Surviving Through Fibromyalgia

Medical Marijuana helps Fibromyalgia

2008-05-24T16:58:00.001-07:00

I am considering this option but as a last option to help with my Fibromyalgia pain.

Rejoining Life after Fibromyalgia

2008-05-24T16:55:00.001-07:00

I really want to say something special about Diana as she has been very encouraging to watch her grow and get better. She still battles with difficulties with her illness but she keeps going. So do view all of her other videos to see her progress through coping with Fibromyalgia.

Fibromyalgia

2008-05-24T16:42:00.001-07:00

FIBROMYALGIA EFFECTS MY ENTIRE LIFE

2008-05-24T16:39:00.001-07:00

The Healing Power of Deep Relaxation – Simple, Proven Techniques for Calming Your Mind and Body

2008-05-23T16:32:00.000-07:00

by Dr. William Collinge, PhD, MPH*

04-28-2008 “Every thought and feeling that passes through your mind has an effect on your body and its chemistry … and when you are free of stress and tension, your body's inherent tendencies toward balance are given the opportunity to assert themselves.” - William Collinge

The relaxation response is a profoundly healing state, as evidenced by the research described in [“The Benefits of Mind/Body Medicine”]. In fact it may be the most fundamental healing state of which you are capable, for what happens in this state is that all of your inborn tendencies toward balance and harmony are allowed to express themselves.

The benefits of this special state are really the result of helping your body and mind rest deeply. When you are free of stress and tension, your body's inherent tendencies toward balance are given the opportunity to assert themselves. Every cell has within its nucleus a genetic code or blueprint, showing what perfect harmony, balance, and health look like for you. That blueprint contains detailed instructions for each individual cell, as to its own role in restoring that state of balance.

I wish to emphasize here the importance of this genetic code. Imagine for a moment that you had the responsibility to direct all your body's functions. You must make a conscious effort to pump your blood, to digest your breakfast, to filter your blood through your liver and kidneys, to regulate your temperature, to grow white cells in your marrow, to direct each breath, etc... You would very quickly be overwhelmed with this responsibility. Fortunately your body has the programming to do all this for you. You need not even be awake, and these vital functions still go on.

Likewise, all your body's healing responses go on without your conscious participation. When you have a cut or bruise, the cells in that area know exactly what to do to restore that area to health, to knit the tissue back together, to remove the debris, to clear away the bacteria, and to restore the area to its original condition - in accordance with the genetic code for that area. What an overwhelming responsibility it would be if you had to understand consciously how to do this! None of you would be alive today.

The best you can do is support these inherent healing processes. And one of the most supportive things you can do is to remove as much interference as possible. To the degree that stress interferes with these healing processes, you will benefit by clearing the way for the relaxation response to work its magic.

THE WISDOM OF FATIGUE

In ME/CFS (and Fibromyalgia) the relaxation response has particular importance. The experience of fatigue is caused by certain cytokines released by the immune system. These cytokines are detected by neural receptors throughout your body. These receptors send the message to the brain that there is an elevated presence of cytokines in the blood, and the brain responds by trying to slow you down. Why would the brain do this? Is the fatigue merely a mistake, an aberration which serves no purpose?

Let us consider the possibility that the fatigue is a purposeful response on the part of your body. It serves the purpose of getting you to rest. This is your body's way of getting the relaxation needed to allow healing to take place.

Remember, your body knows how to heal. You can respect the fatigue as an intelligent response.

Rather than thinking of it as an inconvenience or an adversary, it is part of your body's effort to promote healing. Its intention is to allow the deep relaxation needed so your body can realign itself with its inborn programming.

When you argue with your body - that is, when you attempt to go on and ignore the symptom, it will escalate and win.

You cannot defeat the wisdom of your body.

WHAT THE RELAXATION RESPONSE IS NOT

There are a variety of popular images of what is meant by relaxation. To some people, it means lying on a sofa in front of the television. For others it means an evening at the movies, or reading a good book. For someone else it may mean taking a nap, or talking with friends. Perhaps the common denominator for most people is that it means not working or doing anything that is physically challenging.

However, none of these activities is likely to lead to the relaxation response. In fact, it may be safe to say that many people have never experienced true relaxation. This is because it involves more than just a state of rest for your body.

The relaxation response is a state of profound rest for both body and mind. This means that neither is active, which is why many people have not experienced it. The body may be in a state of repose, but the mind is another story. As long as your mind is busily engaged, your body is unable to totally relax. Every thought and feeling that passes through your mind has an effect on your body and its chemistry, however subtle.

This certainly applies to reading, television, and movies. Your mind is directly engaged, and is flooded with images which evoke reactions within you. This of course is the intention of such entertainment.

You can sleep without necessarily having the benefits of deep relaxation. People with ME/CFS or FM know all too well how the mind can disturb sleep. The sleep center in the brain is not functioning properly, and the anxiety and other symptoms of the illness can further impair your ability to have refreshing and restful sleep. Yet sleep is the best your body can do on its own to approach the benefits of the relaxation response. These factors, on top of the natural anxiety of having a chronic illness, can seriously interfere.

