Systemic Lupus Erythematosus (SLE) is an autoimmune disease that affects every organ system in the body. Regular exercise can help with many of the symptoms of lupus, especially where it affects the cardiovascular system (including the heart and brain) and mental health, as well as being good for the overall health of the body. You can read more about the cardiovascular risks of lupus here. 

However, for many people with lupus, it can be difficult to get enough exercise. Lupus symptoms like joint pain and fatigue play a part, but some people with lupus don’t feel that they have any time or energy to spare for exercise. You can read more about fatigue and lupus here. 

Between work, childcare, and other obligations, adding in a workout routine can seem daunting. Fortunately, there are options for people with lupus that are easier and more accessible than going to a gym. Short, simple home exercises and stretches can be done in between or a part of other activities, and once they are used to exercising regularly, many people with lupus report that they have less pain, more energy, and better mood as a result. 

For some people with lupus, the ancient meditative exercise practice of Yoga might be ideal.

What is Yoga?

Yoga is an ancient meditation technique that has been practiced for thousands of years. It’s a major part of Hindu philosophy, and it is a way to “unite” the body and mind by controlling the movement of the body and focusing the senses. Modern Yoga focuses on only one part of the philosophy of yoga, the holding of certain postures or poses, known as Asanas. While only a part of the whole philosophy of yoga, regularly practicing these postures carries many benefits including building core strength, strengthening other muscle groups, improving posture, stretching muscles and tendons, strengthening the cardiovascular system through stamina and breathing exercises, reducing anxiety, and improving focus. 

However, it should be noted that yoga as a whole is much more than just asanas. It’s an ancient tradition of meditation, spiritual practice, and enlightenment, and while finding information on practicing the postures and exercises is easy to find these days, the other parts of traditional yoga can be difficult to come by. 

In the Western world, Yoga (typically Hatha-style Yoga) is often taught in classes with an instructor, sometimes indoors or outdoors, with exercise mats and nonrestrictive clothing. It involves gentle exercise movements, breathing exercises, and the holding of poses which is gentle on the joints while still providing exercise benefits. The classes can be paid (and vary in price) or might be freely available through school or community center programs. These classes are typically in person, but since 2020, they can sometimes be hybrid or remote. There are also videos that can be purchased that go through a series of poses called a routine, and other videos can be found online, which allows people to practice yoga in their home on their own, on their own time and schedule. It’s generally considered to be best to have a teacher in a class or private setting, however, since they can make sure that you are doing the poses correctly. Like with exercise, incorrect form can put extra stress on the body, leading to pain and even serious health conditions. A teacher or trainer can also help adapt routines to your physical capabilities. 

Yoga as an exercise can be done on its own or with music, scents, and other additions. It can even be done alongside prayer, which does connect it back to its spiritual roots. These are mostly personal preferences – any addition or accommodation that helps you to regularly practice yoga will help you make the most of the benefits.

Meditation, Stress, and Lupus

Yoga is considered a type of meditation, and meditation is well-known to have benefits for people with lupus. The mindfulness technique of meditation has been proven to reduce depression, anxiety, and stress by giving the brain – and body – space to heal from the burdens of everyday life with a chronic disease. 

Stress relief cannot be understated – mental stress affects the body, too. When stressed, the body naturally ramps up the immune system, causing inflammation. While this is beneficial in a situation such as an injury or sickness, this stress response can trigger the symptoms of autoimmune disorders like lupus. The symptoms of lupus cause further stress, and the damage from lupus increases over time. Relieving stress helps to break the cycle and has been shown to reduce the symptoms of lupus. Massage and art therapy can help relieve stress for people with lupus, but meditation has the advantage of being easily done on one’s own at home. You can read more about massage and lupus here. 

Meditation is generally done while sitting, and uses breathing, mantras, and focus techniques to create a calm, even state of mind. While some people use tools like essential oils or incense or music, many forms of meditation need nothing more than a few minutes of a person’s time. Meditation relieves stress, clears the mind, and also allows the body to rest, which helps with energy and alertness. It can also help with insomnia when done before bed. Both meditation practice and better sleep are associated with lower levels of anxiety. You can read more about lupus and anxiety here. 

There is some evidence that people’s perception of pain is also reduced by meditation – the source of the chronic pain might still be there, but they aren’t as affected by it. 

While it does take some time out of the day, meditation can be done as part of a morning or evening routine, on commutes, or during breaks. The main disadvantage is that it is a sedentary practice – you are sitting and not getting much exercise – but it still has many benefits.

Mindfulness is the best known and studied meditation, but there are many different types. The internet is full of videos and meditation aids, so people with lupus can easily find a type of meditation that is right for them. And, for some people, yoga, which combines physical activity and stretches with meditation techniques, may be exactly what they are looking for.

