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.

Vitamin C and the Immune System

For Lupus Warriors, taking care of the immune system is crucial. As mentioned earlier, a lack of vitamin C can lead to scurvy, a serious immune deficiency.

Several cells of the immune system accumulate vitamin C and need the vitamin to perform their task, especially phagocytes and t-cells. Therefore, vitamin c is not a preventive remedy, but rather a necessary one to ensure the immune system’s proper function. In the end, the immune system is what protects the body against illnesses.

Repairing Tissues

Topical vitamin C is the new essential skincare ingredient to keeping skin looking young and refreshed. This is because vitamin c has immense capabilities of building and rebuilding the body’s tissues, like how it encourages the growth of collagen. Supplemental vitamin c might assist the body in repairing damaged tissue from flares.

How Much Vitamin C Should One Take?

The Institute of Medicine (IOM) has created a set of reference values for specific nutrient intake levels, and that includes vitamin C. The guidelines consider average daily nutrient intake from both supplements and foods, according to the Recommended Dietary Allowance (RDA). These guidelines meet the standards for more than 97% of healthy individuals. Below are the recommended intake amounts for vitamin C:

The debate is on whether or not daily low-dose vitamin c is better for the body than a sporadic one time high-dose of vitamin c. Some studies of IV high-dose vitamin C in patients with cancer have shown improved quality of life, as well as fewer side effects.

High-Dose Vitamin C

High-dose vitamin C may be taken:

• by mouth, typically in pills or lozenges
• given by an intravenous (IV) infusion (through a vein into the bloodstream)
  • When taken by IV infusion, vitamin C can reach higher levels in the blood than when the same amount is taken orally

Some clinicians believe that high-dose vitamin c can help combat lupus flares from the onset or aid in recovery. This belief is rooted in the medical community’s knowledge of the regenerative properties of vitamin C.

Vitamin C in the News

The Roles of Vitamin C in Skin Health

Normal human skin contains high levels of vitamin C, which stimulates collagen synthesis and assisting in antioxidant protection against UV-induced photo-damage. Vitamin C is a powerful antioxidant that can neutralize and remove oxidants. Such as those found in environmental pollutants and after exposure to ultraviolet radiation. This activity appears to be of particular importance in the epidermis, where vitamin C is concentrated in the skin. Find out more, here.

 

Vitamin C and Heart Health

Can vitamin C help reduce the risk of cardiovascular disease (CVD)?

Researchers explored the role of vitamin C on heart health in a large number of studies and subsequent meta-analyses. These studies suggest that vitamin C can favorably affect blood pressure and endothelial function, two risk factors for CVD.

Observational studies have also noted increases in CVD risk among people with low plasma concentrations of vitamin C.

Discover more about vitamin C and heart health, here.

 

The Discovery of Vitamin C

“Scurvy was a common problem in the world’s navies and is estimated to have affected 2 million sailors.”

A Scottish doctor, James Lind, conducted one of the first ever clinical trials to develop the theory that citrus fruits cured scurvy. Still, at the time of the study in 1747, researchers had no concept of vitamins.

“Axel Holst and Theodor Frölich produced scurvy in the guinea pig, which like humans requires vitamin C in the diet. In 1928, Albert Szent-Györgyi isolated a substance from adrenal glands that he called ‘hexuronic acid’. Four years later, Charles Glen King isolated vitamin C in his laboratory and concluded that it was the same as ‘hexuronic acid’.” Learn more here.

A Lupus Warriors Takeaway

To ensure you are getting enough vitamin C, look at your diet. Be sure to eat fruits and vegetables, especially citrus fruits and dark green vegetables.

Generally speaking, even high doses of vitamin C are easily tolerated, but with any increased amount be sure to watch for adverse reactions and speak with your lupus treatment team about adding anything to your treatment plan.

Updated on September 14, 2020.

In reflexology, different parts of the body are “mapped” to different areas of the hands and feet (and sometimes the tongue). Practitioners focus on these spots because of the large amount of nerve endings in these zones. (For this reason, another name for reflexology is “zone therapy.”)

Reflexology attempts to encourage the flow of blood and nutrients to the organs to improve health.

Similarly, other practitioners claim that these zones matter due to the flow of “chi” through the body. Chi is a sort of life-energy that, in many Eastern alternative medicine traditions, allow life to function. It is thought to flow through specific “channels.” When these channels become blocked during illness, practitioners use their alternative medicine therapies to “un-block” them and cure the disease. Chi as a concept is not proven by traditional research methods.

 

Research Finds Limited Benefit

A 2009 review published in the Medical Journal of Australia evaluated 18 randomly-controlled trials (RCTs) using reflexology for a number of conditions including multiple sclerosis, irritable bowel syndrome, and headaches. Many studies had poor methodological quality and few participants.

The researchers concluded that, “The best evidence available to date does not demonstrate convincingly that reflexology is an effective treatment for any medical condition.”

It should also be noted that training for practitioners varies dramatically. There are no formal training requirements to practice reflexology or call oneself a reflexologist.

However, as a form of massage done by someone trained in massage therapy, reflexology has some proven stress-relief and pain-relief benefits for people with lupus.