When you are sleeping, your mind remains active, in the form of dreaming. The dreams create all manner of feeling states and chemical changes in your body. We have all had the experience of waking up from a bad dream to discover sweaty palms or other signs of emotional upset.

The level of relaxation we seek is deeper than that attained in sleep. And, if you can learn the art of creating this deeper state, then sleep will be much more beneficial.

THE KEY: CALMING THE MIND

The key to creating the relaxation response is calming your mind. A calm mind is a mind with minimal activity - little or no thinking, analyzing, fantasizing, or worry. The more calm your mind is, the deeper is the state of relaxation for your body. This may come as a surprise to some, but the fact is that you can be fully awake, aware, and alert while at the same time your mind can be calm.

This of course forces you to examine your relationship to your mind.

The most fundamental point you need to accept is that you are not your mind. In Western cultures you are led to assume that "I and my mind are one... my mind is who I am." This view suggests that your mind is at the center of your being, it is the most essential part of you.

We can benefit, however, from the insights of Eastern cultures that there is much more to you than your mind. An alternative point of view is that your mind is on the periphery rather than at the center of you. In the center is your soul or spirit or consciousness, something more basic than your mind. And your mind itself is like an organ which you can activate or deactivate.

While this is a somewhat awkward way of saying it, the point is that it is possible to separate from, or dis-identify with, your mind. You can see yourself as having a relationship with your mind rather than simply being it. You must become interested in this relationship if you are to have any hope of being free of stressful thoughts and feelings, and their consequent ill effects in your body.

Fortunately for you there is a great deal known about how to accomplish this. The relaxation response has been the province of mystics and spiritual seekers for thousands of years. This is because they have all discovered that your mind is the primary obstacle to spiritual growth and insight. As a result, hundreds of traditions have evolved for how to calm your mind.

Most of these traditions involve various forms of meditation. Many mind/body programs teach meditation as a means to reduce stress and create the relaxation response. While meditation techniques were originally developed for spiritual pursuits, it is a welcome side benefit that the states induced by meditation can create the optimal conditions for healing to occur in your body.

All the traditions are based on the insight that you can separate yourself from your mind, and that by doing so you can learn to calm it. In CFS (and FM), since your mind and its functioning can be affected by the illness, this realization will help you to retain a sense of power and volition, that you are not simply a helpless victim of the syndrome and its effects.

When you can have some degree of mastery over this, you can more easily accept that the illness is transitory - the symptoms come and go - and that healing is possible.

HOW TO LAY THE GROUNDWORK

What I will present here are the common denominators of many different traditions for calming your mind. There is no one right way, but there are many ways to achieve this. They all, however, share certain fundamentals, which are described below.

Willingness to Practice Regularly
This endeavor involves the development of a skill. Regular practice is necessary to deepen your mastery of this skill. And with practice, your relaxation will deepen, will be achieved more rapidly, and the benefits will of course be greater. Yet without the commitment to regular practice the skill simply cannot be developed. Regular practice means daily, ideally at a specified time, and for a specified period such as 30 or more minutes.

Willingness to Work with Your Resistance
The nature of the mind is to remain active. It has a tremendous momentum to keep on thinking all kinds of thoughts. When you initially sit down to learn the practice, you will discover how strong this momentum is. You must constantly remember your intention to stay with the practice, for your mind will resist the practice and prefer to remain active.

Willingness to be Non-Judgmental of Yourself
One of the traps you need to avoid is evaluation or judgment of your performance. These judgments, coming of course from your mind, are in fact a way your mind can sabotage your efforts to calm it. Most likely you will have thoughts such as "I'm getting nowhere with this... I don't like this... This is boring... I can't do this... I'm not doing it right..." etc. It is absolutely predictable and natural to have these thoughts, but again they should be understood as part of the natural resistance of your mind, and you must not be distracted by these judgments. If you are not careful to remember this, you can be easily demoralized or dissuaded from further practice.

Creating the Right Environment
This means attending to the physical surroundings. Ideally you can find a place in your home which can become your special place for practice. Perhaps a corner in your bedroom, or some other place that is reserved for this process. This helps send a message to your mind that when you are in this place, this is what you do. Have the space arranged to be comfortable - a special chair, or cushions arranged in a certain way, so that you can feel at peace in this place. Gradually your mind will learn to expect relaxation when you are seated in this place.

Preventing Distractions
I consider three types of distractions especially important here: noise, other people, and telephones. Perhaps you can think of others. Remember, your mind prefers to remain active, and any of these distractions will be seized upon immediately by your mind if given the opportunity. The best advice is:

Noise. Avoid the interference of appliances, televisions, or other sources of noise. If you live with others, you must enlist their cooperation in maintaining quiet during your practice.
Other People. If necessary, place a "do not disturb" sign on your door. Again, you must enroll the cooperation of others. Make sure you communicate to them the importance of respecting your quiet time. If you have small children, you may need to arrange help with this, for otherwise your ears will be tuned to the slightest hint of their needing attention from you.
Telephones. The first choice is unplugging the phone at the wall. This way there is no ringing, no clicking of machines, and no imagining in your mind about who is calling and what they may be saying. Using an answering machine is the second choice, and if you do use one, turn off the volume and ringer, if possible.