What does Yoga Do for People with Lupus?

Yoga provides many of the benefits of exercise to people with lupus:

• Stretches muscles and tendons
• Increases blood flow and strengthens the heart and lungs 
• Helps regulate the sleep-wake cycle (also known as the circadian rhythm,) metabolism, and the immune system
• and produces endorphins, which are natural mood-boosters and painkillers. You can read more about how physical activity affects mood here. 

Yoga also calms the mind and creates a routine, which also is beneficial for people with lupus. When yoga is a part of a class, either in person or online, it also helps alleviate the social isolation that many people with lupus endure, improving mental health. 

However, the benefits of yoga go beyond stress relief and stretching. In a 2018 review in the Journal of Behavioral Medicine, researchers noted that, in small randomized controlled trials, it appeared to reduce pro-inflammatory immune system cells that are often found in people with lupus such as interleukins (IL-6 and IL-1 beta) and tumor necrosis factor (TNF-Alpha). An updated review in 2021 supported this reduction in inflammation, but noted that the trials were small and not standardized. The yoga programs in the studies varied in length and frequency (8-12 week programs, weekly or daily, 30-90 minutes of class time,) and would have benefited from more standardization. However, despite this, yoga was consistently seen to have benefits for people with autoimmune diseases when done regularly. As alternative medicine becomes more accepted in the medical community, more solid research studies will be available.

When done correctly, there are few downsides to yoga. Most of the problems come about when people do the poses improperly or do poses that their body is not ready for. Going out to classes can expose people with lupus to infection, pollutants, and sunlight. Sunlight sensitive and immunosuppressed people should be careful with this, as with any outing. Yoga facilities that use essential oils as a part of their practice might be irritating for some people with lupus, and regular class attendance can be difficult with the unpredictability of lupus flares. Fortunately, some classes are now hybrid and there are many online resources that can help with performing yoga regularly at home. It’s a matter of personal preference and what is available, and each individual person with lupus will have different preferences.

Does the Style of Yoga Matter?

There are many different styles of yoga, just as there are many different styles of meditation. The teachers and practitioners of each one will claim that their style is the best – however, according to a 2016 review, different yoga styles did not make a large difference. All styles studied provided roughly the same benefits. The key is that the teacher must be qualified and competent. Like any exercise, yoga can be done improperly, and potentially cause harm. 

The takeaway here is: Don’t worry about the style of yoga. Instead make sure that you find a good teacher that is available to you, either live or virtual. The style or method of teaching is important, but that can be left to personal preference – positive experiences maximize the benefits that you can get from yoga and encourage regular practice. The Lupus Foundation of America recommends restorative yoga, Iyengar yoga, and hatha yoga for people with lupus and advises against hot yoga, Bikram yoga, vinyasa yoga, or ashtanga yoga due to the physical demands. Again, though, it is about personal preference.  

A Lupus Warrior’s Takeaway

You are probably sick of people telling you to “eat healthier,” “get more exercise,” or “stop stressing.” You already know that. You’ve probably tried a lot of things – finding the right combination of diet, routines, and techniques for you is, unfortunately, a long journey for many people with chronic illnesses. You can read more about the challenges of lupus here. 

Yoga is a great, easily accessible technique that provides many benefits, and it might be exactly what you need! Or it might not – there are many other techniques out there to try. You know your body best and you will find what works best for you. Keep trying. It will be worth the search.

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.

Exercise keeps the body healthy in a multitude of ways. Some exercises burn energy, encouraging weight loss. You can read more about weight and lupus, here. However, it also:

• Loosens joints, helping them work more effectively and reducing pain.
• Stretches muscles and tendons, making movement easier and encouraging healing.
• Increases blood flow and the activity of the heart and lungs, strengthening them against cardiovascular disease and increasing stamina.
• Encourages the body to produce endorphins, improving mood.
• Helps the body regulate its sleep cycle, encouraging better sleep.
• Tunes the signals that signal “hunger” to the brain, helping with metabolism and weight problems.
• Creates a routine, which has many benefits for productivity and mental health.

You can read more about the benefits of exercise, here, and people’s experiences with staying physically and mentally healthy.

However, people with lupus have different bodies, since their lupus manifests in different ways – some exercises may be doable, and others may be difficult. Fatigue can make keeping up a workout routine challenging, and figuring out what exercises to do at all involves sifting through an endless mess of recommendations. It’s overwhelming, and easy to do it wrong.

So, let’s get back to the basics.

