Papercut and colored pencil art by Sheryl Aronson X 5

Tuesday, February 14, 2012


Fatigue is a part of many, if not most chronic illnesses, as well as life with chronic pain. Even if the illness itself does not cause fatigue, the energy required to continue to function while dealing with the illness can deplete the body and cause fatigue. Most people are familiar with the extra need for sleep when recovering from an acute illness like the flu. With chronic illness, our body is also expending energy to recover, we just never gets there. Inflammation itself sets off a reaction in the body that causes fatigue.  As many as three in four people with chronic, widespread musculoskeletal pain report having fatigue.
Fatigue is defined in the American Heritage Dictionary as: Physical or mental weariness resulting from exertion. This ignores the fact that fatigue from illness does not involve exertion. Perhaps lethargy or malaise would be better words to describe what we have. They are both defined as an abnormal lack of energy related to illness.
At the cellular level, energy is made of organelles called mitochondria, that produce ATP which fuels the cell. Exercise builds muscle, and increases mitochondrial size and numbers, which increases energy production. Illness or disease, in contrast, may result in premature mitochondrial death, decreased numbers, function, or even mutation.
Among factors that influence fatigue are: hormones, how well our organs function to provide our muscles with nutrients and oxygen and clean out the waste products, the brain, which can override and control any system, the quality and quantity of food and water, and the amount and quality of sleep and exercise we get.
Our bodies naturally lose strength and energy starting in the fourth or fifth decade of life. Other causes of fatigue are overwork, over-exercise, weight gain, depression. too much coffee, stress, menopause, any trauma to the body, including infection, surgery, pregnancy, illness. Many medications cause fatigue as a side effect.
There was a discussion thread in the forums on the Sjogren's World website on how people with Sjogren's Syndrome describe fatigue. A few of my favorites are: 'salmon swimming up a river full of bears', 'I feel like a punctured tire', 'a Salvador Dali painting, where everything is melting'. A friend of mine describes her fatigue graphically as 'like they cut the tips of my fingers off, and all the blood ran out'. I sometimes say that 'my head is filled with marshmallow cream'.

So, how to cope with fatigue (admit it-this is what you came here for):
  • Eat lightly to stay alert- a meal low in carbs and high in protein is less likely to leave you sluggish.
  • Moderate amounts of caffeine early in the day can help with alertness, back off if you feel agitated or if it affects sleep.
  • Sufficient rest is a necessity for all patients with a chronic inflammatory condition. A sleep study (polysomnography) may be useful to identify sleep disturbances or unrecognized sleep apnea.
  • Get at least eight hours of sleep every night. If you wake up at night, plan extra time for sleep.
  • Work with your doctor to find a specific cause and treatment for your fatigue.
  • Know your limits and pace yourself. Plan to do less on your 'bad days'. Try to do more on your 'good days' but don’t overdo it!
  • Listen to your body and plan to take a 20-minute time-out every few hours to help you get through your day. Educate your friends and family about what you are going through and how the fatigue can come and go.
  • Develop a support system to help you with tasks. Ask friends and family members to be prepared to do some chores for you on your fatigue days. Give them specific instructions in advance and be reasonable with your expectations.
  • Get your body moving every day! This may help not only your fatigue but also your chronic pain, poor sleep and depression. Start with five minutes of aerobic exercise daily (e.g. walking, biking, running, elliptical, treadmill) and increase the duration by an additional two to three minutes each month up to a maximum of 25 minutes daily. Adjust these numbers to fit your condition (malady), and your condition (physical). If you have a heart or lung condition, consult your doctor first.
  • If you are still employed, ask your employer for accommodations because you have a medical condition. Try to work from home if possible to gain more flexibility with your work routine. Check the following resources (search “chronic fatigue”) to get more information on work accommodations and/or career options:
  • Disability and Business Technical Assistance Center at www.dbtac.vcu.edu.
  • Job Accommodation Network at www.jan.wvu.edu.
  • Identify the major stressors in your life and work with a mental health professional or your support system to minimize their impact.
  • Divide your day into thirds, and plan to be active only two of them, or one if you are more fatigued.
  • Learn the language of your body. It will tell you what works and what doesn't for you specifically, how much you can do in a day, how much rest you need, etc. 
My thanks to Frederick B. Vivino, MD, FACR, who gathered most of these suggestions together for a Sjogren's Syndrome Resource Sheet.

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