The need for new research

Two factors are increasing the study of non-medication-based treatments for pain:

1. Increased understanding of the prevalence, imposed physical limitations, and economic impact of chronic pain
   • 65% of people with lupus list chronic pain as the most difficult aspect of lupus
   • ⅔ people with chronic pain reported decreased ability to exercise, sleep, perform household chores, or drive a car
   • “The financial cost of chronic pain is roughly the same as cancer or cardiovascular disease.”
2. Overdose and death from opioids has become a major health crisis
   • “Every day, more than 130 people in the United States die after overdosing on opioids.”

New prescribing guidelines aiming to reduce opioid use disorder can also make it challenging for people with chronic pain to get treatments

Mindfulness-based stress reduction research

A January 2019 published meta-analysis in Evidence-Based Mental Health explored the effectiveness of alternative chronic pain treatments. The researchers analyzed 21 randomized controlled trials (12 of which met subsequent quality standards) on mindfulness-based stress reduction, cognitive behavioral therapy (CBT), and chronic pain.

Chronic pain as a result of lupus was not specifically studied. Chronic pain sources included musculoskeletal pain, fibromyalgia, chronic lower back pain, rheumatoid arthritis, and others. 

Mindfulness-based stress reduction and CBT showed “clinically important advantages relative to control” for physical functioning, pain intensity, depression. This is particularly fascinating as control participants in some study arms received standard-of-care pain management, including medications.

 

What is mindfulness-based stress reduction?

As the name suggests, mindfulness-based stress reductions are interventions that help reduce stress by cultivating an awareness of the current moment (mindfulness). Meditation, breathing exercises, and yoga are 3 examples of mindful exercises.

The goal of these exercises is to encourage a body awareness and bring the focus to the present. These strategies make it easier to recognize body sensations, emotions, and thoughts and then to let them go.

In the research paper discussed above, the mindfulness exercises were administered by certified MBSR teachers or other trained professionals.

4-7-8 Breathing

You can try these strategies out for yourself! A good one to start with is mindful breathing — also known as diaphragmatic breathing or abdominal breathing. The goal of this exercise is to pace your breaths and generate a calm feeling. 

 

Quick tips:

• Sit with your back straight
• Try to keep your tongue touching your gums just above your front teeth during the cycle. When you exhale with your mouth open, you will breathe around your tongue

 

Steps:

1. Exhale completely through your mouth — make a whoosh sound
2. Close your mouth and inhale through your nose. Count to 4 in your head
3. Hold your breath and count to 7
4. Exhale completely through your mouth, making a whoosh sound, and count to 8
5. Repeat until you complete the cycle 4 times

 

To start, try to complete the exercise twice per day. As you continue, you can add daily repetitions or increase the number of breaths that you take. 

Looking for other mindfulness exercises? Check out these 22 individual and group strategies

Chronic pain and medications

Medications will still continue to be an important part of the toolkit in the battle against chronic pain. It is not always possible to cure chronic pain. Work with your lupus treatment team to establish a safe and effective regimen. Even over-the-counter pain medications can be dangerous when taken at high doses or when taken in conjunction with other medications. Before starting any new medication, talk to your rheumatologist.

 

Prescription-strength medications, including opioids, are used in cases of severe pain. While opioids are strong pain relievers, they also come with a high risk of dependence and addiction. 

 

Opioid overdose risks are increased for people with reduced kidney or liver function. Be sure to check out these resources if you or a loved one is using an opioid for pain management:

• Safe Use, Storage, and Disposal of Opioid Drugs — by the American Academy of Family Physicians
• Opioid Overdose — by the U.S. National Library of Medicine

Over-the-counter (OTC) medications

OTC medications are available without a prescription, though they may still come in a variety of dosages. Be sure to read the labels to ensure you are taking a safe dose for your body weight. Always bring up new medications with your treatment team.

There are 2 main types of OTC pain relievers:

1. Acetaminophen
   1. Tylenol
2. Nonsteroidal anti-inflammatory drugs (NSAIDs)
   1. Aspirin
   2. Ibuprofen (Advil; Motrin)
   3. Naproxen (Aleve)

Virtual Reality and Mindfulness

Normal mindfulness practices have been well-documented and are beneficial to mental health. However, mindfulness practices can often be difficult to adopt. This can be due to environmental factors, personal distractors, or simply the inability to find the right avenue. Virtual reality may be the answer, by providing an immersive environment for practicing mindfulness techniques. It can also aid in orienting users to the present moment, without distractions, within a tailored virtual setting.

Research and understanding has been limited, making it difficult to draw assertive conclusions. A study in Australia studied a sample of 37 participants from the general population. They trialed a VR mindfulness app in a controlled laboratory setting. The VR app presented users with an omnidirectional video of a peaceful forest environment with a guided mindfulness voiceover that was delivered by a male narrator. Results showed that overall state of mindfulness significantly increased, and there were no notable changes in negative emotion.

