Starting in the early 1800s, physicians have recognized a condition characterized by widespread pain, stiff muscles, profound fatigue and disturbed sleep, which they called “muscular rheumatism”, fibromyositis, or fibrositis. Now known as fibromyalgia, this chronic condition affects up to six percent of the population. The vast majority of those diagnosed with fibromyalgia are women, but men and children can also have the illness, and it occurs more commonly in families.
Fibromyalgia is a chronic condition characterized by fatigue and widespread musculoskeletal pain that is present above and below the waist especially in “tender points.” Symptoms can also include mental processing problems, for example, problems with short-term memory and concentration, headaches, sleep disorders, heat/cold intolerance, anxiety or emotional numbness, heart problems, including rhythm abnormalities, and marked weight change.
What causes fibromyalgia is not well understood. However, most patients describe a physical trauma, such as a whiplash or neck injury from a car accident, or a viral infection, or emotional trauma at the beginning of their fibromyalgia pain.
Fibromyalgia is considered a syndrome because it is characterized by a group of signs and symptoms. These include:
Most people diagnosed with fibromyalgia feel pain all over their bodies, above and below the waist and on both sides of the body. Many report that the pain is worse at some times than at others. For example, morning stiffness is common, and the pain may be worse on some days than others. The type of pain varies and may be described as burning, aching, shooting, stabbing or tingling. It may also change locations. Headaches and temporomandibular joint (TMJ) syndrome, which causes jaw pain, are also common.
The fatigue of fibromyalgia ranges from the feeling of being slightly tired to the exhaustion of a flu-like illness. The fatigue may always be present to some degree, or it may suddenly sweep over a person like a wave, bringing with it a longing, or need, to lie down.
Some describe their fatigue as feeling like there are concrete blocks tied to their arms and legs. Some also report “brain fatigue” – feeling totally drained of mental energy and having difficulty concentrating.
Brain Function Problems
Some people with fibromyalgia experience problems with poor concentration, thinking clearly, short-term memory or multi-tasking.
Sleep does not refresh or improve fatigue. Fatigue may be present even after sleeping for 10 to 12 hours.
Problems with Automatic Body Functioning (Autonomic Nervous System)
The autonomic nervous system regulates key functions in our bodies that occur “automatically,” without us thinking about them. This includes, for example, keeping our heart beating, our blood pressure regulated, our stomach and intestines functioning properly and our lungs working. When this system is affected by fibromyalgia, a variety of symptoms can occur as a result, such as light-headedness, dizziness, heart palpitations, shortness of breath and sweating, diarrhea, constipation, nausea, gas and bloating. A person may lose or gain weight.
Hormonal and Endocrine Symptoms
Some people with fibromyalgia have trouble maintaining their body temperature and feel cold all the time or feel hot.
A Physical Illness
Fibromyalgia is a physical illness. Research shows that the brains of people with fibromyalgia handle pain differently from those of “normal people” and that much more of their brains are involved with the pain signal. A family history of fibromyalgia may also increase a person’s risk of developing the condition.
In some people, the pain can be severe enough to interfere with daily tasks. The severe pain, and problems with mental processing, may result in the individual being unable to sustain employment. Being in constant pain and suffering from fatigue may also strain relationships with family and friends.
The diagnosis of fibromyalgia is based upon the patient history and a physical exam. Although there are no specific laboratory measures for fibromyalgia, blood tests are performed to rule out other conditions with similar symptoms. According to the American College of Rheumatology (ACR) in 1990, people may be diagnosed with fibromyalgia if they have the following:
Widespread musculoskeletal pain in all four quadrants of the body (on both sides of the body, above and below the waist) that has lasted more than three months.
Excess tenderness in at least 11 out of 18 specific sites (“tender points”).
Although there is no cure for fibromyalgia, there are things you can do to optimize your quality of life – to improve your energy level and brain functioning, feel more rested, reduce your pain and minimize your other symptoms.
Pace yourself. Rest before and after activities. Alternate between activities that use energy, such as physical exercise and mental concentration, and those that help conserve energy, such as sleep, meditation and relaxation exercises. Listening to your body, moderating your activity level, eating a well-balanced, nutritious diet, taking pain medication during a flare-up, and getting the emotional support you need can all help you to self-manage your symptoms and improve your sense of well-being.
Many people think of self-management as planting SEEDS of health, from which their health slowly grows like a garden. SEEDS stands for Sleep, Exercise (and Pacing), Environment, Diet (and Drugs) and Support.
If you are suffering from fibromyalgia, getting enough sleep is crucial. Better sleep leads to improved physical and mental energy. Here are some useful tips:
- Pace your daytime activities to conserve your energy throughout the day and prevent “crashes.”
- Do not wait until you are exhausted before going to bed.
- Go to bed at the same time every night, and plan for eight to 10 hours or more of sleep each night.
- Avoid being very hungry or very full at bedtime.
