Fibromyalgia: Simple Relief Through Movement

First Chapter

CHAPTER 1
Concrete Lessons

If you have been diagnosed with fibromyalgia, you have probably been told repeatedly to exercise. If you are like most people, the word exercise immediately conjures up images of hard physical work, spending lots of time in a gym, and dealing with the low energy and pain that inevitably come after exercising. You may have been told that the only exercise you can do is in a heated pool, or possibly that there is nothing that can be done for fibromyalgia. If you are really motivated and assertive with your medical care, you may have had someone sit down with you and lay out a conventional exercise program. You may have found that when you try to exercise your pain gets worse, not better. Perhaps you feel so tired, sore, and stiff that exercising seems as likely as winning the lottery. It's not uncommon to feel discouraged, hopeless, and fed up with trying to exercise or get any relief from your pain.

Before you resign yourself to a life of constant pain and inactivity, ask yourself, "Has anyone told me how to use movement to ease my pain? Have I ever been given suggestions of how to use movement to care specifically for fibromyalgia?" If the answer is no, you're not alone. The average person diagnosed with fibromyalgia may not be given any guidance on how to use movement to relieve pain, and those told to exercise will often do so only to find the pain gets worse. If you have become very inactive, you may have gained weight and begun to experience other problems that make pain and immobility even worse, such as knee, foot, or back pain. You may feel you have no time to get more activity and are simply fated to a life with chronic pain. It's easy to understand how frustrated and exhausted you might feel. Whether you are an exercise veteran or consider changing TV channels a good workout, there is hope!

By the time you finish reading this book you will know the following:

• The key to managing fibromyalgia
• Why traditional exercise programs are not for you
• How to determine which activities will cause you increased pain (and should be avoided) and which ones will reduce your pain
• The difference between physical activity and exercise
• How to know the difference between pain that's telling you to rest and pain that's telling you it's time to get moving
• How much movement and how much rest is enough
• How (and whether) to use muscle conditioning to decrease pain
• How to stretch properly to reduce pain
• How to communicate your needs to family members, coworkers, and health care providers

While you read this book, I'd like you to allow yourself the luxury of a new mind-set about your pain, body, and previous experience with exercise, activity, and movement. Whether you were very athletic as a child or the last one picked for teams in phys-ed class, put those self-concepts aside for now. They'll be there for you to pick up at the end of the book if you choose to do so. As you work through the ideas presented here, remain open to the possibility that your experience of pain and movement can be different. Imagine a door opening in your mind, letting fresh air into the stagnant room of chronic pain. Let's clear the air of some common misconceptions about fibromyalgia and pain and begin to rethink the options you have. If you are already sold on the idea of exercise and have no difficulty keeping an active lifestyle, feel free to jump ahead to the next chapter. But the rest of us will begin at a stoplight.

A Concrete Lesson

Imagine that you are standing at a stoplight waiting to cross the street. You hear a thundering sound approaching the intersection, and when you turn to look for the source of the sound, you see a giant truck pulling up and stopping in front of you. Upon closer inspection you notice that this is a cement truck. What's unique about a cement truck that makes it different from a truck that carries dirt? The back of the truck is moving, right? It's constantly moving and mixing its contents in a rounded barrel. Stop and think a moment. Why does a cement truck keep turning its contents? What would happen if the cement truck were to stop the constant mixing motion? It keeps turning because cement will stay soft as long as it keeps moving. But if it were to stop the rotation, the cement would solidify into concrete - rock solid and almost impossible to soften again.

The cement truck pulls away but leaves you with a special new insight: fibromyalgia causes your muscles to act like concrete. They require more movement than those of a regular body, and without that movement they will set and get hard and painful.

The most important key to managing muscles affected by fibromyalgia is to keep them moving. In case this key point may have missed you, let me restate it: The key to managing fibromyalgia is to keep your body moving, ideally in as gentle a manner as possible. There are other things to consider and utilize, such as medications, but by far the most important thing you can do, as well as the most effective form of pain relief, is to keep your body moving. Just as you can take a pain reliever (such as aspirin) for a headache, you can use movement to relieve pain.

