Resources

Topics covered below include (click on topic to go...)

• The Stepwise Approach

• Preventive Care

• Dealing with Relapses and Flares

• Diet and Nutrition

• Influenza Vaccination

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The Stepwise Approach

80% of sufferers of Chronic Fatigue Syndrome / Fibromyalgia feel better and can take control of their lives again by following the Stepwise Approach to Chronic Fatigue Syndrome and Fibromyalgia. The Stepwise Approach uses traditional medical therapy complemented by proven wellness techniques to restore well-being and help the sufferer to improve naturally. This is accomplished through education, proper nutrition, low level graded activities, medical management of symptoms and supportive therapies.

The following explanation of The Stepwise Approach was transcribed from a presentation given by Dr. Lapp to the Nashville Support Group:

Education

"Education begins with reassuring the patient that they have a recognized disorder," says Dr. Lapp. "Most are relieved just to hear that they are not dying and that they aren’t crazy." The more you know about your medical condition, the more equipped you will be to handle its ups and downs. If new symptoms arise that make you doubt your diagnosis, ask your doctor about them. It is nearly impossible to continue with the next five steps of treatment unless you are convinced your diagnosis is correct and you have a good handle on what to expect in the way of symptoms.

Activity

"Avoid strict bed rest," says Lapp. "That just leads to deconditioning." Dr. Lapp recommends balancing light activity with frequent bed rest breaks. In fact, he has been working with physical and occupational therapists to put together a rehabilitation program to help get patients on their feet and moving up the treatment ladder. Several ingredients in Dr. Lapp’s activity rehabilitation program are described below.

Postural Assistance:

"In both CFS and FMS, pain, spasms and shortening of the muscles can all lead to abnormal posture with the head forward and the shoulders somewhat rounded. This frequently leads to back-of-the-neck headaches, headaches in the temples, neck and shoulder muscle tension, and shallow breathing." So if you already feel tired and achy, these problems will make you feel worse. Dr. Lapp suggests that patients routinely stretch their muscles throughout the day. If possible, consult a physical therapist about gentle stretches that you can do, including ones that can be done while sitting in a chair.

Deep breathing:

Dr Lapp notes that most patients breathe using the muscles in the upper part of the chest. This aggravates neck and shoulder pain, and increases the odds of postural muscles wearing out before noon. To ease tension on muscles that are already under stress from CFS/FMS, Lapp recommends deep breathing through the lower part of your diaphragm - what he calls "belly breathing."  Put one hand on your chest and the other one on your stomach, then breath deeply. Practice breathing so that the hand on your stomach does most of the moving. If you are not used to breathing this way, it will take several practice sessions throughout your day to retrain your lower diaphragm muscles to unconsciously do your breathing for you. "This type of breathing," says Lapp, " tends to relieve things like chest tightness, shortness of breath as well as spasms in the postural muscles."

Physical Modalities:

To treat mild muscle soreness, use hot or cold packs (whichever works best for you). The spray and stretch technique, using a prescription coolant spray to help relieve muscle tightness, can also be taught to you by your doctor or physical therapist. Then you can perform this modality on an as-needed basis at home. "Massage and acupuncture have been extremely helpful in some of our patients," says Lapp. Other techniques like transcutaneous electrical nerve stimulation (TENS) and ultrasound may provide some relief, but Lapp hasn’t found them as beneficial as the other methods mentioned.

Hydrotherapy:

Dr. Lapp’s version of this modality is to have patients float in tepid pool water or even a tub at home. You only need to be in the water for 15 minutes and the water should be around 85-90 degrees. You don’t have to do water aerobics, although you may eventually work up to this activity as you start to feel better and gain more endurance. How could this type of therapy work? Dr. Lapp presumes it helps patients in two ways:

1. the cool water tends to down regulate the immune system, so patients feel less fatigued and less flu-like.
2. The water pressure squeezes out fluid in the legs and trunk tissues where it tends to accumulate, and pushes it back into circulation where it is more helpful.