Is Reflexology Effective?

There is no proof that reflexology can cure any disease.

However, it may provide pain-relief and relaxation as a form of gentle foot massage. Reflexology can:

• decrease stress and anxiety
• is low risk and tolerated by nearly everybody (and every body)
• works well alongside other therapies

Be aware of any oils or herbs used. Certain oils or herbs used during the massage trigger allergic reactions.

 

Reflexology and Alternative Medicine for Lupus?

People with lupus turn to alternative – also known as “complementary” medicine – because they are frustrated. And with good reason! Sometimes you leave the hospital feeling just as bad as when you went in. Doctors don’t always seem to listen to concerns. And, the side effects of the medications can be extremely unpleasant.

Alternative therapies offer pain relief, less expensive procedures, and a listening ear who takes you seriously. Even if some therapies are unproven, they may induce the placebo effect. This is when non-therapeutics cause therapeutic benefit due to expectations.

But, some alternative methods have been shown to have some therapeutic benefit:

• Acupuncture may “reduce the perception of pain” in a measurable way by stimulating nerves in the skin and releasing natural painkillers called endorphins
• Mindfulness meditation practices reduce stress and even helps the mind better process new stress. Because this brings down stress overall, it can help stave off a flare
• Pets can help with stress management and even reduce the perception of pain

 

More and more, doctors are recognizing that alternative/complementary medicine can act as a good additional source of help for people suffering from chronic diseases. The face of medicine is changing to a more equal model.

Reflexology, as a form of massage therapy, might be worth including.

The Beneficial Aspects of Massage

Reflexology, like other massage therapies, squeeze and press muscles in the body. They may activate certain nerve groups as well and encourage blood flow into the affected area. Oils, herbs, and heating elements increase this effect.

Although massages do not cause harm if done correctly (by trained practitioners), they trick the body into thinking that it was damaged or stressed. As a consequence, the body releases endorphins, natural opioids that dull the pain response. This reduces chronic pain and promotes a sense of relaxation since the body is not actually wounded. The manipulation of the muscles also helps to loosen and stretch them, relieving tension that might have been causing pain on its own.

The combination of this relaxing feeling with a reduction in pain and feelings of stress can also encourage sleep. This can often be a problem for people with lupus. Better sleep can improve health for the whole body, so that alone can make a radical improvement in a person’s symptoms. You can read more about sleep and lupus here.

Final Thoughts on Reflexology

Will reflexology cure your lupus? No. However, as a low-risk therapy with no side effects, and a well-supported range of benefits, it certainly doesn’t hurt to try.

Is it better than any other massage therapy? That is up to you! If you are thinking of trying reflexology, look into other forms of massage as well. Find one that works best for you and your body.

Should you tell your doctor if you are trying reflexology? Yes. Let your lupus treatment team know, particularly if heat or herbal preparations are being used. Like supplements, these can potentially interact with your medications.

Sugar and Artificial Sweeteners

Sugar is linked to obesity, which affects the immune system. Sugar also changes the microbiome, which is linked to immune system health and proper regulation of the immune system. Changes to the microbiome can cause what is known as “Leaky bowel” syndrome, a condition where tiny particles slip between the cells of the intestines into the bloodstream and cause the immune system to overreact to the “invasion.” You can read more about leaky gut here. 

Refined, processed sugar, like fructose, is quickly processed by the body and linked to many additional health problems, including heart disease, depression, low moods, lack of focus, and inflammation. The lack of focus might be so extreme as to be the classic “brain fog” of lupus. The spikes of glucose in the bloodstream caused by fructose and processed sugar consumption can trigger lupus flares. It also contributes to tooth decay. You can read more about tooth decay and lupus here. 

Artificial sweeteners work by having a chemical structure that fit onto the taste receptor that detects ‘sweetness.’ The body is then fooled into thinking that it is tasting sugar, and you taste the sensation of “sweet.” However, unlike sugar, they do not become calories in the body and do not feed sugar-loving bacteria. In fact, most of them pass right through, chemically unchanged. They are empty sweetness, with no nutritional value and, usually, no toxic byproducts. Some artificial sweeteners can be broken down, but usually for fewer calories than sugar. 

Many people use artificial sweeteners to replace sugar in their diets in the hopes that they will consume fewer calories and less sugar without giving up the taste. People in lower income areas may not have easy access to foods that are not sweetened with refined sugars, and the appetite-sating qualities of sugar or sweetness might encourage poor eating habits. If they don’t have access to fresh fruit, artificial sweeteners might be the only option for reducing sugar intake without severe and frustrating lifestyle changes. 

However, the effects of artificial sweeteners are more complicated than just reducing sugar intake.

Artificial Sweeteners and Health

Studies involving what we put into our bodies and their effects on our health are notorious for being confusing. This is because the effect of diet on health can be very complicated and can change depending on how the diet interacts with one’s lifestyle. Overall, experts agree that refined sugar, especially when it is taken in the form of sugary beverages such as juice or soda, is awful for one’s health. However, whether artificial sweeteners are better or worse appears to be less certain.