Virtual reality may be a new way to achieve mindfulness, by providing guided meditation and an immersive environment. Stay updated for new research and studies into the VR and mindfulness field.

 

Updated on November 3, 2020.

What are positive affirmations?

Positive affirmations are a verbal exercise where you repeat positive phrases to yourself, out loud, at least once a day. By doing this, you encourage positive thoughts to grow and take charge. Positive affirmation encourages a positive and resilient mindset — perfect for taking on the rest of the day.

The affirmations you use are up to you. When selecting your personal positive affirmations, you can choose ones that:

• Highlight your best traits
• Encourage you to approach new experiences with an open mind
• Psyche you up for the day
• Control negative feelings, including anger and frustration (by rewriting negative self-talk in a positive light)

Looking for positive affirmations to try out? Louise Hay, a founder of the self-help movement and an author of books on positivity shares a new positive affirmation every day.

And, check out this list of positive affirmations provided by Arizona State University.

Positive Affirmations and You

When deciding on your affirmations, think about what you want to do and who you want to be. Are you worried about something in particular? Do you have specific goals? Think about the positive side, and say it out loud to yourself.

Wording does matter here: when making your own affirmations, try to use words with good associations wherever possible. You should also use words like “I choose,” “I allow,” or “I am willing” because this lets you “choose” that outcome, giving you agency.  

These kinds of phrases help to prime your brain to thinking the way you want to think, and doing what you need to do. And, science says, it does much more than that.

The science of positive affirmations

This all may seem a little too good to be true or seem a bit implausible. But, research has shown that these positivity strategies offer benefit.

A 2013 study in undergraduate college students showed that positive self-affirmation helped stressed students. Affirmations improve problem solving performance, helping them test well even when stressed.

Also, a 2001 follow up study on college-aged women found that a 6-week cognitive-behavioral intervention led to fewer traits of depression. The strategies used in the intervention were thought-stopping and positive affirmations. The goal of using these was to reduce negative identification and negative thinking. The women who underwent the intervention had greater self-esteem than the group who did not, and the differences between the groups remained in place 18 months later.

The benefits have even been measured using brain scans. In a 2015 study, fMRI scans revealed that people who used positive affirmation techniques experienced “increased activity in key regions of the brain’s self-processing and valuation systems.” This increased activity encourages more mental and physical activity.

Some Affirmations to Try This Holiday Season

During the holiday season, positivity can be extremely important. Whether you are spending time with your family, or if the current times don’t allow for that, take some time for yourself. Try and incorporate positive affirmations into your daily and weekly schedule, it only takes a moment! Here are a three positive affirmations that may be helpful for Lupus Warriors:

• I am making progress in my health, and I will keep making progress.
• Yes, I am strong, and I will do great things today.
• I am a master at managing my energy, and I will pace myself well today.

If you’re looking to learn more about the power of positivity, there are plenty of books on positive psychology.

Today and everyday, you got this!

Stress is hard to define, but we all know it when we are feeling it. A “stressor” can be any physical, chemical, or emotional factor that our mind and body respond to, costing energy and emotional  resources. And, the physical process of overcoming stressors can impact us physically.

Stressors can manifest in so many different forms, as almost anything can cause stress, including:

• Tobacco use or secondhand smoke inhalation
• Pollutants in the air
• Heavy vibrations (such as from machinery or construction)
• Too much Heat
• Too much Cold
• Difficult tasks or chores at work, home, or school
• Rocky patches in relationships
• Financial troubles
• Ultraviolet light
• Injury or illness
• Traumatic events
• PTSD (Which has been linked to a three times higher chance of developing an autoimmune disease)
• Surgery and other medical procedures
• Medications, especially new ones

Even positive events can be stressors such as a marriage, the birth of a child, a big promotion, a birthday party, a big accomplishment.

Stress can also seem to be invisible. It’s possible to be difficult to identify stressors that you are feeling, or to become accustomed to feeling certain stress.  But it can still require a response from the body.

Understanding stress

Stress is connected to an exacerbation of symptoms for all forms of lupus, from systemic lupus erythematosus to cutaneous lupus (skin lupus). It has even been linked to symptom flares.

Acute (a single major event) and chronic (long term) stress are linked in research to many of the symptoms of lupus, including back pain, foot pain, joint pain, general pain throughout the body, insomnia, hives, migraines, and hair loss. It can also increase a person’s risk of infection, which is a huge danger for people with lupus who are already immunocompromised. Infection is also another stressor and may make symptoms flare up in addition to the symptoms of the disease.

Stress causes the immune system to behave abnormally. This can add challenges for people with autoimmune diseases who already have immune systems that misclassify and attack cells within their own bodies. When exposed to stress, their immune system misbehaves further out of control, leading to a sudden increase in symptoms.  

