A Patient's Frequently Asked Questions about Fibromyalgia
By David Nye, MD
Missouri Arthritis Rehabilitation Research and Training Center
What is Fibromyalgia?
What Causes it?
How is it Treated?
Medications
Regular Sleep
Exercise
Avoid Physical and Emotional Stress
Treat Other Sleep Disorders
Miscellaneous Factors
Support and Education
Remission
Fibromyalgia Tender Points
How to find a Fibromyalgia Specialist
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 tender
points in characteristic locations. Fibromyalgia often
runs in families, suggesting an inherited predisposition.
It may lie dormant until triggered by an infection,
injury, stress, or sleep disturbance. It is closely
related to the chronic fatigue and irritable bowel
syndromes and to migraines. Some have suggested that
these are all just different facets of the same
underlying disorder.
What causes it?
Fibromyalgia was once thought to be an inflammatory
condition and later a psychiatric one, but neither of
these causes now appears likely. No good evidence of
inflammation or arthritis has been found. When depression
and anxiety occur they are more often the result than the
cause of fibromyalgia. Patients with fibromyalgia are no
more likely to be depressed than patients with other
chronic painful disorders such as rheumatoid arthritis.
Spinal fluid levels four times normal of the main pain
neurotransmitter substance P suggest that the pain is not
imaginary.
We still do not know exactly what causes fibromyalgia,
but we know much more than we did a few years ago.
Several good theories have been proposed and much
scientific data gathered. One leading theory links
fibromyalgia with an abnormality of deep sleep.
Fibromyalgia patients often note that not getting enough
sleep or even just staying up an hour late makes their
fibromyalgia symptoms worse the next day. Abnormal brain
waveforms have been found in deep sleep in many patients
with fibromyalgia. Fibromyalgia-like symptoms and tender
points 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. Daily exercise has been found to be an
important part of treatment of fibromyalgia along with
steps taken to improve sleep.
Fibromyalgia is also associated with certain immune
system changes. These do not appear to be of the auto
immune kind seen in some unrelated disorders like
multiple sclerosis or rheumatoid arthritis, but rather
the immune system appears as if fighting a virus. No
virus has been convincingly demonstrated, and the fact
that fibromyalgia does not appear to be contagious (for
example, it is no more common in spouses of affected
patients than in the general population) argues against
an infectious cause.
Experimental disturbance of deep sleep in normal
volunteers causes similar immune system changes,
suggesting that the immune system changes may be
secondary to the sleep disorder. Levels of certain
cytokines, a class of immune system hormones, are
elevated in fibromyalgia. When these same cytokines are
given to patients to treat other disorders, fibromyalgia-
like side effects are common. Putting this all together,
this suggests that fibromyalgia symptoms may be caused by
elevated levels of certain cytokines produced by an
immune system which is not functioning normally because
of a chronic sleep disorder. This explanation is by no
means proven, and several other good theories exist.
Neurotransmitter and endocrine changes occur in
fibromyalgia, particularly involving serotonin and the
pituitary-adrenal axis, but as these same changes can
also be produced by experimental deep sleep deprivation,
they are probably secondary rather than primary. They may
account for some fibromyalgia symptoms, however.
Depression and migraine headaches are associated with low
serotonin levels, for example, and often respond to
medications that boost serotonin.
How is it treated?
With:
1 Medication to improve deep sleep.
2 Regular sleep hours and an adequate amount of sleep.
3 Daily gentle aerobic exercise and stretching.
4 Avoidance of over exertion and stress.
5 Treatment of any coexisting sleep disorders.
6 Patient education.
Medication by itself is of little value in treating
fibromyalgia. Successful treatment demands the patient's
active involvement in treatment as well as lifestyle
changes. Each of the six parts of treatment above is
important. If any one is omitted, the chance of
significant improvement is considerably 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. Although it probably works as well
as any of the other medications, amitriptyline causes
frequent bothersome side effects such as weight gain, dry
mouth, daytime tiredness, and trouble concentrating more
often than other medications with durations of action
more appropriate for sleep so I usually try these other
medications first. They include trazodone (Desyrel),
diphenhydramine (Benadryl), cyclobenzaprine (Flexeril),
alprazolam (Xanax), and carisoprodol (Soma).
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,
nausea, 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. It may 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. Some medications may become less effective
over time and the dose may then need to be increased
slightly. Most patients will need to continue medication
indefinitely, although sometimes the dose can be reduced
once a good response to treatment has been achieved.
Some patients report that they find various herbal and
other "alternative" remedies helpful. While I can't
recommend such treatments 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. I would encourage you to try treatments for
which there is scientific proof of efficacy first,
though. The large majority of alternative treatments
appear to be of no use or have no more than a placebo
effect and are simply a waste of money.
Regular sleep
Patients with fibromyalgia must try to get to bed by the
same time every night and get an adequate amount of sleep
(anywhere from 1 to 12 hours depending on the
individual). Staying up just one hour late may cause an
exacerbation that lasts for several days. Many patients
with fibromyalgia are worse with the change to or from
Daylight Savings time. To avoid this problem, try to make
the switch in fifteen minute increments every few days
instead of by one hour over one night. I have had little
success getting patients truly feeling well who work
shifts that prevent them from having a consistent bedtime
or require that they sleep during the day.