While artificial sweeteners might help replace sugar and reduce sugar intake, whether they provide the same benefits as just cutting out sugar entirely is unclear. There are studies that indicate that the proposed benefits of artificial sweeteners do not pan out, at least as far as metabolic syndrome and diabetes are concerned.  In fact, some sweeteners may even trigger the symptoms of these diseases! 

Aside from the fact that artificial sweeteners are sometimes sweeter – and more desirable – than even healthy sweet foods like fruits, they also might completely undercut the effects of dieting. In fact, artificial sweeteners may create conflicting signals in the body, which leads to metabolism changes that encourage weight gain and diabetes. The body tastes sweet foods, which signals that there will be sugar to process, only to have no sugar actually coming in. The body produces hormones such as insulin to store the sugar in the body’s tissues, leading to low blood sugar which can then cause problems in the body. The body senses this lower blood sugar and sends signals to make up for the calories it isn’t getting. As it gets used to the fake sugar, the body encourages increased eating.  The person eats more, chooses sweet food over nutritious food, and ends up gaining weight anyway. Some of these artificial sweeteners are also potentially addictive (at least in rats,)  so it may be difficult to cut out sweet so-called “diet” foods once started.

However, the health harms of artificial sweeteners have been, historically, overstated. Studies on aspartame have shown that, although some individuals are sensitive to aspartame, and the sweetener is broken down into potentially toxic substances, there is not enough of those substances to cause any issues in most people. It seems to cause seizures in animals, but human studies have not backed this up. 

The use of artificial sweeteners was linked to increased risk of cardiovascular disease, though it is unclear if it is the diet or lifestyle of the people or the artificial sweetener itself that is to blame. 

According to the FDA, there is no clear evidence of artificial sweeteners causing cancer in humans, despite studies in rats showing a higher risk of bladder cancer. Rat urine, especially in male rats, is different than human urine, and this difference is what allows the artificial sweetener, in this case, saccharine to damage the bladder walls. This only occurs in rats, not humans. 

Stevia is a little more complicated.

Studies imply that it is safe, but in rats it reduced fertility and raised the possibility of other issues in the rats. In the lab it can be turned into a cancer promoting mutagen, though it is unclear whether it does so in the body. Many nations consider it unacceptable for use in food, and the FDA classes it as a “dietary supplement.” Whether this is justified is unclear. 

Other sweeteners have no major health controversies attached to them. Complicating matters, some studies have also shown benefits:

A 2018 study concluded that stevia, the extract of Stevia rebaudiana Bertoni, isn’t linked to serious health problems. It did cause weight loss, but this was possibly due to the lower sugar intake effecting the gut microbiome, which is an effect that can be seen in studies with other sweeteners as well. The gut microbiome is powerfully linked to weight and inflammation, so this is something to note.

This article by Healthline seems to refute the anti health claims and concludes that artificial sweeteners are beneficial if used to reduce the amount of sugar in the diet.  It is a complicated issue and there is compelling evidence both ways. Adding to this complexity is the fact that studying one sweetener does not tell you much about all of the others because they are chemically distinct. 

Artificial Sweeteners and Inflammation 

Artificial sweeteners may cause the gut wall and bacteria in the gut to react in ways that increase inflammation. This correlation appears to be unclear. Other studies show anti-inflammatory properties, mainly because the sweetener reduces a person’s sugar intake which is linked to lower inflammation. In the 2005 study in the Journal of Clinical Nutrition, this was not considered to be a particularly strong anti-inflammatory effect if there was an effect at all.

It may be a person-to-person thing, with different people reacting differently to artificial sweeteners. In this case study of a 54-year-old woman with an autoimmune disease (Hashimoto’s thyroiditis,) excessive consumption of artificial sweeteners may have caused or contributed to her disease, increasing inflammation. Her hormone and antibody levels returned to normal after removing sugar substitutes from her diet.

Artificial sweeteners such as aspartame are generally considered to be safe for people with lupus to eat. Artificial sweeteners are noted to be a potential cause of migraines along with food or a lack of caloric intake from food.

However, nutrition is a complicated issue that is difficult to study in humans, and with evidence pointing in both directions, one can conclude that it is the overall diet and the genetics of the patient, not the use of the artificial sweetener itself, that has the most effect on the body. Cutting out refined sugar is known to reduce inflammation, as well. The immune system is a complicated, multi-organ system that protects us from harmful substances, microbes, bacteria, and viruses. Normally, the immune system is in balance, taking out pathogens but stopping before it harms the body. Sugar is one of the substances that can disrupt that balance.

Cutting Sugar from the Diet

The autoimmune protocol diet currently does not recommend artificial sweeteners, though it allows these sweeteners to be used in moderation. You can read about calorie tracking and calorie-restricted diets here. 

There are some people who are sensitive to sugar who might find artificial sweeteners useful, but they are a poor dietary replacement and will not help you lose weight or fend off other problems such as diabetes. They also do have the advantage of not contributing to tooth decay because the bacteria in the mouth cannot use them. Since tooth problems are common for people with lupus, it is a well- appreciated effect. It’s hard to separate the food nutrition from the health behaviors in the case of artificial sweetener. Artificial sweeteners might be all right in small amounts (such as reducing sugar added to a morning coffee,) but regular consumption will be of little help. It’s hard to separate the food nutrition from the health behaviors in the case of artificial sweetener.