- Avoid or minimize caffeine, alcohol and nicotine, as they can impair sleep.
- Do “quiet” or relaxing activities for one hour before bedtime, such as taking a warm bath with ½ cup of Epsom salts or ½ cup baking soda.
- Make the bedroom a “worry-free zone.” Use your bed for sleeping and sex only; not eating or watching TV.
- Warm your bed with a hot water bottle before getting in. Keep the room dark and quiet while sleeping – use earplugs and an eye mask if necessary.
- Protect your neck while you’re sleeping by using a cervical pillow or by repositioning a regular pillow to maintain a space between your shoulder and neck.
- Sleep Disorders
Restless Leg Syndrome
Approximately one third of patients with fibromyalgia experience restless leg syndrome, which involves numbness and tingling in the lower limbs and restless, twitching legs. The condition makes it difficult to get enough sleep. Restless leg syndrome is exacerbated by long periods of inactivity and relieved by walking or stretching. If your sleep is disrupted by this condition, ask your doctor about medications and magnesium bisglycinate/citrate, which may help.
Some patients with fibromyalgia also have obstructive sleep apnea. Symptoms include loud snoring and periodic pauses in breathing, for at least 10 seconds, after which breathing is resumed with a snort. If you suspect that you have sleep apnea, ask your family doctor to make an appointment at a local sleep clinic. Sleep apnea can be treated with continuous positive airway pressure (CPAP) therapy, which uses a machine to keep the airway open and allow for continuous breathing through the nose. If you are overweight, then losing weight may also be helpful as obesity can contribute to sleep apnea. Unfortunately, correcting the sleep apnea does not eliminate the fatigue from fibromyalgia.
Exercise is one of the best things you can do for fibromyalgia. It can help you sleep better, maintain your muscle tone, alleviate your pain, reduce your stress and increase your energy level, but it involves pacing yourself. Pacing yourself helps to reduce stress and the severity of your symptoms. Pacing your activities involves living “one day at a time,” setting modest goals, being flexible and working within your capacity.
For some people who have fibromyalgia, activities that would not normally cause stress, such as a short walk or a long phone call, can act as stressors that cause fatigue. This, in turn, can provoke feelings of discouragement, frustration, anger and anxiety. Meanwhile, it may seem as if the things that need to get done are “piling up.” Added to this, you may have the burden of financial, marital or work-related problems, which can result from your inability to perform daily tasks or partake fully in a relationship. A vicious cycle can result, with increased frustration, stress and fatigue. A good way to break this cycle is to become aware of your particular stressors and the effect that they have on your energy level and weed them out as much as possible.
The best way to do this is to keep a diary, or activity log, of your activities throughout the day, including mental activities, and rate your energy level, (by giving your energy level a score from 1 to 10). You will notice that you have higher and lower levels of energy throughout the day as well as “high-,” “moderate-” and “low-” energy days. You will see patterns emerge, indicating the activities that produce fatigue and those that conserve your energy. This will help you pace yourself. To download an activity log and functional capacity scale, click here.
If you look at your activity log and notice that late morning is usually a time of day when you have more energy, then you may want to schedule your “high-energy” activities for that time of day. This could be a physical activity, such as exercising, doing light housework or gardening; a mental activity, such as reading, studying or paying the bills; or an activity that includes both mental and physical elements, such as planning a meal, making a grocery list and shopping.
By listening to your body and observing how it responds to different activities, you will be able to identify how much time you can spend doing a “high-energy” activity without feeling fatigued. Learn to think of your symptoms as messengers – letting you know it is time to slow down or stop and rest. For example, if you know that grocery shopping usually exhausts you, then break it up over a few days by planning meals one day, creating a shopping list the next, and doing the shopping the following day.
If you wake up very tired and achy on the “shopping” day, if possible, ask a family member or a friend if they can do it for you, or have the groceries delivered. Many grocery stores now offer this service. Keep your freezer stocked with some frozen meals you have bought or made ahead of time, so that if you can’t go grocery shopping, you don’t miss any meals because you ran out of food.
Allow for a period of rest and relaxation before and after the activities that use energy. Think of rest and relaxation as “energy-conserving” activities, rather than just a break or pause between other things that you “need to do.” It’s OK if rest and relaxation are your main activities for the day, if you are very tired, either physically or mentally. Your body is telling you something – listen to it!
Pacing yourself also means doing things that you enjoy. Some activities, such as socializing, may be “high-energy” but enjoyable. To identify these activities, create a list of activities from your diary, looking at what you “must do,” what you “like to do,” and what can be dropped.
Which of the things that “must be done” can be delegated to others? A supportive partner, friend or counsellor may be able to help. By paring down the “must do” activities, you will make more time to rest and do the things that you enjoy.
Most healthy people are re-energized after moderate exercise. People with fibromyalgia feel exhausted after doing too much exercise, either immediately following the activity or the following day. Even a short period of moderate exercise, like a walk around the block, can be exhausting.
