Coping Successfully with Fibromyalgia
By Author: Robert Bennett, Glenn McCain •
March 15, 1995
Abstract: Fibromyalgia is characterized by pain in at least 11 of 18 locations on the body and overall fatigue. The pain differs from tenderness because of the burning or stiffness that can accompany it. The condition can be treated with a supervised exercise program that includes walking or swimming.
Patients with fibromyalgia hurt all over. What they need from you is an understanding of their illness, a willingness to try a combination of therapeutic approaches, and a positive attitude toward the outcome.
The cause of fibromyalgia remains elusive, and the syndrome is still considered a cluster of signs and symptoms rather than a distinct disease entity. But the pain these patients feel is real, as is their need for empathetic -- and informed -- medical attention and care.
Patients with fibromyalgia may be among the most trying ones you face. Although you cannot cure them, a combination of approaches -- exercise, medication, physical therapy, relaxation, and other behavioral interventions -- can help them cope with their illness and lead productive lives. You can help them even more by educating them about their illness, offering counseling, and putting them in touch with support groups. Those with the most debilitating illness will need to be referred to comprehensive rehabilitation or pain control programs.
The following diagnostic and therapeutic pointers are designed to help you focus quickly on the problem and put the patient on the road to pain control and relative wellness. Consider them "18 tender points" about fibromyalgia.
The Best Clue
Fibromyalgia is now a distinct and readily recognized syndrome. The widespread and profound nature of pain throughout the skeleton is the tip-off and helps to distinguish fibromyalgia from chronic fatigue syndrome. Otherwise, there is considerable overlap between the two conditions: About 90% of patients with fibromyalgia report fatigue, and either pain or fatigue may be the predominant complaint.1
No imaging study or blood test for fibromyalgia is available, but the diagnostic criteria developed by the American College of Rheumatology in 1990 are now well-accepted. The criteria state that in fibromyalgia, 11 of 18 identified anatomic sites (nine paired sites) are painful to palpation.2 The rub, quite literally, is that the evaluation is not entirely an objective one.
How Tender Is a Tender Point?
The 18 identified tender points are generally in areas where muscles attach to ligaments or bone. At these sites there is more likely to be stress on the muscles. Apply just enough pressure -- about 4 kg -- to blanch your thumbnail. The diagnosis requires that the patient feel pain, not just tenderness, when you apply that amount of pressure. Thus, it's important to understand each patient's sense of what feels tender and what feels painful.
If you didn't learn the examination technique in medical school, consider attending a postgraduate course. Or you can consult a rheumatologist in your area.
In conducting the examination, it helps to palpate sites other than the 18 tender points. In some people almost any muscle can be painful, but there is usually less sensitivity over the muscle belly than over its bone/tendon insertion. This observation is sometimes used to define "control" points. Don't categorically rule out fibromyalgia if a patient has, say, only eight identifiable painful tender points but widespread pain elsewhere. The pain itself may vary from burning or radiating to sore, stiff, aching, or gnawing.
To Sleep, but Not to Rest
Because sleep disorders may often be associated with fibromyalgia, a sleep history is a vital part of your information gathering procedure. While some patients experience disturbed sleep and sleep deprivation, others sleep through the night but wake up feeling unrefreshed. Nonrestorative sleep is a good clue to fibromyalgia.
Patients with fibromyalgia may also have primary sleep disorders such as sleep apnea or restless legs syndrome. The latter may respond to treatment with clonazepam* or carbidopa/levodopa.* Diagnosis and treatment of any concomitant sleep disorder may enable your patients to cope more successfully with their fibromyalgia.
What Else to Look For
Other symptoms that may be reported by patients with fibromyalgia include
Headache, such as tension headache or migraine
Irritable bowel syndrome
Changes in the patient's mood or thought, including clinical depression, anxiety, or panic disorder(**)
Difficulty in concentrating
Temporomandibular joint syndrome
Numbness and tingling that don't follow a dermatomal pattern
A reported sensation of swelling or boating, even though swelling is not physically evident on examination.
Cap Off a Thorough History
In most cases, fibromyalgia is interfering in some way with the patient's quality of life. Ask about marital problems, especially those that revolve around the patient's pain. Also inquire about work experience, including absenteeism. Any significant life stress can exacerbate the problem.