 

The Basics of Exercising with Lupus

First, it is important to remember is that, with exercise, you aren’t aiming for a “beach body.” You are aiming for better health and reduced pain. You are aiming for something you can do, regularly, to make your life a little easier. Daily light exercise is ideal.

If daily exercise sounds intimidating, though, don’t worry – it’s not actually so scary! This is because one of the biggest key points to exercise is movement – any movement. Whether that is walking around the house or the block, doing household chores that require movement (vacuuming, for example) or simply repeated lifting of arms and legs while seated, movement gets the blood flowing and the muscles moving. Leg lifts, arm lifts, and sit-to-stands are all valid exercises.

While going for a run and having a full workout routine does have benefits, even doing a little bit, every so often throughout the day, can work wonders. These light exercises also helps to build up strength and flexibility, allowing you to handle, potentially, more intensive exercises.

However, the second key point to exercise to keep in mind is listening to your body. While pushing yourself a little is fine and will make you stronger, pushing too much can hurt you. If an exercise hurts too much, if you can’t do it, then don’t do it – do something lower impact instead. As long as you are doing something, you get the benefits.

Thirdly, though, you need to do the exercise right. Doing exercises incorrectly can do more harm than good. Though this is more of an issue with more intensive exercises, building good habits with lighter exercises can reduce pain and strain on your joints, and ensure that the benefits outweigh the downsides of exercise. While the “right way” differs from exercise to exercise, the most common mistake that many people make is not keeping their backs straight. If this is difficult for you to do, an exercise that works on the back or ‘core’ (the muscles of the stomach, torso, and abdomen,) will be very important to you.

Of course, exercising your core and back will also make just about everything else easier, from sitting to standing to walking to lifting. It is a very important part of the body.

So, that’s where we’ll start.

Safety and Preparation

Is it safe to exercise with lupus?

This is a common and viable question asked by many Lupus Warriors. The answer is yes! However, it is extremely important to consult your doctor or treatment team to discuss exercise for you and your body. Everyone’s lupus hits them in different ways, and each person with lupus has different limitations.

Preparing Properly for Exercise

Proper preparation is undeniably important, especially for people with lupus. Making sure your body is correctly warmed up and ready to exercise can help limit the likelihood of injury. Additionally, asking your treatment team for tips regarding preparation can go a long way. Whether you have a secondary condition such as arthritis, or your muscles just need a little more time to get going, proper activation is crucial! Light stretching, walking, or movements can help you activate.

Core Exercises for People with Lupus

The core, the muscles of the torso, abdomen, help keep our posture straight and all of our limbs in the most efficient and least stressful positions for movement. When they are strengthened, basic movements become less tiring and keeping those muscles in shape can open a lot of doors for people with lupus.

One of the classic low-impact exercises used to strengthen the core is the Bird Dog:

Lie down on your stomach on the floor or on a bed. Raise yourself from the ground on all fours (you might want additional padding under your knees and elbows.) Making sure to keep your back and abdomen straight, extend one of your arms forward and, on the opposite side, extend your leg back. Reach slightly, pushing away from the ground – this will keep you extended and stretch out your neck slightly. Hold for 5-10 seconds and repeat 2-3 times. You can see a video here that goes through the whole exercise.

Bridging is another exercise that you can use to strengthen the core:

Sit or lie face up on a hard floor or floor like surface (such as thin carpet.) Your feet and knees should be hip width apart. Press your shoulders into the floor and tighten your stomach muscles. Lift your bottom off of the floor and hold for 3-5 seconds. Repeat 2-3 times. You can see a video on how to do a Bridge here. A longer hold or a wider foot position can make your bridge more intense – but it is recommended to start light and work up to it.

Planks and Sit Ups are also great for the core, but may be too intense or require too much bending for many people. If you feel like you can handle these exercises or your physiotherapist recommends them, do a few. Don’t worry if you can’t, though – even light crunches (a very partial sit up) may be helpful, and in the end, you are building and maintaining your strength. That’s all you need.

Other Exercises for People with Lupus

It is important for people with lupus to exercise the full range of muscles in their body, however – not just their core. Low-pain movement involves the whole body, after all. The exercises found in T’ai chi and yoga are a good place to draw from, as many of them are low-impact and low-intensity, and there are a variety of exercises that can be done standing, sitting, or lying down. These exercises are also typically done without weights or special equipment – just your own body or, at most, a chair or floor.

This makes them ideal for a home workout – as long as you rest frequently and mind your own limits.