I cannot overemphasize the importance of the prevention of outer distractions. They are the easiest to overlook, and the most likely to sabotage your practice. Remember, your mind may find the relaxation experience contrary to its nature, and may seize upon any opportunity to be active, however subtle. You are doing yourself a wonderful favor by creating the opportunity for true relaxation to happen, and the fundamentals must be in place.

TECHNIQUES TO CREATE THE RELAXATION RESPONSE (Using a particular focus to occupy your mind’s attention – “mindfulness” - and slow it down.)

Now that we have discussed the prerequisites, let us turn to specific techniques. Since the full relaxation of your body originates with the relaxation of your mind, you are basically working with your mind. The mind has been described as a stampeding herd of wild horses, a cage full of chattering monkeys, a freeway at rush hour, and many other metaphors, all of which characterize its seemingly uncontrollable nature. If left unattended, it will continue its random, chaotic activity. In fact, in this process, you will get to know your mind more deeply than ever before, for you will be in a new relationship with it.

Your mind can be slowed down and harnessed, or brought under control, so to speak. The means to accomplish this may be called mindfulness. This means your mind is full of what is happening right now, and you use a particular focus to occupy your mind's attention. Below are described some alternatives which you may use to practice mindfulness for relaxation.

Using the Breath
You may choose to use the breath as the focus for your relaxation process. Each breath is long, slow, and deep, into the belly. Being mindful of the breath, you become a student of it, and concentrate all your attention on a particular aspect of the breath. There are several ways the breath can be used.

Watching the breath. One method of watching is to focus on the expansion and relaxation of your belly. Notice how as you breathe in the belly expands outward as the diaphragm moves down, making more room for the lungs. As you exhale, notice how the belly is drawn back in, as if the belly button is reaching to touch the front of your spine. Follow the rhythm of this in and out movement, like a circle with no beginning point, just a continuous circular motion. This movement of the belly is like that of a person rowing a boat across a lake, with the arms moving in a circular motion, each stroke flowing into the next, with no clear ending or beginning for each stroke.

Another method of watching is to focus on a point just inside your nostrils. Imagine that there are millions of tiny, sensitive nerve endings that can feel the air moving in across this area of tissue. You might think of the air as an ocean of billions of molecules, like marbles, all rolling over each other and over these nerve endings as they cascade down you windpipe into your lungs.

Then the flow reverses, and this sea of marbles pours back out, again over those same nerve endings, as it leaves your body. And just as a tidal pool next to the ocean is constantly filled and emptied by the ebb and flow of the waves, so too the ocean of air constantly pours in and back out, through your nostrils. Maintain your focus on this area just inside the entrance.

Counting breaths. This means counting each in-breath and each out-breath, in pairs. For example: (in-breath) one, (out-breath) one, (in-breath) two, (out-breath) two, repeating this process up to ten. When you reach ten you begin again at one. Whenever you realize you have been distracted by thought and have lost count (which will happen!), rather than trying to remember where you were, you begin again at one.
Beginning-middle-end. Another approach with the breath is to focus on the beginning, middle, and end of each breath. This means that you conceive of the breath as having three segments, and you notice each of these segments, with each in-breath and with each out-breath. In other words, you notice the beginning, middle, and end of the in-breath, followed by the beginning, middle, and end of the out-breath. This too becomes a circular process, and you can fall into a comfortable rhythm of flowing in a circular motion.

It is important in all the breathing techniques to use your senses, rather than just doing it as an intellectual exercise. Really focus your senses on the experience of each breath as intimately as you can. Feel the texture of the air, feel the rising and falling of your belly, the expansion of your rib cage as the ribs open like fingers on a hand with each breath... Attune to your senses as much as possible to experience the breathing.

It is this use of the senses that will help you stay focused on the process and, in turn, calm the mind. Fritz Perls, MD, the father of gestalt therapy, once used a phrase which captures this process: "Lose your mind, and come to your senses."

Using Words or Sounds
Another method is to use a sound or word as the subject of your focus. This involves the repetition of the sound or word throughout the relaxation process. This too can be done in a variety of ways. One is to repeat the word on the out-breath. You can use a simple word, something which does not engage the mind, such as "one" or "ohm" or any other word which has a calming effect on you.

An alternative in this approach is to use a phrase which has a reassuring effect, such as "I am one," "I am calm," or "healing now." There are many variations of this technique possible, but they all have in common the repetition of the sound or words. It is the experience of repetition that has the calming effect on the mind. You can choose any word or phrase that appeals to you. Just be careful that it is not something that engages your mind or stimulates thinking. The emphasis is on simplicity and calmness. The process of repetition fills your mind and remains your focus throughout the process.

Using "Progressive Relaxation"
A favorite technique of many people is called progressive relaxation. This involves a block of time and a quiet place, just like the earlier techniques described. However, your body itself is used as the focus of your attention. The aim is the same - that is, to disconnect from thought and spend a period of time in a state of deep relaxation of both body and mind.

Progressive relaxation may be done either lying down or sitting. In either case, you find a comfortable position, one from which you will not need to move for twenty or thirty minutes. Observe the same fundamentals described earlier in preparing the environment and having a special place.