Remember the Probabilities
Keep in mind that the typical patient with fibromyalgia is a woman, most likely white, between 20 and 50 years of age at the time of onset. For reasons not currently known, women with fibromyalgia outnumber men by as much as 20 to 1. Fibromyalgia is seen less commonly in teenagers and the elderly. Some investigators have suggested that psychological stress resulting from physical or sexual abuse may be an etiologic factor in fibromyalgia.3
A recent study showed an overall 2% prevalence of fibromyalgia in the population of Wichita, Kan.4 But fibromyalgia was much more common in women (3.4% prevalence) than in men (0.5%). And in this study, older women had the highest prevalences of fibromyalgia -- 5.6% (aged 50-59), 7.1% (60-69), 7.4% (70-79), and 5.9% (80 and older).
What to Rule Out
Many patients who are ultimately diagnosed with fibromyalgia have been through extensive and expensive workups. A complex workup in search of serious rheumatic diseases such as systemic lupus erythematosus, rheumatoid arthritis, or Sjogren's syndrome is not likely to be worthwhile. These conditions, if present, will probably be clinically obvious and either predate or accompany fibromyalgia. If a patient has fibromyalgia and no clear evidence of another rheumatic condition, that patient is unlikely to have the condition.
On the other hand, fibromyalgia often occurs concomitantly with serious rheumatic disorders. About one third of patients with lupus, about 25% of those with rheumatoid arthritis, and up to 50% of those with Sjogren's syndrome also have fibromyalgia. It's important to recognize the fibromyalgia component of those diseases, as the fatigue, achiness, and pain of fibromyalgia may mimic the symptoms of the systemic disease. In these patients, it is inappropriate to treat a flare-up of fibromyalgia with high-dose corticosteroids or other powerful drugs. Also consider such concomitant disorders as psoriatic arthritis, which need to be addressed on their own merits.
Appropriate screening tests might include a CBC, ESR, a thyroid function test to rule out hypothyroidism, whatever screening for cancer appears warranted by the symptoms, and screening for a major affective disorder. The differential diagnosis also includes polymyalgia rheumatica and polymyositis.
Sort Out Depression
People with fibromyalgia were once thought to have masked depression or somatization disorder. Studies now indicate that about 20% of patients with fibromyalgia currently have major depression and that the lifetime incidence of major depression in fibromyalgia patients is 45%. By comparison, in the general population the current incidence of major depression is 10%, and the lifetime incidence is about 25%.
Thus, the majority of fibromyalgia patients you see in your office are not currently depressed. In others, depression may be part of the presenting picture, although patients are most likely to complain primarily of pain and fatigue. Some will show increased anxiety, usually related to the physical limitations and life disruptions caused by their illness.
Whether depression precedes, accompanies, or follows the onset of fibromyalgia, the two components are separate. In other words, fibromyalgia will remain after the depression is treated. But when patients are less depressed, they may be better able to deal with their fibromyalgia.
Recognize the Spectrum of Illness
Fibromyalgia may range from mild to moderate to severe. For example, a patient who has mild illness may respond to low doses of tricyclic antidepressants, continuing to work and to function well in most if not all spheres of living. The person with moderate fibromyalgia is probably having trouble in one or two areas of daily life -- perhaps absenteeism at work or marital difficulties because of miscommunication over pain issues. These patients may not readily respond to education or physical rehabilitation. At the extreme is the patient with maladaptive pain behavior and/or a personality disorder, who can be very irritating, time-consuming -- and memorable -- to the doctor. These patients have essentially stopped living productively and may be severely decompensated. They need to be referred to a psychologist, psychiatrist, or other counseling professional who has an interest in chronic pain, or to a pain center that offers a multidisciplinary program. A program of cognitive restructuring may help them take a fresh look at life.
Exercise: Keystone of Treatment
A supervised, systematic exercise program is an essential part of any treatment regimen for fibromyalgia and one of the most useful recommendations you can offer. Studies have shown that fibromyalgia-like symptoms can be induced by artificially disrupting sleep in healthy subjects. In highly trained athletes, however, the achiness, pain, and fatigue do not develop, suggesting that physical conditioning helps to minimize the symptoms of fibromyalgia.
Patients with fibromyalgia should avoid impact-loading exercises such as jogging, basketball, or any other activity that involves jumping up and down. Ideal exercises include walking, using a stationary cycle or treadmill, or swimming. A useful device known as an Aquajogger is a buoyancy belt that fits around the chest and allows the patient to stand up in a swimming pool and either walk or run against the resistance of the water.