Cutting sugar from the diet is important, but sugar itself is not bad. In fact, the body does need some sugar to function. Sweet whole foods such as fruit contribute vitamins and fiber along with sugar, making them acceptable parts of even a lower-sugar diet. If you can eat fruit, it is highly recommended that you do so instead of consuming artificially sweetened foods. Fruits also tend to be rich in antioxidants such as vitamin C, making them a win-win option.

You should still exercise caution – fruit juices are not healthy and eating too much fruit can still cause a sugar overload in the body and the inflammation that comes along with excessive consumption of sugar.

Tips for Cutting Back on Sugar

Cutting back on sugar has many health benefits but is tricky. Here are some tips and tricks for how to manage it without artificial sweeteners.

• Read labels and keep an eye out for sugar in products you might not be expecting to find sugar in.
• Use less sugar and use more flavoring from extracts or spices to compensate.
• Sweet potato and other natural sweet but low-sugar food options can help replace sugar in the diet in a nutritious and tasty way. 
• Cut out soda and soft drinks, even the ‘diet’ kind. A little is fine, but daily consumption of soft drinks changes your metabolism more than you realize and drinking sugars (or sugar substitutes,) has no benefit for the body. 
• Brushing teeth, even after eating fruit, is highly recommended to combat tooth decay.

Overall, it seems that using artificial sweeteners is firmly in the “use it if you need it” category. Eating plenty of fiber, protein, and healthy fats while keeping an eye on the amount of food being eaten may be able to offset some of the disadvantages of artificial sweeteners. Plus, it’s overall healthier for you.

A connection to lupus?

Gluten intolerance and celiac disease frequently coexist with lupus. In one survey, the percentage of people with autoimmune diseases and celiac disease was as high as 30% (with the general population having a rate of autoimmune disease ranging from 3-9.4%). However, most scientists do not believe that there is a causal link to lupus. 

Instead, people with these conditions might share genes or gene combinations that make them more susceptible to autoimmune diseases, allergies, and intolerances to otherwise harmless proteins. The length of time that a person is exposed to gluten doesn’t appear to have an effect, which supports this theory. 

A gluten-free diet also did not prevent autoimmune disease in a 2002 study. But, that doesn’t mean that gluten-free diets don’t have value to people with lupus.

 

The benefits of going gluten-free

For people with gluten intolerance or celiacs, gluten can cause flares, worsen symptoms, and trigger the onset of disease. Gluten is also known to affect the microbiome, the colonies of bacteria that call our gut home. This complex network is highly connected to lupus and other autoimmune diseases. Because it does affect these systems, a gluten free diet can potentially help people with lupus who also have gluten intolerances or sensitivities.

Distinguishing lupus from gluten intolerance

Gluten intolerance can have both gut and non-gut-related symptoms. It can even be mistaken for SLE. because the inflammatory markers and symptoms can look almost exactly the same. This makes sense as both are caused by similar immune system issues firmly rooted in genetics.

In fact, this 2004 study provides a case where three different people presented symptoms that were diagnosed as lupus, but were really gluten sensitivity.

So how can you tell the difference?

Going on a gluten-free diet will help with an intolerance, but will have only a limited effect on lupus. Also, if you don’t have gluten intolerance, a restrictive diet won’t help very much with lupus. Figuring out your personal needs and tolerances is key.

Lupus medications will have less of an effect on gluten intolerance because they aren’t treating the core issue. 

Talk to your lupus treatment team if you suspect that you may be intolerant, have lupus, or potentially both. Figuring out what is going on with your body is the first step to finding the medical regimen – and diet – that is best for you. 

Read here for advice on how to make sure that your doctor gives you the help that you need. And remember that in the end, it is nutrition that counts the most when thinking about diet and lupus.

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!

You’ll see videos of animals being attentive and helpful to people in need within moments of clicking on to social media. In addition to being adorable, these videos are a reminder of how important animals are in our own lives.

Many different types of animals have been shown to provide comfort and health benefits to people with lupus including:

• Cats
• Dogs
• Horses
• Lizards
• Birds
• Rabbits
• Alpacas
• Guinea pigs

 

Animals are ideal companions because they are able to sense physical cues associated with pain or stress, such as slight changes in scent or body language. Petting animals is well-known to lower blood pressure and lower the perception of pain. It even has an impact at the neurochemical level.

Having a pet can make it less lonely when a lupus flare keeps you at home. And, the chores associated with pets such as walking, feeding, or grooming add positive motivation to get exercise and do activities throughout the day.

The benefits that animals provide to humans is well studied. However, pet ownership comes with some risks for people with lupus.

Are Pets Safe for People With lupus?

Allergies, disease, and injuries are the main concerns for people with lupus. Doctors and veterinarians alike recommend that people with lupus avoid exotic animals and birds, which cannot be fully vaccinated and may pass on infections to humans.

In general, if pets are well-vaccinated, well-trained, healthy, and clean, there are few health-related problems with bringing one into the home.