This technique involves focusing on various parts of your body, relaxing them one by one, spending approximately a minute in each area. You tense, hold, and then release the muscles of a particular area, before moving on to the next area. Hold or clench the muscles in the area for a count of ten, and then release for a count of ten, before moving on to the adjacent area.

In a variation of this technique, you can forgo the tensing and releasing of muscles, and instead focus on simply bringing your awareness to each area and imagining that area softening and melting, releasing any tension that was present. At the end of this chapter is a script to guide you through a progressive relaxation exercise using this variation. You are encouraged to experiment with both methods, and find which works best for you.

HANDLING YOUR MIND'S RESISTANCE

The greatest challenge in relaxation method is staying focused, whether it be on the breath, word, sound, or parts of your body.

And of course the source of this challenge is your mind, for it has a tremendous momentum toward continuous thinking. Your mind will go through a variety of strategies to distract you and engage you in its meandering ways. This may include continuously offering you its analysis about the process, as in "I'm not getting this... This is boring... I'm doing great... This is fun... How much longer? What time is it?"

If that doesn't capture your attention away from the process, your mind may try thinking about the important issues or problems in your life, or resort to showing re-runs of horror movies about your illness.

Its basic attitude will be, "Why waste this valuable time that could be put to constructive use, thinking about how to solve these problems?"

Or it may choose to focus upon the details of daily living: "Let's see, how full is the gas tank? How much do I have in the checking account? When did I balance the checkbook last? What do I need to pick up at the store?"

Your mind will find both subtle and not-so-subtle ways to distract you and engage you in thought.

Returning Home (Again and Again)
Each time you discover you have lost your focus and have been caught up by your mind, your reaction is critical to the relaxation process. It is not realistic to expect that you should remain free of thought through the process and never succumb to your mind's seduction. The process is not one of attaining a fixed state of no-mind. Rather, it is a process of continuously and methodically returning back home to the meditation subject.

Some people find it helpful to imagine they are sitting by a river bank, and the thoughts are merely debris floating by. They do not need to jump in and float down the river with the debris. Or you may imagine the thoughts as merely clouds drifting across the sky, as you notice them and return to your focus.

At first you may find that you stay focused only for a few seconds at a time before thoughts start crowding their way in. And each time you find yourself in thought, you simply return, as if to say "Oh yes, back to the breath..." There is no need for judgment of yourself or analysis of the thought. Just keep returning back to the focus.

This is when to be especially wary of self-evaluation, for if you persist with a judgmental attitude toward yourself or your performance, you will experience meditation as one insult after another because you will quickly see that your expectations do not hold.

Labeling Your Thoughts
One strategy that may help you get some distance from your thoughts is to label them when they arise. Each time you find yourself captivated in thought, you take a step back and give that thought a descriptive label. You need only have a very short list of categories for, after all, most of your thoughts deal only with a limited range of issues.

You may use any labels you find useful. You could use a simple scheme such as worry, fear, desire, thinking, fantasy or other labels. The point is to distance yourself a little from the thought, and attaching a label can help you shift your focus back to the relaxation process.

With time and practice, you will find that your skill increases noticeably. You will find the gaps between thoughts become wider, you will catch yourself more quickly, and less and less effort is required to return to your focus. You will also begin to notice patterns or characteristic types of thought that seem to keep arising, and this recognition will make it even easier to detach.

Ultimately you will discover deeper feelings of calm and peace than you thought possible. Finally, after each session you will find that your thinking is more clear and insightful. These are all worthwhile benefits which will add to the physiological benefits of the relaxation response.

THE USE OF MUSIC

Many people enjoy using music in relaxation, and it can certainly have a soothing effect on your mind and emotions. However, music can both help and hinder your creating the relaxation response. One must be careful in how one uses it, and what music is selected.

There are certain guidelines for this. Remember, since your intention is to calm your mind and body, it is best to select music which does not engage your mind in following a melody. While this may feel pleasant, it does not help in making your mind be still so the relaxation response can arise.

On the other hand, music which is simple and non-intrusive, such as involving long tones or ocean waves gently lapping on the shore, and no melody that compels you to participate in it, can have a calming effect for your mind and facilitate the relaxation response.

Some people find that music is helpful in the early stages of learning to deeply relax, but then later becomes a distraction as they become more adept at calming the mind on their own.

EXERCISE: PROGRESSIVE RELAXATION

Allow about 20 minutes to move through this process. Find a comfortable position, in an environment where you will not be disturbed or distracted.

Begin by closing your eyes and bringing your awareness to your breath. Take a few moments to breath deeply and fully, emphasizing the length of the out-breath, letting it be long, deep, and thorough.

After a few minutes when you feel your breathing has softened, bring your awareness to the toes of your right foot. Imagine that you can direct your breath into your toes, and as you breathe, your toes are softening and melting, letting go of any remaining tension. After a few breaths, bring your awareness to the rest of your right foot, and breathe into the entire foot, allowing it to soften, melt, and let go of any remaining tension.

Now let this feeling of softening and melting spread up through your right ankle, and bring your awareness to your right calf muscle. Again breathing slowly into this area, feeling it soften and melt with each full deep breath.

