Self-Management Resources

Self-Managing Your Mental and Physical Health

Coping Skills

 

Coping with Chronic Illness
A presentation recording and accompanying PowerPoint slides provided by Lupus Research Alliance and Becky Hashim, PhD (April 11, 2012)

Managing Stress

 

Managing stress may help people with lupus reduce the occurrence of lupus flares and improve their overall health. Techniques that may help people manage stress include mediation, mindfulness, and Mindfulness-Based Stress Reduction (MBSR), all of which are mentioned below.

Mindfulness-Based Stress Reduction (MBSR) was founded by Dr. Jon Kabat-Zinn in 1979 at the Stress Reduction Clinic at the University of Massachusetts Medical Center. It is a program that uses mindfulness mediation to help people manage their stress and improve their health, including those who live with chronic illnesses such as lupus. The University of Massachusetts Medical School’s Center for Mindfulness offers 8-week long in-person and online MBSR programs for a fee. Other organizations also offer MBSR programs and resources, two of which are shown below. There are also a variety of apps available that can help you incorporate mediation into your daily routine as a way to manage stress. If you and your healthcare providers think mediation or MBSR programs may help you manage your stress and thereby help you manage your lupus related health problems, we encourage you to learn more about how stress impacts lupus and explore the many resources available online and in your community. The links included here are to help you get started in your research.

Meditation: What? Why? How?
Lupus Research Alliance’s Coping Corner provides information on the benefits of mediation and how to start (September 1, 2015)

Stop, Breathe & Think: Meditation and Mindfulness
An app designed to help you practice meditation and mindfulness

A Mindfulness-Based Stress Reduction Workbook
A workbook by Bob Stahl, PhD and Elisha Goldstein, PhD to help you learn mindfulness-based stress reduction (MBSR) which can help you to reduce your stress, anxiety, panic, depression and chronic pain

The MBSR Online Course
An 8 week, online mindfulness-based stress reduction (MBSR) program taught by Dr. Saki Santorelli and Florence Meleo-Meyer

Managing Fatigue

 

Strategies for Managing Fatigue
Information and strategies to help people with lupus manage fatigue provided by Lupus Foundation of America’s National Resource Center on Lupus

Managing Emotions Including Depression, Anxiety, Anger, and Frustration

 

Coping with Depression
Video created by WebMD in which people living with lupus share how feelings of depressions have affected them and how they manage them

Does Lupus Cause Depression?
Lupus Research Alliance’s Coping Corner takes a closer look at a study on depression and lupus conducted in 2011. In addition to explaining findings of the study, the article also provides ways you can take control and minimize feelings of depression (April 29, 2011)

Mental Health and Lupus
Lupus Research Alliance provides information on depression, lupus fog, and memory issues caused by lupus and ways to cope. There is also a link to the accompanying presentation by Beverly Johnson, MD

Managing Sleep

 

Lupus and Sleep
Video created by WebMD that provides tips to improve your sleep

Sleep Tight Despite Lupus
Strategies to help people with lupus get a better night’s sleep provided by Lupus Foundation of America’s National Resource Center on Lupus

Managing Memory and Concentration Issues

 
Dealing with Lupus Fog
Lupus Research Alliance’s Coping Corner describes a symptom that some people with lupus experience which is often referred to as “brain fog” and provides practical tips on how deal with lupus brain fog (March 23, 2011)

Managing Pain

 

Easing Joint and Muscle Pain
Information on joint and muscle pain provided by Lupus Research Alliance

Strategies For Managing Pain: Information and strategies to help people with lupus manage pain caused by lupus or fibromyalgia provided by Lupus Foundation of America’s National Resource Center on Lupus

Consider Massage to Help Manage Pain and Stress: Lupus Research Alliance describes how massage could help people with lupus manage their pain and provides tips to help people with lupus who wish to give massage therapy a try (July 21, 2012). For further information on how find a massage therapist you can visit Lupus Research Alliance’s Lupus and Massage, which was written by Samantha Paige-Graeber, a licensed massage therapist

Managing Pain Before It Manages You
A workbook written by Margaret A. Caudill designed to guide people who suffer from chronic pain through various management and coping strategies. Workbook is available in print or as an E-Book

Nutrition and Healthy Eating

 
Food, Nutrition and Lupus
Information, including a webinar from the Lupus Research Alliance. Webinar and supporting handout can be found here..

