15 Questions with Dr. Diane Kamen – “Fatigue and Lupus”
As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom and can be debilitating. It is unclear why extreme fatigue occurs in so many people with lupus, but a variety of factors appear to play a role. This month, Dr. Diane Kamen answered your questions about fatigue and lupus.
1. Have lupus researchers discovered any more information about the causes of the extreme lupus fatigue so many of us experience?
A majority of patients with lupus identify fatigue as one of their primary symptoms, yet the causes of fatigue vary from person to person. Although research is still ongoing, several important factors have been found to be associated with fatigue such as poor sleep quality, depression, anxiety, anemia, vitamin D deficiency, and reduced physical activity with deconditioning. Conditions that sometimes co-exist with lupus such as obesity, diabetes, thyroid disease and fibromyalgia can also be associated with fatigue. Lupus itself can also be associated with fatigue, but so can the medications used to treat lupus, creating a challenging balance for many patients.
2. My fatigue is not constant but seems to come in bouts, it this something you hear frequently? New Canaan, CT
Yes, just like other symptoms of lupus commonly wax and wane over time, so can the fatigue. And similar to what we know about triggers of lupus flares, what triggers the onset of severe fatigue can vary from person to person and can sometimes be unpredictable. Research is ongoing to find better biomarkers (lab tests that detect early indications of a problem) which will help reduce this unpredictability but the studies so far have not found an ideal test.
3. Is it possible to have debilitating fatigue and have normal labs and other symptoms are minimal? Cumming, MA
Yes, we definitely see this occur where fatigue is the main, or only, active symptom of a person’s otherwise-well-controlled lupus. It is a reminder that labs do not always tell the whole picture and there is much about lupus we still need to understand better. Up to 80% of patients with lupus identify fatigue as one of their primary symptoms and the fatigue can be quite severe.
4. Despite fatigue being recognized by the medical community as a sometimes debilitating symptom of Lupus, it is extremely hard to have that fact recognized by disability insurance companies. What are some ways patients and doctors can work together to provide objective evidence of disabling fatigue cause by Lupus? North Fort Myers, FL
Insurance companies and other organizations involved with disability do sometimes put less weight on what we call “subjective” problems – symptoms that are felt and experienced by patients but not easily validated with an “objective” finding such as with a lab value or physical exam finding. Often, this requires a statement from the treating physician explaining the condition and how fatigue is related. Educating insurance companies more about lupus and related fatigue would certainly be a good place to start. Lupus awareness is growing everyday (thanks to awareness campaigns like those the LFA has initiated) and hopefully will lead to more understanding of this illness by organizations like insurance companies.
5. I have been a lupus patient for seven years. One major struggle is dealing with fatigue. What activities/habits might exacerbate being fatigued? Chicago, IL
As with most chronic illnesses, leading a healthy lifestyle will help lessen the impact of your symptoms. We know that even small lifestyle changes can help with many symptoms of lupus including fatigue. Lifestyle factors that influence fatigue and energy levels include exercising regularly, avoiding tobacco and drug use, limiting or avoiding alcohol, eating healthy (limiting fast food and high sugar foods, eating more lean meats, fruits and vegetables for example). Several studies in which patients with lupus with low levels of physical activity participated in supervised exercise programs have shown that exercise tolerance, fatigue, and quality of life improve slowly over time. Injury from the exercises is rare despite it being a common fear of patients prior to starting a program.
6. I teach 4th grade and feel totally worn out by day's end. Are there any specific foods/diet, vitamins, exercise, etc. that can re-energize to get through a full day? Does your overall diet have any impact on lupus fatigue? La Mirada, CA
Regular exercise is one of the single most important things you can do to help combat fatigue. A diet lower in carbohydrates and higher in protein, vegetables and fruits has been shown to help with fatigue (see #5 above). I often recommend patients visit the LFA website for tips on meal planning and food choices. There are no specific vitamins that have been shown to help with fatigue unless you are deficient, which is uncommon except for vitamin D deficiency (see #12 below). Your doctor can check for vitamin deficiencies with a physical exam and simple blood tests to see if supplementation is needed.
7. Do people with lupus actually NEED a lot of sleep or do we just FEEL like we always need more sleep. Should I be sleeping the normal 8 hours instead of 11? Will it make a difference in my fatigue? Oceanside, CA
While getting an adequate amount of sleep is important, everyone has a different amount of sleep they require to function normally during the day. For adults 8-9 hours is usually adequate (10-11 hours for children) and sleeping longer does not usually help with fatigue, even in patients with lupus. It is important that your doctor check you for other common causes of fatigue such as sleep apnea, diabetes, anemia and thyroid disease. It is also important that your sleep at night is not disrupted – i.e. do you awaken frequently at night, get up to go to the bathroom at night, have problems falling asleep? If so, these may indicate another problem causing your fatigue.
8. I am 39 years old and was diagnosed with Lupus a year ago. I am fatigued all the time, even after 12 or more hours of hard sleep. What does research show to be the most helpful for true lupus fatigue? Are there any new medications on the horizon that may help with this symptom? Reidsville, NC – Berryton, KS
Earlier this year there was an excellent review published by Drs. Grace Ahn and Rosalind Ramsey-Goldman describing the findings from research trials of treatments for fatigue among patients with lupus. Non-drug interventions which were found to be helpful in reducing fatigue include behavioral therapy sessions, acupuncture, and home-based exercise 3 days a week using the Wii-Fit system. Medication trials of intravenous belimumab, a biologic therapy for active systemic lupus, found that fatigue was significantly reduced compared to placebo. A trial of dehydroepiandrosterone (DHEA), an adrenal hormone, taken 200 mg daily improved fatigue among patients but so did the placebo pills. Clearly, more research studies need to be done so we can make more specific recommendations to help patients with their fatigue.