Spend a few moments sensing the feeling of softness and melting, and then let this feeling of relaxation slowly move up through your right knee into your right thigh, and again, feel your right thigh muscles softening and melting, just letting go of any remaining tension...

Continue this process through the major muscle groups of your body, taking your time in each area (about a minute) until you feel a definite softening and melting sensation.

Move from the right thigh to the hip, the buttocks, over to the left hip, down into the left thigh, knee, calf, ankle, foot and toes.

Then move up through the pelvis, lower back, middle and upper back.

Then around to the lower abdomen, solar plexus, rib cage, and chest.

Then out to the shoulders, down the arms, the hands, to the finger tips.

Move to the neck, throat, up the sides and back of the head, over the top of the scalp. Then down into the forehead, into the sinuses, eyes and eye sockets, cheeks, and mouth. Inside the mouth to the jaw muscles, the tongue, and the lips.

Now scan the entire length of your body, to see if there are any remaining areas with the slightest tension. Direct your breath into those areas, and with a long, thorough out-breath, let it all go...

Now rest.

Chronic Fatigue Syndrome and the Exercise Conundrum

2008-05-23T15:09:00.000-07:00

Chronic Fatigue Syndrome and the Exercise Conundrum by Lucinda Bateman, MD*
Fibromyalgia.com

08-28-2007 [Note: Dr. Bateman fielded patients' questions on physical conditioning and other topics recently as host of an Expert Chat Event in the ImmuneSupport.com chat room. To read the script of this educational Q&A, click here.]

“The key is patience - not doing too much at once and learning not to exceed the threshold that results in “payback” symptoms…Today, 9 years after onset of CFS, I’m still encumbered by my illnesses and still disabled, but muscle pain and weakness are no longer the whole of my story. I can now lift more than folded towels and a dinner setting. I HAVE BICEPS. It has taken over 3 years to achieve “bragging rights” about new found muscular strength, although I am cognizant of the many gradient benefits all along the way, while doing my exercises...

"At first I did not believe that the little I could do would accomplish any improvement... Specialized exercises, done in gradients (with sufficient rest), taking a day off in between sessions, are the secrets to my success. I have lost 15 unwanted pounds. I look better and I feel better in some ways. Besides adding stamina and strength, exercise has reduced my pain. I no longer need daily pain meds. Gardening is a new hobby, made possible by new found strength and the correct balance of activity and rest. I do use my cane, a gel cushion and proper tools to make it easier."

These words were written by Linda Milne, a 64-year-old woman with disabling Chronic Fatigue Syndrome (CFS) whose life changed after she learned from Staci Stevens, exercise physiologist, how to become more physically conditioned in spite of her illness.

One thing patients and medical providers agree on is that CFS is characterized by post-exertional malaise, a term that often understates a “payback” that varies from escalation of widespread pain, to exhaustion requiring a recovery day in bed, to serious relapse of the entire CFS symptom complex: the cognitive dysfunction, flu-like achiness, fatigue, low grade fevers, lymph node tenderness and disturbed sleep patterns of weeks or months duration.

Post-exertional malaise has always been considered a defining feature of CFS, although we are still uncertain why it occurs (Fukuda). A recent genomics paper clearly demonstrated a difference, using gene array technology, between CFS patients and controls before and after exercise (Whistler). VanNess and colleagues showed the inability of CFS patients to replicate VO2 (measured oxygen consumption) in the second of two graded cardiopulmonary exercise tests separated by only 24 hours of rest, although effort was identical as measured by RQ (Stevens, VanNess).

This finding may be unique to CFS.

The CFS patients had a significant drop in VO2 on Day 2 compared to normal, deconditioned controls who achieved the same VO2 on Day 1 and Day 2 of exercise testing. In another study, the same research team objectively demonstrated a decline in cognitive function in 20 CFS patients 30 minutes and 24 hours after a graded cardiopulmonary exercise test compared to pre-exercise levels, with no such observed change in the 20 age matched deconditioned controls (Snell).

A related concept is the idea that a “threshold” exists at which something pathologic happens in the body because of exercise or activity, and that exceeding the threshold causes post-exertional malaise. Knowing exactly what happens at the threshold, where the threshold is, and how we can raise the threshold are questions that have proven difficult to answer, at least in some patients.

This is a not a foreign concept in medicine. A diabetic can develop life-threatening hypoglycemia from exercise. Exercise converts asymptomatic coronary artery disease to ischemia, infarction, and fatal arrhythmia. Certain asthmatics develop severe bronchospasm from exercise.

In each of these disorders, while potentially deadly, exercise is also an important therapeutic intervention. In each case, exercise is safe if:

The underlying condition is well defined and under good control,

A safe level and type of exercise are prescribed,

And the patient is meticulously educated regarding how to exercise and how to recognize signs that exercise should be limited.

No doctor would tell these patients that they should “just exercise and they’d feel a lot better.” Our ability to safely prescribe exercise for these disorders is different than CFS, because we have a much better understanding of pathophysiology, we can measure the disease severity objectively, and we have effective treatments.

In the absence of adequate information about CFS, we should prescribe exercise with the same cautious and attentive approach we might use if we had inadequate clinical information and treatments for our asthmatic, diabetic or cardiac patient. We can still utilize exercise therapeutically if we respect what we do not know, and utilize what we do know from research, clinical experience and the observations of our patients.