Why Me?

Naturally, if you have fibromyalgia, you want to know why. Unfortunately, the list of what is known and generally accepted about fibromyalgia is small and rapidly changing. At this time, it's classified as a neuroendocrine condition. This means that fibromyalgia seems to affect the way the body communicates pain to the brain and the systems that govern this communication and additional communication that occurs within your body. In the simplest of terms, you have a chemical imbalance that is setting off a cascade of symptoms in your body. You are probably all too aware of the various symptoms of fibromyalgia, and body pain is almost certainly right at the top of the list. Other common symptoms include tender, or trigger, points in a wide variety of locations on the body, as well as fatigue, stiffness, anxiety, and poor sleep.

Most people with fibromyalgia experience pain in their muscles. It has been shown that there are biological differences in the muscles of people with fibromyalgia, but it's thought that these differences are a result of the condition, not the cause. For example, there is usually less blood flow and hence less oxygen in muscles affected by fibromyalgia. There also seems to be a difference in how the muscles respond and the speed at which they heal.

Normal muscle tissue is soft when it's in a relaxed position. Relax your left arm, and reach over and feel the muscles just above the crease in the elbow. They should feel soft and spongy to the touch. When a normal muscle is moved gently (such as when you shop for groceries), the blood flow to the muscle increases and the oxygen level in the muscle increases. When finished with the job, the muscles rest again by returning to a soft, relaxed state. Any small tears in the muscle tissue are repaired and the muscles are restored to their prework level.

During intense exertion such as lifting weights, blood and oxygen levels increase as in the previous example, but this time the muscle fibers tear and break down considerably more. The body unaffected by fibromyalgia responds to this demand by rebuilding the muscle fibers stronger than they were before the exercise session. It's as though the body says, "If she's going to be doing that kind of work, I had better make her muscles stronger, so they're ready." The body adapts to the conditions that it's regularly exposed to, which is how exercise makes us stronger and why lack of care causes the body to decondition. When does the body do this adapting to exercise? When it's exercising? No. The body adapts during rest, partly during a certain stage of sleep, which will be discussed later.

Now reach up to your shoulder and walk your fingers in a couple of inches, so you are midway between your shoulder and neck. Push down gently. Feel the difference? If you are like many people with fibromyalgia, these muscles feel hard and rigid, and they lack the soft, pliable quality of healthy muscles. They may feel so hard and rigid you might think you are pressing on bone by mistake! They often have tender points that can be so painful that even gentle touch is uncomfortable. When you engage in mild motion such as unpacking groceries, any tiny tears in the tissue do not repair as readily, and the blood and oxygen levels are often below normal. As you finish your task the muscles get stiff and sore, making it less likely that you'll do more activity, which in turn causes more stiffness. If you try to do the weight lifting described in the previous paragraph, your muscles get tiny tears during the exercise, which is normal; however, they then fail to repair in the following 24 hours the way a normal muscle would. Your body tends to overreact to the whole experience and stiffens up with a combination of normal soreness after exercise and abnormal stiffness and pain due to the fibromyalgia.

Getting Your Z's

There's another crucial variable here, however, and that's the quality of your sleep. It's thought that a significant part of fibromyalgia is due to a lack of what's called restorative sleep. Restorative sleep is one of several stages of sleep, during which your body repairs damaged tissue (such as muscle), and people with fibromyalgia almost always miss this crucial stage. In fact, it's been found that if you take people without fibromyalgia, hook them up to monitors while they sleep, and then interrupt them every time they approach the restorative stage, they will develop symptoms very similar to those of fibromyalgia. It's easy to see how the lack of restorative sleep can lead to a vicious circle of unending pain; poor sleep causes more pain, pain causes poor sleep, and so on.