Lady X-Size demonstrated several other easy, no-equipment exercises for people with lupus in her video for Lupus UK. You can find the video here, and we describe five good exercises for beginners below:

1. Sit to Stand: Sit in a chair, preferably a shallow, firm chair (a deeper chair will lead to a more
   difficult exercise, so be careful.) Sit up straight, tensing your stomach muscles and keeping your
   back straight. Place your feet hip width apart just beneath your knees. When you are ready, hold
   out your hands, shift your weight to your feet, and push yourself up into a standing position.
   Stand for a few seconds, and then lower yourself back into a seating position slowly, keeping
   your back straight. Repeat, 3-5 times.
2. Leg Extension: While seated, start with your feet flat, stomach tensed, and back straight. Your
   knees should be relaxed, but try to have the knees right above your feet. Extend one leg, brace
   your abs, and hold your leg up. Hold it for a few seconds, then bring it back down. Repeat this 5-
   10 times and then do the same thing on the other side.
3. Shoulder Press: The shoulder press can be done seated or standing. Brace your stomach,
   straighten your back, and lift both of your arms so that they are bent at the elbow and your
   elbow is on a level with your shoulders. Push up your arms above your head, as if lifting weights
   (though weights are completely optional,) and then hold for a second. Return to the level of
   your shoulders – repeat this 5-10 times.
4. Wall Push Up: The wall push up is similar to a normal push up, but it is less intense. Stand
   against a wall and support yourself against it with your hands. The further your feet are from the
   wall, the more intense your push up will be – a good start is a foot-length away from the wall,
   but do whatever feels most comfortable for you. Aim for 5-10 repetitions, but do more if you
   feel up to it.
5. Back Tilt: This is a lying down exercise that can be done on soft surfaces such as a carpet or bed.
   Keep knees folded and up, press back into the surface, and keep your shoulders straight. From
   this position, tilt your legs to the side while keeping your knees together. Tilt to the other side.
   Try to have your knees touch the ground with each tilt, but go as far as you can. Tilt to both
   sides and repeat 5-10 times.

Walks and Exercising for Lupus

If these exercises are intimidating, think about taking a walk. Walks are a great aerobic exercise, if you can do them.

How to properly take a walk (to get the most benefit out of your walk:)

1. Walk at a normal pace or one that is comfortable for you, depending on the terrain.
2. Keep your back straight and try to maintain this posture through your walk.
3. Try to walk for at least 30 minutes, if you can.
4. Rest as needed. Stretch before and after for the best results – you will feel the difference if you do.

If you are not in a safe neighborhood or an otherwise walking-friendly place, walking around your home will do. An exercise bike will also work, but if you don’t have a bike and need something extra, walking up and down stairs may be enough.

However, if you can, going outside will be doubly rewarding – not only will you be exercising your body, you will also be getting fresh air and sunlight, which can boost mood and also help your body produce vitamin D and strength bones. Just take it at a pace that works for you, fast or slow – just keep moving and keep your back straight. Be sure to use sun protection to prevent skin damage from ultraviolet rays and bring water to keep you hydrated. Depending on your body, it is also a good idea to eat something beforehand to keep your energy levels up.

If you have a dog, walking them also lets you share exercise time with a companion, and will give you the satisfaction of getting that necessary chore done. Read more about the wonderful benefits of pets and lupus, here. Walking with family members is a great, healthy bonding experience, too.

A Few Last Points About Exercising with Lupus

For many people with lupus, their New Years resolutions involve:

“Exercise, eat healthy, listen to my body, and stay stress free.”

Exercise is a common New Years’ resolution for many people, and also, often, the first to go. However, that is because people generally aim too high – for losing a certain amount of pounds in x months, or getting a super fit body with a 6-back of abs. Their body is not ready for it. With exercise, you aim low to start, and you stay constant – that is how you get the most out of it and build both the habits and strength that you need. Exercising is so vital for lupus warriors, and so important to keep up regularly, that you should make it as easy to do for yourself as you can.

First, do exactly that – aim for every day. Whatever you have to do to make it happen that day, do it – whether that’s only doing half of your usual repetitions, doing a slightly easier version of the exercise than you are used to doing. Or, even, doing a different exercise entirely that is more comfortable. You might see this, initially, as a “step back,” but that isn’t the case.

Exercising with lupus is something you will have to take one day at a time. Even if you only do a little exercise, even if it doesn’t feel like enough, something is more than nothing, and you are getting benefits. Plus, you are keeping your muscles primed so that you will be able to return to your normal routine much more seamlessly than otherwise.

If you experience pain or soreness after exercise, take frequent breaks during the exercise. Afterwards, use heat to ease sore joints – moist heat, such as showers, work best. Try to avoid injury as best you can – if injured, rest, apply cold to the injury, and elevate the injury if possible (RICE.) Doing your exercises properly will help prevent you from being injured – listen to your body, and don’t go too far.

