Dear Dr. Cynthia:
I have been diagnosed with myalgic encephalitis or chronic fatigue syndrome.
Call it what you will, it is very disabling and debilitating. It causes mental disruptions that seem to me to be similar to what many older people face -- forgetfulness, slowness, confusion and the inability to follow a thought, locate words or remember things. The fatigue is absurd in its relentlessness. It is like being a battery that won't hold a charge.
Can you share what you know about this condition and tell me where to seek educated help in Pittsburgh?
ANONYMOUS
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Dr. Cynthia Napier Rosenberg |
Dear Anonymous:
Chronic fatigue syndrome is characterized by persistent or relapsing fatigue of definite onset that is not the result of ongoing exertion, is not relieved by rest and results in a substantial reduction of previous levels of occupational, educational, social or personal activities.
The Centers for Disease Control and Prevention has developed diagnostic criteria for this syndrome. These symptoms are in addition to the fatigue, persist or recur for six or more straight months and do not predate the fatigue. They are: impairment in memory or concentration, sore throat, tender lymph nodes, muscle pain, joint pain, headaches, unrefreshing sleep, and postexertional malaise lasting more than 24 hours. The syndrome also is often accompanied by a depression, although it is not known whether the depression is a primary symptom or secondary to the problems in daily living that plague people with this disorder.
As you can see, the CDC has outlined very explicit criteria for chronic fatigue syndrome, which affects 100 to 300 people per 100,000 in the United States. Up to 1 in 5 people who visit their primary care physician report fatigue, but far fewer meet the specific diagnostic criteria for the syndrome.
Chronic fatigue affects women almost twice as often as men and is most common in the 25- to 45-year-old age group, although it can also affect children and the elderly. The cause is not known. It often follows a viral or flu-like illness, but it is unclear whether a virus is the actual cause or simply a trigger.
The fatigue of the disorder is overwhelming and debilitating. Perhaps worst of all, many people are told that there is "nothing wrong with them" or that their symptoms are "all in their head." It is true that we do not understand the etiology of the illness and that there is no laboratory test to diagnose it. That does not mean, however, that the people who suffer from this disorder have "nothing wrong with them."
The good news is that chronic fatigue is not a progressive disease. Most people experience a gradual improvement in symptoms over time and some recover fully. Although there is no curative treatment, good pharmacological therapies are available for many of the symptoms. In addition, a conservative exercise program can increase strength and decrease the risk of escalating disability and deconditioning.
Concerning where to seek treatment, I would start with your primary care physician. A good primary care physician can help you understand the problem and work with you to establish a solid program for supportive treatment and rehabilitation.
One last point. Although this disorder has been known historically by many names, including neurasthenia, "vapors," and epidemic neuromyasthenia (to name only a few), the accepted terminology now is chronic fatigue syndrome.
Other common terms, such as myalgic encephalitis and chronic fatigue immune dysfunction syndrome imply a definite etiology. And as I have already discussed, unfortunately, at the present time we do not have that definitive information.
Dear Dr. Cynthia:
My grandmother is a diabetic. Three weeks ago her doctor ordered X-rays of her right foot and told her to keep off of her feet and to do as little as possible. She has ulcers on her foot and he told her that if her foot does not heal she will need to have it amputated.
She had a triple bypass seven years ago and they removed the vein in her right leg. She has been told by her doctor that she has hardly any circulation now in that leg.
Can you tell me if there are any kinds of lotions or oils that I can order that will help her skin to heal? It is almost impossible for her to stay off of her feet because my grandfather has Alzheimer's disease and requires round-the-clock care.
I've sent my 17-year-old son to help out because I work 10-hour days, five days a week. I try to help out on my days off and in between my working hours but I'm at a loss and don't know what to do.
RONDA
Dear Ronda:
I am very sorry to hear about your grandmother's problems. Unfortunately, the problem she is experiencing with her foot is very common among diabetics. First, because they have decreased feeling in their feet, they often do not know when they cut their feet, step on something or get an infection. This is why it is very important for them to look at their feet every day to make sure that nothing is wrong. They also frequently have poor circulation to their feet. Therefore, blood (which carries oxygen, nutrients and the body's defenses against infection) cannot get to the source of the problem. Because her problem is secondary to circulation, lotions, oils or other topical treatments are likely to be of little benefit.
Ask your grandmother's doctor for a referral to a physician who specializes in diabetic foot problems. As her doctor has pointed out, she does need to stay off her feet as much as possible until her foot heals. Unfortunately for her and for you, it appears as if that is very difficult due to her caregiver burdens and responsibilities.
Even if she recovers completely from this episode, the underlying problem is not going to go away. I suggest that you call your area agency on aging to find out what resources are available to help both your grandmother and your grandfather. Your grandfather's caregiver needs will increase as his disease progresses and your grandmother, even with your help, will not be able to provide the care by herself.
Dr. Cynthia Napier Rosenberg is Chief of Geriatrics and Executive Director of Senior Health Services at West Penn Hospital. Her column appears in the Health section on the third Tuesday of every month. If you have any questions on health and aging, you can write to her at P.O. Box 9190; Pittsburgh, PA 15224 or via her email address at drcynthia@wpahs.org
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