Fibromyalgia -- a guide for patients
                          David A. Nye MD, 13 Aug 95


    What is fibromyalgia?

        Fibromyalgia is a common and disabling disorder affecting 2-4%
        of the population, women more often than men.  Despite the
        condition's frequency, the diagnosis is often missed.  Patients
        with fibromyalgia usually ache all over, sleep poorly, are stiff
        on waking, and are tired all day.  They are prone to headaches,
        memory and concentration problems, dizziness, numbness and
        tingling, itching, fluid retention, crampy abdominal or pelvic
        pain and diarrhea, and several other symptoms.

        There are no diagnostic lab or x-ray abnormalities, but a
        physician can confirm the diagnosis by finding multiple tender
        points in characteristic locations.  Fibromyalgia often runs in
        families, suggesting an inherited predisposition.  It may lie
        dormant until triggered by an injury, stress, or sleep
        disturbance.  It is closely related to the chronic fatigue and
        irritable bowel syndromes.  Some have suggested that these are
        all just different facets of the same underlying disorder.


    What causes it?

        Fibromyalgia has mistakenly been thought to be either an
        inflammatory or a psychiatric condition.  However, no evidence
        of inflammation or arthritis has been found, and it is now
        believed that depression and anxiety when present are more often
        the result than the cause of fibromyalgia.

        There is better evidence that fibromyalgia is due to an
        abnormality of deep sleep.  Abnormal brain waveforms have been
        found in deep sleep in many patients with fibromyalgia.
        Fibromyalgia-like symptoms can be produced in normal volunteers
        by depriving them of deep sleep for a few days.  Low levels of
        growth hormone, important in maintaining good muscle and other
        soft tissue health, have been found in patients with
        fibromyalgia.  This hormone is produced almost exclusively in
        deep sleep, and its production is increased by exercise.

        I should point out though that while this is my personal
        favorite among the theories of the cause of fibromyalgia, there
        are several other viable ones, and at this time there is
        probably not a majority of fibromyalgia researchers that
        supports any one theory.


    How is it treated?

        Taking medication by itself has relatively little effect on
        fibromyalgia symptoms.  Successful treatment requires active
        involvement of the patient in his or her care, including:

        1) Medication to improve deep sleep.

        2) Regular sleep hours and an adequate amount of sleep.

        3) Daily gentle aerobic exercise.

        4) Avoidance of undue physical and emotional stress.

        5) Treatment of any coexisting sleep disorders.

        6) Patient education.

        If any of these steps are omitted, the chance of significant
        improvement is greatly reduced.


    Medications

        A number of medications have been used to improve sleep in
        fibromyalgia.  The oldest of these is amitriptyline (Elavil), a
        medication first used to treat depression.  Amitriptyline and
        related medications probably work by improving the quality and
        depth of deep sleep rather than by any effect on mood.  As
        amitriptyline has a number of bothersome side effects, such as
        weight gain, dry mouth, and fuzzy-headedness, I rarely try it
        first.  Other often-prescribed medications with less bothersome
        side effects include trazodone (Desyrel), diphenhydramine
        (Benadryl), cyclobenzaprine (Flexeril), alprazolam (Xanax),
        carisoprodol (Soma), and 5-hydroxytryptophan.

        Medication is started at a low dose and gradually increased
        until you sleep well at night and feel good during the day,
        encounter unacceptable side effects, or reach the prescribed
        maximum dose.  Starting low and slow helps minimize initial
        side effects such as dizziness and morning grogginess.  By two
        to four weeks, most patients find that the side effects are
        settling down and the fibromyalgia symptoms are starting to
        improve.

        It often takes a lot of fiddling with the dose to get it
        exactly right, and it frequently will be necessary to try
        several medications in succession or sometimes in combination.
        Some patients find that certain of these medications cause
        stimulation rather than sedation, as if one has had too many
        cups of coffee.  When this "paradoxical effect" occurs it will
        be necessary to switch to another medication.  The medication
        may become less effective after a period of time and the dose
        may then need to be increased slightly.  Most patients will
        need to continue on medication indefinitely.

