Q: My question is about fatigue.  Of all my lupus symptoms I find the fatigue most frustrating.  It seems I’m tired all of the time regardless of how much I sleep.  Any suggestions?

A: Fatigue is probably the most common symptom of lupus.  Although it is not the most serious symptom, it can be extremely debilitating and depressing.  My first suggestion is that; you work with your physician to try to understand the specific cause(s) of “your” fatigue.  Is it a result of pain or inflammation? Is it due to anemia or low thyroid levels?  Is it due to a lack of restorative sleep or a lack of rest periods?  For example, if it turns out that your fatigue is due to inflammation, anemia, or low thyroid, medication will likely be prescribed.  If it is related to pain, several medications and pain management interventions are available.  If depression is responsible, counseling or anti-depressants might be used.  If your fatigue is related to overdoing consider programs for energy conservation, stress reduction and lifestyle changes. 

Once you have seen your doctor and have had relevant laboratory tests, begin keeping a daily journal tracking your fatigue along with daily activities, sleep, rest, pain, emotional moods and medications.  The point is to try to discover for yourself what contributes to or lessens your fatigue so that you can modify your behavior.  The truth is that most of us simply continue doing the same routines over and over even if they don’t necessarily work for us.  We are creatures of habit, so unless we see in black and white that something is a problem, we might not be motivated to change it.  Documentation can help you to break out of denial and into action.   One possible method of documentation is a Lifestyle Chart (below).  The left side of the chart shows various factors that may contribute to fatigue.  In addition to the categories shown, some people like to keep track of nutritional factors (e.g. sugar and carbohydrate consumption), social time, stressful situations and negative thinking.  Feel free to modify the categories of the chart to suit you own needs.  The last category (bottom row) is where you rate your fatigue level on a scale of 1 to 5*.  Across the top are the days of the week.  You may need to document for several weeks (at least 6) before you will be able to see patterns and correlations.

 

 

LIFESTYLE CHART

 

Monday

Tuesday

Wednesday

Sleep

6 hours

8 hours

9 hours

Work

5 hours

3 hours

4 hours

Chores

1 hour

1 hour

30 minutes

Errands

2 hours

1 hour

None

Pain

Severe,

Joints, especially

Mild, hands,

 

whole body

hands, moderate

shoulders, back

Mood

Stressed in morning

Optimistic in morning

Good mood in morning

 

Depressed in evening

Anxious in evening

Lonely after work

Naps

No nap

45 minutes, afternoon

30 minutes, afternoon

Medication

Prednisone (dose)

Same

Same

 

Plaquenil (dose)

 

 

 

Celebrex (dose)

 

 

Weather

Foggy, overcast

Rain clouds

Rain

Exercise

No exercise

Yoga tape

Stretch 10 minutes

 

 

20 minutes, PM

20 minute walk, PM

M. Cycle

Day 10

Day 11

Day 12

Fatigue*

5

4

3

 

 

 

 

* 1-well rested;  2-rested;  3-fatigued;  4- very fatigued;  5-exhausted

  

Although lupus can cause unexplained fatigue, chances are good you will see some connections between your fatigue level and your personal and emotional life.  Remember that your doctor can treat your clinical symptoms of lupus by adjusting your medications and treating your pain but he or she cannot treat your lifestyle.  That’s your job.  So review your findings and develop a plan to change what isn’t working for you.  Begin by increasing the activities (e.g. rest, exercise, social support) that are associated with your better days and decreasing the factors that are correlated with your most exhausted days (e.g. stress, over-activity, negative thinking, sugar consumption). Remember that coping with lupus fatigue is a long-term project.  I hope this helps.