Fibromyalgia: 1993 A Perspective for Patients

George W. Waylonis, M.D.
Clinical Professor PM&R The Ohio State University
Medical Director, Physical Medicine Riverside Methodist Hospitals
3535 Olentangy River Rd
Columbus, Ohio 43214
614-566-5273

Introduction:

Fibromyalgia is also known as Fibrositis, Myofascial Pain, Rheumatism and Tension Myalgia. It is a condition that presents as painful muscles at a young age. The majority of patient with the condition will experience their first symptoms between ages 20 and 38 although it does occur in children.

Let me state at the outset that I have Fibromyalgia and feel I understand the condition and the problems of individuals with Fibromyalgia experience on a very personal basis. My father had the condition and I passed it on to my son. Individuals with the condition experience pain that may come and go or be constant. It is also often associated with recurrent problems with tendons and other soft tissues but the joints are not involved. Most of the individuals with Fibromyalgia note pain between the shoulder blades, head and neck aches, painful chest muscles, low back pain. Individuals with Fibromyalgia describe a sensation of painful knots in their muscles or a sensation of a hot burning knife were being pressed into their bodies. There may also be associated dull aches in the shoulder, thigh and hip muscles.

There are other related conditions that occur commonly in individuals with Fibromyalgia including: fatigue, tempromandibular joint dysfunction (TMJ), mitral valve prolapse (MVP), tension headaches, spastic colon (irritable bowel syndrome), hypothyroidism, & kneecap pain (chondromalacia). Sleep disturbance is described in 80-90% of individuals with Fibromyalgia by age 50; the disturbance is a problem of sleeping all night rather than one of falling asleep. Patients describe awakening after 5-6 hours sleep and then being unable to go back to sleep. In addition, painful tendons (bicipital tendonitis, lateral epicondylitis (ie.tennis elbow) , dequervains tenosynovitis, achilles tendonitis, and plantar facitis are much more common in individuals with Fibromyalgia. Many individuals with Fibromyalgia are allergic, have asthma, or have a family history of allergy.

It is important to point out that not every one with these listed conditions has Fibromyalgia, only that they occur more commonly in individuals with Fibromyalgia. There is no evidence of an increased frequency of heart disease (other than MVP), stroke, cancer or other hypertension occurring in individuals with Fibromyalgia.

Although Fibromyalgia usually becomes symptomatic in the 20's and 30's, early signs of it may appear during in childhood usually as increased problems with growing pains and sore muscles after playing sports. Our research has suggested that Fibromyalgia is often inherited on an autosomal dominant basis; that is to say that only one parent need only have the condition to pass it on to 50% of the children born to that parent. It is estimated that 6-9% of individuals have Fibromyalgia.


Diagnosis:

How do we make a diagnosis of Fibromyalgia? There are currently no laboratory tests available to make the diagnosis so the examining physician must rely on the medical history given to us and the physical findings present on examination.

Palpation of the the muscles will reveal tender points or areas in specific locations. The American College of Rheumatology has established specific criteria to make the diagnosis which include the presence of tenderness in 11 of 18 standard locations. I also look for Dermographism (ability to write on skin) and a positive jump sign (unusual tenderness of the trapezius muscles). Individuals with Fibromyalgia often have a characteristic build: usually lightly built, round shouldered with the body assuming a slouch position as a position of comfort.

Although there are no specific laboratory tests to make the diagnosis, we often obtain a battery of tests (blood and x-rays) to make sure the patient with painful muscles does not have rheumatoid arthritis, lupus, osteoarthritis, or hypothyroidism. Individuals with these four conditions may have symptoms which are similar to those seen in Fibromyalgia. It is important to clearly establish the correct diagnosis before deciding on the type of treatment.

Individuals with Fibromyalgia often have a certain type of personality: most of us (not all) are very neat, perfectionistic, compulsive, organized, time-oriented, tense, precise individuals. We tend to be very compulsive about how we approach our lives and jobs; we are often "bugged" by people who are not as thorough or compulsive as we are. We truly are type "A" individuals! Often those around us will say: "if you could only relax you would have less discomfort." A study in Sweden confirmed this fact: individuals with Fibromyalgia just "don't relax" even when they are in a situation where they could relax. I believe that this tendency to be "tense" develops very early in life, is not likely to change, although some times the use of biofeedback, and other relaxation techniques may help modify some of this tendency.