Stress also causes the body to release hormones, including cortisol and adrenaline, which regulate many body systems. This hormone secretion happens even if a person has good coping mechanisms, and doesn’t “feel stressed.” For this reason, cortisol levels in the bloodstream are used as a reliable measure of stress in scientific studies.

Stress has been studied extensively, but aside from cortisol levels, it is still difficult to define. However, some distinctions in the impact of stress have been made. Small, daily stressors (such as a challenging work environment, poor diet, humidity, and insomnia) that build up over time, known as chronic stress, are more damaging than a single major stressful event (such as a major accident or a death in the family). The elevated hormone levels and immune system changes work on the body and mind over time and cause more, longer-lasting damage.

One type of damage that may be caused by chronic stress is called oxidative stress.

Oxidative stress and lupus

Oxidative stress is a process that naturally occurs in our bodies. It starts with mitochondria, little cells within our cells that turn the raw materials that we eat and oxygen into energy for the cell. As a by-product, they produce oxygen molecules that are highly volatile, known as “reactive oxygen species” or “free radicals.” These free radicals have too many electrons, which they give to other molecules in the cell, including enzymes and DNA. This is called a reaction, and it causes chaos as molecules break apart, change shape, and become useless to the cell.

The body has ways to stop oxidative stress, using substances called antioxidants, which either take away the extra electron or bind up the free radical, where it can cause no more harm. You might be familiar with some antioxidants, including Omega-3 fatty acids, vitamin C, vitamin A, and vitamin E. This is one of the reasons it’s important to eat fresh fish, fruits and vegetables.

However, when stressed, the body seems to produce more free radicals than usual. While this may help prevent infection (free radicals hurt bacteria and viruses, too), it also leads to more cell damage. This damage may then lead to symptom flares, or make a symptom flare worse.

What you can do about stress

While there is still plenty that we don’t know about the impact of stress on Lupus Warriors, there are plenty of strategies for minimizing it. Some common strategies include:

Green tea

Green tea or lightly-cooked Camellia sinensis, has many beneficial compounds, including epigallocatechin-3-gallate and polyphenols, that help regulate the immune response. The benefits of green tea have helped people around the world for centuries.

 

Art Therapy

Art therapy uses art – such as drawing, painting, or sculpting — to help people with lupus express themselves creatively. In our article on art therapy, we discuss how the science supports using this kind of creative outlet to reduce stress and ease lupus symptoms.

 

Writing Therapy

Writing therapy is similar to art therapy in that it is a way for people with lupus to express themselves. In this case, however, the subject is oneself – the complicated hopes, dreams, thoughts, and feelings of life and living with lupus. Keeping a journal or diary is an effective, and therapeutic way, to practice writing therapy.

 

Aromatherapy

Aromatherapy is the practice of using essential oils – the oils responsible for the smells and tastes of plants – to “balance, harmonize, and promote the health of body, mind, and spirit.” Aromatherapy has little science supporting it, and some smells or essential oils might even trigger a symptom flare if used haphazardly. However, in our article on aromatherapy, we talk about how using certain oils may be relaxing, and help relieve stress.

 

Music Therapy

Music therapy is the use of music to reduce stress, usually by listening to it to ‘come down from’ a stressful situation or to even shift the perception of a current situation. In our article on stress, lupus, and music, we talk about a study that saw lowered anxiety and feelings of stress after listening to self-selected or classical music. Make sure not to play your music too loud — as that can cause stress and damage your ears!

 

Acupuncture

Acupuncture uses thin, solid metal needles that are carefully inserted into the skin at specific points, called meridians. Acupuncture can also include heat, herbal therapies, or mild electrical stimulation. In our article on acupuncture, we discuss its possible benefits for relieving stress and helping with lupus symptoms.

 

Positive Affirmation

Positive affirmations are a verbal exercise where you repeat positive phrases to yourself, out loud, at least once a day. In our article on positive affirmation, we reveal that something so simple can help reduce stress, improve self-esteem, and change the way the brain works – improving mood.

Lifestyle Choices

You can do a lot to reduce your exposure to stressors. As we discuss in our stress and pain relief article here, you should try eating healthy as often as possible, and wearing clothes that keep you comfortably warm and protect you from light. Exercise is also a good habit to have, as it can help prevent stress.

Stress may be difficult to avoid at work, but taking breaks and pacing yourself will go a long way to holding back a symptom flare. Take care of yourself – you deserve it.

1. When might someone choose to see a mental health professional?

Jennifer: Mental health issues are more common than we realize, and receiving the help of a professional can be the first step towards addressing our emotional well being and feeling better. Those living with lupus or another chronic illness are at a higher risk for depression and anxiety. Anxiety is essentially, a fear. If we become aware of a challenge or any doubt we have, we can address it. Believing in ourselves, and our strength, to face anything, can eliminate the fear.

