of anxiety, depression, and insomnia.

Coping and Prevention

• Take action! If you find your anxiety is frequent or severe, talk with your doctor to find out the source and get proper treatment. Certainly having a chronic illness plays into our feelings of anxiousness and therefore this emotional state cannot always be avoided, but allowing it to immobilize you will only add to the problem. If medication becomes necessary, be sure to take it regularly as prescribed!
• Socialize. Whether you spend time with family and friends, join a support group, or involve yourself in social media, the more interactions you have with people the less likely the situation will disable you (unless they are the source of your anxiety, which in that case, be sure to make time for yourself!) Be open and honest with those closest to you and do something you enjoy that incites feelings of calm.
• Break the cycle. Journaling can be excellent therapy! Keep track of your personal thoughts and feelings. This can help you maintain a positive mental state. Taking a brisk walk or indulging in a hobby you enjoy can also be resourceful “cycle breaking” actions. Read self-help books or other genres you enjoy to get your mind on something else. Remember that anticipation is often worse than the real thing, so do not let anxiety keep you from engaging in an activity you are thinking about trying.
• Remember the 90/10 principle! We cannot control 10% of what happens to us – it is simply life and we have no control over it (a crowded waiting room, a traffic jam, etc.) However, the other 90% is completely within our control – it is how we react to the ten percent! When we react poorly, it can throw off our entire day and stimulate unnecessary stress and anxiety. Remain mindful of how you react to the situations in your life.

• Let it go! Easier said than done, I know. However, dwelling on the past or attempting to predict the future can create unnecessary anxiety. We cannot change past events, so the “if-only” conversation has no positive value. If you do find yourself “expecting the worst,” at least “hope for the best!” Live in the moment, day-by-day, and deal with the punches life throws your way as they come with consciousness. Certainly change what you can in life, but allow the rest to take its course and handle it accordingly.

Anxiety may be inevitable, but we can maintain a positive state of mind if we commit to it and realize the value and purpose of the situation at hand. “Don’t sweat the small stuff,” is a wonderful motto to live by. Will problems arise? Of course, they will! However, we already know that — we deal with a chronic illness every single day, which is debilitating enough; couple that with anxiety, and a downward spiral may be hard to avoid.

Smile, breathe, go slowly — and remember — laughter really is the best medicine! I recently read a quote on Pinterest that said, “Do not let the difficulties of life fill you with anxiety; after all it is only in the darkest nights that the stars shine more brightly.” Recognize those bright stars and relish in the beauty of them!

My Everyday Anxiety Triggers

I have always been anxious. As a lupus warrior, I often feel weakened by that anxiety. It gives my disease the upper hand at times, and I hate it.

Today is one of those days when I just want to give up. I’m struggling with the pain, my physical challenges, and trying to remember everything I need to do (and do it well) when I am having a hard time even forming cohesive thoughts. I feel anxiety taking hold of me.

This weekend will be filled with spring activities with my husband’s family members, who don't really understand lupus — most won’t even ask me how I have been feeling.

So, with this family weekend, I must figure out how to navigate the sun exposure on the boat, the heat if the weather turns hot, the cold if it gets chilly, and survive poor sleep and not eating until 9 p.m. To them it’s fun, but to me it’s a lupus attack waiting to happen, and I am always afraid of the next big attack.

Then there is my own general anxiety. The family is huge, loud, and there is never any time to be alone and just breathe. The conversations will all be about them, and of course how awesome everything is for them.

Nobody speaks about challenges or difficulties or sadness — ever. Nobody understands that simply being in this mix, feeling the way lupus makes my body feel, is difficult.

There are many things that can trigger a panic attack when lupus flares. Everyone is different, but these are some common triggers that could spark your anxiety:

Social Gatherings

I had an unusual childhood filled with restrictions that included no after school activities, not being allowed to go on field trips, not being allowed to get my driver’s license, and not being allowed to work.

I feel this helped set the stage for being incredibly uncomfortable with anything in a group setting. Social gatherings mean making small talk, which fills me with a sort of performance anxiety.

Lupus gives me brain fog, so sometimes saying what I’m thinking is difficult, and sometimes thinking clear thoughts is even more difficult. Lupus affects my short-term memory, so I can lose my train of thought mid-sentence or be unable to think of a word — it’s embarrassing and that causes more anxiety.

Tests

Whether it is a performance test with work, or tests at a doctor’s office, I get an anxiety attack thinking about the “what ifs” if I fail the test or it goes poorly.

Doctor’s Appointments

Luckily, I’ve found a great team of doctors, but I feel anxiety before each and every appointment.

What if something else is discovered (I recently was diagnosed with another autoimmune disease, Hashimoto’s), and I have to deal with even more discomfort and medications? What if my doctor does not take what I say seriously, and what if he suggests changing my medications, which can be either helpful or a complete nightmare?

My Weight

I hate the scales. My weight is a yo-yo that is dependent on my lupus and thyroid issues and seems to care little about all the good things I eat and my watchful diet.

It is either dropping for no reason or I have packed on 10 pounds not having done a thing differently. Having no control over anything makes me anxious.

Making New Friends

No. Just no. I don’t have any desire to set myself up to have to explain lupus or my life to anyone new.

It is exhausting and it usually ends with people looking at me like I have two heads. The worst part is they do not usually remember anything I said, and will seem surprised when they learn I have swelling in my heart or lungs or whatever lupus is attacking next.

Then, I must explain lupus all over again. All the effort fills me with anxiety. People looking at me as if I am weird or if they seem to question what I am saying makes me even more anxious.

Staying Somewhere Other Than My Home

With lupus, you never know when things will turn from a small flare into needing a hospital. If I am not sure I will be able to keep to my diet and have access to the types of food I can eat without triggering a flare, get plenty of comfortable sleep, and keep my body a comfortable temperature, I get an anxiety attack.

If it is too hot or I get too much direct sunshine, I get very sick. I can barely walk or talk, and I have partially lost eyesight on a few of those occasions.

It is like I am having a stroke, but it is really the lesions on my brain (discovered by MRIs and caused by lupus) reacting to the temperature and/or the UV rays activating a flare.

If it is chilly or cold, my joints and muscles can soon feel like I have been beaten. All of this leaves me very anxious about what may happen to me next. I already live each day feeling I am at my breaking point, so thinking more is about to strike causes great anxiety and panic.

Surely It's Not Just Me..?

I often wonder if I am the only lupus warrior who feels anxiety to this extreme. Lupus is to blame for most of it, but I had the natural tendency long before this disease took hold of my life.

I try to meditate, pray, and just breathe through my panic and anxiety, but I must admit that avoidance of triggers is still my best line of defense.

What do you do to manage anxiety and lupus?