Common Characteristics of Fibromyalgia:

The symptoms of Fibromyalgia may be intermittent or constant. The severity of the symptoms also varies from individual to individual. Most individuals describe "good and bad" days. In one survey I found that 38% of individuals with Fibromyalgia experienced their first symptoms following a physical trauma (ie. auto accident, job injury, sports injury, surgery).

The condition usually comes in early in life and rarely starts spontaneously in the 50's and 60's. It probably occurs equally in both sexes, although many studies have indicated that women seem to have more problem with the condition than men.

There are three types of factors that seem to cause Fibromyalgia to flare: environmental stresses, physical stresses, and emotional stresses. First let me make it clear: Fibromyalgia is not simply a stress reaction, it is a condition that is not caused by these stresses, but is aggravated by any combination of stress factors.

Most individuals with Fibromyalgia develop a phenomena called jelling or stiffening as they get older. Many patients with Fibromyalgia tell me that they are "more stiff and sore in the morning and have a harder time getting started" than their friends who are of the same age and did the same activities. This phenomena is called jelling because we "set" like Jello. When Jello is first made it is liquid, but after it sets for a few hours, it becomes solid and rubbery; if you warm it up again, it becomes liquid again, but then will return to its rubbery state again. This is exactly the thing that individuals with Fibromyalgia feel in the muscles, especially the day after unusual or vigorous activity.


Environmental Stressors:

Weather change with barometric pressure change, cold drafts, dampness, lighting, and noise are all reported to be aggravating factors. Many individuals with Fibromyalgia identify that certain types of artificial lighting or irritating noises will really set off their muscles. A cold draft from an office air-conditioner, a movie theater, or restaurant may precipitate an acute flare of Fibromyalgia even though we are completely relaxed and having a good time. We find that many individuals with Fibromyalgia develop an early intolerance for swimming in cold water. Most Fibromyalgia patients seek out warm pools and hot tubs. Fibromyalgic individuals will often feel coming weather changes when the barometric pressure starts to drop and find that cold, damp weather, fog, rain and snow then aggravate their symptoms. Many individuals find that trying to camp out will aggravate their symptoms. A change in climate may have some therapeutic effect, but I find that very few individuals with Fibromyalgia are willing to give up friends, families for a warm dry desert climate.


Physical Stressors:

Factors that aggravate Fibromyalgia include working in one place with arms suspended above the work surface, repetitive activities, and remaining in one position for a prolonged period of time, whether it's sitting, standing, or even driving. Infections are stressors that often produce the most profound aggravation of symptoms of Fibromyalgia. Most individuals with Fibromyalgia experience similar reactions to specific activities: we just do not tolerate holding our muscles in a sustained isometric position for prolonged period of time, whether it's typing, playing the piano, doing assembly-like work, operating a vacuum sweeper or cooking at home. Sustained contraction of the shoulder muscles to support our arms in front of us tends to produce pain in the neck, upper back and shoulders that gradually builds and spreads up and down the back.


Emotional Stressors:

Included in this area are all the daily stresses that all of us experience at home, school or work. I find that all patients point to "stress" as the major factor aggravating their Fibromyalgia, and usually mean emotional stress when they talk about stress. Everybody's life has some stress, and many individuals can pretty much sort out the things that really bug them or aggravate their symptoms; the big problem is avoiding or changing the stressful situations!

The hardest stresses to deal with are situations at home or work where the stress goes on for days, weeks or years with little relief in sight. One patient told me: "My mother-in-law moved in with me and she will have to stay with us as long as she lives!" Another patient told me she wasn't sure how she should survive raising her daughter until she moved out or went to college; the daughter was then age 13!

I suggest that my patients try to identify stressors and then divide them into two groups: those that bug me but don't make a difference whether I worry about them or not (i.e., national politics, the weather) and those that I might be able to modify. One recent study pointed out that the most significant stress factor in the work place is the relationship between employees and their immediate supervisor. Now this can be a tough situation to modify; however, I have recommended some patients consider alternate employment to reduce work related stress.


