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Even though there is so far no cure for either CFS or fibromyalgia, there are many ways to alleviate the symptoms of the two conditions. Treatments can reduce the effects of CFS and FM, bring greater stability, lessen suffering, and may lead to a higher functional level.

Medical treatments for CFS and fibromyalgia can be useful for most patients and you'll find them discussed in this chapter. But using medications for CFS and FM can be frustrating, because there is no standard treatment for either illness, that is, no medication that is predictably effective. If you want to use medications to treat your illness, a sensible approach is to find a sympathetic physician willing to work with you in a process of trial and error to find the drugs that help in your individual situation.

The self-management approach that is the focus in this book reflects a belief I share with CFS/FM experts that even though doctors and medications can help if you have either condition, your success in reducing symptoms and regaining control of your life will probably depend more on your efforts and willingness to adapt than on anything a doctor does for you. Making changes in how you live your life has several advantages over medications. Strategies such as pacing and stress management are inexpensive and safe. They affect multiple symptoms and have a high probability of helping. Most of the people with CFS and fibro that I have known who have shown marked improvement have relied primarily or exclusively on this approach.

Your Doctor's Role and Yours
 
There are four ways your doctor can help if you have Chronic Fatigue Syndrome or fibromyalgia. Each is valuable and important:

According to our friend and CFS/FM authority Dr. Lapp, there are four general rules that your doctor should follow in treating you: 

 

For more on your doctor’s role, see Dr. Lapp's article How Your Doctor Can Help If You Have CFS/ME.

As mentioned earlier, if you have either CFS or FM, you are likely to have a more important role than your doctor, because the way you live your life has a big effect on your symptoms and quality of life. Your habits and routines either intensify your symptoms if you live outside your limits or reduce them if you live within your limits. In the words of Dr. Lapp, “medical treatment does not treat the disease, it only palliates the symptoms.” The key to improvement is “acceptance of the illness and adaptation to it by means of lifestyle changes, for which medical treatment is no substitute.” 

Creating a Symptom Management Plan

The next four sections will lay out treatment options for the four main symptoms of CFS and FM: fatigue, pain, unrestorative sleep and cognitive problems. In this section, I’ll give you an example of creating a treatment plan by describing how I settled on my approach to fatigue, my most persistent and disruptive symptom.

I started by listing possible causes of my fatigue: 

Activity level seemed the most crucial to me. There was an obvious connection between the number of hours a day I was active and my fatigue, though the effects were sometimes delayed a day or two. Whether the effects were immediate or delayed, I experienced elevated fatigue if I was active for more than about four hours a day. Rest produced a reduction in my exhaustion. Ironically, I found hope in this push and crash pattern. I reasoned that if the connection between activity and fatigue was so direct, then I might be able to gain some control if I found a level of activity that my body could tolerate.

So the key facts about CFS were the combination of the tight limits it imposed and the high cost of exceeding those limits. I spent a lot of time determining my limits, adjusting my life to fit within them, and then trying small experiments to expand my activity level. I used a variety of pacing strategies, but if there was one secret to my recovery, it was my use of planned rests: twice a day for 15 minutes. Resting on a planned schedule greatly stabilized my life, enabling me to get off the push and crash roller coaster and giving me a much greater sense of control. (There is much more on using rest and other pacing strategies in Part 3.)

Beyond activity level, the other factor that seemed especially promising was inactivity. I knew that even athletes become deconditioned if they stop exercising for even a brief time, so I was sure that part of my fatigue was due to my lower activity level and that the way to fight this was through exercise. The question was how much was both helpful and safe.
My solution was to experiment to find the length and intensity of exercise that produced an aerobic workout without increasing my symptoms, either during my workout or later. Initially, that level was about 20 minutes of walking a day at a pace that raised my heart rate to 90 to 95 beats per minute. (This was a big step back from the days I hiked 15 to 20 miles a day.)

Improving my sleep also seemed worth pursuing. I knew from talking to other people with CFS that sleep was often not restorative if someone had CFS, but I thought I could help myself to some degree by maintaining good sleep-related habits. My reasoning was that while CFS might be the major reason for nonrestorative sleep and not directly responsive to quick fixes, I could probably reduce my morning sluggishness if I maintained regular hours and avoided things like late nights on the computer or watching TV. So I made it a rule to turn off the TV and stop using the computer at 9 p.m.