        There are several herbal and other "alternative" remedies that
        some patients feel are helpful.  While I can't recommend them
        simply because they haven't been adequately studied for
        efficacy or long term harm, I don't discourage patients from
        using them if they find them helpful.


    Regular sleep

        Patients with fibromyalgia must get to bed by the same time
        every night and get enough sleep.  Staying up just one hour
        late may cause an exacerbation that lasts for several days.
        Many patients with fibromyalgia have exacerbations triggered by
        the change over to or from Daylight Savings time.  Try to make
        the switch in fifteen minute increments every few days instead
        of by one hour overnight.  I have had no success getting
        patients truly feeling well who work off shifts that prevent
        them from having a consistent bedtime or require that they
        sleep during the day.


    Exercise

        Daily gentle aerobic exercise is very important.  While patients
        who try to do too much exercise too soon or of the wrong type
        will make themselves temporarily worse, most patients who don't
        begin a daily aerobic exercise regimen will never notice much
        improvement.  Aerobic exercise is defined as exercise that gets
        your heart rate up to a target heart rate for the duration of
        the exercise period.  Heart rates are measured in beats per
        minute.  It is accurate enough for our purposes just to take
        your pulse for 6 seconds and multiply by 10.  The aerobic
        target heart rate is calculated from the following formula:

            (220 - age - rhr) x .6 + rhr

        where age is your age in years and rhr your resting heart rate,
        determined by taking your pulse when you wake up but before
        getting out of bed.  A good place to feel your pulse is at the
        wrist turned palm up, next to the large bone on the thumb side
        at the end of your forearm.  If you are exercising hard enough
        you should be able to feel your heart beating and can just count
        that.  For most people, the aerobic target heart rate is at
        about the point where they can no longer sing but can still talk
        comfortably.

        Exercise seems not to work through conditioning of muscles but
        rather through a direct, possibly hormonal effect on pain and
        sleep, which explains why you don't need to exercise painful
        muscles for the pain in them to decrease.  Daily exercise is
        essential.  Patients who have been exercising regularly and
        then miss a day usually find that their fibromyalgia symptoms
        are significantly worse for the next day or two.

        The kind of exercise is unimportant.  Just make sure to pick
        something that doesn't make you hurt worse.  It may take trying
        several different kinds before finding one or more types that
        agree with you.  Popular kinds include walking, a water
        exercise program, regular or exercise bicycles, other exercise
        equipment, and *gentle* aerobic dance.  Jogging, vigorous
        aerobic dance, and weight lifting tend not to very good
        choices.  If your pain is mainly in your legs or back, exercise
        just your arms or try exercising in the water.

        While many patients insist that they get plenty of exercise at
        work, doing housework, or in their yard, it is rarely the right
        kind.  Effective exercise must result in a sustained elevation
        of the heart rate, and these incidental kinds of exercise are
        usually stop and go and may instead increase your pain.  You
        need to set aside a time specifically for daily exercise.

        Particularly if you are out of shape, start out with just 3-5
        minutes of exercise and gradually increase as tolerated,
        shooting for twenty to thirty minutes.  Take a few minutes to
        stretch your muscles, then start out slowly, increasing to full
        speed after a minute or two.  Slow down again for the last
        minute or two and repeat the stretches.  There are five
        recommended stretches, each done for 20 seconds a side.  They
        should be gentle and painless.  Hold onto a tree or post for
        support for #s 3-5:

        1) Shrug your shoulders in a circular motion.

        2) Reach your arm over your head and bend to the opposite side.

        3) Bend forward with your legs straight.

        4) Pull your foot towards your buttock while standing on the
        other leg.

        5) With your feet flat on the ground and one foot ahead of the
        other, lean forward, bending just the front knee.

