Fatigue is a very common complaint among those living with lupus. HSS Rheumatologist, Dr. Jessica Berman indicates that research estimates 40% of lupus patients have persistent severe fatigue, meaning that the fatigue stays for a long period of time. However, in her practice she believes that almost 100% of people living with lupus experience fatigue at some point in the disease. Patients often report that it is more bothersome than pain.
This discussion was adapted from a presentation Dr. Berman gave at the HSS SLE Workshop, a free support and education group held monthly for people with lupus, and their families and friends.
How do you define lupus fatigue?
Fatigue is an integral part of living with lupus. When Dr. Berman asked the group to define fatigue, a member said, "No matter how much I rest, I still feel tired. Even if I had a wonderful night's sleep."
"That is the perfect description of what fatigue means for those living with lupus," Dr. Berman told the group. While healthy people will come home from work after a hard day and feel fatigued, she explained, after they sleep and rest, they are refreshed. That isn't the case for people living with lupus. For people who don't live with lupus every day, "The best way for them to understand what fatigue and lupus is like to tell them it's like having the flu." Dr. Berman added. "Nothing you can do seems to make the fatigue any better. Also, over time the more and more you experience fatigue, the more chronic it becomes."
Dr. Berman defined fatigue as "an overwhelming, sustained sense of exhaustion and decreased capacity for mental and physical work." This is in contrast to chronic fatigue, which is defined as "unpleasant, unusual, abnormal or excessive whole-body tiredness, disproportionate to or unrelated to activity or exertion and present for one month." As a person living with lupus, you may experience fatigue from a slight exertion, such as showering or making breakfast. Fatigue might make it difficult to even perform these tasks. That is what distinguishes the fatigue someone living with lupus experiences from that of other people.
The many causes of fatigue: it's not just lupus
Dr. Berman said there are many factors that contribute to fatigue. Disease activity from lupus itself especially during flare ups can cause fatigue. Other problems that can be caused by lupus, such as anemia may also be a factor in fatigue. However, fatigue is not always related to lupus and it is important to think about all the causes of fatigue to help improve it. She encouraged the group to think about other medical issues that could contribute to fatigue, such as pain, sleep problems, anxiety and depression, as well as medications and other medical conditions which should also be addressed. Unfortunately, among doctors who do not specialize in lupus, there may be a tendency to blame everything on lupus itself. Dr. Berman said that can be dangerous, and described some other conditions to discuss with your doctor.
- Thyroid Problems: An underactive thyroid can make you feel more tired. Most doctors check this yearly. If you haven’t had it checked, a TSH (thyroid stimulating hormone) level may be in order.
- Stress: Doctors need to be asking their patients about stress as well. While stress is not the cause of lupus, it certainly doesn't help people with lupus. Stress is usually something you can modify, so speaking to your doctor about your stress level and what can help alleviate it (like exercise or mediation) may be a good first step.
- Depression: Being depressed definitely makes you feel tired and vice-versa. It can be a difficult cycle to break. If feelings of sadness become regular, seeing a therapist or psychiatrist may be helpful.
- Diet: Some people with lupus struggle with gastrointestinal or kidney problems and may be on restrictive diets. If you aren't getting the right amount of calories, or aren't able to digest the right amount of calories, you can become very worn down and this can impact your fatigue levels.
- Inflammation: Any time your body is experiencing excess inflammation, such as during a lupus flare, you will feel more tired.
- Anemia: Anemia occurs when your red blood cell count gets low. This means that the amount of oxygen going to your organs will decrease, which can increase your level of fatigue.
- Infections: Since people living with lupus are sometimes on medications that suppress the immune system, they may be more likely to get infections. When infections happen, you are likely to be more fatigued.
- Insomnia: Not sleeping well is an obvious cause of fatigue. You might not be sleeping well for a variety of reasons, including side effects from medications or pain. Distractions from cell phones, tablets and TVs can cause difficulty falling asleep.
- Sleep apnea: This is a problem with not being able to get enough oxygen while you sleep. Obesity or abnormal tissue in the throat can be a cause. People with this disorder often awake feeling unrefreshed. A sleep study can be helpful to make this diagnosis.
- Doing too much: Having too much to do can cause fatigue, even among those who are healthy. Often patients are taking on too much and need to modify their routine. If you have a list of five things to do, cross off two immediately so you can realistically manage those tasks. Don’t be afraid to ask for help!
Medications can cause or contribute to fatigue as well. Dr. Berman stressed that every person is different and therefore will experience medications differently. If you are doing well on your current medications, then there is no reason to believe you will not do well in the future. Below is a list of medications that may contribute to fatigue, however. Reviewing your list of medications with your doctor may be in order!
- Cold and allergy medication: While some people can get "hyper" from these medications, a lot of people feel very sleepy on them. If you need to take them to deal with allergy season, be aware some of these medications can contribute to your fatigue.