Embrace technology to help you exercise. Distracting yourself with videos helps take the mind off of the discomfort of exercise routine. Put on music while doing household chores, and do a little dance here and there to get the blood pumping. Use games like Justdance and Wiifit to turn exercise into a social, fun activity – something you can do with the whole family. Find a strategy that works for you and have fun with your exercise!

Keep your exercising up, and do it regularly, though – and you will see benefits. You will feel better.

Finally, though, forgive yourself if you slip a little. You are only human.

Keeping track of what is and isn’t working is a crucial part of treating lupus. But, simply remembering symptoms isn’t enough. That’s where taking notes comes in!

Many people with lupus find keeping track of their symptoms, emotional state, and life in general to be therapeutic. In a way, recordkeeping is a sort of productive journaling. Writing therapy itself can help calm the mind, reduce stress, and – as a result – reduce the symptoms of lupus.

However, keeping a record has more practical applications: By tracking your symptoms, you can find patterns, determine flare triggers, and have something definite to bring to your doctor and treatment team. Recordkeeping can help you get diagnosed, track symptoms, isolate stressors, and find the best medications and routines to take care of your lupus.

What should you be tracking:

• Date and Time
  • The weather might also be a good thing to track, since it can have a major effect on symptoms.
• What Symptoms you are experiencing
• How intense your symptoms are at that moment
  • Bonus Tip: Use consistent measurements like Mild / Moderate / Severe, or a 1-10 scale. This will make it easier to see the patterns later!
• The name, dose, and strength of any medications taken that day
• What was eaten that day
• The amount of exercise activity that day

Women should also track their periods, as the hormone fluctuations can be linked to changes in their lupus symptoms.

Recordkeeping is a powerful tool for predicting flares and tracking symptoms, and everyone does it differently. However, there are tips that can be helpful for everyone – and pitfalls that everyone should look out for.

Tip 1: Keep a Routine!

Keeping records is easier if you do it regularly, and the best method for staying regular is to incorporate recording your feelings, thoughts, and symptoms into the rest of your life. Make recordkeeping a part of waking up, taking medications, morning coffee, or as a part of your post-exercise rest, part of dinner, or part of going to bed – whatever works for you. In either case, you should try to make it a consistent part of your life.

Making recordkeeping a part of your daily routine means that the information you record stays consistent, but the biggest benefit of regular recordkeeping is some much-needed structure for the day. A little bit of structure can make a world of difference for your mental health!

 

Tip 2: Be as Detailed as Possible!

The more detail you put into your records about your lupus experience, the more detail you can bring to your treatment team later.

Where are you hurting? How are you hurting? What were you able to do? What did you eat when you had a flare? How was the weather? Did you take your medications? Did you do anything, usual or unusual, today? Detail can make the difference for being diagnosed with lupus, and can help doctors figure out your ideal treatment regimen.

 

Tip 3: Don’t be Afraid to Try Apps!

There are many apps out there for recording chronic disease symptoms. Some are specific for lupus, some are for chronic diseases in general, but even a fitness app can help keep track of your medical needs. Apps have an advantage in that they can be very easy to use, just like social media, and many will let you see your progress over time at a glance, easily comparing your results over the course of weeks. Apps can collect data for algorithms and AI, which can aid in recording, calculating measurements, and even finding relevant information tailored to individual people with lupus.

Many apps have forms that can help narrow down what you want to keep track of, and some way to communicate or compare your results with other people using the app. This can make you feel less alone, give you perspective on your own symptoms, and help you find new ways to manage your symptoms.

Pitfall 1: Don’t Overdo it!

People with lupus often experience fatigue, which can make it difficult to keep to a routine or complete what, to others, are basic tasks. At the same time, there are hundreds of symptoms of lupus, and you might want to record all of them. Recording all of your symptoms may be therapeutic, but it can also be exhausting and difficult, and the more difficult it is to keep records, the less frequently you will keep the records.

If you fall off the recordkeeping and leave it behind after a few tries, then the records won’t be very useful – but also, who can blame you? Our advice is to not overdo it. Pace Yourself! Symptoms? Flares? Food? Mood? Figure out a minimum of what you want to record, and don’t push yourself to do more detail than that. You don’t need to be perfect!

 

Pitfall 2: Don’t Force it!

Don’t be limited to just writing! If journal entries or bullet lists aren’t your thing, they don’t have to be! Try dictation, forms to check off, or even color-code days of the week depending on how you feel. As long as you are tracking what you feel you need to be tracking, you can use whatever makes you feel better. If putting stickers on a chart records the information, doesn’t sap your energy, and makes you feel better, then it will be easier to keep up and incorporate into an official routine. Using a form of some sort can be a miracle. Use a method you Enjoy!