        Exercise is most effective if done in the late afternoon or
        early evening.  If you absolutely can't do it then, exercising
        earlier in the day is better than not exercising at all, but
        you will probably need to exercise longer for the same effect.
        Don't exercise just before bed as this may interfere with
        sleep.

        Some patients find that exercise provides an immediate benefit,
        making them feel more alert and comfortable for several hours.
        If you experience this effect, you may want to try exercising
        on awakening and at noon as well.  Some patients for whom this
        works may not need medication.

    Avoid physical and emotional stress

        Too much physical activity of the wrong kind will make you feel
        worse.  Rather than doing housecleaning, yard work, or other
        physical activity all on one day, break up the task so that you
        do a half hour or an hour every day until it is done.  While it
        is difficult to learn to do this, it is essential that you be
        able to sense when you have reached your limit and stop.  By
        pacing yourself, you will be more productive overall.  You need
        to be able to say no to family and friends when you are not up
        to some outing or other activity.  Don't take on extra
        responsibilities if you can avoid it.

        Stress also worsens fibromyalgia symptoms.  If you have ongoing
        problems with depression or anxiety, consider seeking help for
        them from your family doctor or a psychiatrist.  Anxiety and
        depression may arise as symptoms of fibromyalgia and in turn
        cause insomnia, leading to worsening of the underlying problem.
        Relaxation techniques or a chronic pain program can also help
        lower your stress level and are of proven benefit in treating
        fibromyalgia.

    Treat other sleep disorders

        Several other sleep disorders besides insomnia may aggravate
        fibromyalgia.  Almost half of men with fibromyalgia and some
        women have obstructive sleep apnea.  In this condition the
        patient snores loudly and has periodic pauses in breathing
        after which he starts breathing again with a snort.  Periodic
        limb movements of sleep is a condition in which patients jerk
        or kick every 30 to 90 seconds for long periods during the
        night.  Patients may be completely unaware of either of these
        conditions until the spouse complains.  Not only will it be
        difficult to get fibromyalgia symptoms to improve without
        treating other sleep disorders, but if sleep apnea is left
        untreated it may lead to accidental death or injury as well as
        early strokes or heart attacks.  Be sure to tell your physician
        about these problems if you notice them.

        Other common sources of repeated sleep disturbance are a
        spouse's snoring and young children.  If the spouse drinks
        alcohol in the evenings or is overweight, then avoidance of
        alcohol after supper or weight loss may eliminate snoring.
        Avoiding sleeping on the back will often help.  At the very
        least, the patient can wear earplugs.  Children are harder to
        put off but fortunately most soon outgrow their need for care
        at night.


    Miscellaneous factors

        It is important to avoid prescription tranquilizers and
        sleeping medications of the benzodiazepine group.  While these
        may help you get to sleep, they suppress deep sleep and
        therefore often make fibromyalgia symptoms worse the next day.
        Alcohol and narcotic pain medications taken in the evenings
        have the same effect on deep sleep and should be avoided.  Some
        patients have noticed that certain foods may trigger
        fibromyalgia symptoms much as they may migraines.  Some have
        found that a diet low in fats and simple sugars helps.  If you
        suspect that some food make you worse, try avoiding it and see
        if that makes a difference.

        Patients with fibromyalgia should probably give up caffeine
        completely as even one cup in the morning can sometimes disrupt
        sleep at night and may also directly increase muscle pain and
        headaches.  If you are drinking more than a cup a day you
        should taper yourself off caffeine-containing beverages over
        two weeks or so to minimize withdrawal symptoms such as
        headaches.