- Muscle relaxants: Sometimes you may need to take muscle relaxants, but they can make you feel quite tired. Dr. Berman sometimes recommends to her patients that they take them at night so they don't interrupt your sleep cycle and you get the medication benefit.
- Blood pressure medications: While rare, some types of these medications can have an impact on your fatigue.
- Antidepressants: Medications such as Paxil, Prozac, Zoloft, and Cymbalta can occasionally contribute to feelings of fatigue in some people.
- Pain medications: This is the class of medication that Dr. Berman said she thinks most often contributes to feelings of fatigue and slowed thinking, particularly opioid (narcotic) pain medications.
- Prednisone: Many people living with lupus take prednisone regularly. It can act as a stimulant, causing insomnia and ultimately result in problems getting the necessary amount of sleep. If you are experiencing this, speak to your doctor about whether it is safe to try lowering your dose, or changing the time of day you take it.
- Diet: Diets are always of interest to patients and, unfortunately, they have not been studied in lupus well enough to easily provide clear advice to patients. There may be some data linking the intake of fish oil to decreases in fatigue.1 Other studies have looked at the use of low-sugar diets and low-calorie diets, and these have suggested such diets may have some benefit for lupus patients.2 Alfalfa sprouts have an amino acid, l-canavanine which can cause flares.i Echinacea can boost the immune system so may flare lupus and are best to avoid! But bigger and better studies need to be done. It’s always best to get this kind of advice individually from a nutritionist who knows all the details of your medical history. Dr. Berman advises patients against making big changes in their diet without professional advice. "Everything in moderation" is good advice.
How to speak with your doctor about fatigue
While fatigue is a common experience, Dr. Berman believes both patients and healthcare professionals do not know enough about how to manage fatigue well.
Dr. Berman said doctors may not always do a good job addressing their lupus patients' concern about fatigue because many other important medical issues seem to take priority during each appointment. One way to make sure they are addressed is to talk about it at the beginning of the appointment and make a list of your questions. Here are some of the questions she asks her patients to get an idea of what to discuss with your doctor:
- Do you get good night's sleep? Sleep is directly linked to fatigue. If you aren't getting a good night's sleep, you should make your doctor aware of this so that they can try to address it. It is also important to keep in mind that certain medications may cause sleeping difficulties.
- After you wake up, for how many hours can you work productively before you get hit with fatigue? This question can help you and your doctor track changes in your fatigue level over time. If at some point you used to be able to accomplish six hours of work, and currently you are only able to work for two hours, this can signal to you and your doctor that there may be some underlying issues.
- Is there something you aren't able to do that you would want to do (within the realistic limitations of your illness)? This is an important question because it helps your doctor know what your limitations and your goals are, and therefore can help direct the doctor in managing your fatigue.
- What are your daily activities? These questions help gauge how much energy you exert on a daily basis.
- How often do you feel fatigued? This question helps your doctor get a sense of what kinds of things might influence your fatigue. If you become fatigued for a week after vacuuming, that helps your doctor understand the impact of your fatigue.
- What are the consequences of your fatigue? If you are no longer able to engage in certain activities, and are suffering emotionally as a result, this is important for your doctor to know.
- How do you cope with your fatigue? This is really important; your doctor wants to know what kinds of things you do to help manage your fatigue, and whether you are able to rely on other people for help with it. If you are lacking a support system, your doctor may be able to offer you some support.
- Can you rate your fatigue? It is important for physicians to get a sense of how the fatigue feels to the patient, so your doctor might want you to identify a number from 1 to 10 that indicates how bad it is. There are tools used in studies that are more complex. Dr. Berman admits that there are no perfect tools to measure fatigue, but she likes to use a visual analog scale that is used in other areas by rheumatologists (such as measuring joint pain) when assessing fatigue with her patients.
Dr. Berman said it's important to help your doctor prioritize during your visits. She suggested writing down the top one or two issues you want to talk to your doctor about and bringing them up in the beginning of your visit, so it can focus the appointment.
In summary, there are several ways your doctor can help you manage your fatigue. The first is to look for and treat any other medical conditions that may be contributing to it. Secondly, it is important to examine your current medications and the possibility that one of them is contributing to fatigue (or the amount used or time of day it's taken). In addition, if you are suffering from insomnia, your doctor may want to prescribe a sleep agent. Some doctors may add an "activating" medicine, such as Wellbutrin or Provigil, to improve your ability to function with fatigue. In some situations getting more exercise may be beneficial as well. Again, talk to your doctor about your individual case of lupus and fatigue.
How do I manage lupus fatigue?