The other concern is being able to take proper care of the animal. There is an obligation to the pet to keep them healthy, happy, exercised, and clean. This can be costly both in money and in energy. Be mindful of what you can handle when considering a pet.

For example, young or energetic animals (think: puppies and kittens) require nighttime trips to the restroom, training, and a lot of playtime in general throughout the day. Older animals are generally calmer but can have health issues or behavior problems that require care and attention.

Unsure of adding the responsibilities of pet ownership? Animal therapy is a good alternative way to get your dose of pet-time without the stress.

What is Animal Assisted therapy?

Animal-assisted therapy is a program to help patients with mental, physical, and behavioral difficulties. Many rehabilitation centers and hospitals have programs or service animals present. Therapy animals are trained to be friendly, affectionate, gentle, and attentive to the needs of people. Therapy animals can be any type of animal, and they are a great comfort in times of stress.

The therapy animals are typically not the patient’s own pet, but this can actually be beneficial since it removes the stress of pet care from the whole situation.

Because animal-assisted therapy is supervised and involves well-trained, well-handled, and medically up-to-date animals, it is usually safe for people with lupus. Allergies are still an issue, so make sure to let the animal therapy program know so that they bring the right animal therapist for you.

Tips for Pet Care with Lupus

Pet ownership is challenging but rewarding, and people with lupus can definitely have a pet. A few tips:

• Make sure that there is enough space for the animal, as well as the right toys and accessories. Ask your veterinarian or pet store about cat trees, chew toys, treats, and other things appropriate to your pet. Of course, a simple cardboard box and crinkly paper may be enough for some animals.
• Regular trips to the veterinarian are also essential to keeping both pet and owner disease-free. Don’t skip these visits if you can help it. Fortunately, some clinics make house calls, and this can be a good option for people with lupus.

Small animals that require low levels of maintenance, including cats and small dogs, are a good fit for people with lupus. Animals that live in cages and aquariums don’t need walks, so fish, mice, domestic rats, hamsters, or guinea pigs can make great pets for people with lupus. These pets need very basic feeding, cleaning, and socializing, and can be very rewarding to care for.

When finding the right pet for you, consider how you would handle fluctuations in lupus disease activity. Work with your family, partner, roommates, and friends to identify support networks (for your pet and for you!). A pet-support team can take the stress out of pet ownership. That way, you can focus on the joy that pets bring to your life.

Not sure about a pet? There are many ways to reduce stress. Read here about other ways that you can manage stress, take care of your gut health, and get on a healthy sleep schedule.

Many people take supplements to add essential nutrients to their diet, hoping for potential health benefits.

People often try to add nutrients to their diet by taking them as supplements, separately from their food. Supplements can take the form of specially-formulated gummies, capsules of ground medicinal herbs or spices, or hard tablets.  In theory, they can help people make sure that they are taking in enough nutrients, or some sort of substance with health benefits. However, supplements are not always absorbed properly by the body and it is generally considered best to take in most nutrients through one’s diet. This is because nutrients often interact with each other when eaten together in their natural form, and that interaction itself may provide benefits to us in ways we don’t fully understand. Some supplements are, however, worth a second look.

Antioxidants

Antioxidants such as vitamin C, vitamin E, selenium, beta-carotene, lycopene, lutein, and zeaxanthin, protect cells from damage from oxidation. Oxidation is a chemical process that occurs in the body, when free radicals – unstable molecules – try to stabilize themselves by stealing electrons from some other molecule. This destabilizes that molecule in turn, and not only is it unable to do its job, but it needs to steal another electron to stabilize itself. This causes damage to many parts of your cells, even to the DNA! This is one of the weapons of the immune system, usually used against bacteria and virus-infected cells to kill them. But in autoimmune diseases like lupus, it is turned against the body. Antioxidants, on the other hand, have one or more electrons they can donate for free to these poor, unstable molecules, bringing them back to working order and preventing damage.

There is a lot of research that supports the idea that antioxidants are essential for health, and can even help prevent or reduce the symptoms of chronic disease. It is highly recommended that you take in antioxidants through your diet, but fortunately, antioxidants are one of the easiest nutrients to find! Foods rich in antioxidants include many fruits and vegetables (especially red, orange, or yellow fruits,) fresh fruit juices, and flours (especially buckwheat, millet, and barley.) These also have other nutrients that people with lupus need. But what about supplements?

There are a lot of antioxidant supplements out there, especially Vitamin C, also known as ascorbic acid, marketed to people with lupus. These can lead to very high intakes.

High doses of vitamin C might have many benefits for people with lupus, but it is not without harm. Some people have serious allergic reactions to citrus, an easy dietary source of vitamin C, and others have severe reactions to vitamin C supplements. Some other antioxidant supplements have undergone processing that causes them to have molecules that encourage oxidation damage, which are the opposite of antioxidants.

In short, the answer is that supplements (or IV antioxidants,) can be very useful for people with lupus, but should be monitored. It’s a good idea to make sure you are getting plenty of antioxidants through your diet anyway, which may interact with other vitamins and nutrients in the fruits and vegetables for better health effects.