A good goal is to aim (ultimately) for 40 minutes of exercise three times a week. For a typical middle-aged person, the pulse rate should rise during exercise to 85% of the target heart rate for age -- for most adults, approximately 120-150 beats per minute. People who aren't capable of that level of activity may try to work up to it gradually over a period of six months, starting with exercise sessions of no more than 5-10 minutes.
Supervision and positive reinforcement are essential components of any exercise program. Remind patients that regular exercise is important and should become a lifelong habit. Some will try to use the pain of their fibromyalgia as an excuse not to do anything physically; advise them that this will only make their pain worse over time.
The Importance of Pacing
Patients with fibromyalgia also need to learn how to pace themselves. Certain physical activities will take longer than they used to, and some people who were previously very active may have to cut back and make choices. At the same time, they should try to keep doing the things that have given them the greatest enjoyment.
A couple of days of strenuous activity may need to be followed by a couple of days of taking it easy. Some patients may be able to go skiing or hiking a few times during the season -- not every weekend -- and really enjoy it as long as they take time to recuperate afterward. Others, especially those who have been used to leading active, busy lives, will push themselves unrealistically. They need to be counseled to slow down and to take days off from physical activity.
Consider asking patients to keep a daily log or journal of their activities and symptoms. This may help them to understand how periods of strenuous activity or rest affect their physical and mental sense of well-being.
Nonsteroidal anti-inflammatory drugs can help take the edge off severe pain but are generally not very helpful for the chronic pain of fibromyalgia. Because of their gastrointestinal side effects, they should be used with great care in elderly patients. Corticosteroids are generally to be avoided, although some clinicians use a short trial of low-dose steroids when attempting to rule out polymyalgia rheumatica.
Low doses of tricyclic antidepressants, taken at bedtime, may help ease pain and enhance sleep. The choices include amitriptyline HC1,* doxepin HC1,* imipramine HC1,* desipramine HC1,* and trazodone HC1.* In deciding which antidepressant to use, consider trying them out one at a time for a short (5-10-day) period to determine which is most helpful. Cyclobenzaprine HC1 is structurally similar to the tricyclics and has been used to treat fibromyalgia; the usual dose is 10 mg at bedtime.
Do not use full antidepressant dosages unless you are treating concomitant depression. For patients with fibromyalgia and depression, the selective serotonin reuptake inhibitors (SSRIs) -- fluoxetine HC1, sertraline HC1, paroxetine HC1 -- as well as venlafaxine HC1 offer an alternative to the tricyclics, though they may prove to be too stimulating and may exacerbate sleep disturbances. Some clinicians manage the problem by prescribing an SSRI in the morning and a tricyclic at night. Allow 2-4 weeks to determine whether a selected antidepressant is having a beneficial effect. Over time, the benefits of the antidepressant may wane.
Drugs Mentioned in This Article
(Elavil, Endep) Carbidopa/levodopa
(Klonopin) Cyclobenzaprine HCL
(Flexeril) Desipramine HCL
(Norpramin, Pertofrane) Doxepin HCL
(Sinequan) Fluoxetine HCL
(Prozac) Imipramine HCL
(Janimine, Tofranil) Paroxetine HCL
(Paxil) Procaine HCL
(Novorain) Sertraline HCL
(Zoloft) Trazodone HCL
(Desyrel) Venlafaxine HCL
(Effexor) effect between antidepressant and placebo.5
The diminishing returns seen with antidepressant therapy emphasize the need to maintain other aspects of the treatment program, especially exercise, education, and psychosocial support.
Physical Therapy: a Little Goes a Long Way
Physical therapy is often reserved for flareups rather than continuous treatment of fibromyalgia. Gentle massage, heat, stretching, and other manual modalities can help, but some physical therapy programs may work patients too hard. Strenuous massage, for example, will make the pain worse. A technique known as spray and stretch may ease specific areas of localized pain; it involves stretching out a muscle group and spraying it with a vapocoolant spray such as Fluori-Methane.
Ideally, the therapist will have some experience working with fibromyalgia patients. For the physician, a good working relationship with a physical therapist is important so that the program can be structured to the patient's maximum benefit. Long-term physical therapy is not recommended and is expensive as well.
When to Try Trigger Point Injections
Selective use of trigger point injections is helpful for patients who have severe pain in a specific area. For instance, patients may complain of pain in an area of the buttocks that keeps them from exercising, or pain in the trapezius area of the shoulder that wakes them up when they roll over in bed. Injections may also help the patient who has had a significant flare-up or experienced trauma. Patients should not look to injections as the principal method of treatment.
