Fibromyalgia Experiences
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.
