Defining Fibromyalgia
Fibromyalgia -- a guide for patients
by David A. Nye, MD, 21 Sept 1997
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 autoimmune 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:
- Medication to improve deep sleep.
- Regular sleep hours and an adequate amount of sleep.
- Daily gentle aerobic exercise and stretching.
- Avoidance of overexertion and stress.
- Treatment of any coexisting sleep disorders.
- 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 acheived.
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 thumbwrist
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:
- Shrug your shoulders in a circular motion.
- Reach your arm over your head and bend to the opposite side.
- Bend forward with your legs straight.
- Pull your foot towards your buttock with your hand while
standing on the other leg.
- 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 overexertion and 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.
PO Box 21990
Columbus, OH 43221-0990
(614) 457-4222 Phone
(614) 457-2729 Fax
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, 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.
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.
[diagram of tender points snipped, as it didn't reproduce very
well on the Web]
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.
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