The final factor that I thought might be affecting my fatigue was pain. To the extent that I responded to pain by tensing up, I might increase my fatigue. Using relaxation was helpful, so I integrated a relaxation technique into my daily rests.

In the first year or so, I focused my efforts on those four areas. Over time, however, I came to believe that stress was second only to overexertion as an intensifier of symptoms and it became a major area of focus. But it took me some time to recognize its effects and to explore ways to manage it. Similarly, I was slow to recognize the role played by emotions in CFS. Recognizing those omissions taught me that I had to remain open to adjusting my approach as I deepened my understanding.

Lastly, I assumed that the final two factors on my list of possible causes of fatigue didn’t apply to me. Since I had decided not to take medications to treat my CFS, I was not worried about fatigue due to drugs. And I thought my nutrition was probably adequate, because I had eaten a low-fat, mostly vegetarian diet for many years and I hadn’t experienced intestinal symptoms since coming down with CFS. I didn’t rule out looking at my diet at some point, but I decided to focus my initial efforts elsewhere.

In focusing initially on fatigue, I discovered two important principles that I was able to use many times. First, because a symptom can have multiple causes, it’s often helpful to use multiple strategies in response. And, second, finding what works often takes experimentation.

Once I developed my approach for addressing fatigue, I asked myself whether I needed additional strategies for my other major symptoms, specifically I wondered whether I needed separate strategies for brain fog and pain. After observing the effects of my efforts to control fatigue, I concluded that all three symptoms were responsive to the same strategies, so that, by and large, I didn’t need separate strategies for each symptom. Taking regular rests, limiting my activity level, and reducing the stress in my life worked on all three symptoms and also seemed to improve my mood as well.

So that’s how I approached fatigue. As I mentioned in the Introduction, by using self-management I was able to improve at a rate of about 1% per month and over about four years returned to my pre-CFS level of health, including taking long hiking trips.

We turn now to an exploration of treatment options for the four main symptoms of CFS and fibromyalgia, beginning with fatigue. To create your symptom management plan, I suggest you work on one symptom at a time, beginning with the one that is most bothersome. To proceed, list and evaluate your options; settle on one or two and try it or them; evaluate the results; and, based on the results, refine your strategies or try new ones.

Fighting Fatigue

 

Fatigue is the central symptom in CFS and a significant problem for most people with fibromyalgia. The term ‘fatigue' may be a misleading way to refer to refer to the physical and mental exhaustion experienced by people with the two conditions. Manifesting as listlessness, sleepiness and a reduced tolerance for exercise, fatigue can be brought on by low levels of activity or for no apparent reason. Fatigue is often much greater than and lasts far longer than it would in a healthy person ("post-exertional malaise").

For people with CFS and/or FM, fatigue can have many causes. One is the conditions themselves, which leave people with less energy for daily activities. Other causes include:

 

You can address fatigue by matching the strategies below to the causes you experience:

 

Probably the single most important key to controlling fatigue and other symptoms of CFS and FM is to adjust activity level to fit the limits imposed by the two conditions. We call this "living within the energy envelope" or pacing. Rather than fighting the body with repeated cycles of push and crash, you seek to understand your body's new requirements and to live within them.

Living successfully with CFS or fibromyalgia requires many practical adaptations: developing through trial and error a detailed understanding of your new limits, and then gradually adjusting your daily habits and routines to honor those limits. Each person's limits will be different, depending mainly on the severity of their illness. Part 3 explains how to define your envelope and describes many practical strategies for living within it, such as scheduled rest breaks, short activity periods, switching between high and low intensity tasks and using a schedule.

Pacing also includes mental adaptation: accepting that life has changed. Acceptance is not resignation, but rather an acknowledgment of the need to live a different kind of life. This acknowledgment requires you to develop a new relationship to your body. In the words of one person in our program, "Getting well requires a shift from trying to override your body's signals to paying attention when your body tells you to stop or slow down."