Strength and self-confidence can be the most important elements of a positive self esteem and the endurance to handle the persistent symptoms of a chronic illness. It becomes easier to build our strength and confidence in ourselves with support from others, and spending time around others who believe in us, and our capabilities. Recognizing that we are not alone, and receiving help from others, can make a difference. We must utilize the support system we have, and even recruit one, if we identify the need.

In addition to feelings of depression, stress, and anxiety, it may be useful to speak with a mental health professional when:

• experiencing decreased self-confidence
• suffering a loss or trauma
• struggling with difficult life situations or changes
• experiencing relationship conflicts and/or communication difficulties
• attempting to overcome substance abuse or addiction

These are some broad categories. In general, it can be beneficial to visit a mental health provider when seeking to feel calmer and to gain clarity and understanding about yourself and life circumstances.

2. What does a mental health provider do to assist?

Jennifer: When seeking a mental health professional, feeling comfortable with the treatment provider, is one of the most important aspects of selecting someone. Because the goal is to share symptoms, experiences, concerns, thoughts, feelings, and fears that may exist, it is significant that the client feel secure and safe with the provider. The strength of the clinical relationship can be one of the most important parts of mental health treatment.

The type of treatment varies in mental health, just like a medical illness, based on the symptoms and needs of the patient. Mental health providers may help by:

• identifying problems
• providing assessments (including psychosocial assessments, identification of stressors, and assessment of functioning)
• counseling
• performing psychological testing
• prescribing medication
• providing psychoeducation
• setting goals
• outlining a plan for treatment
• making referrals (for housing, hospitalization, additional treatment, programs, and more)

3. There are many types of mental health professionals. Who should I see?

Jennifer: Mental health providers vary by background training and provide different functions according to the type of degree and license they have.

Psychiatrist

A psychiatrist (a practitioner with a medical degree in psychiatry, MD or DO) has the ability to prescribe medication and can continue to provide medication management for the treatment of mental health conditions. Psychiatrists may also provide mental health counseling. Though medication may be needed for the treatment of certain symptoms or conditions, it is not used to treat all mental health issues.

 

Psychologist

A psychologist (a practitioner with a PhD or a PsyD degree) can perform psychological testing, which evaluates a person’s behavior, personality, and capabilities in the effort to determine the need and plan for treatment. Psychologists may also provide mental health counseling or psychoanalysis. Psychoanalysis is the study of the unconscious mind.

 

Social Workers

A social worker (a practitioner with an MSW, and an LMSW or LCSW) can conduct a psychosocial assessment to assess a person’s emotional and mental health. This type of evaluation assesses the person’s role within their family and community, and draws from a person’s background, social relationships with others, and influence from one’s environment. Social workers also provide mental health counseling.

 

Editor’s Note: Some types of people who may claim to offer mental health support, such as life coaches, may not have any licensure or have completed any verified curriculum. While these people may offer some benefit, they are not subject to the rules, standards of care, and liabilities of licensed professionals. For these reasons, working with licensed professionals is considerably safer. You wouldn’t turn to a person without the appropriate credentials to perform surgery — is it worth the risk with your mental health?

4. Okay I’m in. But how do I go about finding a mental health professional that works for me?

Jennifer: There are various ways to select a mental health provider. The internet allows us the opportunity to search for a mental health practitioner with great convenience. Psychology Today lists mental health practitioners by zip code and specialty, and further describes providers by profile advertisements. Psychology Today also verifies the background and state licensure of all providers before listing them on the website. Many mental health practitioners also have their own websites, identifying their capabilities, background training, specialties, and treatment modalities

When seeking the help of a mental health practitioner, it can be helpful to speak to a primary care physician, or a guidance counselor at a school.  They often have names of providers for mental health services, to whom they refer patients and students.  Colleges often have counseling centers that provide mental health treatment, or a contact that can refer students off campus for services.

The National Alliance on Mental Illness (NAMI) is an organization set up to provide resources for those seeking mental health education and treatment. Their website provides information about various mental health conditions, and options for support services. NAMI has a help line committed to assisting those in crisis, as well as a suicide prevention line.

It is important to realize that you are not alone. Receiving support and addressing concerns comes easier without stigma. We don’t have to struggle if we get support.

Editor’s Note: Mental health services may be covered by your insurance. The benefits page of your insurance should help you identify practitioners that are covered. Some licensed professionals may not accept insurance. Mental health professionals are used to hearing questions about payments and insurance. If you have questions about coverage, pricing, or concerns over the affordability of the care, bring it up as soon as possible with the mental health professional. They may be aware of solutions that can help make mental health care a viable option.

The goal of lupus treatment can vary between clinicians and people living with lupus. A recent study found that rheumatologists’ primary aim is to minimize long-term damage to organs while the top two patient concerns were fatigue and pain. This can lead to Lupus Warriors trying Complementary and Alternative Medicines (CAM) to battle symptoms.