At this point, you might be asking yourself the chicken and the egg question. Does a sleep disorder cause fibromyalgia or does fibromyalgia cause a sleep disorder? The final answer to that question isn't known yet, but the good news for you is that the answer doesn't matter! Regardless of the cause and effect relationship of poor sleep and chronic pain, you can begin to intervene on either side of the problem and progress from there. There are several ways to increase the chances of getting enough restorative sleep, and there are ways to reduce pain and stiffness. I usually recommend that people begin to improve their sleep and then begin to manage any pain that has not been relieved by good sleep.

One of the best ways to ensure that you are getting restorative sleep is to use medications. The medications used for fibromyalgia are usually from the group of drugs known as antidepressants, which encourage restorative sleep. Unless you have depression in addition to fibromyalgia, you will usually take a lower dose than someone who is being treated for depression. Side effects are usually mild (such as a dry mouth), and virtually all side effects disappear after two weeks.

If after a few months on the medications you decide they're not helping, you can always stop taking them. Be sure to discuss how to do this with your doctor before discontinuing them. If you do it in the wrong way, you may feel worse than you did while taking them. Be patient and meticulous in how you take them. Together you and your doctor can determine the best place to start.

It's also important that you speak with your doctor to see if any other medications you are taking could be interfering with your restorative sleep. Many of the tranquilizing drugs, including alcohol, actually reduce the amount of restorative sleep you get, despite their main effect of making you sleepy. Because most people with fibromyalgia describe sleep problems, doctors often prescribe a mild sedative, unintentionally making the problem worse for you.

Other variables that can affect your sleep include:

• The quality and condition of your mattress
• The quality and condition of your pillow
• The temperature of your room
• The level of darkness
• The amount of distractions during the night, such as a partner who comes home late and wakes you, snores, or hogs the covers; or noise from children, pets, traffic, or neighbors that may disturb you
• Working late or overnight shifts
• Having irregular sleep/ wake times

Most of the patients I've worked with sleep best while on medications, with a mattress on the soft side of firm, and in a very quiet, dark room. Supportive pillows and natural fiber sheets (such as all cotton) may also help. Of course, you may have different preferences. I'm asking you to think about what works best for you and to make those changes.

After all this talk about how incredibly important restorative sleep is, you might be wondering, "How will I know if I'm getting restorative sleep?" Great question. People who get restorative sleep:

• Wake up feeling rested and alert, not stiff, sore, and exhausted
• Dream nightly and often remember their dreams; do not have frequent nightmares
• Sleep through the night and do not wake up frequently

If you are starting to think you may have never had a good night's sleep, it's time to see your doctor to find out if you are a candidate for medication to help you sleep.

It's known that exercise will improve restorative sleep; however, I don't suggest that you begin using exercise to manage your sleep. You could actually make your pain worse by exercising and then failing to heal during the night. You need quality sleep first. You probably never thought you'd hear someone in the health professions telling you to not exercise, but if you have not been sleeping as you should for at least two weeks, that's exactly what I'm telling you to do. Don't exercise. Whether you are getting restorative sleep will determine what choices you have for activity and exercise. Invest some time into getting your body's natural healing process (sleep) up and running before you place more stress on it with exercise.

Getting Started

Once you are getting quality sleep on a regular basis, you are ready to start using movement to ease the remaining pain. I'm often asked if it's possible to use traditional exercise guidelines if you have fibromyalgia. The answer is no. There are three reasons why you should not use traditional exercise guidelines, even when you are sure you are getting restorative sleep.

First, there is a difference between activity and exercise, and it's critical that you understand the difference between the two to best care for fibromyalgia. If you don't get any activity but launch right into exercise, you'll be setting yourself up for days of pain. We'll discuss this in more depth later. To care for fibromyalgia you need as much activity as possible and gentle, moderate aerobic exercise. Regular exercise guidelines rarely mention activity. In addition, traditional exercise guidelines virtually never address your special needs. Even with the medications helping you get restorative sleep, you still need special guidelines for both of these important areas of movement.