Turmeric and Lupus

Turmeric is a bright orange root related to ginger that is dried, ground into powder, and used in many Indian and Middle Eastern foods. Curcurmin, a chemical compound found in turmeric (about 3.14% of ground turmeric,) has anti-inflammatory effects. To make sure they are getting curcurmin into their systems, some people take turmeric supplements in the form of capsules containing the ground powder. It isn’t a bad idea: In studies, using just the powdered turmeric as a supplement reduced proteinuria, hematuria, and systolic blood pressure in people with lupus. Like other supplements, the studies were inconclusive, and some people with lupus report that it made pre-existing heart problems worse (although it was not reported to have other side effects.) It can also be taken as an herbal tea.

Omega 3 Fatty Acids and Lupus

Fish oil is extracted from oily fish like salmon (or from krill and some algae,) as well as vegetables and oils like mustardseed oil and walnut oil, that is rich in ecosapentaenoic acid (EPA) and docosaheaenoic acid (DHA.) These are also known as Omega-3 fatty acids, and many of the diets that are good for lupus also have sources of these oils. Omega-3 fatty acids are important for people with lupus because they are turned into eicosanoids, which signal the immune system to turn itself down. These oils are anti-inflammatory, and some people try to make sure they take in enough omega-3 fatty acids by taking supplements.

Fish oil supplements have minor side effects,  typically to do with the fish oil itself, which can upset the stomach and cause “fishy breath.” Some people have more intense reactions, such as rashes and nosebleeds, though these are uncommon.

While many people take fish oil pills without issue, it is generally considered to be better to take in Omega-3 fatty acids as food and eating a high amount of foods rich in EPA and DHA. You can read more about Omega-3 fatty acids, here.

CBD, Food, and Lupus

Cannabidiol, or CBD oil, is an extract from the cannabis and hemp plants. It can be ingested as a supplement pill, as part of an edible, or added to foods. CBD does not cause a “high” and is being studied as a way to reduce symptoms of pain, reduced appetite, and inflammation in chronic diseases. CBD can have interactions with medications, or even trigger flares. It is also difficult to control the dosage when it is added to food. Ingest with care!

Probiotics and Lupus

Our gut is full of bacteria that help digest food, break down vitamins, produce vitamins, and even help regulate the immune system. This is called the “gut microbiome” and the bacteria involved are often referred to as “good bacteria.”

Probiotics are an infusion of “good bacteria” into the gut, usually by eating foods that are rich in these types of bacteria, but sometimes by ingesting supplement tablets designed to protect the bacteria from being digested. Probiotics can be potentially helpful for people with lupus, even potentially reducing inflammation in the kidneys. Lupus also may involve damage to the gut wall, which infusions of good bacteria may help to heal.

Foods that have probiotics include ferment foods like yogurt, miso (the main component of miso soup,) tempeh (fermented tofu,) and many pickles. Many of these fermented foods are also very healthy foods, a good addition to a balanced diet, and compatible with other non-inflammatory diets.

Calcium and Lupus

Calcium is important for both bone health and neurological function, and it gets more difficult to take in and use calcium as we get older. People with lupus are at higher risk for osteoporosis (bone weakness,) and should try to make sure they are getting enough calcium in their diet, which is important for bone health. Dairy foods, dark leafy greens, and broccoli are good sources of calcium, though there are also “fortified” foods that add calcium. Many people take calcium supplements to make sure that they are getting enough calcium, especially if they do not or cannot eat dairy.

Bone Broth and Lupus

Bone broth is a liquid made by boiling bones and connective tissue from cows, chicken, or fish with a bit of vinegar. It has a high concentration of collagen. Which is important for strengthening and protecting the bones, skin, hair, and joints of people. Bone broth also has some calcium, magnesium, phosphorus, iron, vitamin A, vitamin K, zinc, selenium, and manganese. Depending on how the bone broth is made and what ingredients go into it, it may have varying amounts of these nutrients. However, it’s not a bad idea for people with lupus to add bone broth to their diets.

Green Tea and Lupus

Green tea is a variety of tea where the tea is not withered or oxidized as it dries, maintaining much of the original chemical composition of the tea leaf (Camellia sinensis.) It has an active chemical, called EGCG which helps regulate the immune system, and L-theanine, which helps reduce stress. Drinking green tea is known to help with inflammation as well. Warm tea is very comforting and can help with congestion, but not everyone likes the taste of tea (or the caffeine). For people who don’t want to drink green tea, powdered green tea leaves (similarly to matcha powder,) can also be put into capsules and swallowed as a supplement. It is unknown if this has the same effects, but it is an available alternative!

Vitamin D

Vitamin D refers to the building block of a very important hormone that regulates the immune system, kidney function, nerve function, cell function, and bone health. One of the forms of Vitamin D is produced in the skin as a response to ultraviolet light (as from sunlight). But it can also be in the diet as oily fish, liver, egg yolks, and certain types of mushrooms. There are some foods that are fortified with vitamin D as well. 

Many people with lupus have a vitamin D deficiency, especially due to

• fatigue
• weather sensitivity
• photosensitivity 

that can be symptoms of lupus. And – though changing supplements or treatment plans should always be discussed with a doctor – it might not be a bad idea to take supplements or make sure that vitamin D-rich foods are present in your diet.