 

Pitfall 3: Don’t Rely on One Strategy!

Apps and online note-taking programs like Google Docs and Evernote are great! They save you time and effort, automatically save your files, and can even be organized. However, the servers can crash, you can lose your password, and the services might even go out of business – and with it, your notes are gone!

Of course, keeping notes on your computer could be lost if you lost your computer or get corrupted files, and a physical notebook can be lost or damaged. Use backups! Use multiple methods of note taking and keep backups – a great task to delegate to a friend! If you have a trigger list or a panic list, definitely make sure that is always available, no matter what.

Ways to Keep Records with Lupus

Even just among the apps, there are hundreds of options for recording your lupus. The Discerning You reviewed 13 apps for recording chronic illness. Of those 13 apps, they rate Manage My Pain, Stop.Breath.Think, Pathways, and Me.Meditation are rated the highest. Notably, they all have meditation or stress-relieving aspects to them, so they cover the “art therapy” and “Journaling” part of recordkeeping, which is definitely something to consider!

Our LupusCorner app (Android and iOS) enables forum chatting, questionnaires, and an easy-to-use symptom recording form.

Excel spreadsheets can be a great way to keep track of your lupus, and, by using filters (under the Data tab in the Microsoft program, very useful along with Freeze Panes) you can easily see whether certain conditions (such as weather or food) match up to certain symptoms. Of course, you can also use a simple word document, google docs, or, even, a physical journal or diary. For physical journals, it might be a good idea to use colorful tabs to mark days or entries with particularly intense (or peaceful) symptoms.

Depression and problems with keeping up physical activity are issues that many people with lupus face. Unfortunately, many lupus symptoms can make both depression and inactivity worse!

Lupus Warriors often have light sensitivities, fatigue, and pain, which prevent them from being active. You can read more about lupus and fatigue here. Pain, fatigue, isolation, medication side effects, and a lack of support from family members or doctors can lead to depression. You can read more about depression and lupus here.

Depression and inactivity (also known as a sedentary lifestyle) do not occur in a vacuum. In fact, depression is well-known to affect physical activity. On days where it’s hard to get out of bed, working out is can be a tall order. But, being physically active can help battle symptoms of depression. 

According to several studies on people with SLE, a lack of physical activity is a big indicator that depression will develop down the line within two years. If someone no longer finds joy in an activity, it can be difficult to stay motivated. This leads to a frustrating feedback loop that can leave people with lupus stuck in a bad situation.

The Data on Physical Activity and Depression in Lupus

Depression is very common for people with lupus. Depending on the study and how they define depression, the rates of depression can range from 50% to 93%. When people with lupus have a low level of physical activity, they are three times more likely to report that they have depression down the line – even years later.

Whether low physical activity and a sedentary lifestyle is a cause of depression, a result or indicator of depression, or both is unclear. However, the link between physical activity and depression was stronger than with income level, race, and symptom severity.

Other symptoms of lupus, of course, contribute to depression. In a study, 72 people with lupus were given tests for fatigue, depression, anxiety, and symptom intensity. The worse the physical symptoms were, the worse the depression was.

Physical Activity Benefits for Lupus

60% of people with lupus are not getting enough exercise, according to the standards of the WHO. You can learn more about the organization here. Regular exercise is well-known to help alleviate symptoms of lupus and symptoms of depression. Exercises can be classified into

• Aerobic exercises, which workout the circulatory system, including the heart and lungs.
• Strengthening, which workout the skeletal system and improve strength and stamina.
• Stretching, which loosen the tendons and improve flexibility.

There are many benefits to exercising, including the release of chemicals called endorphins that both lighten mood and reduce pain. Endorphins also appear to improve immune system regulation, so exercise might even help hold back flares.

A Lupus Warrior’s Takeaway

What Are Pain Medications?

Pain medications are medicines that relieve aches and pains. Each one has its strengths and side effects, and certain medications may be better at relieving some aches and pains over others. Responses to pain medication vary from person to person.

For many people, over the counter medications such as acetaminophen (Tylenol) and nonsteroidal anti-inflammatory drugs (NSAIDs) are very effective. They work well for symptoms including:

• achy joints
• fevers
• headaches
• muscle soreness

 

Nearly 80% of people with lupus use these medications to control their pain. Over-the-counter meds do not require a prescription and they have a decreased risk of dependence of addiction. However, they are not without side effects, which can be serious. You can read more about NSAID medications here.

The key to NSAIDs and acetaminophen is that they operate on aspects of the pain response that indirectly affect it. Primarily, they impact inflammation, blood flow, clotting and swelling.