Low-level interval exercise:

Exercise no more than two to five minutes at a time and follow it up with five minutes of rest. Dr. Lapp says using this type of low-intensity interval exercise on a daily basis can help reduce the burning and searing types of pain, but it will not erase your pain altogether.

Summary of Activity:

Three or four visits to a knowledgeable physical therapist may be enough to teach you how to perform many of the above modalities at home, as needed. While most health insurance plans will not cover unlimited trips to physical therapists, a limited number of sessions for hands-on training should be covered. You may have to emphasize the short duration of the therapy needed and that it is medically necessary to learn how to do these techniques correctly. Once you are at the therapy clinic, have them show you a home program on how to stretch and strengthen your postural muscles.

Nutrition

Dr. Lapp recommends a basic prudent diet. The emphasis is on fresh fruits, vegetables, and light meats (e.g., chicken and fish). "We’ve always told patients to stay away from sugar, caffeine, alcohol, neurotoxins (e.g., aspartame, MSG), and tobacco," says Lapp. "Many of our patients with irritable bowel syndrome have been found to be sensitive to dairy and wheat, so these may be withheld from the diet to see if it makes a difference. Our treatment includes vitamins and supplements, not so much because patients feel better when they take them, but we’re trying to make them as healthy as possible."

Lapp suggests patients take a good multivitamin, and he may also recommend other supplements such as Vitamin B12; minerals like magnesium, potassium, and chromium; and supplements that may help decrease muscle fatigue such as coenzyme Q10 and essential fatty acids.

Symptomatic Therapies

Therapies targeting sleep, fatigue, headaches and pain are included in this category. "Of these four," says Lapp, "sleep is probably the most important to treat."

Sleep:

"Most of my patients complain that sleep is like butting their head against a brick wall all night long. Klonopin (an anti-seizure drug) and doxepin (a tricyclic drug) are the cornerstones of our therapy, followed by trazadone and maybe a hypnotic like Ambien.  Lapp has had some success with using low doses of melatonin at night and bright-light therapy in the morning.

Fatigue:

A small dose of Prozac or Zoloft may help some patients with daytime fatigue. Lapp has also found some success with drugs that raise the body’s dopamine levels, such as Wellbutrin and others.

Headaches:

Dr. Lapp uses Diamox, which selectively decreases intracranial pressure, and calcium channel blockers which are thought to increase cerebral blood flow. "Sometimes we have to turn to analgesic sedatives like Fiorinal," says Lapp. He added that for vascular type headaches (migraines), he found Midrin and triptans (e.g., Imitrex, Axert, Relpax, Maxalt, Zomig, and others) helpful.

Pain:

"There are no tricks for the treatment of basic pain," says Lapp. However, he has found that increasing water intake (along with salt) often helps reduce pain. "It’s inexpensive, safe and easy," says Lapp. Pain neurotransmitter altering drugs like desipramine, as well as other tricyclics like doxepin mentioned previously for sleep, may also help. Lapp has also been using Neurontin, and has found it to help some patients headaches and muscle pain.

Perpetuating Factors

People with chronic illnesses often battle depression and anxiety problems, and they need to be treated. "I have not seen anybody recover from CFS/FMS that has very severe depression," says Lapp, "so it must be addressed." Allergies, chronic infections (including yeast problems), and chemical sensitivities (odors, fumes and smokes) also need to be treated when present. While specific medical treatments may be helpful for allergies and infections, Lapp finds that teaching avoidance is the best way for patients to deal with chemical sensitivities.

Coping Strategies

Chronic illness can create additional stressors, financial pressures, and problems at work. It can also cause family dysfunction. Unfortunately, by the time CFS/ME or FM patients are diagnosed they often find themselves stranded without quality support structures to help them better cope with their illness. Dr. Lapp does not aggressively treat these problems himself, but he does refer patients to a counselor skilled in helping people with chronic illnesses.

Preventive Care

Lapp says preventive care may often be overlooked when a person is chronically ill. On the self-help level, he recommends that patients avoid sunbathing. "The heat can make you tired and weak, so avoid it." Other recommendations include bone density measurements to check for osteoporosis, annual examinations with routine blood workup, standard screens for cancer, a periodic review of medications, and regular documentation of the progression or regression of the illness to signal problems in therapy or the possible onset of other disease.

