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Living with Lupus

Mindfulness and Lupus by Dr. Donald Thomas

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The light bulb moment for a rheumatologist.

This is a contributor article by Dr. Donald Thomas, author of The Lupus Encyclopedia. 

I was attending a review course at Johns Hopkins a few years ago. One of the main lectures was about teaching patients with rheumatologic diseases mindfulness. Until then, I thought of “mindfulness” as a new age thing my fantastic next-door neighbors did, or it reminded me of that Saturday Night Live sketch: “Daily Affirmations” by Stuart Smiley.

The expert teaching us was Dr. Neda Gould, Ph.D. She told us that if we taught our patients to incorporate mindfulness into daily practice, even just 5-10 minutes a day, it could help their brain health, immune systems, decrease pain, and improve their quality of life. 

What really grabbed my attention was when she discussed the research. One study that really stuck out was one where they looked at brain MRIs of meditators and compared them to nonmeditators. The meditators had essential areas of the brain that were larger. This included the gray matter in the right orbitofrontal cortex, right thalamus, left inferior temporal gyrus, and right hippocampus. 

This was remarkable. Some of these enlarged anatomical structures are important for emotional reactions; the hippocampus is vital for memory.

Dr. Gould and other mindfulness experts recently wrote an article named “Stress, mindfulness, and systemic lupus erythematosus: An overview and directions for future research.” It summarizes research on how mindfulness impacts the immune system and was published in the journal Lupus. This post summarizes some of their points.

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What does this have to do with lupus?

I will next go into the science, starting with how stress affects lupus and the immune system, how practicing mindfulness can help calm down the negative influences of stress on the immune system, and end up with some research results using mindfulness in lupus patients …. I hope to convince you to practice mindfulness as a vital lifestyle habit (along with diet, sleep, and exercise).

Stress increases the risk of developing lupus and other autoimmune diseases

Studies show that up to 80% of people who develop an autoimmune disease (like lupus) have significantly higher stress levels just before the onset of symptoms or diagnosis.

Stress increases the risk of developing SLE.

Patients with post-traumatic stress disorder are three times more likely to develop SLE than the general population. 

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SLE patients have abnormal biologic responses to stress

We respond to stressful events with a “fight or flight” response. This is important for getting us out of danger and saving our lives. Imagine if you are in the house at night by yourself. You hear a “thump.” Immediately, your heart rate and blood pressure increase, your pupils dilate, your sensitivity to sound and sight increases, your bowels and bladder slow down to conserve valuable energy elsewhere, you breathe faster and deeper, and your muscles tense up, ready to run if needed. All of this occurs due to the “sympathetic nervous system” (SNS) firing up, preparing you to protect yourself (fight or flight response).

 Then you notice that your dog just knocked something over. You are safe, and you quickly put on a smile, pet your dog, and feel “normal” again quickly. 

SLE patients have been shown to have exaggerated SNS responses, which are associated with abnormal immune system activity. Appropriate, brief increases in the SNS are necessary to protect us (as in the above example). However, exaggerated, prolonged responses are unhealthy. 

Normally, our adrenal glands produce more significant amounts of natural steroids (called glucocorticoids) in response to stress. However, SLE patients do not have the necessary higher levels of anti-inflammatory steroids during chronic stress. This suggests they may be more susceptible to inflammation and increased disease activity during stress. 

Stress is associated with SLE flares

Ask anyone with SLE who gets lupus flares if they think stress plays a role. The vast majority will say “yes.” Research bears this out.

One study showed that experiencing daily psychological stress, especially regarding relationships with others and social duties, increases the chances of having SLE flares.

A recent California study showed that SLE patients with periods of increased stress ended up with higher disease activity than those who did not suffer from stress. The authors summarized: teaching lupus patients to respond better to stress is an integral part of treatment

Interestingly, another research study showed that it was not the stressful events themselves that were associated with lupus flares. It was actually how the patients perceived and responded to the stress that was associated with flares. This suggests that how an SLE patient responds to stress may be more critical than the stressful event itself. 

The good news is that anyone can learn to handle and respond to stress in a healthier way (that is where mindfulness comes into play).

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Stress is associated with increased body inflammation

Interleukin-6 (IL-6) is a cytokine that increases inflammation. Cytokines are messages (in the form of molecules) that cells send out to other cells, communicating with them and telling them to act in a particular way. IL-6 tells white blood cells to become more active and causes inflammation. C-reactive protein (CRP) is a protein that the liver produces in response to stress. Your doctor probably measures CRP in your lab work to see if you have active inflammation. 

An Ohio State University study showed that caregivers who had experienced recent stress had higher levels of IL-6 and CRP than those who had not had recent stress. This suggests that stress may increase body inflammation.

This stress-induced inflammation could potentially increase the risk of developing systemic inflammatory diseases like SLE.  

Practicing mindfulness, meditation, and breathing exercises can decrease stress:

Healthy subjects who practice mindfulness end up having less body inflammation.

Mindfulness can reduce stress by causing more rapid clearance of cortisol, which results in less body inflammation. 

A review of 1600 people in 20 well-designed, randomized-controlled trials showed that practicing mindfulness reduced inflammation, modulated cell-mediated immunity, biological aging, antibody production, and how genes were turned off and on

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What happens in SLE patients when they practice mindfulness?