Around 50% of people reported using alternative therapies in a survey of 707 people with lupus (SLE) from Britain, the United States, and Canada. A separate survey found that usage was slightly higher in China at 66.5%.

Alternative treatments encompass a range of treatments and products including:

• natural products (herbs, vitamins, and supplements)
• mind and body medicine
• homeopathy
• traditional Chinese medicine (e.g., acupuncture, tai chi)

What is acupuncture?

Acupuncture is the practice of inserting thin, solid metal needles into the skin. The needles can sometimes be administered along with heat, herbal therapies, or mild electrical stimulation. Because the needles are small and carefully placed, and do not penetrate deeply into the body, acupuncture is not usually painful.

There are many unsubstantiated claims about acupuncture including that it can treat infertility and insomnia. However, despite a large number of research studies, there is limited evidence for its effectiveness generically. Though there is evidence that acupuncture provides relief for some pain conditions.

Is acupuncture safe?

When done by a qualified, competent practitioner using sterile needles, acupuncture is safe for people with lupus.

In a study published in 2008, 24 patients with systemic lupus erythematosus (SLE) were observed over several months. Approximately 10 of the patients received acupuncture with manipulation, or “light needling” also known as sham acupuncture. After a 10-session course of acupuncture, these 10 patients were compared to the other 14.

These patients reported reduced pain, and no serious adverse effects were reported. They did experience some temporary mild needling sensations and lightheadedness, however. Other known side effects of acupuncture are mild bleeding, bruising, and soreness.

Other studies on acupuncture have similar results: when done properly, acupuncture will not trigger symptom flares or cause severe side effects.

The risks of acupuncture are low, but you can control even those risks by using a well-recommended, qualified acupuncture practitioner.

You should avoid using acupuncture if you:

• Have a bleeding disorder, which can cause the small bleeding from acupuncture to be more problematic
• Have a pacemaker, since electrical stimulation can interfere with the pacemaker
• Are pregnant, since some forms of acupuncture are thought to stimulate labor

Does acupuncture help for people with lupus?

In the same study from above, the patients who had received acupuncture reported a nearly 30% improvement to their symptoms.

Both anecdotes and research suggest that acupuncture reduces the perception of pain, including chronic pain, for many people. This could help reduce the need for painkillers.

It is still unknown whether acupuncture reduces pain through biological means or by shifting expectations. It may even act through both methods.

How does acupuncture work?

Many researchers believe that acupuncture works through the placebo effect. Even though a therapy might not chemically or physically change anything in the body, it can cause a change in symptoms – even a major improvement – because the person believes that it will work. The placebo effect is very powerful, and new medications and therapies are often compared to control groups given a “sham” therapy, such as sugar pills or non-medicated IV fluid.

Support for the theory that the placebo effect causes the benefits of acupuncture comes from a number of studies where acupuncture was compared to “sham” acupuncture interventions. In many of these studies, the “sham” interventions were just as effective as traditional acupuncture.

But not all researchers believe that the placebo effect is the mechanism for this benefit. A 2012 meta-analysis explored the effectiveness of acupuncture in 29 randomly controlled trials. These studies found that acupuncture reduced pain by 50% while sham acupuncture only caused a 43% pain reduction. The researchers concluded that the entire benefit could not be ascribed to placebo effect alone.  

So how does acupuncture work? There are a few theories, though, that may be promising for further research:

• Nervous system stimulation
  • Since many of the places where acupuncture needles are placed, known as meridians, are areas with nerve clusters, the use of needles, heat, or electricity may change how they transmit signals to the brain. This may change how the brain perceives pain.
• Pain induction
  • By causing many small points of pain or sensation, acupuncture may dilute the sensation of pain to the point where the brain cannot perceive it as strongly.
• Stress reduction
  • Acupuncture is often performed in a relaxing and calm atmosphere, with a high degree of care and tailoring to the patient. It is generally non-painful, and may even encourage a positive mood or feelings of calmness. Because of this, acupuncture may reduce both feelings of stress and the body chemicals associated with stress. Stress relief is associated with lower levels of inflammation and milder lupus symptoms in people with SLE.
• Beta-endorphins
  • The mild pain and skin damage that acupuncture causes may cause the body to release small amounts of beta-endorphins, which dull the sensation of pain throughout the body and promote positive moods.
• Adenosine
  • Puncturing the skin (or pinching it) may release adenosine into the space between cells and the bloodstream. Adenosine is anti-inflammatory, and the body turns adenosine into opiates, which reduce pain. Other anti-inflammatory chemicals may also be released into the body through this same mechanism.

These may work alongside a placebo effect to support good therapies and good health.

Using acupuncture

Acupuncture is generally safe and might be effective for people with lupus. If you think it will help your pain or inflammation, talk to your lupus treatment team about it. They may have recommendations for acupuncture practitioners with a good reputation or who are covered by your insurance.