    Support and education

        Patients who make the effort to learn as much as possible about
        this disorder usually do better than those who don't.  I
        recommend that you keep this handy and re-read it periodically.
        Fibromyalgia sufferers often elicit less sympathy and support
        than they deserve from family, friends, and employers because
        of the lack of outward evidence of disease.  Many have been
        told by physicians that there is nothing wrong with them or
        that it is "all in your head" which can be very demoralizing.
        For these reasons, and just because it is good to know that you
        are not alone, attending a support group can be valuable.
        There are local chapters in most areas now of the Fibromyalgia
        Network.  This organization also produces a newsletter worth
        subscribing to.  Contact them at:

                Fibromyalgia Network
                PO Box 31750
                Tucson, Az. 85751-1750
                info line:  (520) 290-5508
                fax:  (520) 290-5550

        For those of you with internet access, alt.med.fibromyalgia, a
        Usenet newsgroup devoted to fibromyalgia, is a great place for
        information and support.


    Staying in remission

        While fibromyalgia is not curable, most patients with a little
        work can make it to the point where they feel substantially
        better most of the time.  Even with good results from treatment
        however brief relapses are common, perhaps caused by staying up
        as little as one hour late one evening, skipping exercise, a
        disruption in your routine, increased stress, a storm front
        moving in, or often for no apparent reason.  You will do best
        if you "give in to it" when this happens and try to get extra
        rest.  Ibuprofen or naproxen and hot baths may help at these
        times.  If at all possible, try not to stop exercising when
        this happens, even if you have to back off on the amount a
        little.  Once you have had a period of feeling relatively well,
        it should be possible to get you back to that point again by
        identifying what derailed you and correcting the problem.


    The fibromyalgia tender points

        To qualify for a diagnosis of fibromyalgia, patients must ache
        all over and have tenderness in at least 11 of these 18 spots
        when 4 kgs. of pressure are applied.

        __                 __
       /  \               /  \        Location of FMS tender points:
      |    |             | OO |
      |    |             | __ |
       \__/               \  /        1) Attachment of neck muscles at
        11                 --            the base of the skull
     _2_||_2_           _2_88_2_
    /        \         /        \     2) Midway between neck and shoulder
   |   3  3   |       |          |
   |          |       |    99    |    3) Muscle over upper inner shoulder
   | |      | |       | |      | |       blade
   | |      | |       | |      | |
   | |      | |       | |  /\  | |    4) 2 cms below side bone at elbow
   | |      | |       |_| /  \ |_|
   |@|      |@|       | |      | |    5) upper outer buttock
   4 |\    /| 4       | |\    /| |
   | |/    \| |       | |/    \| |    6) Hip bone
   | ||5  5|| |       | ||    || |
   | |6    6| |       | |6    6| |    7) Just above knee on inside
   | || )( || |       | || /\ || |
   ( )| || |( )       ( )| || |( )    8) Lower neck in front
      | || |             | || |
      | || |             | || |       9) Edge of upper breast bone
      |-77-|             |@77@|
      | || |             | || |
      | || |             | || |
      | || |             | || |
      | || |             | || |
     _| || |_           _| || |_
    (___/\___)         (___/\___)



    How to find a fibromyalgia specialist

        If you are not one of the lucky few whose primary doctor is
        knowledgeable about fibromyalgia or at least willing to work
        with you and learn about it, you will need to see a
        fibromyalgia specialist.  Unfortunately, finding one is often
        difficult.  They can be found in many different specialties.
        Most are rheumatologists or physiatrists (physical medicine
        rehabilitation specialists), but you can't assume that any
        given rheumatologist or physiatrist will be able to help.  Some
        are internists, anesthesiologists, or neurologists.

        The best way to find a fibromyalgia specialist is to get a
        referral from the Fibromyalgia Network (see above) which keeps
        a list of recommended doctors and also go to a local
        fibromyalgia support group meeting and ask for recommendations.
        It is best to do both because the FMNet list is incomplete.
        Those of you out there who already have good fibromyalgia
        specialists please let the FMNet know.  A fibromyalgia
        specialist will be able to perform a tender point exam (without
        which it is impossible to make the diagnosis), will tell you
        that it is not possible to cure fibromyalgia but that most
        patients can be helped substantially, and will appear to enjoy
        treating it.

David Nye MD (nyeda@uwec.edu), Midelfort Clinic, Eau Claire, WI

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