It is common knowledge that both muscular and cardiovascular deconditioning occur from inactivity, even in healthy individuals. Pushing beyond one’s current threshold or level of conditioning, by suddenly increasing either the intensity or duration of exercise, may result in fatigue, pain, stiffness and inflammation, even serious difficult-to-reverse conditions such as chronic inflammation (i.e., tennis elbow, plantar fasciitis) or stress fractures. Usually the threshold of deconditioning can be gently raised by gradual increases in the exercise stressor.

Young bodies that heal more quickly have a greater capacity to recover from physical stressors or rapid escalation of exercise intensity. Advancing age and co-morbid medical conditions make it more difficult to push exercise efforts too intensely or too long without consequence, hence the “weekend warrior” who ends up limping around in widespread pain or in the Emergency Room from injury.

Patients with CFS who are unable to remain active become deconditioned, but their ability to tolerate exercise stress and raise the threshold may be impaired compared to normal individuals. Indeed, recent studies published by the CDC Computational Challenge teams suggest that CFS patients may have more difficulty than others recovering from common physical stressors, as measured by increased allostatic load (Maloney). It is possible that some stressors leave a mark or permanent injury in patients with CFS, as if their normal stress response and recovery mechanisms are dysregulated or chronically depleted.

In addition to physical deconditioning, there are many partially understood aspects of CFS, well established in the literature, that might contribute to an exercise threshold, the exceeding of which could result in pathologic injury. This might include:

Defects of oxidative metabolism,

Dysregulation of the autonomic nervous system and HPA-axis (CRH, cortisol and aldosterone),

Presence of chronic or latent reactivating infection,

Dysregulated immune or inflammatory systems (cytokine production, natural killer cell function, complement activation)

And other yet-to-be clarified processes.

It is not difficult to imagine an exercise or activity threshold in someone with CFS after which the body experiences physiologic injury that contributes to post-exertional malaise. It is not necessary to understand this before we respect it.

Clinicians resonate with recent CDC publications supporting the idea that the CFS Case Definition defines a heterogeneous group of patients (Vollmer-Conna, Aslakson). Cardiopulmonary test results of more than 200 CFS patients engaged in the Phase III Clinical trial of Ampligen^R show a stratification of exercise capacity (as measured by VO2, systolic blood pressure and pulse) ranging from mild to severe impairment according to AMA impairment guidelines (VanNess). This exercise tolerance heterogeneity may be the most important reason why, in spite of agreement about post-exertional malaise, there remains a wide array of opinion in published articles about the benefits of exercise in CFS.

Factors that might contribute to heterogeneity and create a number of apparently conflicting clinical or research observations about the benefits of exercise in patients with CFS include the inherent selection bias of small studies, a variety of causes of CFS, severity of illness, different stages in the natural history of CFS, age, comorbid medical conditions, weight gain, an inevitable degree of deconditioning, pre-illness state of conditioning, or prior experiences with exercise.

There is no doubt that my hundreds of patients who meet the CFS case definition exhibit a wide spectrum of exercise tolerance.

n On one end of the spectrum (perhaps a Fibromyalgia patient with metabolic syndrome who meets the CFS Case Definition), the response to graded exercise is satisfying and clinically helpful. These patients can gradually increase their strength and aerobic capacity with proper conditioning, resulting in weight loss, better energy, improved pain and fatigue. Some even recover a higher level of function, although the Fibromyalgia symptoms usually remain to some degree.

n On the opposite end of the exercise tolerance spectrum are certain CFS patients who invariably experience a severe relapse of symptoms after attempting to increase their physical activity, either immediately or within a few weeks. It seems that even the more healthy patients of this subset must reduce other activities in order to substitute and sustain a low level exercise regimen.

The point is that we don’t need to understand all aspects of CFS or even be able to objectively subset our patients to begin sensibly utilizing physical conditioning to improve their health. From the clinical standpoint, our patient population will always be heterogeneous. There will always be a spectrum of contributing factors, including primary etiology, stage, co-morbid conditions (including obesity and deconditioning), severity of pain and secondary relapse symptoms, age, plus a variety of personal skills, resources, motivation and discipline. It is possible to adapt exercise advice compassionately and intelligently to the individual situation.

The following are some ideas about how to help your CFS patients discover how they can best improve their physical conditioning, given their particular level or type of illness.

Don’t Call It “Exercise”

We all, patients and providers, have inflated perceptions about what the word exercise means. Instead of asking about exercise, try: “What are you able to do...

...to keep your muscles from becoming weak?

...to keep your body moving?

...to stay strong and flexible?

...to work on physical conditioning?”

Discuss Physical Conditioning Activities in Every Visit

Just as I review medications, current symptoms and level of function, I include a question about efforts to become better physically conditioned. Everything counts: walking up and down stairs in the home, sitting on the grass or a gel pillow and pulling a few weeds, walking the dog. Point out and commend what is being done, and think of ways to gradually push toward, but not over, the threshold and discover its nature. Confirm with patients the activities they have discovered helpful (i.e., stretching helps reduce pain and stiffness; being stronger makes getting around easier).

