For many people with autoimmune disease, fatigue is the most debilitating symptom. Why autoimmune disease and fatigue go together is not entirely understood, although inflammation may be part of the reason. Other possible factors include pain, poor sleep, inactivity, and depressed mood. Fatigue is not just feeling tired. Fatigue is composed of both physical fatigue and mental fatigue. Unlike being tired, fatigue is rarely resolved with rest or sleep. Trying to get through the fatigue is difficult or impossible. It is difficult to ignore. One minute you feel fine; the next, you are so tired you can’t help but lay down. It makes you wonder if you are just lazy, getting old, or coming down with a flu or bug.

It is demoralizing in that you are no longer feeling like yourself. No more can you run errands all day, go to the mall shopping, or leave the house for any length of time. No more combining errands, like a dental appointment and a stop at the grocery store. One errand a day seems to be the only way to handle the fatigue. It can also significantly affect the ability to work and spend time with friends and family. This ongoing fatigue can lead to depression and a diminished quality of life as well. Autoimmune disease is characterized by enhanced inflammation in the body, created by the release of cytokines when the immune system responds to a perceived pathogen. Cytokines are responsible for coordinating the attack against pathogens, and they also cause inflammation. Because the immune system is overreactive in autoimmune disease, cytokines are likewise elevated, creating high inflammation and fatigue. Sleep at night becomes an enigma. Does too much rest during the day keep sleep at bay at night, or does the pain, worry, and anxiety keep you awake? No longer can you leave things until the end of the day. Brushing teeth and washing your face becomes too much of a chore when fatigue begins to set in after dinner. If the energy is there, you have to do things as they come up. You cannot put things off, like doing the dishes or getting ready for work the next day. Resting will not necessarily bring your energy level back. Caffeine does nothing to fight or ease the fatigue symptoms either. Sometimes you feel just as tired when you wake up as when you went to bed.

The Autoimmune Association has heard from people who describe their fatigue in no uncertain terms:

• It’s debilitating! It feels like my body is lugging around a ton of bricks.
• Because of my fatigue, I am not the person I once was.
• It’s bone-achingly, spirit-sapping heaviness. And no amount of sleep gets rid of it.
• For those who didn’t hear it the first thousand times, I am not lazy.
• It interferes with personal hygiene activities, cooking even simple meals, cleaning the home, shopping for groceries, taking care of business, participating in recreational activities, getting together with friends and relatives, and even reading a book, simply everything that most people take for granted.
• It’s like quicksand.
• I no longer assume I will feel as good at the end of the day as when I woke up without rest in between.

To better understand the effect of fatigue, the Autoimmune Association recently asked autoimmune patients how fatigue affects their lives. More than 1,000 respondents overwhelmingly indicated fatigue has a negative impact, as illustrated by these figures:

• 99 percent said fatigue impacts their quality of life
• 92 percent said fatigue impacts their family relationships
• 91 percent said fatigue had caused depression for me
• 89 percent said fatigue impacts their career/ability to work
• 56 percent said fatigue affects their ability to parent

Fatigue is not well understood by the medical community, and effective treatment options are limited. Among patients who talked to their doctors about their fatigue, less than 30 percent said their doctors prescribed or suggested treatment. However, there is considerable research currently underway that aims to better understand the mechanisms behind fatigue, opening the doors for better ways to treat it. One of the most important aspects of controlling fatigue is learning to pace your physical activity. It’s easy to overdo it when you’re feeling good, but you end up in a cycle of high activity as you try to catch up on what you didn’t accomplish when you were fatigued. This is then usually followed by a few days of extreme fatigue. This pattern keeps the disease active. Learning to pace your activity is important. Don’t overdo it even when you’re feeling well. This is a harmful pattern of behavior among patients. When fatigued, you may find some relief through getting quality sleep, if that is possible.

Practicing mindfulness and relaxation techniques, talking to a mental health professional, and resting throughout the day. Some people have found that supplements such as vitamins B and D can help (talk to your doctor before starting any new supplement), and others have found that light exercises like yoga or tai chi can help. Try different techniques and find what works for you. It may change as your age and disease progress as well. Fatigue can be one of the most frustrating symptoms of an autoimmune disease, especially because others don’t understand why you’re still fatigued – and sometimes, even more so – after a “good night’s sleep.” When fatigue gets you down, rely on others with autoimmune disease, perhaps in a support group or a trusted friend or family member, for understanding. Taking care of yourself and being gentle to yourself can also help. But nothing will make it go away.

Nancie Wiseman Attwater is the author of A Caregiver’s Love Story.