[Home] [Search] [Medical Forums] [Patient Network]David A. Nye MD
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 patients with
fibromyalgia are now known to be no more depressed or anxious
than those with other chronic, painful, debilitating conditions.
It is now believed that depression and anxiety when present are
more often the result than the cause of fibromyalgia.
There is some evidence that fibromyalgia may be 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
somatostatin, a 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 it's 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 others, and at this time there is probably not a
majority of fibromyalgia researchers that supports any one
theory.
How is it treated?
Fibromyalgia is difficult to treat, not because treatment isn't
usually successful (it is), but because it will take a lot of
work, education, and involvement on your part for it to be
successful. Simply starting the right medication will have
little effect. Successful treatment of fibromyalgia requires:
If any of these five are omitted, significant improvement is
unlikely.
Regular sleep
Patients with FMS must get to bed by the same time every night
and sleep as long as they need to. Staying up just one hour
late may precipitate 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.
Medications
Amitriptyline (Elavil), a medication commonly used to treat
depression, also helps fibromyalgia, probably by improving the
quality and depth of deep sleep rather than by any effect on
mood. When sleep is normalized, the symptoms of fibromyalgia
begin to improve. Patients taking amitriptyline usually don't
note significant improvement until they are on enough to make
them sleep through the night and have a dry mouth throughout the
day. A few patients with fibromyalgia experience no trouble
with sleep an night, but still seem to respond in the same way
to amitriptyline. It is suspected that even though these
patients are asleep, sleep function is not normal, accounting
for their feeling that sleep is not refreshing.
Some morning grogginess should be expected when amitriptyline is
begun. Starting at a low dose and increasing gradually helps
minimize any initial side effects. If you are having lots of
trouble with side effects, go up more slowly. By the end of two
weeks, most patients find that the side effects are settling
down and the fibromyalgia symptoms are starting to improve. It
usually takes a lot of fiddling with the dose to get it exactly
right. The dose that is initially effective may become less
effective after a period of time and it may need to be increased
slightly. Most patients will need to continue on medication
indefinitely.
Almost everyone on enough amitriptyline to help fibromyalgia
gets a dry mouth. Some patients have a paradoxical stimulant
effect from it, with rapid heart beat and some trouble falling
asleep. If these side effects are severe, other medications can
be added to block them. Amitriptyline may also cause a craving
for sweets and weight gain. I recommend you avoid sweets
entirely while on amitriptyline. Exercise will also help to
keep your weight down, as will eating a low-fat diet such as the
Weight Watchers one. Some patients report that such a diet also
helps their fibromyalgia symptoms. Constipation is another
frequent side effect. Magnesium supplements are often helpful
for constipation and may also help fibromyalgia symptoms in some
patients.
Several other medications have been used to treat fibromyalgia,
although none seems to work quite as often as amitriptyline.
These include cyclobenzaprine (Flexeril), diphenhydramine
(Benadryl), and alprazolam (Xanax). These have many of the same
side effects as amitriptyline but they also have shorter
durations of action so side effects tend not to last into the
day as much. None of these other medications cause weight gain
the way amitriptyline does. 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.
Exercise
Daily gentle aerobic exercise is very important. While patients
who do too much exercise too soon or of the wrong kind will make
themselves temporarily worse, most patients who don't begin a
daily aerobic exercise regimen will notice little improvement in
their fibromyalgia symptoms. 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.
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, regular or
exercise bicycles, ski simulators, rowing machines, rebounders,
swimming, 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, consider exercising
just your arms with a Thighmaster or similar equipment.
While many patients insist that they get plenty of exercise at
work, doing housework, or in their yard, this is rarely the
case. These types of exercise are rarely helpful, as they don't
result in a sustained elevation of the heart rate, and often
increase pain and make patients feel worse. You need to set
aside a time specifically for daily excercise.
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:
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 more effective if done in the late afternoon or
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. 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
three times a day instead of just once. Patients who can do
this are the ones most likely to eventually be able to get off
medication.
Exercise seems not to work through conditioning of muscles but
rather through a direct, possibly hormonal effect on pain and
sleep. Patients who have been exercising regularly and then
miss a day usually find that their fibromyalgia symptoms are
significantly worse the next day.
Avoid physical and emotional stress
Exercise is an indispensible component of successful treatment,
but too much physical activity of the wrong kind can precipitate
a relapse. 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. 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
stressful responsibilities if you don't have to. If you have
ongoing problems with depression or anxiety, consider seeking
help for them from your family doctor or psychiatrist in an
attempt to lower your overall stress level. Relaxation
techniques or a chronic pain program can also help lower your
stress level. Fibromyalgia patients must learn to manage their
physical and emotional resources.
Treat other sleep disorders
Several other sleep disorders besides insomnia may aggrevate
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 twitch 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 these
disorders, but if sleep apnea is left untreated it may lead to
accidental death or injury as well as early strokes or heart
attacks.
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 may eliminate snoring. Sleeping
propped up on the side 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.
It is important to avoid prescription tranquilizers and sleeping
medications of the benzodiazepine group. While these may help
you get to sleep, they supress deep sleep and therefore often
make fibromyalgia worse. Alcohol and narcotic pain medications
taken in the evenings have the same effect on deep sleep and
should be avoided. Try not to exercise just before bed, as this
may make it harder to fall asleep. 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 gradually taper
yourself off caffeine-containing beverages over two weeks or so
to minimize caffeine withdrawal symptoms such as headaches.
Support and education
For best results, you need to be actively involved in your
treatment and to have as clear an understanding of this
complicated disorder as possible. I recommend that you keep
this handy and re-read it periodically. Patients with
fibromyalgia often elicit less sympathy and support from family,
friends, and employers than they deserve because of the lack of
outward evidence of disease. Many patients have been told by
other 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, I strongly encourage attending support group
meetings. There are local chapters in most areas now of the
Fibromyalgia Network. This organization produces an excellent
newsletter which is well worth getting. Here's how to contact
them:
Fibromyalgia Network
5700 Stockdale Hwy, Suite 100
Bakersfield, CA 93309
info line: 1-805-631-1950 from 10am-2pm Pacific Time
publication: FM Newsletter (quarterly); $15/yr USA, $17/yr Canada
Conclusion
With a little work, most patients can make it to the point where
they feel good 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 always be possible to get you back to that point again
by trying to identify what derailed you and correcting the
problem.
David Nye, MD * Neurology Dept., Midelfort Clinic, Eau Claire, Wisconsin
Your comments and suggestions are always welcome!
Write to the MARRTC Arthritis Resource Center developer Janet Elizabeth
Horton, BGS at the Fibromyalgia Resource Center.
Last Modified: 5/24/95
[Home] [Search] [Medical Forums] [Patient Network]