9. Is there anything I can do to prepare myself for fatigue I know is coming after a stressful day? I was preparing for a parade I was participating in and literally collapsed after it was over. A few hours later I was able to get up but still wiped out for the next 16 hours. San Dimas, CA
Many people, even without lupus, identify stress as a trigger of fatigue. So if you know a stressful situation is coming, it makes getting good quality sleep, eating healthy and drinking plenty of water to stay hydrated even more important. Doing those beneficial things, as well as avoiding fatigue triggers (direct sun exposure is a common one for patients, as well as others such as smoking or alcohol/sedatives), can help you get through a stressful day.
10. How do we distinguish between the overwhelming fatigue of our lupus and depression? Oklahoma City, OK
This can be difficult sometimes to distinguish. Often depression will have other symptoms such as crying spells, persistent feeling of sadness, loss of interest in doing things you usually enjoy, or isolating yourself from others. With the fatigue from lupus, you may still enjoy doing things but feel like you don’t have the energy to do them. With depression, you may lose the interest in doing these things, regardless of your energy level. It is very important to discuss your symptoms with a healthcare provider since depression can be a serious illness requiring treatment such as medication or psychological counseling.
11. How can Lupus Fatigue be differentiated from other causes of fatigue such as Chronic Fatigue Syndrome? I've been told I have both and I don't understand how my fatigue can be a separate diagnosis. Hatboro, PA
Usually there is not a way to clearly distinguish these causes of fatigue, especially since (as described in #3 above) fatigue may be the only active symptoms of otherwise-well-control lupus. It is very important to make sure lupus activity is adequately and appropriately treated and that other causes (mentioned in #1 above) are ruled out. With that in mind, the treatments and things to avoid or reduce to help your symptoms of fatigue would be the same as mentioned in other answers here.
12. Is it possible that being deficient in Vitamin D has anything to do with increased disease activity and extreme fatigue? Media, PA
Good question and one which our group has been researching for several years, since finding that a majority of patients with lupus have low blood levels of vitamin D. These low levels are likely due to several causes, one of which is sun-avoidance since direct sunlight is a trigger of lupus flares but it is also our main source of vitamin D. We know that adequate vitamin D is important for bone health as well as balance/stability and we are still learning about the ways vitamin D influences immune system health. Dr. Guillermo Ruiz-Irastorza and his group in Spain studied the relationship between fatigue measurements in patients with lupus and their blood 25-hydroxyvitamin D levels and concluded that very low vitamin D levels predicted higher fatigue scores. When vitamin D levels were increased by oral vitamin D3 supplements, fatigue among the patients improved. This is promising news that vitamin D supplementation for those patients who are vitamin D deficient may help with fatigue and several research studies of vitamin D are underway for us to learn more.
13. I’ve had lupus for 32 years. During this time I've had extreme fatigue and insomnia. I'd like to find something natural to help me sleep. I'm so tired of taking drugs and I refuse to take sleeping pills. Can you suggest anything? Pahrump, NV
Insomnia can have a number of causes and can be difficult to treat. Exercising during the day with only light exercise in the evening, avoiding a heavy dinner or eating late at night, reducing caffeine, choosing a comfortable mattress, and a relaxing bedtime routine such as listening to music or pleasure reading have all been shown to help with sleep at night. To increase your chances of a good night’s sleep, you should also try not to nap during the day and avoid late night TV watching or working in bed. It is a good idea to establish a “wind down” routine in the evening to relax your mind and body before getting into bed.
14. I was diagnosed last March w/ SLE Lupus. I went from not being able to walk, to doing well on CellCept. I still have this incredible fatigue. After work I have to go to bed sometimes at 6 pm. My husband says I snore at night. I wonder if I may have sleep apnea. Does that happen often with Lupus patients and could this contribute to my fatigue? Would a sleep study be appropriate to rule that out? Springfield, MO
It is certainly possible that you do have sleep apnea, which could certainly contribute to your fatigue and be diagnosed with an overnight sleep study. Studies of sleep patterns among patients with lupus have found high rates of unrestorative (poor quality) sleep and sleep disorders, including sleep apnea and abnormal limb movements during sleep. Factors that were found to be associated with poor sleep quality include lupus disease activity, prednisone use, depressed mood and lower levels of exercise. Other factors that increase the risk of sleep apnea in the general population include smoking, alcohol or sedative use, being overweight, and having a family history of sleep apnea.
15. I have extreme fatigue about a week before my menstrual cycle. Is this due to my lupus or the hormone changes during menses? Do you have any other suggestions to help alleviate the pre-menstrual fatigue? Madison, WI
Hormonal changes, especially shifts in estrogen and progesterone around the time of menses, are a common trigger of fatigue in women both with and without lupus. Be sure you get checked for other causes such as thyroid disease and anemia if you have not already. Keeping a monthly symptom diary may help you predict the timing and severity of your premenstrual symptoms. There is some evidence that certain anti-depressant medications may help with premenstrual symptoms such as fatigue. Hormonal birth control, such as birth control pills, are often prescribed to treat premenstrual syndrome, including fatigue, however estrogen-containing formulations should be avoided in patients at risk for blood clots, so the decision should be discussed with your lupus doctor before starting.