Acupuncture is often used alongside other alternative therapies. Read our articles on the topic to see what aromatherapy and stress management can do for you.

Although acupuncture works well with medications, caution should definitely be used with medications that increase bleeding or skin reactions. Always be sure to discuss acupuncture and other alternative therapies with your treatment team for safety.

What is art therapy?

Art therapy is a technique of using non-verbal, creative outlets to help a person express themselves. It is founded on the belief that there is therapeutic value in artistic self-expression. There are two steps to the art therapy process:

1. Creating the art
2. Considering the created product for psychological or emotional undertones

People often find that working with a credentialed art therapist can help in the self-reflected portion of the art experience. These therapists are trained to understand how color, texture, and additional mediums may be relevant for another individual. Non-verbal messages, symbols, and metaphors can often be found which may help people better understand patterns of behavior, emotions, and feelings.

Examples of art therapy include:

• drawing
• painting
• sculpting
• coloring
• collage
• computer art

Lupus and Art Therapy

A 2007 study published in the Journal of Clinical Rheumatology used disease drawings from the patient’s perspective. 38 women with lupus (SLE) participated in the exercise.

The participants attended a ‘My Life’ course for people with lupus. During one of the sessions, the participants were asked to draw a picture of their disease and then comment on the pictures. While no measurements of stress were evaluated, the researcher concluded that drawing provided a “good beginning” to conversation. And, it was an effective strategy to communicate differences and challenges to clinicians. In this way, it was seen as an advantage over verbal interviewing alone.

A 2010 review published in Art Therapy: Journal of the American Art Therapy Association explored studies published between 1999-2007 where art therapy was the only intervention. These studies included had various participant ages, including children, and numerous diseases, including mental health concerns.

In addition to the variation in participants, the measured result also differed across the studies. Strategies for measuring improvement included measurements of stress, symptom indices, and some behavioral measures like speech fluency.

Despite these variations, the researchers concluded that there is a “small body of quantifiable data to support the claim that art therapy is effective.”

Looking for additional information? Speak with your lupus treatment team and check out the American Art Therapy Association.

What is aromatherapy?

Aromatherapy is a complementary and alternative medicine classified by the National Institute of Health (NIH) as an “alternative medical system.” It also goes by the name: essential oil therapy.

The name ‘aromatherapie’ was coined by French chemist and perfume-developer Rene-Maurice Gattefosse in 1937. This name was used to differentiate the medical uses of essential oils from those used for perfume.

As defined by the National Association for Holistic Aromatherapy, aromatherapy is the “art and science of utilizing naturally extracted aromatic essences from plants to balance, harmonize and promote the health of body, mind and spirit.”

The research into the effectiveness of aromatherapy is not particularly robust. A study highlighted by the NIH found limited benefit when exploring lavender and lemon scents — though there were reductions of stress hormones when using aromatherapy following stressors. Other studies have found mixed results on a number of symptoms including nausea-, pain-, stress-, and anxiety-relief.

In general, the research offers some promise. But, it is relatively inconclusive.

 

Is aromatherapy safe?

Essential oils are generally considered safe and do not need to be approved by the FDA. (For more regulatory information, see the FDA explanation of aromatherapy here.)

However, depending on the application method used, there can be unintended side effects. People with many allergies or anaphylaxis may want to avoid essential oils or a consult their lupus treatment team before trying any aromatherapy options.

The National Association of Holistic Aromatherapy provides additional insights into essential oils to avoid for pregnant women and essential oils that are more likely to be skin irritants.

The most popular essential oils

From Aromatherapy.com, here are some of the most popular essential oils and their potential therapeutic benefits:

• Chamomile
  • Use: soothing characteristics; calming
• Bergamot
  • Use: stress reduction; depression, anxiety
  • NOTE: known to cause skin issues and can have negative impacts when combined with UV/sunlight
• Cedarwood
  • Use: stress reduction
• Marjoram
  • Use: fights fatigue and depression; stress reduction
• Peppermint
  • Use: enhances mood; sharpens focus
• Rosemary
  • Use: mental stimulation; enhanced memory and focus
• Tea Tree
  • Use: immune booster; fighting infection

Methods of using aromatherapy

Different essential oils can be applied in various ways. Always be sure to use them appropriately based on the product that you are using. If you have questions, be sure to consult a clinician.

For additional application instructions and insights, learn more here

Methods of application include:

• Massage/body oil
• Lotions and creams
• Baths
• Steam inhalation
• Diffusers and spritzers

Brief history of writing therapy

In the late 1986, James W. Pennebaker, a social psychologist, published the seminal study which demonstrated the value of expressive writing. In the study, participants were asked to write about either a:

1. Past trauma
   • Participants directed to express their deep thoughts and feelings about the trauma
2. Neutral topic
   • Participants directed to write without revealing any emotions or opinions

Both groups wrote continuously about their topic for 15 minutes, for 4 consecutive days. However, if participants ran out of things to write about, they rewrote what they had written with different wording.