We need a lot more research, but here is what a few studies show:

In a Korean study, 18 SLE patients were taught to practice mindfulness. They improved in anxiety, depression, and stress, but not disease activity. However, they calculated that they needed 45 patients to achieve statistical power. Though they did not have their target number of patients, they still showed positive health benefits from practicing mindfulness.

An Israeli group studied the effects of mindfulness in 26 patients. Fifteen were taught to actively practice mindfulness, and 11 patients received their typical lupus treatments alone. At the end of the study, there were greater improvements in quality of life (QoL) and pain tolerability in the mindfulness group

In Iran, 23 SLE patients completed 8 group sessions on practicing mindfulness. They were compared to 23 patients who received standard lupus treatments without practicing mindfulness. Those who practiced mindfulness ended up with improved QoL and psychological symptoms

The bottom line of what these small, preliminary research studies show is: Practicing mindfulness improved QoL, pain, anxiety, stress

This is good news since QoL and pain are two of the most challenging things to improve with treatment.

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Call to action: What you can do to easily start practicing mindfulness

Keep in mind some simple facts about mindfulness:

Mindfulness is the opposite of “mindlessness.” When you are on autopilot and worry about how you are going to do something tomorrow, or you wish you had reacted a different way than you did to something yesterday, or you get all flustered when stuck in traffic and you say some words you usually would not say, or your mind races and worries about “stuff” and results in trouble sleeping… all of these are examples of “mindlessness” brain activity that ends up causing poor health effects on the body by abnormal activation of the ”fight or flight” response.

Mindfulness is:

  • Purposefully putting aside a few minutes to “be in the moment.” 
  • Be nonjudgmental about yourself and others
  • Identify and name whatever is going on in life but also accept it
  • Realize you have no control over some things. For example, worrying about what will happen tomorrow will not change what will happen.
  • Be grateful for the important things in life

One of the most common and easiest ways to practice mindfulness is to do breathing exercises. Focusing on your breath forces your brain to calmly concentrate on the moment. Feeling the cool air come through your nose and fill up your lungs. Then feel the warmer air leaving the lungs out through the nose and attempting to relax the body while breathing out. You are not thinking about or worrying about anything, taking a few minutes to relax your mind. 

Doing this daily could help you with pain, deal with stress better, have a more positive outlook on life, and who knows… maybe help your lupus. We know that negative responses to stress are associated with lupus flares after the event. So, if you practice mindfulness daily and respond better to stress because of it, maybe this could result in fewer and less severe lupus flares. 

Here are some excellent YouTube videos that I highly recommend you start with:

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How has this knowledge changed the practices of this rheumatologist?

  • I recommend daily mindfulness as an essential health habit to my patients
  • In addition to taking their medications regularly (especially hydroxychloroquine), I tell them that everyday use of mindfulness, exercise, eating an anti-inflammatory diet, and getting at least 7-8 hours of high-quality sleep every night is essential for the fight against lupus. Good thing? … mindfulness, exercise, and sleep are free!
  • I practice mindfulness myself. I go to YouTube and search “5-minute mindfulness breathing” and try to do 5 minutes daily… I practice what I preach.

If you made it this far into the blog post… I wish you all the best in health and life.

 

Donald Thomas, MD

Author of The Lupus Encyclopedia

Comments (4)

4 thoughts on “Mindfulness and Lupus by Dr. Donald Thomas

  1. If I’m understanding the article and research, mindfulness techniques don’t help decrease disease activity. They do help you deal with your reactions to pain and other symptoms. So you feel better about having the disease…which doesn’t help if you’ve already accepted the disease and are functioning reasonably well. It sounds like a bandaid.

    1. GG: Thanks so much for reading and commenting on my article. It isn’t that mindfulness doesn’t reduce lupus disease activity, it is just not proven to do so (a big difference). We must keep in mind that it usually takes much larger studies to prove that interventions work in treating lupus because it is so complicated; every SLE patient is different from the others. For example, the Benlysta clinical trials required over 800 patients in each research study to prove efficacy. It is remarkable that such tiny mindfulness studies showed improvements in pain and quality of life in lupus patients. The science is fascinating; more research is needed (larger studies), but in the meantime, it is such as simple thing to do each day and reap potentially positive benefits (I practice it myself now along with exercise, eating well, sleeping enough, etc). Keep up the search for knowledge as we drive on to try to find better treatments and hopefully, some day, a cure… Donald Thomas, MD

  2. DR. Thomas, Thank you very much for your informative and encouraging article. Lately, while I have practiced deep breathing for years, I have been trying to start begin a more mediative type of mindfulness. Your writing has given me the ‘push’ and the better understanding that I needed. I have awful trouble with sleep (up every 2-3 hours every night) so now I will add it to my breathing routine and hope for the best over time. Thank You! Keep well. Maureen

  3. DR. Thomas, Thank you very much for your informative and encouraging article. Lately, while I have practiced deep breathing for years, I have been trying to start begin a more mediative type of mindfulness. Your writing has given me the ‘push’ and the better understanding that I needed. I have awful trouble with sleep (up every 2-3 hours every night) so now I will add it to my breathing routine and hope for the best over time. Thank You! Keep well. Maureen

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