The Cause of Fibromyalgia (Etiology):

What do we know about Fibromyalgia other than to blame our parents and grandparents for passing it on to us? Current research has shown there is most likely an underlying biochemical defect which makes it likely that we will develop Fibromyalgia some time during our lives. The defect is probably there from birth, and like so many non-lethal biochemical defects, often appears in early adulthood.

Recent studies have shown that there is definitely an abnormality of Serotonin and/or the Serotonin Receptors in the nervous system. Serotonin is a chemical responsible for nerve message transmission. Individuals with Fibromyalgia have been shown to have reduced Serotonin levels. Abnormalities of this type are probably also involved in depression and migraine headaches, although there are definite differences between the three conditions.

Fibromyalgia is also very closely related to a condition called Chronic Fatigue Syndrome, and in fact many feel that the two conditions are the same, except that there is a chronic relapsing infection component in CFS.

A group of drugs useful in treating depression called the Tri-cyclic antidepressants (Pamelor, Elavil) and a related muscle relaxant (Flexeril) have been shown to raise Serotonin levels by reducing the rate of break down of Serotonin, which is a normal biochemical process in the body. Other work has suggested that there may be defects in the muscle cells which reduce the amount of oxygen available, hence the aching sensations which are similar to the sensations experienced by the athlete after a sustained anaerobic activity. Research in both the US and Europe has suggested that there are subtle changes present on electron microscopic exam of our muscles.


Treatment:

The most effective treatments for Fibromyalgia are exercise, over the counter pain medications, and avoidance of the stress factors described above. Most patients with Fibromyalgia have seen several physicians about their aches and pains and have been frustrated by being told that "they look so good" and that "all their tests were normal." Some have been through multiple courses of physical therapy, massage therapies, manipulation, trigger point injections, TENS, spray and stretch techniques, acupuncture, pain and stress-management programs and other techniques. Some or all of these techniques may be beneficial for the treatment of exacerbations of Fibromyalgia, but they rarely yield permanent relief of symptoms. Some patients have even undergone neck or back surgery only to be disappointed to find that their symptoms were not completely relieved by removal of a "bulging" disc (note a bulging disc is not the same as a true ruptured disc).

Some individuals with Fibromyalgia become frustrated by their lack of response to conventional and non-conventional treatments. The only group of drugs that have been proved with a scientific study to have some effect on Fibromyalgia is the tri-cyclic group of antidepressants (Elavil, Triavil, Pamelor), which are quite effective for the sleep disturbance component and headaches. Unfortunately these drugs may some have undesirable side effects which include drowsiness, dry mouth, weight gain, & change in bladder tone; however, many patients can be maintained on low doses for years without side effects. Some of the newer anti-depressants such as Prozac and Wellburton do not seem to benefit individuals with Fibromyalgia.

At a recent meeting I asked 150 attendees with Fibromyalgia about their use of Aspirin, Ibuprofen and Tylenol: most used aspirin and Ibuprofen with some benefit (about 30% reduction in symptoms). None reported that Tylenol was their over the counter drug of choice.

There is no research that supports megavitamin therapy or the use of special diets.

Many patients find reduction of their intake of caffeine and nicotine beneficial.


Exercise:

Research from the US, Canada, and Europe has shown that the most effective treatment for Fibromyalgia is a personal exercise program that emphasizes aerobic exercise and some stretching of tight muscles.

It is easy to become addicted to passive treatment (drugs, massage, physical therapy) but it is HARD to really commit to a three- or four-times-a-week exercise program. Several studies have demonstrated that individuals with Fibromyalgia tend to be "deconditioned." It is important to start slowly, and gradually increase the level and intensity of an exercise program and not to "over do it." I personally use a Schwinn Airdyne Exercycle, do sit- ups, push-ups, and stretching exercises. Many find that the use of low- impact aerobic exercise videos is ideal for home exercise. I encourage many of my patients to join a health club with access to supervised use of exercise machines and structured classes.

I have a home hot tub (spa) and find that many individuals with Fibromyalgia really benefit from regular use of a home hot tub.