Separate Physical Conditioning into Approachable Components

1. Stretching. Stretching is well tolerated and complemented by relaxation and breathing exercises. Start with seated or supine stretching activities, and sustain a regimen for several weeks before moving to standing activities or strength conditioning. Specific instructions are helpful and usually necessary.

2. Strength training. Progress gradually from stretching to strengthening activities. Use very low weights, light stretch bands or no equipment at all, just body weight. Strength training should initially be limited to 30-60 seconds with rest periods between, and a maximum of 3-5 intervals per session. Do not increase weight/resistance much or do prolonged repetitions. Specific instructions are imperative.

3. Cardiovascular conditioning. Aerobic upright activity is usually the least well tolerated, especially if prolonged or intense, so if done, it must be done with care. It should be brief and low intensity, such as walking to the corner and back rather than attempting to go all the way around the block. Start with only a slight increment more than current daily activities demand.

Start with Small Efforts, Increase Slowly, and Find a Sustainable but Flexible Regimen

Physical conditioning efforts should approximate an intensity and duration that will cause no post-exertional malaise symptoms the day following the activity. “No pain, no pain,” is advised by Namita Gandhi, an exercise physiologist in Oregon with both personal and professional expertise in Fibromyalgia movement therapy. All fatigue, pain or cognitive symptoms should be back to baseline after a good night of sleep.

The regimen should not be increased until it can clearly be sustained for weeks without consequence. Then it may be increased a small increment in duration or intensity, and observed for tolerance another 1-2 weeks, etc.

There is nothing wrong with finding a tolerable, variable or constant level to maintain without graded increase, as that is the inevitable end.

Allow Recovery Time

Rest between short intervals of exercise. Take at least one rest day between conditioning days. Allow more time when stressed or in a flare of symptoms. Give whatever physiologic injury may be present plenty of time to resolve before attempting further exercise.

Be Cautious About Upright/Standing, Intense or Prolonged Activities

1. Upright/standing: Since people with CFS may have autonomic dysfunction, it makes sense (and works) to engage primarily in activities that minimize orthostatic intolerance (OI). OI is a general term that encompasses a variety of manifestations, including Neurally Mediated Hypotension (NMH) and Postural Orthostatic Tachycardia Syndrome (POTS).

Try to do most physical conditioning activities lying down, seated or in water. If sensitive to orthostatic stress, choose Yoga, Pilates, recumbent cycling or pool therapies rather than standing for Tai Chi, walking on a treadmill, or attempting to play soccer. Water offers a number of theoretical advantages in the setting of OI. Swimming in a horizontal position negates OI. Standing or walking in deeper water creates a hydrostatic pressure gradient, un-weights the joints and spine, and provides uniform light resistance to all movement. Cooler water may contribute positively to peripheral vasoconstriction, thus minimizing OI. Warmer water is more soothing for arthralgia, myalgia and stiffness.

Avoid becoming overheated and volume depleted. Hot tubs, hot showers, sitting too long in a hot car cause vasodilation and can result in marked OI symptoms, manifest silently as a drop in blood pressure or dramatically as a pounding or racing pulse. Frank syncope (fainting) can occur, but getting overheated usually just lowers the threshold, prevents further activity, and can result in severe post-exertional malaise (exhaustion, headaches, cognitive decline, achiness and disturbed sleep).

Volume loading can be strategically timed to improve exercise tolerance in the face of OI. It is effective to “chug or guzzle” oral fluids in anticipation of upright activity. A 500-600 cc (medium size bottled water) bolus begins to raise blood pressure in 15 minutes, peaks in 30 minutes, and the effect is gone in 60 minutes (Shannon).

The peripheral alpha agonist, midodrine (a 10 mg dosage in most people), can compliment fluid loading. Its acts fairly quickly and the effect abruptly wanes within 4 hours due to its short half life. For severe POTS, beta blockade may also be helpful.

2. Intense: Exercising too vigorously is the most common mistake made by those who fail a trial of physical conditioning. Rapidly or dramatically exceeding the threshold results in more illness symptoms, overall a very negative experience. Assume severe underlying deconditioning and co-morbid pathology are present. I tell my patients who hire a personal trainer to begin with a program designed for “an 80 year old with a heart condition.”

Staci Stevens, MS, an experienced CFS exercise physiologist in California, instructs her patients to wear a heart rate monitor with an alarm to notify them when the heart rate has climbed to a predetermined level. She measures a CFS patient’s anaerobic threshold objectively during graded cardiopulmonary testing, notes their heart rate at the anaerobic threshold, and then uses that heart rate value to estimate the anaerobic threshold during physical activity. It is typically somewhere between 90-110. (Linda’s was 80!)

Staci counsels patients not to exceed that heart rate during physical activity. When the alarm goes off, the patient stops the activity and sits down to rest. Whether avoiding a defect in oxidative metabolism, an escalation of orthostatic hypotension, or some other mechanism, this may be one tangible way of staying below the threshold of relapse and avoiding post-exertional malaise.