In addition to working with your doctor, there are things you can do on your own to help beat fatigue. Many of these techniques help you manage your own expectations of what you should be able to do:
- Be kind to yourself while dealing with fatigue. Experiencing fatigue does not mean you are lazy. For example, when it comes to your to-do list and your housekeeping, allow yourself to cut the list down without feeling guilty. Have your groceries delivered. Though this is more expensive than shopping yourself, Dr. Berman said you should try to think of it as putting money in your "energy bank." If having the groceries delivered can help you get through the day with your fatigue, it might be worth it.
- Follow a balanced diet. Protein serves as long acting energy, while carbohydrates offer short-term energy. The foods that you eat can have a lot of impact on your body functioning, and the right diet can help with your fatigue. But again, everyone is different, and if you have lupus nephritis, some diets might not be appropriate for you, so talk to your doctor if you would like to try a new one.
- Listen to your body. It's important to follow your body's cues for needing rest. If you need to take a nap during the middle of the day, then do it. By listening to your body, you will feel better and hopefully have more energy.
- Cognitive behavioral therapy has been shown to be effective for managing fatigue. This is a therapy based upon the way you think about things – that the beliefs you have about things impact your behavior. The therapy aims to understand the impact of what may be "irrational" thoughts. For example, you might think that by not cleaning your house, you are a bad person. The therapy will work towards understanding what your beliefs are and then try to offer alternative thoughts that may improve your attitude, feelings, and emotional states.
- Exercise is important. She said she understands that when people living with lupus are feeling really fatigued, they might not feel like exercising is possible, but even just a little exercise will produce more energy. It has been demonstrated that exercise reduces fatigue in lupus patients.ii Other features which contribute to fatigue such as deconditioning and quality of life are improved with exercise.
The key is that you have to have different expectations for yourself. In the beginning people say they are more tired but in a short time gains will become evident as you progress. For the exercise to be effective, it doesn't have to be strenuous. For people living with lupus, the idea is to maintain a regular level of activity even if it is for shorter periods of time. For cardiovascular workouts, it is important to engage in low-intensity exercise, as it is less harmful to the joints. Walking on the treadmill or elliptical is ideal. Remember doing even a little is twice what you were doing before! Start with just 2 minutes twice a week for a month before increasing the amount and don’t expect to go longer and faster every time you exercise. Don’t expect to progress quickly like healthy people do. If working with a physical therapist is of interest to you, talk to your doctor. He or she can recommend a physical therapist that can design a program for you to exercise safely and effectively. Exercising also has implications for reducing pain because of its release of endorphins.
- Stretch to improve range of motion. For those living with lupus and suffering from inflammation, physical therapists emphasize the importance of stretching to improve the range of motion in your joints. Once you are at a certain level in your fitness, you can progress to strengthening your muscles. This can be done with light dumb-bells, or sometimes even household items like soup cans. The point is not to push beyond your capability.
- Take frequent breaks at work. If you are still working outside your home, managing fatigue in the workplace is important. Dr. Berman suggested taking frequent breaks. Sitting for long periods of time causes us to feel stiff, so getting up to stretch will help with stiffness by getting oxygen flowing to other parts of your body. Some patients benefit from a standing desk. Also, Dr. Berman suggested talking to your bosses and your human resources department to see if there are any accommodations that can be made for you to increase your effectiveness at work, such as ergonomic chairs, changes to your computer screen, and possibly adjusting your hours to start later in the day a few days a week or even working from home when you aren’t feeling as well.
- The “Spoon Theory” is one popular way of thinking about how to manage fatigue in which patients are asked to imagine they have a limited number of spoons and to think about how they will use them during the day (imagine 1 spoon=dressing, 4=shopping, etc.) If you do too much in one day you will run out of spoons! It is important to pace yourself, know when to say “no” and when to rest!iii
Dr. Berman closed her talk by saying again that one of the best ways to manage fatigue is to be kind to yourself as you deal with it.
One of the hardest things she thinks her patients living with lupus face is that they really want healthy people to understand what they are going through. Unfortunately, the truth is that healthy people are never going to understand having lupus is like or what your fatigue feels like, and that is okay. Dr. Berman stressed that just because others don't understand what it feels like, it doesn't mean that what you are experiencing isn't valid.
Allowing yourself to have different expectations is important, and reminding yourself of that is one of the best tools in your toolbox to effectively deal with fatigue.
Jessica R. Berman, MD
Associate Attending Physician, Hospital for Special Surgery
Associate Professor of Medicine (Education), Weill Cornell Medical College
Summary by Lysa Silverstein, MPH, MSW: Ms. Silverstein was an intern in the Department of Social Work Programs and the SLE Workshop Coordinator at the time this summary. The summary has been reviewed and updated by Dr. Berman.
1 Arriens. Nutr J 2015 Aug 18;14:82.
2 Davies, Lupus 2012 649-55.
i Akaogi J. Autoimmun Rev, 2006 Jul;5(6):429-35
ii O’Dwyer. Semin Arthritis Rheum. 2017 Oct;47(2):204-215
iii Christine Miseranod, https://butudontlooksick.com/