Exercise
Both daily gentle aerobic exercise and stretching
exercises are 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. It is very important
to count your pulse and not just guess. If your pulse is
too low or too high, you may be just wasting your time or
even causing harm.
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. Your 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. Good places to feel your
pulse are at the side of your neck or at the end of your
forearm just the base of the thumb-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 worse for the
next day or two. If you are only exercising every other
day you may never notice any benefit.
It may take trying several different kinds of exercise
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 are too strenuous for most
patients. If your pain is mainly in your legs or back,
exercise just your arms or try exercising in the water.
You may need to cut back on exercise on days that you are
feeling worse.
While many patients may get a lot of exercise at work,
doing housework, or in their yard, it is rarely the
helpful 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. Here 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 toward your buttock with your hand
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 eventually not need
medication.
Stretching exercises such as those described above are
often very helpful to decrease muscle stiffness and pain.
When fibromyalgia patients have been immobile for long
periods, for example in bed at night or on long car
rides, their muscles tend to get stiff and painful.
Stretching exercises and heat can be particularly helpful
at these times. Massage may also be very beneficial. Many
patients find that weekly massages greatly help the pain
and stiffness, but unfortunately insurance usually does
not cover massage therapy.
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 and is
also frequent in FMS. 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 injury or even premature death. 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 other
than alprazolam (Xanax) as well as alcohol in the
evening. While these may help you get to sleep, they
suppress deep sleep and therefore often make fibromyalgia
symptoms worse the next day. Narcotic pain medications
have the same effect and should be avoided -- they may
help the pain but they also may keep you from getting
better. Even anti-inflammatory medications like ibuprofen
interfere with sleep a little, which may explain why they
haven't been shown to help fibromyalgia in controlled
studies. Tylenol and Ultram have the least effect on
sleep and are preferred for pain.
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, fried foods, 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. Even one cup in the morning can
sometimes disrupt sleep at night and may 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
prevent headaches and other withdrawal symptoms.
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 handout 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 support groups in most areas
now. Two large national support organizations produce
good newsletters and can help you find a local support
group or physician:
Fibromyalgia Alliance of America, Inc.
P O Box 21990
Columbus, OH 43221-0990
614-457-4222 Phone
614-457-2729 Fax
Fibromyalgia Network
P O Box 31750
Tucson, Az. 85751-1750
Info line - 520-290-5508
Fax - 520-290-5550
For those of you with internet access, a good place for
on-line information and support is alt.med.fibromyalgia,
a Usenet newsgroup devoted to fibromyalgia. Be aware
though that there is much misinformation on the internet
and even in some books on fibromyalgia. Of the several
good books available for fibromyalgia patients, two of
the best in my opinion are:
The Fibromyalgia Survivor by Mark Pellegrino MD, Anadem
Press (1-800-633-0055 to order). Lots of valuable
practical advice. Dr. Pellegrino, a physiatrist and FMS
researcher who himself has FMS, has written several other
books about FMS, all good.
The Fibromyalgia Help Book by Jenny Fransen RN and I. Jon
Russell MD, PhD, Smith House Press (1-888-220-5402 to
order). Comprehensive and scientifically accurate with
lots of useful references yet easily readable. Dr.
Russell is a FMS researcher and editor of the Journal of
Musculoskeletal Pain. Jenny Fransen is a nurse clinician
with special expertise in FMS.
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 occasional relapses are
common, perhaps caused by staying up as little as one
hour late one evening, skipping exercise for a day, a
disruption in your daily 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. Hot baths and massage may also
be helpful at these times. Try not to stop exercising
during relapses, even if you have to back off on the
amount a little, and continue stretching. Once you have
had a period of feeling relatively well, it is usually
possible to get 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 should look for
a fibromyalgia specialist. Unfortunately, this is often
difficult to do. Most fibromyalgia specialists are
rheumatologists or physiatrists, (physical medicine
rehabilitation specialists), but you can't assume that
any given rheumatologist or physiatrist will be
knowledgeable and helpful. Other fibromyalgia specialists
may be internists, anesthesiologists, neurologists, or
belong to other specialties.
The best way to find a fibromyalgia specialist is to send
for lists of recommended physicians from the national
fibromyalgia organizations mentioned above, and also go
to a local fibromyalgia support group meeting and ask for
recommendations. It is best to do both because the doctor
lists are incomplete. Those of you out there who already
have good fibromyalgia specialists please let the list-
keepers know. A fibromyalgia specialist will be able to
perform a tender point exam (without which it is
impossible to make the diagnosis accurately), will tell
you that it is not possible to cure fibromyalgia but that
most patients can be helped substantially, usually will
not order a large number of tests, will recommend
treatment similar to that described above, and will seem
to enjoy treating fibromyalgia.
- David Nye, MD
Last updated on January 26, 1999
http://www.hsc.missouri.edu/~fibro/fm-pt.html
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