Occupational Issues:

I recently completed a research project on Fibromyalgia in the work place. Our research has shown that the best-tolerated occupations appear to be those which involve an environmentally stable, in-door, warm, non-drafty location which involves the performance of light, sedentary activities with varied tasks during the work day. Fibromyalgic factory workers may have significant problems with assembly line work, but almost any job can aggravate Fibromyalgia!

I found that "too much of anything" tends to aggravate the symptoms of Fibromyalgia, especially if there are superimposed environmental stresses. Workers with Fibromyalgia are more likely to develop repetitive-motion syndrome because we are much less likely to relax our muscles, even during rest periods, than other workers. Recent reports from Europe and Oregon have shown that Fibromyalgic workers have less strength and endurance than "normal" individuals.


Disability Issues:

I personally would like to emphasize the abilities of individuals with Fibromyalgia. However, physicians dealing with individuals with Fibromyalgia often are asked questions about: 1) Early disability retirement; 2) Industrial compensation claims for fibromyalgia; 3) Requests for work restrictions and limited-duty assignments; 4) Requests for paid medical leave for flares of the symptoms of Fibromyalgia. These issues often arise when Fibromyalgic workers are involved in " High Risk Situations" such as assembly line work, worker and supervisor stress situations, and jobs in adverse environmental situations (cold, damp, noisy, drafty, intense visual stimuli).

Fibromyalgics report that they do best at what is classified as light, sedentary work with variable activities. Some of my patients are able to perform moderate or even heavy work without noting exacerbations based upon work load alone. Those doing computer, VTR, or keypunch activities may complain of work-related muscle problems if these jobs are carried out on a sustained basis without scheduled breaks and job rotation. Proper work station design can be beneficial by helping to reduce stresses resulting from sustained muscle contraction. Jobs requiring night shift work or rotating shifts may be difficult for Fibromyalgic patients because of the tendency to develop sleep disturbances.

I have found that workers with Fibromyalgia do best when they are able to vary their activities during the work day.

As far as disability benefits are concerned, they are likely to be granted very low levels of disability (0 to 5%) for the condition because the condition does not fit standard descriptions of impairment in the AMA Guide to Disability Evaluation. It is very difficult to obtain social security disability for Fibromyalgia.


Post Traumatic Fibromyalgia:

Individuals who develop the first symptoms of Fibromyalgia after motor vehicle accidents are often quite frustrated by the persistence of their symptoms. Most individuals who sustain muscle trauma will recover from their symptoms in 30-120 days. When muscles remain sore for more than six months, one must consider the possibility that they have Fibromyalgia which has been activated by the traumatic event. Dealing with the legal issues often becomes a major source of frustration for the patient, their attorney and their physician.


Developing a Positive Strategy:

I am often asked, "Doctor, how does one learn to live with a condition for which there is no cure? How will I live the rest of my life knowing I will always have Fibromyalgia?"

There is a great deal of interest and research going on to try to develop a better understanding of the underlying biochemical abnormalities producing our condition, but as of this writing there is no quick fix on the horizon.

I have found that the first step in learning to live with Fibromyalgia is to develop a positive attitude about dealing with the condition: those of us with Fibromyalgia need to go ahead with our lives. The condition is not lethal and is not associated with a shortened life span. We do have pain, we have problems when we try to do certain jobs or activities, the weather bothers us, but we have to go on!

We must minimize our attempts to control our symptoms with medications, although I find that the use of aspirin and Ibuprofen is helpful, and many patients benefit from the Tricyclic group of drugs, especially for the associated sleep disturbance.

We must try to modify the stressors in our lives, change jobs if we have to, and make exercise a regular part of our lives. We need to avoid those activities that aggravate our muscles, especially on "bad days," and learn to control our compulsive tendencies to "over do it at home, work, or school." Joining a health club, selecting a few pieces of home exercise equipment, and modification of our stressed out behaviors are the best treatments available at this time.

Finally, we need to educate our families and friends about Fibromyalgia so that they will understand us and our problem. There are local support groups in many cities, and good information sources to which we can subscribe to to help keep current on "what's happening in Fibromyalgia."

Web page design by Bill Jackson, 1996.

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