3. Prolonged: Even light exercise can exceed the threshold if pursued too long. Set time limits and gradually increase them if sustainable without relapse. Respect the threshold. If increases in duration of exercise are not well tolerated, continue only shorter, less intense, sustainable regimens. Limit the time of any sustained action initially to 30-60 seconds and the whole activity to 5 minutes.

Chuck [Dr. Charles] Lapp, MD, in North Carolina, has shown that five minutes three times during the day are better tolerated than a 15 minute block of activity, yet the results in conditioning are equivalent. It is actually better than equal, because exceeding the threshold will inevitably cause a discouraging setback and an understandable desire to abandon all efforts to continue.

Be Consistent

Find a range of well tolerated physical conditioning activities and doggedly stick with it, even if it seems ridiculously insignificant.

Learn to pace, assess, and re-adjust the type, intensity and duration of activity day by day to stay under the relapse threshold and avoid post-exertional malaise.

Observe any pattern of activity at least a week before increasing the duration or intensity.

Be careful about advancing any aspect of physical conditioning unless gradual increases are well tolerated.

Recognize and respect the reality that CFS patients may have a point at which, physiologically, they will become more ill from physical activity and experience a substantial set back, even if the mechanisms are not entirely clear.

REFERENCES

Aslakson E, Collmer-Conna U, White PD. “The validity of an empirical delineation of heterogeneity in chronic unexplained fatigue.” Pharmacogenomics (2006) 7(3), 365-373.

Fukuda K, et al. “The Chronic Fatigue Syndrome: A comprehensive approach to its definition and study,” Annals Int Med, 1994, 121:953-959.

Jammes Y, Steinberg JG, Mambrini O, Bregeon F, Delliaux S. “Chronic Fatigue Syndrome: Assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise,” Jour. Int. Med. 257:299-310 (2005)

Jones JF, Nicholson A, Nisenbaum R, Papanicolaou DA, Solomon L, Boneva R, Heim C, Reeves WC. “Orthostatic instability in a population-based study of chronic fatigue syndrome,” American Journal of Medicine 118:1415.e19-1415.e28, 2005.

Maloney EM, Gurbanxai BM, Jones JF, de Sousa Coelho L, Pennachin C, Goertzel BN. “Chronic Fatigue Syndrome and high allostatic load,” Pharmacogenomics (2006) 7(3);467-473.

Shannon JR; Diedrich A; Biaggioni I; Tank J; Robertson RM; Robertson D; Jordan J. “Water drinking as a treatment for orthostatic syndromes,” Am J Med. 2002; 112(5):355-60 (ISSN: 0002-9343)

Snell CR, VanNess JM, Stevens SR, Bateman L. “Intravenous saline administration improves physical functioning in a patient with Chronic Fatigue Syndrome.” Med. Sci. Sports. Exerc. 38(5), 2006

Snell CR, VanNess JM, Strayer DR, Stevens SR. “Exercise capacity and immune function in male and female patients with Chronic Fatigue Syndrome (CFS).” In Vivo. 19:387-390 (2005).

Snell CR, "Using a Reaction Time Paradigm to Assess Neurocognitive Function in CFS." IACFS Scientific Conference, Ft. Lauderdale, January 2007.

Stevens SR. “Using Exercise Testing to Document Functional Disability in CFS,” Jour. of CFS. Vol 1, No.3/4, 127-129 (1995). (Haworth Press)

Stevens SR. "Post-exertional malaise following an exercise challenge." IACFS Scientific Conference, Ft. Lauderdale, January 2007.

VanNess JM, Snell CR, Stevens SR, Bateman L, Keller BA. “Using serial cardiopulmonary exercise tests to support a diagnosis of Chronic Fatigue Syndrome,” Med. Sci. Sports. Exerc. 38(5), 2006.

VanNess JM; Snell CR, Strayer DR, Dempsey L, Stevens SR. “Subclassifying Chronic Fatigue Syndrome through exercise testing,” Med. Sci. Sports. Exerc. 35(6): 908-913, 2003.

Vernon SD, Reeves WC. “The challenge of integrating disparate high-content data: epidemiological, clinical and laboratory data collected during an in-hospital study of chronic fatigue syndrome.” Pharmacogenomics (2006) 7(3) 345-354.

Vollmer-Conna U, Aslakson E, White PD. “An empirical delineation of the herogeneity of chronic unexplained fatigue in women,” Pharmacogenomics (2006) 7(3), 355- 364.

Whistler T, Jones JF, Unger ER, Vernon SD. “Exercise responsive genes measured in peripheral blood of women with chronic fatigue syndrome and matched control subjects,” BMC Physiology 2005;5(1):5

OTHER USEFUL RESOURCES:

“Managing Activity and Exercise” Under Treatment Options at the CDC's Chronic Fatigue Syndrome site for consumers.

“The ‘Skinny” on Exercise and CFS” The CFS Research Review. Summer 2006. Vol 7, Issue 1, 8-10. A publication of the CFIDS Association of America.

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* Lucinda Bateman, MD, is a leading ME/CFS and Fibromyalgia specialist who sees patients at The Fatigue Consultation Clinic (http://www.fcclinic.com) in Salt Lake City, Utah. This article is reproduced with the author’s permission from the website of the International Association for CFS/ME. Dr. Bateman is a member of the IACFS/ME board.

Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.

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