 

Fatigue is intensified by pain and poor sleep. Pain is inherently tiring and also tends to produce muscle tension, which in turn intensifies fatigue. Non-restorative sleep leaves you as tired in the morning as you were before going to bed. Treating pain and sleep using the strategies described in the next two sections produces the bonus of reducing fatigue at the same time.

Reciprocally, treating fatigue can have a positive impact on sleep and pain. Since feeling tired increases the experience of pain, reducing fatigue lessens pain. In sum, fatigue, pain and sleep interact with one another. An improvement in one symptom can have a positive effect on the other two. Probably the most common symptom to attack first is sleep.

 

Exercise counteracts the part of fatigue caused by a lower activity level and the resulting loss of fitness. Exercise improves fitness, thus reducing the fatigue caused by deconditioning. It also helps combat pain, lessens stress and improves mood. For ideas on how to exercise safely, see Chapter 17.

 

Because stress is so pervasive in chronic illness and because it intensifies symptoms such as pain and poor sleep as well as fatigue, many people with CFS and FM use relaxation and other stress management strategies to combat it. See Chapter 19 for our ideas on both stress reduction and stress avoidance. Like other self-management strategies, stress management techniques improve multiple symptoms.

 

Powerful emotions such as depression, frustration, anxiety, guilt and grief are a frequent consequence of chronic illness, a response to the disruption, losses and uncertainty it brings. One symptom of depression is fatigue, so treating depression can reduce fatigue. As with pacing and stress management, addressing depression and other feelings triggered by illness can improve several symptoms. For ideas on managing emotions, see Chapter 20.

Improving Nutrition
People with CFS and fibromyalgia often experience several kinds of problems getting good nutrition. Lack of appetite or severity of symptoms may make it difficult to spend enough time to prepare and eat balanced meals. Some possible strategies include preparing meals in ways that respect the body's needs (e.g. taking rest breaks, using a stool, limiting repetitive motions), buying food online or by phone, preparing and freezing meals when feeling better, and getting help. 

Second, most people with CFS and FM experience an intolerance of alcohol and many are sensitive to caffeine and other stimulants, sweeteners (such as sugar, corn syrup, fructose, aspartame and saccharin), food additives (such as MSG, preservatives, artificial colors and artificial flavors) and tobacco. Cutting down or eliminating these substances may reduce symptoms and mood swings, and also improve sleep.

Third, a substantial number of people with CFS and fibromyalgia experience food sensitivities or food allergies or have difficulty absorbing nutrients. Negative reactions include gastrointestinal symptoms (such as heartburn, gas, nausea, diarrhea and constipation), headaches, muscle pain, changes in pulse and fatigue. Some common sources of food allergy for people with CFS and FM include dairy products, eggs, soy, wheat and corn. Other sources include tomatoes and potatoes; fruits; spicy foods; gas-producing vegetables, such as onions, cabbage and broccoli; raw foods; and nuts.

There are two major treatments for food sensitivities and allergies: avoidance and the rotation diet. The first step in both treatments is the same: identifying foods that trigger allergic reactions. To do this, eliminate foods you think might cause problems, then reintroduce them one by one. If foods produce strong reactions, such as diarrhea, nausea, headaches or hives, you will probably have to eliminate them from your diet entirely. Often, the elimination of just a few foods can improve symptoms dramatically. Alternatively, you may find you can tolerate a food if you eat it only occasionally. This is usually called the rotation diet. After eating a food, you wait a period of four to seven days before eating it again.

If you have food sensitivities, they may be caused by other conditions such as irritable bowel syndrome (IBS); yeast infections, like candida; celiac disease, which causes a strong allergic reaction to wheat and other grains; and lactose intolerance, which is the inability to digest the sugar in milk.

 

Many medications, including some anti-depressants and drugs prescribed for pain, create fatigue as a side effect. To combat this source of tiredness, ask your doctor about fatigue when reviewing medications. A change of medication or a change in dosage may help.

You might also consider certain stimulant medications as a treatment for fatigue. Drugs such as Nuvigil, Provigil, Adderall and Ritalin can help those who are somnolent during the day, as opposed to just tired. (Somnolent individuals fall asleep watching TV, reading, riding in the car, etc.)

 

As you read through the next three sections, you will find pacing, stress management and exercise discussed repeatedly, just as they were in this section on fatigue. They are “super strategies.” Using them will help you reduce multiple symptoms.

