The Lupus Book: A Guide for Patients and Their Families, Third Edition (36 page)

An OTR is expert in recommending assistive devices such as splints or braces

and practical modifications in the workplace or home (e.g., special spoons, tooth-brushes, shoehorns) that make life easier. Consider this example of how an OTR

works:

Kim is a paralegal for a large law firm. Her employers provided her with

a work station that enabled her to do word processing, answer telephones,

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and file records. But she soon began complaining of neck and upper back

pain as well as numbness and tingling in her hands. Although she has had

SLE for 4 years, she never had any musculoskeletal problems other than

occasional aching until she took this job. Her doctor ordered an occupa-

tional therapy consultation, which carefully evaluated her work station. The

OTR recommended a higher chair with a firmer back and a swivel screen

for the computer. She instructed Kim to type for no more than 20 minutes

at a time. After implementing the changes, Kim began to feel better. The

OTR showed Kim how to squat rather than stoop when picking up a file

weighing more than 10 pounds, and how to lift the files to equalize the

weight on both sides of her body. Her doctor suspected that she might have

carpal tunnel syndrome, which would cause numbness and tingling in her

hand. He injected the carpal tunnel with cortisone and she wore wrist splints

provided by the OTR at night for several weeks. Kim is now pain-free.

Vocational rehabilitation
counselors provide job training for patients who are unable to continue working at their current jobs. Their services are usually obtained through worker’s compensation and disability insurance programs. Some

examples of vocational rehabilitation candidates are sun-sensitive farmers or

fishermen or office employees with hand deformities who are unable to type.

Psychologists
as well as physical and occupational therapists assist lupus patients in learning relaxation techniques that promote improved sleep habits and reduce stress. Some of these techniques include biofeedback, yoga, gentle massage, and hypnosis. (Chapter 25 discusses stress and coping mechanisms, along

with some of these techniques, in greater detail.)

WHY ARE LUPUS PATIENTS ALWAYS TIRED?

One of the most common complaints I hear from my patients is that they are

always tired. There are many reasons for this. Lupus is associated with anemia

and active inflammation, both of which promote fatigue. Some of the medicines

that doctors prescribe for high blood pressure and inflammation, for example,

can make one drowsy. Alternatively, the stresses of dealing with a serious dis-

ease and its associated depression are also exhausting. Many of my lupus pa-

tients whose blood tests show no active disease deny that they are depressed

but still complain of fatigue. A partial explanation is on the horizon. Some recent evidence shows that a group of glycoproteins known as
cytokines
are associated with fatigue (Chapter 5), and cytokine dysfunction is an established feature of lupus.

The best way for a lupus patient to manage fatigue is to follow this course

of action:

1. Determine the cause of fatigue. Ask your doctor to undertake an evaluation

for reversible causes of fatigue such as anemia, hypothyroidism (low thy-

How to Treat Lupus with Physical Measures

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roid levels), elevated blood sugars, or a lupus flare. If one of these is the cause, it can be treated. Consider additional causes of fatigue and rule them out:

malnutrition, substance abuse, pain medicine, depression, bipolar disease.

2. Pace yourself. Keeping active prevents the cytokines from getting the bet-

ter of you. Staying in bed all day only increases fatigue. Commit yourself

to an hour or two of activities followed by a rest period of 15 to 20

minutes. Repeat this several times a day. Most lupus patients can perform

8 to 10 hours of productive work a day if they alternate periods of activity

with periods of rest. Working 6 hours straight can be traumatic; it promotes

a feeling of exhaustion that may call for several days of recovery.

3. Take appropriate medication. Many lupus medications decrease fatigue, in

particular corticosteroids and antimalarials. Your physician may wish to

prescribe certain other medications to treat fatigue. Depending on the cir-

cumstances, some of these include iron, thyroid, modafanil (Provigil) spe-

cific serotonin reuptake inhibiting antidepressants (Prozac, Zoloft, Paxil),

and tricyclic antidepressants (Elavil, Sinequan, Pamelor), or combinations

(Effexor).

4. Get a restful night’s sleep. Many lupus patients have a secondary fibro-

myalgia which is associated with sleep disturbance. Not getting a restful

night’s sleep saps your energy and promotes fatigue. Tricyclic antidepres-

sants relax the muscles and help induce restful sleep without being habit-

forming or dangerous.

5. Walk. A conditioning program with aerobic exercise such as walking gets

more oxygen into the tissues, strengthens muscles, and will give you a

sense of well-being while also reducing fatigue.

CAN WE BLAME IT ON THE WEATHER?

It has been jokingly suggested that patients with rheumatic disease make ex-

cellent meteorologists. Changes in barometric pressure frequently lead to symp-

toms of increased stiffness and aching in the joints. In other words, when the

temperature goes from hot to cold or the humidity from dry to wet, lupus patients complain of a feeling of stiffness. But patients with lupus needn’t worry about their weather predicting abilities. Fewer symptoms are observed in patients who live in desert climates, where the temperature and humidity are consistent. Those who live in the midwestern United States, for example, might be a little more

achy or stiff on certain days. When traveling to different parts of the country, they may find that it takes a day or two to acclimate to their new environment.

HOW DOES SMOKING AFFECT LUPUS?

Smoking is bad enough for those who don’t have lupus. Believe it or not, it

makes lupus even worse! Tobacco smoke containes hydrazines, which are re-

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viewed in Chapter 8. Michelle Petri, a rheumatologist at Johns Hopkins, has

clearly shown that patients with lupus who smoke have more active cutaneous

disease. As if that isn’t enough to convince patients not to smoke, nicotine

frequently aggravates Raynaud’s phenomenon, accelerates vascular disease,

worsens high blood pressure, makes antimalarials less effective, and increases

the greater risk of stroke which is already a worry of patients with SLE. There are simply no good reasons to smoke.