A Lupus Warrior’s Takeaway

The main concern with supplements is that they are not always well regulated. They can be contaminated with mis-identified herbs, heavy metals, and unknown chemicals. We also do not know much about the potential negative side effects of many supplements. Or even the true benefits of many supplements. Some supplements might also interact with lupus medications in unexpected ways. It’s important to talk to your doctor or treatment team about any major changes to your diet, including supplements.

However, for many people, their benefits, overall, outweighs the risk.

If you look all across the web, from message boards to articles, one of the top conversations around lupus you will find is people looking for natural remedies for lupus. One of the natural remedies you will come across is turmeric. While it can be tempting to try holistic remedies, it is always important to do your research and talk with your doctor first.

What is Turmeric?

Turmeric or tumeric (Curcuma longa) is a plant of the ginger family that is native to southern Asia. If you have ever had Indian, Pakistan, or Irani food, it is likely that you have tried something with turmeric powder. Most of the research around the health benefits of revolve around curcumin, a compound which constitutes 3.14% (on average) of powdered turmeric.

What Does The Research Say About Turmeric For Lupus?

According to this study of studies, Curcumin (a compound found in turmeric) has been demonstrated to be safe in six human trials and has demonstrated anti-inflammatory activity. Research specific to turmeric for lupus has been done on patients with lupus nephritis. This study of 24 people, concluded that “short-term turmeric supplementation can decrease proteinuria, hematuria, and systolic blood pressure in patients suffering from relapsing or refractory lupus nephritis.”

Overall, while there is some evidence that turmeric can help with lupus symptoms, the research is far from conclusive.

Additional Research

According to this study overview, which analyzed the impact of curcumin on autoimmune and rheumatic diseases, all but two studies measured clinical outcomes. “These two studies solely measured inflammatory markers and oxidative stress indicators. In 13 of the studies, dietary curcumin intake resulted in improvement of at least 2 clinical measures.

Furthermore, seven studies showed improvement of at least three clinical measures. Studies with positive clinical outcomes most commonly reported increased walking distance and decreased WOMAC scores. One study reported no significant improvements of pain and function, although there was a tendency towards improved scores. A total of eight studies reported laboratory findings after curcumin supplementation. Five of the eight studies reported either significantly decreased inflammatory markers or oxidative stress markers. In three studies, patients continued NSAID use in conjunction to the administered curcumin supplementation.”

4 Health Benefits of Turmeric & Curcumin

Curcumin Is a Natural Anti-Inflammatory Compound

• It is an anti-inflammatory compound, and can often match the effectiveness of certain anti-inflammatory medications and drugs.

Curcumin Boosts Brain-Derived Neurotrophic Factor, Linked to Improved Brain Function and a Lower Risk of Brain Diseases

• It can increase levels of brain-derived neurotrophic factor (BDNF), which is a type of growth hormone that functions in your brain. It can also improve memory.

Turmeric Contains Bioactive Compounds With Powerful Medicinal Properties

• Turmeric is the spice that gives curry its yellow color. It has been used in India for thousands of years as a spice and medicinal herb. Recently, studies have shown the positive impact of compounds in turmeric. These compounds are called curcuminoids, the most important of which is curcumin. Curcumin content in turmeric is roughly only 3% by weight.

Studies Show Positive Impact of Curcumin On Depression

• Depression is linked to reduced levels of BDNF and a shrinking hippocampus, a brain area with a role in learning and memory. Curcumin boosts BDNF levels, potentially reversing some of these changes. There is also some evidence that curcumin can boost the brain neurotransmitters serotonin. 

Learn more, here.

Turmeric Recipes

Golden Milk Turmeric Tea

For full recipe, click here.

Should I Try Turmeric?

Make sure to consult your doctor and lupus treatment team regarding new treatments and the use of natural remedies!

Kratom (Mytragyna speciose) is a plant native to Thailand, Malaysia, Indonesia, and Paupua New Guinea. The “leaves contain compounds that can have psychotropic (mind-altering) effects.“

Kratom is both a cooking ingredient and a part of traditional medicine. Potential health benefits include:

• anti-diharrheal
• pain reliever
• mitigator of opioid addiction

Kratom is a thick green leaf with red or white veins. These veins are typically removed before use, though they can be used as an indicator of potency. It can be chewed fresh, but is usually dried, ground, and prepared with warm water into a tea.

Kratom does have pain relief and – potentially – some mood-boosting effects (in part due to its effects on the opioid receptors). Some people use it as a substitute for prescription opioid painkillers.

Many people with chronic illnesses, including people with lupus, swear by kratom tea and claim that it has life-changing effects. However, because it is an opioid, it can lead to opioid craving, addiction, and withdrawal. It is also known to cause or exacerbate brain symptoms of lupus such as delusions and brain fog, encourage alcohol use, and lead to convulsions.

Benefits of Kratom – What Does it Do?

When it comes to clinical research, the jury is still out on the benefits of kratom.

People taking it claim it can:

• reduce pain
• suppress appetite
• provide resistance against panic attacks
• prevent diarrhea
• offset opiate withdrawal

Kratom acts like an opioid. The active alkaloid (plant chemical) in kratom is called mitragynine and it activates opioid receptors in the brain. Opioid receptors control many major biological functions including digestion and pain experience.

