Coping with Fatigue

You may feel that when you complain about tremendous fatigue, your friends, family, and physicians look at you as if you are crazy and they can’t get rid of you quickly enough. Fatigue is tough to see or measure. But many physicians feel fatigue is very real and is a major cause of debilitation in Sjögren’s.

Fatigue, in all its textures and nuances, is part of life for many people with Sjögren’s. The fatigue that accompanies Sjögren’s has been characterized as awful, terrible, bone-tired, bone-weary, toxic, encompassing, poisonous, and noxious. It invades and engulfs, attacks, assaults, inundates, swallows, and entombs. It is a fatigue that makes some people feel as if they are a piece of laundry. They “crumple and fold” like a limp bed sheet or a towel on the floor.

One of the difficult things about Sjögren’s-related fatigue is that it comes on so swiftly. You can feel normal in the morning, and as if there were lead weights attached to every limb by noon. The fatigue may be accompanied by an increase in joint or muscle pain. Fatigue can be a constant companion. We have each had the experience of waking up in the morning and feeling that someone had poured molten lead into our bodies overnight. When the fatigue is sudden, it’s difficult to continue what you are doing. It’s had to concentrate. In the middle of a meeting or some other activity, we have each become too tired to talk. We have put down writing this manuscript in the middle of a sentence.

It is possible to be incredibly tired and still appear normal. Because pain and fatigue are invisible, most people won’t know what you are feeling unless you tell them. When someone knows you well, they learn to pick up subtle signs. “Do you want to go home, Mom?” one of our children said recently after an afternoon of shopping. After so many years, he had learned to recognize when his mother was ready to fold. Mom gratefully handed her grown-up son the car keys.

You may be sensitive to changes in either temperature or barometric pressure, or both. You know that a storm is moving in while the sky remains blue and cloudless. When the temperature shifts dramatically or the barometric pressure rises or falls, you can feel a corresponding wave of fatigue or feel released from fatigue.

Other medical causes of fatigue should be ruled out. Fatigue is a nonspecific symptom that accompanies many different conditions. Among these are diabetes, thyroid conditions, anemia, infection, cancer, and other autoimmune diseases.

Fatigue can be a side effect of medication, but medication can also help alleviate fatigue. A variety of medications that work for pain also help alleviate fatigue: some of the NSAIDs, Plaquenil, and prednisone are examples. Fatigue can result from poor nutrition (because you are too tired to cook or shop) and, paradoxically, from inactivity. Fatigue may also be the result of depression.

We wish we could tell you there is a magic bullet that will zap your fatigue with Sjögren’s syndrome, but the best advice we can give is to tell you to work with your physician to keep your disease activity under control as much as possible. Many medications that control Sjögren’s symptoms can help increase your energy levels. The antimalarial and Cox-2 inhibitors often help reduce fatigue and are preferable for long-term use over corticosteroids. In addition to medication, your fatigue can be handled through lifestyle management, including exercise and pacing of activities.

*excerpt taken from ” The Sjögren’s Syndrome Survival Guide”

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