Summing Up

A good deal of lupus treatment involves things in the environment that can be

controlled. A lot can be accomplished by avoiding the sun, eating a healthy,

well-balanced diet, engaging in a moderate amount of general strengthening and

conditioning exercise, pacing oneself, and avoiding frequent changes in baro-

metric pressure. Now let’s continue with things patients can do for themselves.

The next chapter teaches you how to cope better.

25

You Can Help Conquer Lupus

When confronted with a diagnosis of lupus, most patients are initially frightened about the prognosis. Often, their first reaction is to ask what they did wrong.

Coping with the diagnosis of lupus can be a difficult proposition. So many

aspects of the disease must be dealt with that can at times seem overwhelming.

Studies have shown that over half of lupus patients express a broad range of

feelings including stress, anger, depression, fear, guilt, and pain. Conquering these concerns is so complicated that in the early 1990’s the Arthritis Foundation (with the cooperation of the Lupus Foundation of America) supports what is

called SLESH, or the Systemic Lupus Erythematosus Self-Help course, which

consists of seven weekly two-and-a-half-hour sessions addressing these issues.

Other lupus support organizations have developed similar programs, updated

and modified the original programs.

This chapter offers an overview of the principal psychosocial problems that

lupus patients encounter and formulates meaningful, constructive approaches for dealing with them. Active lupus and medications given to treat the disease may

also be associated with mood and behavior alterations, cognitive dysfunction,

fatigue, and fibromyalgia. The reader is referred to Chapters 15, 24, and 26 for a review of these concerns.

WHY COPING IS DIFFICULT

This section lays out some of the most common everyday problems and offers a

discussion of constructive approaches that can be taken to alleviate some of them.

Coping with lupus calls for dealing with many different types of problems at once.

But You Don’t Look Sick!

Jane is a high-powered attorney with a prestigious big-city law firm. She

usually works 50 hours a week at the office and frequently takes work

home on weekends. When she began having joint aches and muscle weak-

ness along with fatigue, her doctor diagnosed her as having systemic lupus

and started her on low-dose steroids and Plaquenil. In order to keep up at

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work, she stopped dating and going out with friends. No one at work

suspected she was ill, and no one was told. On weekends, Jane would stay

in bed, barely able to move, so that she could make it to work the next

week. Dr. Jones told Jane that the drugs would take months to make any

substantial difference in how she felt and that she needed to get extra rest

and take care of herself. Jane, however, was afraid of losing her position

and did not have time to be sick. Jane surprised herself when she finally

broke down and confided in friends, who were supportive and told her to

follow her doctor’s advice.

For better or worse, most newly diagnosed lupus patients look perfectly

healthy. Only 10 percent of patients with SLE develop a deforming arthritis,

and most rashes (and paleness) can be hidden with makeup. Steroids take many

weeks to puff up the face or alter one’s appearance. These delays are fine if

you don’t want anyone to know what’s going on, but it discourages the support

and empathy that people who care about you might provide. Ignoring the disease

can lead to a subconscious withdrawal from your vocational and social interests, mask your need for rest (as it did in Jane’s case), and set the stage for disaster later on.

My Doctor Is Not Listening

In the beginning, most patients experience some relief after being diagnosed

with SLE. Some have exclaimed ‘‘I’m not crazy after all!’’ A honeymoon period

takes place where the diagnosing doctor can do no wrong, followed by a period

of questioning when the patient does not feel better immediately. I schedule a

counseling session with my patients when they are first diagnosed, explain all

the pitfalls of the disease, and outline a treatment plan. To fail to do this will cause problems with patients later on. Often, doctors become too judgmental

and difficult to approach. Sometimes we unintentionally intimidate our patients, who are afraid to tell us of serious problems they are having that may affect

treatment. Patients should not be afraid and must stick up for their rights. I

always respect patients who tell me, ‘‘I need 15 minutes of your time without

interruption’’ and give an organized, well-thought-out presentation of their problems. Also, they should not be afraid to ask for a second opinion. A good doctor will never object to this. Mutual honesty and respect, a sense of understanding of life-styles and limitations on both sides, and open lines of communication

are vital. A patient’s relationship with his or her doctor is akin to a complex commitment; the doctor is half of the ticket to good health, and both sides have to put up with each other’s idiosyncrasies.

On the other hand, patients can try not to turn off their doctors. Several years ago, a group practice of four rheumatologists rated their combined 25 active

lupus patients in terms of how much they liked or disliked them, and the same

5 patients were rated as ‘‘most disliked’’ by all four physicians. A psychiatrist
You Can Help Conquer Lupus

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was brought in and found that the 5 disliked patients displayed more hostility, anxiety, depression, immaturity, and uncooperative behavior patterns than the

other 20 lupus patients. This group also had a tendency to doctor shop; in other words, they did not stop with a second opinion—they got ten opinions in all

specialties. Anxiety, depression, and even anger are normal reactive emotions

to an illness like lupus. But there are times when the doctor should be trusted; mutual trust and cooperation are vital.

Fear and Anxiety

JoAnn was told she had lupus by her doctor, who seemed at the time very

busy and distracted with other things. She had many questions to ask,

blurted a few out, and did not want to bother him further. She knew that

sun exposure was bad for her but did not know how much sun she could

have at any one time, so she made up her own treatment. JoAnn rarely

went outside. She bought a sunscreen that was the wrong strength and did