Dealing with Relapses and Flares

Relapse is an inevitable part of CFS and FM. Just as many of the symptoms come and go in a cyclical pattern, relapse tends to come and go also. When relapses are short lived, perhaps 1-3 days, then we generally refer to them as a flare. A flare is frequently triggered by an acute stress (for example, a death in the family) or overexertion. A relapse, however, may last days, weeks, or months, depending on its severity, the cause, and how it is managed. When a flare occurs, one is advised to review recent activities and events (such as travel, illness, or special activities) that may have triggered this temporary downturn. On the other hand, I and many patients have agonizingly searched for the cause for relapses only to conclude that the majority occur spontaneously. You just have to expect that no matter how hard you try or how “good” you are, relapses are going to occur. Thus, the first step in handling a relapse, therefore, is to accept, then deal with it.

When relapses are prolonged, they become particularly onerous and discouraging. Since most relapses will start to improve with rest and extra self-care, one should look for triggers and perpetuating factors that might be prolonging the relapse. Perhaps the most common perpetuator is a lack of sleep. It is not unusual for sleep to deteriorate during a relapse, and attempts must be made to insure a regular, scheduled sleep. Eight to nine hours of sleep nightly are generally recommended, but it may be necessary to sleep longer during &down times". Also, anxiety and depression always flare up during a relapse, and if untreated they may perpetuate the relapse by interfering with sleep, motivation, pain tolerance, and energy. It may be helpful to temporarily increase an antidepressant dose during such periods. Infections such as recurrent bronchitis or cystitis can both trigger and perpetuate "down times", and in endemic areas persisting infections such as Lyme Disease can be the cause. A good medical examination and some laboratory studies can identify infections as well as medical problems such as thyroid abnormalities and hypoadrenalism. Rarely, the concurrent development of another disorder such as lupus, diabetes, or rheumatoid arthritis can be the perpetuating factor. Allergies, either seasonally (hay fever) or situationally (new pet in the house) may be an aggravating factor, and hormonal changes such as menopause have far reaching effects with respect to sleep, joint discomfort, and neuroendocrine imbalances. Finally, have you failed to take prescribed medications as directed? Some medications accumulate in the body over time, new medications may interact with previous medications or supplements, and many persons with CFS or FM end up taking a large number of medications, each of which has been prescribed for a different symptoms of the disorder. If medications could be problematic, review them with your doctor and eliminate everything that is non-essential.

When flares and relapses occur, the first step is to accept that "stuff happens", then get down to the business of dealing with it. Rest is most important, and you will have to pace yourself more carefully – a little activity followed by supine rest in a quiet, non-distracting place. Patients are discouraged from staying in bed, however, because this disrupts the natural sleep pattern and rapidly leads to deconditioning. The objective is to get up, rest frequently on a sofa or lounger, but try to maintain some light activities, stretches, and relaxation techniques; the goal is to return to your daily routine as soon as possible. Delay, defer, or delegate as many tasks and chores as you can. This is the time to swallow your pride -- humbly and honestly ask others to help you out. From a medical standpoint, drink lots of fluids and supplement with salt (if blood pressure has declined during this relapse), take medications faithfully, and consider the use of high dose B12 or a short course of Kutapressin to "get over the hump". Tub soaks and pool therapy are particularly helpful during periods of relapse.

Perhaps the most important question is &how do I prevent relapses?" While most relapses are spontaneous and unprovoked, I do believe that persons with CFS or FM can reduce the number and severity of flares through observation and preparation. The first is to identify any recurring triggers such as stresses, exertion, or events that predictably drag you down. This is done by journaling and careful review of the events leading up to each flare or relapse. It goes without saying that if you stay within your “envelope of energy” the likelihood of relapse is slim. This is best accomplished by following a daily routine, using common sense to reduce your activity slightly on “bad days,” and increase your activity modestly on "good days". It is axiomatic that you must insure adequate sleep and take regular exercise.

