Chronic fatigue syndrome (CFS) is a disorder that causes extreme fatigue over extended periods of time which persists after rest and limits one’s ability to conduct ordinary daily activities. Discuss topics including causes, exams and tests for CFS, treatments and how to live with CFS.
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.
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.
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.
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.
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.
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.
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.
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:
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.
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.
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 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.
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