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Energy Management in CFS/FM
Sleep and CFS/FM
Orthostatic Intolerance
How to Measure your Blood Pressure
by Dr. Ellie Stein, July 2001
Burke Institute for the Rehabilitation of Chronic Illness
Calgary, Alberta, Canada
One of the most challenging aspects of recovery from Chronic Fatigue Syndrome (CFS) and/or Fibromyalgia (FM) is the drastic adjustment in lifestyle which is necessary. Most CFS/FM patients were very active before becoming ill. Being physically fit is part of their self image and to refrain from exercising in the way they did before requires a huge psychological adjustment. Our society has deemed that exercise is good and not exercising is being lazy. Most of us have grown up with these ideas and it is difficult to believe that for people with CFS/FM these ideals are untrue.
Recovery from CFS/FM requires a new understanding of the relationship between energy and health. This is best achieved by daily charting of all activities, energy levels before and after the activities and recording of pain and sleep measures. This is the only way to ascertain with accuracy the impact on your health of the amount of activity you are currently doing.
Activity is categorized by the rate the heart has to beat to supply enough blood and nutrients to the muscles. A normal resting heart rate is 60 - 72 beats per minute. As a group, persons with CFS/FM have a higher than normal resting heart rate. Normally a heart rate (HR) of 110 - 140 beats per minute. is considered necessary for aerobic exercise. If one pushes higher than this the body must rely on anaerobic energy which is short lived and results in lactic acid build up.
As a general rule if your energy goes down and pain goes up after exercise you did too much. If you feel better after exercise and sleep well that night, you have done the right amount for your health that day. Exercise tolerance depends upon many factors and changes day to day. Persons with higher daily energy levels can do more rigorous exercise without adverse effects. On days when your energy level below 50% you should minimize aerobic exercise and focus on stretching and mobilization. At energy levels between 50 and 80% you should keep your heart rate below 120 beats per minute while exercising and should monitor post exercise fatigue, pain and sleep carefully. Above 80% energy you can engage in aerobic and anaerobic exercise to your current level of fitness.
Exercise is inherently damaging to the body. However a healthy person is able to recover from the exercise between workouts and will experience a "training effect" - that is, she will be able to increase the intensity or duration of exercise during the next workout. In patients with CFS/FM the training window occurs at a much lower heart rate and the anaerobic window is reached much sooner. For reasons that are still unclear, patients with CFS/FM are less able to recover from and less able to benefit from aerobic and anaerobic workouts.
An objective way to assess recovery from a workout is to measure the length of time it takes for the HR to return to the resting level after exercise. If exercise is too rigorous, the HR will remain high in part due to adrenaline. Adrenaline acts directly on the heart to make it beat faster causing the palpitations and the hyper, anxious feeling many CFS/FM patients experience after they have pushed themselves too hard.
Insufficient and inadequate sleep is the sine qua non of Chronic Fatigue Syndrome (CFS) and is almost universal in Fibromyalgia (FM). As early as 1975, it was shown that experimentally depriving subjects of sleep caused increased pain, preoccupation with getting enough sleep and decreased sense of well being.
On polysomnographic testing (EEG while asleep) it has been shown that people with CFS spend more time in bed but less time asleep than healthy controls. They take longer to fall asleep (initiation), have more sleep shift changes per hour and decreased stage 4 or deep sleep.
Many important hormones are produced solely or predominantly during deep sleep. These include human growth hormone which is necessary for muscle maintenance and repair, Somatomedin C which is a marker for growth hormone secretion is found in lesser amounts in patients with FM compared with healthy controls.
To rehabilitate sleep one must:
The first step is to become an excellent observer of your sleep and the factors which determine the quality of sleep you get. This is done by daily charting of sleep variables and other relevant factors such as activity, pain and energy levels. Only once you have this detailed information can your doctor recommend how to improve your sleep.
First, one must determine one's natural sleep window. Trying to fall asleep when the body is not ready leads to long initiation. Try to identify which part of the night (morning) you sleep the most deeply. Many patients with CFS/FM have a sleep window delay of 3 - 5 hours compared with healthy adults. Start your sleep time routine eg. meditation, hot bath, snack about 1 hour before your ideal sleep time.
The next step is to ensure that your sleep environment is as comfortable as sleep promoting as possible. Ear plugs, eye shades, a comfortable bed and an absence of interruption can make a big difference. For most patients with CFS/FM these changes alone are insufficient to restore healthy sleep and medications must be used.