Strategies for Pain
 

Pain is usually the central symptom in fibromyalgia and is often a problem for people with CFS as well. For people with FM, pain is generally felt all over the body, though it can start in one region and spread or move from one area to another.

It may be accompanied by neurological problems such as intermittent tingling and burning or numbness in the hands, arms, feet, legs or face. For people with CFS, pain may be experienced in the joints or, more commonly, as an overall body pain sometimes described as feeling like being run over by a truck.

Because pain in CFS and FM can have a variety of causes, it is usually managed with a variety of strategies such as the following:

 

A frequent cause of pain is overdoing or having an activity level that is beyond a person's limits. Pacing offers a way to bring stability and control by keeping activity level within the limits imposed by illness. Pacing can involve a variety of strategies, including: reducing overall activity level, delegating, alternating activity and rest, having short activity periods, switching between high and low intensity tasks, using the best hours of day for the most demanding activities, staying within limits for mental and social activity, and keeping records to see links between activity and symptoms.

Pacing is the heart of lifestyle adjustment to CFS and FM, and helps control all of the four main symptoms. For ideas on how to incorporate pacing into your life, see Part 3.

 

Exercise is one of the most-commonly prescribed treatments for FM and can be helpful for CFS as well. An exercise program done regularly can help reduce stiffness, counteract deconditioning and improve outlook. Though frequently a cause of relapses, exercise need not trigger a flare if done properly. A program of gentle stretching can be helpful for both FM and CFS. For more ideas and exercise guidelines, see Chapter 17.

 

People with fibromyalgia can help reduce their pain by experimenting with how they hold their body and how they move. Many find that staying in one position for an extended period of time, sometimes as little as 20 to 30 minutes, increases stiffness and intensifies pain. Moving periodically can help, as can limiting the length of time spent doing repetitive motions like chopping vegetables. Some people are helped by Tai Chi.

Being attentive to posture can help as well. Since people with FM tend to slouch, which puts tension on muscles in the neck and shoulders, Dr. Lapp teaches his patients to sit up straight, holding the shoulders back and tucking in the chin.

 

The experience of pain is intensified by stress and by emotions like worry, frustration and depression. Emotions create muscle tension, which is directly painful. Emotions also contribute to the experience of pain indirectly by increasing stress and a sense of helplessness.

Relaxation is an antidote to both tension and stress. Also, it offers a distraction from pain. For some people, relaxation involves the regular use of a formal relaxation or meditation procedure, such the Relaxation Response, the Body Scan, Progressive Muscle Relaxation and the use of imagery. (For step by step instructions, see the article Stress Reduction: Five Practical Techniques on our website.) Other relaxing activities include exercise, mindful breathing, baths and hot tubs, massage, rest breaks and listening to tapes or CDs. Integrating one or more periods of relaxation into your daily routine counteracts pain, stress and negative emotions.

 

The experience of pain is intensified by emotions like worry, frustration and depression. Worry and frustration create muscle tension, which makes pain more intense. Relaxation procedures can reduce pain both directly by easing muscle tension and indirectly through reducing stress. People who are depressed have a lower threshold for pain. Self-help strategies, sometimes in combination with medications, can help manage it. For more on treating emotions, see Chapter 20.

 

Pain, fatigue and poor sleep are tightly connected. Fatigue deepens the experience of pain. When we feel tired, we experience pain more intensely, so if we reduce fatigue, we lessen pain. Similarly, poor sleep intensifies pain, so improving sleep can help control pain. Of the three symptoms, poor sleep is often addressed first among people with CFS and FM.

 

Heat, cold and massage can be used for temporary relief of pain. Heat is best utilized for reducing the pain that results from muscle tension and inactivity. The warmth increases blood flow and thereby produces some relaxation, reducing pain and stiffness. For localized pain, heating pads or hot packs are used frequently. For overall relief, people often use warm baths, soaks in a hot tub or lying on an electric mattress pad.

Cold treatments decrease inflammation by reducing blood flow to an area. They also may numb the areas that are sending pain signals. You might use gel packs, ice packs or bags of frozen vegetables. With both heat and cold, you should not use the treatment for more than 15 or 20 minutes at a time.