Diet and Nutrition

There is no specific diet that is best for people with CFS/FM, but experience has taught us that certain foods are tolerated better than others. For example, a diet high in red meat and fat causes lethargy and indigestion or abdominal "fullness" in many patients. Why? Because red meat and fatty foods like fried foods and gravy are harder to digest than lighter foods. In very simplistic terms, heavier foods require more energy to digest. (Perhaps that is why after a big meal like Thanksgiving everyone feelings like lying down and taking a nap!) On the other hand, a "prudent diet" of fruits, vegetables, complex carbohydrates (like potato, rice, and pasta) and light meats (chicken, turkey and fish), is tolerated much better.

From experience we have also learned that certain food groups and habits are not tolerated well in CFS/FM. These are Sugar, Caffeine, Alcohol, NutraSweet ™ (aspartame), and Tobacco – recollected by the anagram, SCANT. Most PWCs crave sugar and note that sugar can provide a much-needed burst of energy. However, using sugar for a "quick fix" leads quickly to a hypoglycemic "crash", and the need for more sugar. The sugar junkie finds himself on a roller coaster of sugar ups-and-downs characterized by brief sugar highs and long hypoglycemic lows with lethargy, loss of energy, perhaps even weakness, tremor, and faintness. The only way to avoid this roller coaster is to eat small frequent meals and reduce refined sugar intake (sweets, candies, jams, jellies, even natural sweets like honey). Caffeine is also frequently used for a quick fixer-upper, but it too leads to a "crash" later on. Alcohol is not physically tolerated by most PWCs, and tobacco is simply unhealthy. Aspartame is widely used as a sugar substitute (NutraSweet ™ or Equal™, for example), but many people do not know that this purported "natural" product is broken down in the body to formic acid and eventually methyl alcohol. Formic acid (formaldehyde) is used as embalming fluid, and methyl alcohol is the highly toxic contaminant of "white lightening" that may cause blindness and kidney failure. In simplistic terms, aspartame just adds more toxins to the overburdened PWC, and in our experience frequently leads to headache or increased fatigue. Try to reduce your intake of SCANT, but you need not avoid them altogether.

Many people with CFS/FM are sensitive to dairy products and wheat (or gluten). If you suffer with abdominal complaints consider a 4 or 5 day trial diet that excludes any dairy products and wheat.  We call this our Modified Elimination Diet, and copies are available from the office.

Influenza Vaccination

Due to reports of severe relapses following immunization, flu vaccinations are generally NOT recommended to persons with CFS or FM unless (1) you have taken flu vaccinations in the past and tolerated them well or (2) you have a serious chronic illness (such as emphysema, diabetes, or heart disease) in addition to CFS/ME/ FM. Not only do some patients relapse after flu vaccination, but many do not sero-convert (develop antibodies) to the vaccination. Thus you may suffer the discomfort of a "shot" plus the misery of a relapse, and not even develop immunity.

These are the current recommendations from the Hunter-Hopkins Center: If you have tolerated it in the past, you may take a flu vaccination this year if you wish. Recognize, however, that you may not develop protective antibodies. If you are elderly, infirm, or have a serious chronic illness for which vaccination is recommended, weigh the risk of immunization against the risk of contracting the flu. If you don't take the flu vaccination, "antibiotics" are available to fight influenza. These should be started within 72 hours of onset in order to reduce the severity and the length of your illness. These drugs include:

1. Symmetrel (amantidine) 100mg bid for 5 days for influenza A
2. Flumadene (ramantidine) 100mg bid for 5 days for influenza A
3. Relenza (an inhaler) 2 puffs bid for 5 days for influenza A or B
4. Tamiflu One tab bid for 5 days for influenza A or B

(Tamiflu and Relenza are currently preferred due to resistance that has developed to the other antiviral agents.)

There have been anecdotal reports of relapses being triggered by Hepatitis B and Rubella vaccines as well, but pneumococcal, H. influenza, and tetanus seem to be tolerated satisfactorily.

Updated February 2008