• At lower doses, kratom can act as a stimulant:
  • boosting mood
  • increasing energy
  • granting feelings of alertness.
• At higher doses, kratom is a sedative, causing:
  • drowsiness
  • a relaxed state
  • reducing pain

Dose can, however, be difficult to control, due to differences in quality from plant to plant, strain to strain, and method of consumption. The dose will control how long the effects last (2-5 hours depending on quantity ingested). However, kratom will generally take effect within 5-10 minutes.

The Herbal Supplement Myth

Kratom is an herbal supplement available in the United States. Herbal supplements are often considered  “healthy,” “natural,” and “safe” because they are minimally processed. However, this is often not the case. Manufactured medicines are consistently produced to meet particular chemical definitions. But, they have the stigma of lab production and being “artificial.”

Herbal supplements do have effects on the body depending on their dose. However, because there are few product requirements, the amount of the chemicals that cause those effects can vary greatly. The plants also have several active chemicals at once, which can include antioxidants, essential oils, and other alkaloids. These chemicals can interact with each other, produce conflicting effects in the body, or even trigger allergies. It can be difficult to predict how each person, with their unique bodies and healthcare needs, will react to herbal supplements.

Further unpredictability in herbal supplements comes from the plant’s growth. Many things can impact plant growth including:

• The particular strain (variety) of plant
• the environmental conditions during growth
  • weather
  • soil type
  • region
• the time of year during harvest
• the skill of the grower
• pure random chance

This variation can make dosage difficult. It creates a risk of accidental overdose or mis-dosing, particularly for kratom.

Kratom extracts can help equalize the dose, but it is less common to find and consume it in this form. Dried leaves are the typical form that a Lupus Warrior might be able to find.

Side Effects and Dangers of Kratom

Through 2011-2017, kratom may have caused approximately 1,800 calls to the poison control center in the United States. High blood pressure, seizures, and even death were usually the reason for the calls, and kratom use is linked to many other side effects.

Kratom use can cause:

• Liver damage
• Kidney damage (and urine changes)
• Muscle pains and cramps
• Weight Loss
• Dry Mouth
• Chills, nausea, and vomiting (common symptoms of opiate withdrawal)
• Dizziness
• Drowsiness
• Hallucinations
• Delusions
• Depression and Anxiety
• Seizures 
• Breathing difficulty

And, during an overdose, coma and death. Kratom shares many of these side effects with opiate use and withdrawal from opiate addiction. Likely pointing to its activation of the opioid receptors in the brain as the cause. Tapering and withdrawal treatments for opioid addiction – such as the medications naloxone (Narcan) and Buprenorphine (buprenex) can help with the cravings and the side effects of kratom.

It can also react unpredictably with other medications or other supplements.

Kratom and Salmonella

In 2018, the FDA investigated salmonella outbreaks related to kratom that affected more than 130 people in 38 states. Contaminants existed in many kratom-containing supplements available in the market. The plant itself gets contaminated, similar to spinach and lettuce, and the suppliers may have been using similar sources.

Salmonella is a bacterium that causes severe and sometimes deadly infections when consumed, and can pass from contaminated products to other surfaces that they touch. Salmonella can survive on the outside and inside of plants that come into contact with the feces of infected animals (as fertilizer) or contaminated water (as irrigation.) They might also end up sprayed onto the plants through nozzles that deliver pesticides to the plants. When consumed, the bacteria in and on the plant can infect a new host, including a human.

The symptoms of salmonella infection include diarrhea, fever, abdominal cramps. Typically, people recover without treatment after 4-7 days. But it can also be severe and require hospitalization – especially in immune system compromised individuals. It can even kill. People with lupus should try to avoid putting themselves at risk for salmonella.

Because salmonella survives on the inside and outside of the plant, even thorough washing does not lessen the risks. Cooking the plant reduces the risks somewhat, but the disease can be deadly, making it best to avoid potentially contaminated foods. Plants have no external signs of salmonella contamination.

Should People with Lupus Take Kratom?

Kratom is not FDA approved and the agency restricted its use and sale in 2018. However, it is legal in the U.S. overall. Some states have banned it while others may restrict it. There is a debate going about rating it a “schedule 1” drug, at the same level as heroin, marijuana, LSD, and ecstasy:

“Schedule I drugs, substances, or chemicals are defined as drugs with no currently accepted medical use and a high potential for abuse.”

 The FDA considers kratom to have “no approved therapeutic uses” as of 2018, and the general consensus is that the risks outweigh the benefits and that it will not pass FDA approval.

Although people with lupus are not recommended to try kratom, if you choose to try it out, be careful with where you buy it or who you source it from. Make sure that you use a well-regarded supplier. Due to the nature of the herb, growth practices vary and may use different levels of chemicals and result in various levels of quality. Online reviews can help you find a suitable source if you choose to go this route. 

Do not try kratom if it is banned in your state or country. Do not take kratom with other substances or medications – the effects can be unpredictable. And always speak about new additions to your health plan with your lupus treatment team.