The injections are typically given with 1% procaine HCL. Corticosteroid injections are not helpful. The beneficial effects of the injection usually begin about 2-5 days afterward and last 2-4 months. An area that has been injected is usually not revisited by the needle for at least three months.
A Helping Hand
People with fibromyalgia are not going to be cured, making it essential for you to adopt a chronic treatment philosophy. Understand that patients will keep coming back to you, but also understand that they can be helped. Convey to your patients the message that they need to become experts at managing their own illness and to take responsibility for getting enough exercise and abiding by other parts of the treatment program.
Having a specific diagnosis helps patients put a name to their pain and may ease fears of more serious conditions such as malignancy or rheumatoid arthritis. Point out that fibromyalgia does not cause damage to bones or joints and is not a progressively degenerative disease. (There is increasing evidence that many fibromyalgia patients develop an augmented response to pain sensations due to a "rewiring" of the CNS -- so -- called neuroplasticity.)
It's difficult to provide comprehensive help in a brief office visit. A useful step is to give patients literature and put them in touch with support groups. The fibromyalgia patient network in this country is an active one.
Talking to spouses and other family members is also beneficial. They may have problems believing that the patient is really ill and dysfunctional when he or she doesn't look much different from before.
The Power of Empathy
Never underestimate the power of empathy. By and large, patients with fibromyalgia will respond positively to someone who shows genuine interest and concern. Conversely, patients readily pick up signals that the physician is angry, frustrated, and doesn't want to spend time with a problem like fibromyalgia.
Patients need to be seen on a regular basis, tapering off to 2-3 times a year once a treatment program is in place. Blood tests once or twice a year will enable you to check for side effects of medications.
Current research is trying to find a laboratory test that will be helpful in diagnosing flbromyalgia. Fibromyalgia's association with chronic fatigue syndrome and myofascial pain is also getting closer scrutiny.
Other researchers are looking into whether injections of growth hormone can be helpful; preliminary results from a study at Oregon Health Sciences University, Portland, show beneficial results for a subset of fibromyalgia patients who were also deficient in growth hormone. But growth hormone therapy is not viewed as a potential cure for fibromyalgia.
Finally, physicians in a variety of disciplines beyond rheumatology -- neurology, physiatry, orthopedics, anesthesiology, psychology, psychiatry, and sleep study, in addition to primary care -- are showing increased interest in fibromyalgia. As knowledge of fibromyalgia and experience in managing it spreads, the likelihood inereases that you will be able to coordinate an effective plan of care with your colleagues in the community.
Diagnostic Criteria for Fibromyalgia
Widespread Pain (Present for at Least 3 Months)
Pain is considered widespread when it is present on both the left and right sides of the body and above and below the waist.
Axial skeletal pain (cervical spine, anterior chest, thoracic spine, or low back) must also be present. Shoulder and buttock pain is considered as pain for each involved side. "Low back" pain is considered lower segment pain.
On digital palpation (approximate force of 4 kg), pain -- not just tenderness -- must be present in at least 11 of 18 tender-point sites:
Occiput Bilateral, at the suboccipital muscle insertions
Low cervical Bilateral, at the anterior aspects of the intertransverse spaces at C-5 to C-7
Trapezius Bilateral, at the midpoint of the upper border
Supraspinatus Bilateral, at origins, above the scapula spine near the medial border
Second rib Bilateral, at the second costochondral junctions, just lateral to the junctions on upper surfaces
Lateral epirondyle Bilateral, 2 cm distal to the epicondyles
Gluteal Bilateral, in upper outer quadrants of buttocks in anterior fold of muscle
Greater trochanter Bilateral, posterior to the trochanteric prominence
Knee Bilateral, at the medial fat pad proximal to the joint line.
For a diagnosis of fibromyalgia, both criteria (widespread pain and tender-point pain) must be satisfied. The presence of a second disorder does not exclude the diagnosis of fibromyalgia.
Text adapted with permission from Wolfe F, Smythe HA, Yunus MB, et al: The American College of Rheumatology 1990 criteria for the classification of fibromyalgia: Report of the Multicenter Criteria Committee. Arthritis Rheum 1990;33:160-172.
(*) Unlabeled use.
(**) See "Is it normal worry or pathologic anxiety?" "Treating anxiety: A collaborative approach," and "Depression: Practical tips for detection and treatment," Patient Care, November 15,1994, pages 26, 36, and 60, respectively.
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