Massage of painful areas can also provide temporary relief from pain. Like heat, massage increases blood flow and can also relieve spasms. You can consider three different forms of massage: self-massage using your hands, massage using a handheld device, and professional massage. If you use a massage therapist, ask her to be cautious and to check frequently on your pain sensitivity.

 

You can gain some control over pain by identifying the situations that trigger or intensify pain and then taking steps to change them. For example, you might find that you are not able to keep up with household chores as you used to. Using problem solving, you brainstorm a variety of solutions, such as spreading the chores out over several days, doing them on one day but taking rest breaks, and getting help from others, either family members or hired help. You then try a solution to see whether it works, evaluate and try again.

If you have a job and find that your pain increases when you work under deadlines, problem solving could take several forms. You might train yourself to take time to relax your muscles. Looking at your situation more broadly, you may identify work overload as a recurring problem and consider reducing your hours, changing your responsibilities or taking time off from work. For step-by-step instructions for problem solving see Chapter 5.

 

Immersing yourself in pleasant thoughts and activities can lessen pain by providing distraction. Imagery can be especially helpful, as you visualize a pleasant scene, involving as many senses as possible.

If you want to transport yourself to the beach, see the light shimmering on the water, feel the warmth of the sun on your skin, hear the waves crashing and smell the mustard from the hotdogs. Engaging in activities that bring pleasure can also provide distraction from pain. Examples include reading a book, watching a movie, taking a bath, listening to or playing music and spending time in nature.

 

Thoughts can have a dramatic effect on our moods and, in turn, on our perceptions of pain. Negative thoughts can start a vicious cycle. An increase in symptoms may trigger negative thoughts like "I'll never get better" or "It's hopeless." Such thoughts can then make us feel anxious, sad, angry and helpless, intensifying pain and triggering another round of negative thoughts and more muscle tension.

This cycle can be reversed. It’s possible to learn to recognize and to change habitual thoughts to make them more positive and more realistic. This well-researched approach, called Cognitive Therapy, can be found in books like Feeling Good by David Burns and Learned Optimism by Martin Seligman. Also, you can learn it from therapists trained in Cognitive Therapy. For an introduction, including examples, see the article Taming Stressful Thoughts.

 

People with FM and CFS often treat pain with medications. Because no medication is consistently helpful and because sometimes pain relievers lose effectiveness as the body becomes accustomed to them, multiple rounds of experimentation are often needed. Usually, patients are started on dosages that are a small fraction of normal dosage levels.

FM and CFS patients who seek pain relief through medications usually begin with non-prescription products, such as aspirin and other over-the-counter pain relievers, such as Advil (ibuprofen), Aleve (naproxen) and Tylenol (acetaminophen). Prescription drugs that improve sleep can have a beneficial effect on pain as well.

Another category is anti-depressants that include amitriptyline, Prozac (fluoxetine) and Paxil (paroxetine). Also, NSRIs (Norepinephrine-Serotonin Reuptake Inhibitors) have been shown to be effective for pain, have fewer side effects, and usually remain effective after months of use. These include Effexor (venlefaxine), Cymbalta (duloxetine), and Savella (milnacipran hydrochloride). The last two have been FDA approved for treating pain from fibromyalgia.

Yet another category is anti-epileptic drugs. The first drug of this type was Neurontin (gabapentin). More recently Lyrica (pregabalin) has been FDA approved for the treatment of fibropain.

Some people find help through prescription medications such as Ultram (Tramadol). Tramadol has the strength of codeine but fewer adverse reactions and is rarely addictive. It is very effective and safer for people with CFS and fibromyalgia than narcotic medications, which are not recommended except through a referral to a pain management specialist.

Many fibromyalgia patients also experience Myofascial Pain Syndrome (MPS), a pain condition localized in trigger points (specific locations in muscles or fascia), often in the neck or shoulders. MPS may be treated with medication, a special physical technique called myofascial release, dry needling, and the injection of local anesthetics into the trigger points.

Some patients experience neuropathic or nerve pain, burning or electric shock sensations, felt most commonly in the hands and feet. This type of pain is often treated with anti-seizure medications, such as Neurontin or Lyrica.