Unfortunately there is no one drug which will improve all three aspects of sleep mentioned above so most patients have to take a combination of medications. Imovane (zopiclone) is useful to fall asleep more quickly, Tryptan (L-tryptophan) increases the depth of sleep and Elavil (amitriptylline) helps increase the duration of sleep. Since the range of effective doses is very large, patience is required to try a range of doses and timing of administration of the sleep medications.
There is evidence that many of the symptoms of CFS/FM are exacerbated by insufficient blood flow to various organs. This is thought to occur because of insufficient blood volume and because of pooling of blood in the peripheries. The brain requires a constant adequate supply of blood which carries oxygen and nutrients. If the brain does not get enough blood one develops symptoms such as dizziness, weakness, nausea, muscle pain and "brain fog". SPECT brain blood flow studies have confirmed insufficient blood flow to several parts of the brain in persons with CFS.
Normally when we stand there is a brief period of low blood pressure (hypotension) while the body adjusts to having to pump blood all the way from the feet to the head. After a few seconds blood pressure and heart rate return to normal. In people with orthostatic intolerance (OI) this normal readjustment doesn't occur and symptoms occur with standing.
There are two main types OI. In neurally mediated hypotension (NMH) the nerve signals that compensate for this change in position malfunction and the low blood pressure lasts longer and is more severe. In order to avoid injury due to lack of oxygen, the brain tells the body to lie down quickly (it is easier to pump blood horizontally than vertically). This is experienced as dizziness and even fainting. In postural orthostatic tachycardia syndrome (POTS) the blood pressure recovers but the heart rate speeds up to try to pump blood more quickly. If the compensation is insufficient the person feels dizzy, tired, weak and nauseous AND has a rapid pounding heart beat.
The first line treatment for OI is to increase salt and water intake. This needs to be
monitored by a physician and by at home blood pressure, symptom and energy monitoring to
determine
1. whether blood pressure control is a relevant factor for health and
2. the ideal amount of added salt and fluid for optimal health.
If these measures are insufficient, drugs such as fluodrocortisone, midodrine and
propranololcan be helpful but must be considered with your physician's advice and
monitoring. Side effects can be significant
Treatment for OI will be unsuccessful if the diet is insufficient in protein and nutrients, if there are periods of hypoglycemia or if one consistently exposes onself to factors which decrease blood pressure. These factors are only discovered by close self observation.
Blood is pumped through the body by the heart. When the heart contracts (systole), it pushes blood out into the arteries at a high pressure. When the heart relaxes (diastole), the pressure in the arteries decreases. This is why blood pressure measurements are reported as two numbers; the systolic over the diastolic (larger over smaller).
Blood pressure constantly varies to compensate for temperature, body position and activity level. Therefore some variation in measurement is normal. To determine whether blood pressure control is related to your health, blood pressure must be measured throughout the day in as many different positions and situations as possible.
To measure blood pressure, rent or purchase a blood pressure cuff (sphygnanometer). The automatic type is best since it performs the readings with the push of a button (no stethoscope or expertise is needed). Place the blood pressure cuff on either arm far enough above the elbow to allow the arm to bend freely. The tubing should be pointing down towards the inner aspect of the second finger. Relax the arm by your side and either pump up the cuff with the other hand or push the button (if fully automatic). Then wait for the reading. Blood pressure should be the same in both arms. Measure both a number of times to ensure this is true for you before using the same arm for all measurements.
The larger number is the systolic pressure. The smaller number is the diastolic pressure. Normal adult blood pressure at rest while sitting is 120/80 mm Hg (millimeters of mercury) and increased slightly with normal aging. This is the amount of pressure needed to ensure adequate blood flow to the body's organs. The difference between the two numbers is called the pulse pressure and is 40 mm Hg. The pulse pressure controls the amount of blood that flows from the arteries into the tissues.
To assess whether there is a connection between your blood pressure and the way you feel, measure your BP while in all body positions: standing, sitting and lying down; at all times of the day; and in different feeling states eg. when you are feeling well, poorly, hot, cold, dizzy, energetic, tired etc.
Measure your BP first thing in the morning before getting out of bed. Do this on at least 5 different days. Measure your BP on at least 10 other occasions especially when you are feel poorly. Note on your charting the date, time of day and what you were doing just before the BP was taken (eg. exercise, meal, standing, headache, pain, sleep etc).
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