Second, the medications don't alter the tendency for your muscles to stiffen during periods of inactivity or from movement that's too severe, so it is important that once you are getting good sleep, you have guidelines tailored to your condition. I've had clients tell me, "I'm in so much pain! I don't understand it because I'm taking my medications." Invariably after more probing, I find out they are sedentary most of the day, and when they do something physical, it's injurious. It's not fair to live as though you don't have fibromyalgia and then blame the medications for not doing their job. Getting restorative sleep is the first step. Then you need movement guidelines that are specific to fibromyalgia. This does not mean that some aspects of conventional exercise won't work just fine for you, but it's important to know what's fine and what isn't. That's what this book will help you do.

Lastly, your body will tend to heal and adapt to exercise more slowly than the body of someone without fibromyalgia, so the standard recommendations will often leave you in pain and without progress.

Changes to your activity and exercise should always be done one at a time, and I recommend that people make them in this order:

1. Make sure you are getting restorative sleep.
2. Get at least 60 minutes of activity per day, ideally 5 minutes of movement for every 30 minutes spent sedentary (the difference between activity and exercise will be discussed in Chapter 3) 3. Stretch at least five to seven times per week.
4. Do gentle aerobic exercise at least five to seven times per week.
5. Do muscle conditioning two to three times per week.

If this sounds overwhelming right now, relax. You don't have to do all of it. You don't have to do any of it. This is simply the order you should use for best pain relief. If you're still waking up feeling like the earth's gravitational pull suddenly got stronger during the night, you need to focus on the first item. Don't try to skip around in the list. Work through the sequence.

We'll be discussing fatigue further later on, but it is important to mention it here as well. One of the main symptoms of fibromyalgia is fatigue, and this is especially true if you are not getting restorative sleep. This can be a major problem because the main thing that helps ease the pain of fibromyalgia is movement, which takes some effort and energy, especially in the beginning. Low energy and low levels of activity feed off each other and contribute to pain.

Managing fibromyalgia successfully will require some effort on your part. You do not have to exercise or even increase your level of activity. You have a choice. If you prefer to live with a higher pain level (and the other health risks associated with an inactive life), that may be a valid choice for you right now. There are trade-offs for every choice you make in life, and managing your fibromyalgia is no different. The advantage of a sedentary life is that no effort is spent finding ways to be gently active. The downside is a life with more pain, fatigue, and limits. By choosing less pain, you will be spending more energy and time on staying active. Remember the gift to yourself of staying open-minded, choosing your pain, movement, and your body, and consider starting with a small change.

Anytime we decide to make a change in our lives it requires a certain amount of energy and planning. We need to be ready to change. One person reading this book may be making plans to get more activity in her life, while another might only be considering it. Still another person might be very active and exercising already, but interested in making modifications.

I recently worked with one young woman who reminded me of how important it is to be honest with yourself about change. She had been diagnosed with fibromyalgia many years earlier but had not taken an active role in caring for it. One questionnaire asked her what her weekly goals were for aerobic exercise. When I spoke with her later, she said that she thought the questions about exercise were useless and stupid. I suggested we talk about why she felt that way. She said, "Well, I knew the right answer was three to four times a week, so I put that. But that is completely unrealistic for my life right now. This whole section was useless to me." I asked her if it was possible that the reason it felt useless to her was because she didn't really consider what her answer was, but rather put in what she thought was the right answer. She considered this, and I encouraged her to rethink the question and come up with something that would be realistic for her life. In doing this she decided that an honest answer was that taking short walks once or twice a week was possible, even enjoyable, for her, and would be significantly more exercise than she was currently getting. Try to use this perspective when you are thinking about your responses. It takes courage to consider any change, and even more courage when chronic pain is involved. The hope of less pain motivates us all.

In Review

Movement is an indispensable part of keeping your body from feeling as though it's made of cement.

Quality sleep is a foundation in treating fibromyalgia and must be in place before you attempt any exercise. Medications can be an indispensable way of improving your sleep and treating fibromyalgia. Do not attempt any exercises outlined in this book until you and your doctor are sure quality sleep is firmly in place.

There is hope! Most people who follow the guidelines in this book will have significantly less pain, depression, and anxiety; will often lose weight (if necessary); and will improve their overall health.

Making changes takes courage and honesty with yourself but is well worth the effort.