 

Narcotic Pain Medications

In contrast to these over-the-counter options, powerful pain medications change how pain is detected by the body. These pain medications, known as “narcotic” pain medications, replace or interfere with receptors known as “opioid” receptors in the brain and body. This blocks the feeling of pain. These medications are very powerful and effective and are very good at relieving pain in the short term.

But, in the long term opioids are notorious for leading to dependence and addiction. Even when not abused, the body develops a tolerance to these medications. An increased tolerance means that higher doses are required to produce the same pain-relieving effect.

Narcotic pain medications include:

• Codeine
• Fentanyl
• Hydrocodone
• Hydromorphone
• Meperidine
• Morphine
• Oxycodone
• Tramadol

Although risky, these medications are often used in the short term (such as after surgery) for pain relief.

Opioids are a relatively common treatment for lupus. About 1/3 of people with lupus use opioids to manage pain according to a 2019 study. However, there is limited research into the value of opioids to provide relief for people with lupus or other rheumatic diseases. 

Side Effects and Risks of Painkillers

Aside from dependence, tolerance, and a risk of addiction, narcotic painkillers and opioids have many side effects:

Drowsiness and impaired judgment: Opioids cause intoxication, as does withdrawal from opioids. This includes impaired or fogged thoughts, poor reaction time, and even hallucinations. Alcohol can make this worse, and people on narcotic painkillers should not drive or operate heavy machinery.

 

Gastrointestinal Distress: The opioid receptors are important to the regulation of the digestive system as well as for pain. And, opioid-based narcotic medications can interfere with the stomach and intestines. This can result in nausea, vomiting, and constipation. Additional fiber can help with these side effects.

 

Insomnia: While trouble sleeping and staying asleep is more often a symptom of withdrawing from the medication, opioid medications themselves can interfere with the sleep cycle in unpredictable ways.

 

Mood Changes: While the mood effects are different from person to person, restlessness, mood swings, anxiety, and depression are all potential side effects of opioid use and withdrawal.

 

For people using these medications, the pain relief is considered to be worth the side effects. Or, the course of the medication is intended to be too short to be an issue. However, even short courses of painkillers, for example, to help a patient recover from a major surgery, carry risks.

Tolerance

The best-known risk of painkillers is the risk of tolerance. As the patient’s body is put into constant contact with opioids, the body seeks to return to a balanced state. It senses that there is more opioids in its system than usual, and creates more receptors. The patient’s ability to perceive pain becomes more sensitive, and the medication’s ability to block pain becomes less effective. Over time, a greater and greater dose is required to achieve the same level of pain relief.

 

Addiction

Addiction occurs as a result of tolerance. More medication is needed to achieve the same effect. At the same time, the opioids affect mood positively when they are in the system. When the body builds a tolerance, it starts to rely on the extra opioids from the medication to regulate mood. The body expects the drug. When it is not present, a person experiences:

• pain far more intensely
• decreased ability to manage and overcome pain
• Low, dark moods

This dependence on the medication becomes a desperation to take more opioids just to reach a basic and tolerable level of pain and a decent mood. Taking the drug is required to feel normal. As a patient’s prescription or available funds run low, a person may turn to opioid alternatives like heroin.

 

Overdose

Opioid overdose is a slowing and stopping of bodily functions and it can be fatal. About 18 women die every day of a prescription painkiller overdose, according to the CDC. Overdosing on opioids is much more common when it happens as a result of an addiction.

The response to opioid overdose is improving. For example, Narcan is able to rapidly reverse an overdose and save lives. It does so by being an opioid agonist. In the aftermath of the overdose and Narcan delivery, people often experience debilitating withdrawal symptoms.

Because of these risks, doctors these days are very careful about prescribing narcotic painkillers.

Looking to learn more about the opioid epidemic? Check out the data and support services available through the NIH.

Problems with Getting Painkillers

For those who need these painkillers – whose pain does not respond to other medications – the risks of these medications can add hurdles to access. Plus, these risks and the opioid crisis have added a stigma to the use of the medications that is often unwarranted. Many people with invisible pain-related diseases find themselves judged as “addicts” and “drug seekers.”

Although they are still given to people with lupus who end up in the emergency department, it can be a challenge to get a prescription through other avenues. This affects the mental health of people with lupus. It may feel like you have to deal with the stigma of using these painkillers plus the underlying pain.

 

Alternatives to Painkillers

Non-medicinal methods of reducing pain have gained traction due to the opioid epidemic. Many Lupus Warriors may find these alternatives useful, particularly if they are weaning off of opioids.

 

Placebos

A “placebo” is a term for when a patient is given a substance that they think will work like a medication. They are “tricked” into believing they are being given a medication, sometimes even given a pill, an injection, or an IV with a non-active substance such as sugar or saline.

