Fatigue is an integral aspect of living with lupus. Dr. 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 its like dealing with 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 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.
Dr. Berman said there are many contributing causes of fatigue. She encouraged the group to think about lupus as an umbrella for your fatigue and think about other medical issues that may cause it, as well as social and emotional issues. 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.
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.
While fatigue is a common experience, Dr. Berman believes both patients and health care 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 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.
Dr. Berman says it's important to help your doctor prioritize during your visits. She suggests writing down your top one or two issues you want to talk to your doctor about and bring it up in the beginning 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. Again, talk to your doctor about your individual case of lupus and 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 fatigue does not mean you are lazy! For example, when it comes to your to-do list and your housekeeping, allow yourself to cut down the list without guilt. Have your groceries delivered. Though this is more expensive, Dr. Berman said 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 clues for 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 suggests 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.
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, 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 a Social Work Intern and SLE Workshop Coordinator at the time this summary was written.