Diet
Information on diet considerations for people with lupus from The Johns Hopkins Lupus Center. Also included is a reference to another page, Things to Avoid, also created by The Johns Hopkins Lupus Center that you may find helpful.

Recipes
Lupus Foundation of America’s National Resource Center on Lupus shares many recipes for quick and healthy meals

Healthy Eating Every Day
A program designed to help you establish balanced and healthy eating habits and positively change your diet.

Physical Activity

 
The Benefits of Exercise in Lupus Management
Article provided by Everyday Health and written by Chris Iliades, MD that explains why exercise is an important part of managing lupus and the types of exercise that are most beneficial (April 6, 2009)

section on exercise including workouts and videos

Yoga for People with Lupus: Information provided by Dr. Melissa West

Most and Least Recommended Types of Yoga When You Have Lupus: Lupus Foundation of America’s National Resource Center on Lupus gives an overview of the types of yoga that might be most beneficial for people living with lupus, as well as the types of yoga to approach with caution

Exercise and Aquatic Programs: Local programs offered by the Arthritis Foundation

Walk with Ease (WWE)
A 6 week program created by the Arthritis Foundation. Program may be offered as a community program or you can take it as a self-guided course

Active Living Every Day (ALED): Classes or online

Right Moves for Lupus: Exercise Video created by the North Carolina chapter of Lupus Foundation of America

There are many different types of exercise and workout videos available online and you may wish to broaden your search criteria to find ones that work for you. For example, you can search YouTube for exercise videos for people with lupus, for people with arthritis, for people who have disabilities or mobility challenges, etc.

UV Exposure: What You Need To Know: Lupus Foundation of America’s National Resource Center on Lupus provides information on the dangers of UV exposure and suggest ways people with lupus can protect themselves

Lupus & Sun Sensitivity: What You Need To Know: Hospital for Special Surgery shares an article written by Dr. Michael Lockshin that explains what it means to be “Sun Sensitive” and how to determine if you are sensitive to the sun Medication Adherence

Ask Me Three: An Illustrated Story on Adherence: The Lupus Initiative’s illustrated story describing the importance of following your treatment plan as created by you and your providers and how to “ask me 3” to get the information you need during your appointments

Managing Lupus Meds: Video created by WebMD that provides strategies to help you keep your medicine organized and stick to your treatment plan

The Lupus Companion: App created for iPhone users by The Lupus Initiative designed to help you keep track of you medications and dosages, medical providers and appointments. It also tracks your symptoms to help you keep an accurate record of your condition

The Lupus App: App for Android users that sends you notifications to take your medications and provides appointment reminders to help you adhere to your treatment plan

Preventative Care Strategies: Living with Lupus: 6 part series providing information on preventative care strategies for Raynaud’s Syndrome, Osteoporosis, Cardiovascular Disease, and more provided by the Lupus Research Alliance and Bella Fradlis, MD

Looking Out for Lupus Flares: Lupus Research Alliance provides things you can do that may help to reduce flares

See information and resources included in “Managing stress”, “Nutrition and healthy eating”, “Physical activity”, “Sun protection” and “Medical adherence” above for more things you can do to help prevent flares.

This and the subsequent Self-Management pages contain a compilation of resources that may help people with lupus self-manage their health problems. The inclusion of these resources was based on recommendations made by a workgroup comprised of healthcare professionals and people living with lupus. This compilation of resources is not meant to be exhaustive and will be reviewed and updated at regular intervals. American College of Rheumatology (ACR) does not have commercial interest in any resources for which an organization collects a fee. Although most resources have been selected based on their effectiveness for specific or generic health problems, it is to the decision of each person with lupus and his or her healthcare team whether a specific resource might or might not be useful to self-manage his or her health problems. As part of the American College of Rheumatology, The Lupus Initiative follows the ACR’s policies regarding privacy, internal and external linking, and copyright and disclaimer issues. Please click here to visit the ACR for website policies. This and subsequent Self-Management pages are, in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006138. Its contents are solely the responsibility of its developers/authors. Points of view or opinions do not, therefore, necessarily represent official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.