Because they expect a result (or are at least aware that something is being done to help them,) a patient’s body actually releases chemicals and sets off neurons and body processes that actually causes that result to occur! We are still discovering how powerful the placebo effect can be. This is why many new medications and treatments are tested against a placebo, to ensure that the treatment is actually having a positive effect.

There has been research into using placebos as a form of reduction of opioid dose. Essentially, the patient is given a regular dose of opioids. In between these doses, however, they are given otherwise identical doses of a “fake” painkiller.

The practice is described as “dose extension,” because a single dose is administered over a longer period of time. The body has more time to recover from the influx of medication, so there is a lower chance of dependence and tolerance. Studies on this technique are promising, although it is noted that the side effects can be caused by placebo, too!

Mindfulness

Following the theme of mind-over-body, meditation (mindfulness, transcendental meditation, and other forms) can be very helpful for people with lupus. For one, meditation reduces stress, a factor in lupus inflammation. Also, it also helps decrease the perception of pain.

Research has shown that meditation improves the ability of people to live independently, increases focus, and manages depression and anxiety. There are many different methods of meditation and meditative practices. Look for a style that works for you.

 

Massage and Acupuncture

Alternative medicine can have real effects on pain and blood flow. Massage and acupuncture can provide pain relief via less-expensive procedures. (Note: Your health insurance may cover alternative treatment options.) They also provide another practitioner to listen to you and provide support.

Though recent studies have shown some therapeutic benefits, they may be working mainly through the placebo effect. Additional research is still needed to fully understand the benefit these treatments can provide. You can read more about acupuncture here.

Supplements and homeopathy are often less effective and can potentially be dangerous. If you are looking for alternate pain relief, massages such as reflexology are a little more scientifically supported.

 

Exercise

Exercising is great for people with lupus, and it releases natural opioids called endorphins. These opioids are not addictive, but do create a feeling of well-being and a reduction of pain. While exercise can be difficult for people with lupus due to pain, the benefits are huge overall. Read on for some good, low-impact exercises and stretches for people with lupus.

You can read more about strategies for Lupus Warriors to relieve pain, here.

Obesity, BMI, & Lupus

Obesity is becoming more common in the United States, with 1 in 3 American adults reaching the BMI range. A study published in 2011 looked into the role of obesity on women with lupus.

The researchers conducted interviews with 716 women with systemic lupus erythematosus. Data were gathered from interviews and surveys of functioning.

For this study, two BMI thresholds were considered:

• 27.8% of participants were over 30 kg/m^2
• 40.6% of participants were over 26.8 kg/m^2

For both groups, baseline function was far worse for the obese cohorts than for the non-obese cohorts. Depending on the measure, the obese cohort experienced a 20-33% drop off in functioning.

After 4 years, follow-up interviews and surveys were conducted with the participants. Again, both obese cohorts had decreased functioning and had declined statistically.

These results show that even being overweight, but not quite obese, adds challenges and decreases function for women with lupus. This study suggests that different thresholds may be necessary for evaluating BMI for people with lupus.

Other measures of obesity and the impact on lupus

New research presented at the September 2017 annual meeting of the American College of Rheumatology looked into specific patient reported outcomes (PROs) effected by being obese.

The BMI threshold was >= 30 mg/kg^2. Fat Mass Index (FMI) was also used at a threshold of >= 13 mg/kg^2.

Four PROs were used:

1. Disease activity
   • Systemic Lupus Activity Questionnaires (SLAQ)
2. Depressive symptoms
   • Center for Epidemiologic Studies Depression Scale (CES-D)
3. Pain
   • Short Form 36 Health Survey (SF-36) Pain Subscale
4. Fatigue
   • SF-36 Vitality Subscale

In total, there were 148 participants. Average age was 48 years old (+/- 12 years). 65% of participants were white; 14% Asian; 13% African-American.

32% of participants met the threshold for obesity via FMI, and 30% of participants were obese as measured by BMI.

The researchers found that all 4 patient reported outcomes were negatively impacted by being obese. Obesity was associated with increased patient reports of disease activity. And, being obese was associated with increased depression, fatigue, and pain.

The authors of the research noted that battling weight may be a “modifiable target for improving patient outcomes” for people battling lupus.

One strategy is to work to stay active while staying safe. The National Institutes of Health have shared strategies for working out if you are overweight or obese.

Also, it is important to bring up any changes in your activity with your lupus treatment team and make sure you are healthy enough for exercise.

Clearly, weight is an important factor in health. And Lupus Warriors need to pay extra attention to changes in weight to minimize risks.

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.