Lupus and Fatigue

Adapted from a Presentation at the SLE Workshop at Hospital for Special Surgery by Jessica Berman, MD

Jessica R. Berman, MD
Jessica R. Berman, MD
Assistant Program Director, Rheumatology Fellowship, Hospital for Special Surgery
Associate Attending Physician, Hospital for Special Surgery

Defining Fatigue

Fatigue is an integral aspect of living with lupusDr. Berman asked the group to define what fatigue means in their lives. 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 be 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 deal with lupus every day, "The best way for them to understand what fatigue and lupus is like is by saying 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. That is what distinguishes the fatigue someone living with lupus experiences from that of other people.

Fatigue is very a very common complaint among those living with lupus. Dr. Berman said 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.

Causes of Fatigue That May Be Unrelated to Lupus

Dr. Berman said there are many factors that contribute to fatigue. She encouraged the group to think about other medical issues that may contribute, as well as social and emotional issues since some of those factor may be modifiable. 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 speak to your doctor about.

  • Thyroid Problems: Issues with your thyroid can usually be attributed to an autoimmune problem; most doctors are good at measuring thyroid problems and addressing them.
  • Stress: Dr. Berman said that doctors need to be asking their patients about stress as well. While she doesn't believe stress causes a disease, she believes it certainly doesn't help. Stress is usually something you can modify, so speaking to your doctor about your stress level and what can help alleviate it may be a good first step.
  • Depression: Being depressed definitely makes you feel tired and it can be a difficult cycle to break.
  • Diet: Some people with lupus struggle with gastrointestinal issues 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 a fever, rash, joint pain, or muscle pain, you will feel more tired.
  • Anemia: Anemia occurs when your red blood cell count gets low. This means that the amount of oxygen you carry will decrease, which will 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 a cause of fatigue. You might not be sleeping well for a variety of reasons, including side effects from medications.
  • Sleep apnea: This is a problem with not being able to get enough oxygen while you sleep. This means that you are not sleeping well, which can contribute to fatigue.
  • Low Vitamin D Levels: Vitamin D is an important vitamin that your body gets in many ways, including from the sun. Low levels of vitamin D can cause fatigue.
  • Doing too much: Dr. Berman said that even having too much to do can cause fatigue, even among those who are healthy. She sometimes tells her patients that they are taking on too much and they need to modify their routine. She will suggest to her patients that out of a list of five things, they cross off two immediately so that they can realistically manage those tasks.

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.

  • 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 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 usually recommends to her patients that they take them at night so they don't interrupt your sleep cycle and you get the medication benefit. She stressed that you should speak to your doctor individually about that first.
  • Blood pressure medications: While rare, these 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, particularly opioid (narcotic) pain medications.
  • Prednisone: Many people living with lupus take prednisone regularly. It can act as a stimulant, causing insomnia and 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 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.

Working with Your Doctor to Better Understand 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 generally do not do a good job addressing their lupus patients' concern about fatigue because many other important medical issues seem to take priority during each appointment. She asked the group to think about questions they would like their doctor to ask them in order to better understand their fatigue. She then shared some of the questions she asks her patients.

  • Did you get good night's sleep? Dr. Berman said this is a great question to ask because sleep is so important to fatigue. If you aren't getting 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.
  • How many hours after you get up are you working productively before you get hit with a wall of 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 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, or you 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 tell your doctor how bad your fatigue is? 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. 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 bring it 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.

What You Can Do to Manage Your 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 deal with managing your own expectations of what you should be able to do.

Dr. Berman stressed that you need to be kind to yourself while dealing with fatigue and that 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 to 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.

You should also ensure you are following 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.

It is very 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 some of "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.

Dr. Berman also stressed the importance of exercise. 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. The key is that you have to have different expectations for yourself. For the exercise to be effective, it doesn't have to be strenuous. For people living with lupus, the idea is to maintain a low level of activity. This will improve your lung capacity. Exercising also has implications for reducing pain because of its release of endorphins.

For those living with lupus and suffering from inflammation, physical therapists emphasis 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 overexert your capability. For cardiovascular workouts, it is important to engage in low-intensity exercise, as it is less harmful to the joints. Waking on the treadmill is ideal. If working with a physical therapist is of interest to you, talk to your doctor. They can recommend a physical therapist that can design a program for you to exercise safely and effectively.

If you are still working outside your home, managing fatigue in the work place 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. 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.

Conclusion

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 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.

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 was first written in 2012. The summary was reviewed and updated by Dr. Berman, after she gave the presentation again in 2017.

References

1 Arriens. Nutr J 2015 Aug 18;14:82.
2 Davies, Lupus 2012 649-55.


 

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