The most striking result of the study was that participants who wrote about a past trauma visited the doctor FEWER times in the following 4 months than the control group. Additionally, the researchers found short-term increases in distress and negative mood for the group that wrote about a past trauma. These results suggesting a measurable benefit of writing therapy spawned over 200 additional studies looking to replicate and further validate the findings.

Connections to lupus

A 2016 study published in the Official Journal of the American Art Therapy Association explored the benefits of writing therapy in adults with lupus. For a full recap of the study, click here.

The results of this study validated the previous research in the field. Following 4 writing therapy sessions, the participants completed questionnaires. After 3 months, participants that completed the writing exercises reported less fatigue than controls.

 

Additional writing therapy research

Subsequent research has explored many topics. One focus has been on the types of writing that can trigger positive long-term responses. Additionally, there is also some support for benefit-finding writing where writers focus on the positive side of negative events.

However, much of the recent research has explored writing therapy outcomes in 3 categories:

1. Objectively assessed outcomes
   • Results are differences in physiological or behavioral outcomes
   • Examples include: benefits to immune system functioning, increasing working memory capacity, & reducing blood pressure
2. Self-reported physical health outcomes
   • Results are patient-reported. They refer to physical symptoms
   • Examples include: decreases in doctor visits & improved physical symptoms
3. Self-reported emotional health outcomes
   • Results are patient-reported. Also, they relate to psychological factors
   • There are fewer findings suggesting that writing therapy can improve self-reported emotional health as compared to physical health
   • Examples include: improved mood and affect

Additionally, in 2014, a meta-analysis of writing therapy studies on clinical populations was conducted. The meta-analysis looked at 9 expressive writing studies and found significant health benefits. But, the benefits could be attributed to physical health outcomes only. Psychological health outcomes were not significantly improved.

Top 5 goals of expressive writing

1. Develop an understanding of yourself and better understanding of others
2. Release tension by expressing intense emotions
3. Improve coping skills
4. Positive self-esteem boost for expressing yourself and your creativity
5. Find personal meaning in ideas or events

Current findings on trauma and post traumatic stress disorder (PTSD)

A study published on September 20, 2017 in the journal Arthritis and Rheumatology explored the detrimental impact of physical health in people that have experienced a significant trauma. Post traumatic stress disorder is a common condition that can impact those that have experienced or witnessed a trauma. This trauma can range from participation in a war zone to the death of a loved one.

Not all traumas will result in a person developing PTSD. The United States Office of Veteran’s Affairs estimates that 7-8% of the population will experience PTSD at some point in their lives.

Also, the prevalence of PTSD differs by sex. 10% of women will experience PTSD during their lifetime compared to 4% for men.

To be diagnosed with PTSD, the following symptoms must be present:

• At least 1 re-experiencing symptom
  • Flashbacks
  • Bad dreams
  • Terrifying thoughts
• At least 1 avoidance behavior
  • Not visiting certain locations or places because they remind a person of the trauma
  • Not thinking about certain things or people to avoid the trauma
• At least 2 arousal and reaction symptoms
  • Outbursts
  • Difficulty sleeping
  • Anger
  • Easily startled or on edge
• At least 2 cognition symptoms
  • Negative thoughts about yourself or the world
  • Loss of interest in previously enjoyable activities
  • Difficulty remembering details of the trauma
  • Feelings of guilt or blame that are undue

NOTE: If you believe that you may be experiencing PTSD, speak with your lupus treatment team and consider visiting a mental health professional.

Exploring the research

The study mentioned above used a longitudinal observational research design with a large cohort of American women. Researchers can’t impose a trauma on participants as part of the trial for ethical reasons. Because of this, longitudinal trials of this type have large numbers of participants and then use self-reporting, diagnoses, and other criteria to create condition groups.

For this trial, 54,763 American women participated. Researchers followed up with these people for 24 years. They also captured:

• Diagnoses of lupus (SLE) based on the American College of Rheumatology definition
• Short Screening Scale for DSM-IV PTSD
  • The DSM is the diagnostic tool for mental health issues
• The Brief Trauma Questionnaire (BTQ)
  • The BTQ is a 10-question survey and scoring mechanisms to determine if a person has been exposed to certain traumatic events

From the initial cohort, 73 people eventually developed lupus (SLE). The researchers then analyzed the association between SLE development and exposure to trauma during the 24-year period.

The data revealed two interesting findings:

1. Women who met the diagnostic criteria for PTSD were 2.94 times more likely to develop lupus; and
2. Regardless of PTSD symptoms, women who experienced trauma were 2.87 times more likely to develop lupus

Because of these results, the researchers concluded that: “psychosocial trauma and associated stress responses may lead to autoimmune disease.”

Additional research into the trauma-lupus link

While the study above was the first longitudinal study to explore this link, prior research has viewed stress as a trigger for lupus. In fact, a 2008 study noted that genetic, environmental, hormonal, and immunologic factors may only account for 50% of the onset of an autoimmune disease. The remaining 50% was referred to as “unknown trigger factors.”

Adding to the case for stress or trauma, the researchers highlighted an interesting statistic: As many as 80% of people with an autoimmune disease reported “uncommon emotional stress before disease onset.

Taken with the recent research, it is possible that these emotional stressors could a symptom of a trauma or PTSD. In this way, the previously hypothesized issue with stress could truly be a response to trauma.

What’s next?

Additional research is needed to further explore this connection between trauma, emotional stress, and the development of autoimmune diseases. Psychological stress is known to be harmful, but the physiological implications are still being untangled. Current research is exploring how neurotransmitters (which are impacted by stress) alter the production of cytokines (the signaling cells in the immune system).

Is massage therapy safe for people with lupus?

If you are experiencing a lupus flare, it may be a good idea to postpone massage therapy – particularly if massage therapy is not already a part of your treatment regimen. Additionally, if you have any open lesions or sores on your body, you may not qualify for service based on the policies of the massage therapy office.

In general, the NIH says that massage therapy offers benefits with very few risks, when provided by a trained professional. Massage therapists must be licensed before they can practice in most states.

This can be compared to licensure for doctors, physical and occupational therapists, a dietician, and other clinicians. While the duration and topics vary for the different professions, the health professionals are required to complete an approved curriculum and prove competency. Another reason to look for certified individuals is that insurance may cover massage therapy. But, insurance companies likely will not provide coverage for unlicensed professionals. The American Massage Therapy Association (AMTA) website can help you find licensed professionals near you — and you can find approved providers through your health insurance.

 

 

Cutaneous lupus safety and massage therapy

The Lupus Foundation of America shares that people with cutaneous lupus should be careful when receiving strong, vigorous massages. Forceful kneading can cause bleeding and/or bruising under the skin. In cutaneous lupus, these types of injuries can cause skin lesions as a result of the Koebner phenomenon. Essentially, this means that the damage caused by cutaneous lupus can be spread by the force of the massage.

 

Additionally, most massage therapists will use oils or lotions. If you have allergies, be sure to ask about any potential irritants. And, it is important to communicate with the massage professional about your health concerns, goals for treatment, and preferences.

Research into lupus, fibromyalgia, & massage therapy

Are people with lupus using alternative therapies, such as massage, to combat lupus? A study published in 2000 in the journal Arthritis & Rheumatology asked that question using a cohort of 707 people with lupus in 3 countries: the United States, Canada, and the United Kingdom.

Around 19% of people in the sample admitted to using massage therapy to battle lupus. There was little difference among the countries in rate of usage. Insurance companies are more likely to pay for massage therapy today. This increases usage.

 

Lupus & massage therapy

There are few controlled trials on the effectiveness of massage therapy for Lupus Warriors. However, there is some evidence of effectiveness via case studies.

In health research, a case study is a formal write-up by clinicians about a particular person. Often, they highlight a novel treatment option or a rare health condition. It is not possible to determine effectiveness of a treatment from a case study because there is only one participant who may or may not be representative of the rest of the population. However, they can provide insights that can lead to future research in an area.

A case study published in 2014 explored the role of both acupuncture and massage therapy on a 41-year old woman with lupus. The woman received 20 minutes of both therapies daily for 30 days (with 7 days of rest in between sessions after the first 15 days).

The clinicians reported positive outcomes of the interventions including:

• decreased pain (as measured by the Visual Analog Scale)
• less sleepiness during the day
• improved quality of sleep (as measured by the Epworth Sleepiness Scale and the Pittsburgh Sleep Quality Index)
• improved quality of life (as measured by the Short-Form 36 Version 2 Health Survey)

In conclusion, the clinicians stated that additional research into the value of massage therapy is necessary to determine the benefits for people with lupus.

Connecting to fibromyalgia

In 2014, a meta-analysis was published exploring the effectiveness of massage in battling symptoms of fibromyalgia. A meta-analysis is a study that tries to combine a number of other studies to increase the power of the conclusions that can be reached.

The researchers looked at 9 randomly controlled trials (RCTs) that involved 404 clinical trial participants. There was some large variety in the duration of the massage therapy sessions (25-90 minutes) and the amount of time that participants received massages (from 1-24 weeks). Still, the researchers obtained some fascinating conclusions.

When people with fibromyalgia continued a massage therapy course of treatment for more than 5 weeks, the positive benefits included:

• decreased pain
• improved anxiety
• decreased depression

These results are promising. While the underlying reason why these benefits is not known, the researchers speculated that there is an interaction between both physical and psychological patterns.

 

Looking to start?

Interested in including massage therapy in your treatment plan? Speak with your lupus treatment team. They may know of practitioners that have experience working with people with lupus in your area.