In the beginning, you may find that exercise makes your pain worse but after a couple of weeks, you will start to feel the benefits. Once you get into the habit of exercising regularly, for an amount of time and at an intensity level suitable for you, you will likely find that exercise reduces your pain. Some people even find that exercise makes their pain go away completely.
Types of Exercise
A physical activity program should involve aerobic exercise, strengthening exercises and stretching, though this may vary depending on your level of energy.
Walking, swimming, aqua therapy and bicycling are all low-impact activities that are gentle on your joints.
Start slowly. The goal is to try to exercise regularly without “pushing yourself” and causing fatigue the next day. This may mean that you have to reduce the amount of physical activity you do, monitor your symptoms, and increase your activity level slowly as your energy increases. For example, if you are walking quickly for 15 minutes daily and find that you wake up tired and achy every day, try walking more slowly or for a shorter amount of time. Or you can break your walk into three five-minute walks. Use your activity log to monitor these changes and note how they affect your symptoms. If you are bedridden, try exercising in bed with range of motion exercises or walking around your home a bit before you get back into bed. If you are house-bound, try walking for as little as five or 10 minutes each day, walking in and out of the rooms of your home, making a circuit.
As your energy level improves, try to gradually increase your activity by 10 percent at a time. For example, if you are walking for 10 minutes a day comfortably, try walking for 11 minutes a day the next week. Another way to monitor your progress is by using a pedometer (a small device worn on a wrist or the belt), so that you can measure the number of steps that you take. Use your activity log to monitor these changes and note how they affect your symptoms.
Strengthening exercises can help build up your muscles and prevent osteoporosis. A physiotherapist or knowledgeable fitness instructor can show you some exercises. If you are bed-ridden, find one that can visit you at home.
Stretching will help maintain your flexibility. Start with gentle stretching exercises when your muscles are warm, for example, in the morning before getting out of bed, after a shower or after your muscles are warmed up from exercise. Do not stretch cold muscles. Stretching should be gentle and not cause you any pain.
An Exercise Program that’s Right for You
A physiotherapist can help design an exercise program that is appropriate for you, given your energy level. Exercise videos for people with fibromyalgia are also available. Before starting any exercise program, consult your doctor.
Approximately 60 percent of people with fibromyalgia have some environmental sensitivities/intolerances, whereby they experience symptoms when they are exposed to low levels of everyday substances in the environment. If you have environmental sensitivities/intolerances, the most important thing to do is avoid the substances that trigger these symptoms.
Here are some tips for making your home more environmentally safe. (If you suffer from fatigue, you may need help to make these changes. Try breaking each task into 15-minute intervals.)
- Decrease the number of “dust collectors” in your home by removing knick-knacks, decorative pillows and stuffed animals.
- Reduce clutter, particularly paper and books, which collects dust. Keep papers in a desk and books in a glass-covered case.
- Make your own cleaning products, using baking soda, vinegar and pure soap; or buy cleaning products labelled “non-toxic,” “eco” or “safe.”
- Use unscented personal care products, such as deodorants, lotions and shampoos. Avoid perfume and cologne.
- Reduce the humidity in your house to 30 to 50 percent, to prevent mould growth.
- Get rid of any mouldy items and indoor plants which support mould growth.
- Do not store items in cardboard boxes – use moisture-proof storage containers.
- Avoid pesticides and herbicides, both indoors and outdoors.
- If possible, choose hardwood or ceramic flooring instead of carpets. If you have carpets, use a central vacuum or vacuum with a HEPA filter.
- Ventilate well, with open windows on nice days
- Watch the Air Quality Health Index to avoid exercise outdoors when the index is high.
There is no specific “diet” that is recommended for the management of fibromyalgia. The key is to follow a healthy diet. Here are some guidelines:
- Avoid or minimize caffeine and alcohol.
- Make foods that can be easily prepared and frozen in individual servings.
- Eat smaller meals at regular times, ideally every three to four hours.
- Each meal should contain protein and at least three of the four food groups from Canada’s Food Guide: meats and other protein-containing foods, fruits and vegetables, whole grain products (starches), milk and milk products.
- Add essential fatty acids to your diet. These are important as the omega-3 fatty acids help reduce inflammation and pain in the body, and in high doses, can help control mood and depression. Foods rich in these nutrients include fish, such as salmon, mackerel, herring, sardines and halibut; flaxseeds, pumpkin seeds and canola oil.
- Eat at least five to 10 servings of fruit and vegetables daily. These can be in the form of soup or juice, but whole foods are preferred. Frozen vegetables are great because they are pre-washed and pre-cut.
- The fish you eat should contain low levels of mercury.
- If possible, eat organic foods to minimize your exposure to pesticides.
- Drink six to eight glasses of filtered or spring water daily.
Discuss with your doctor any over-the-counter or natural remedies that you are considering before trying them to be sure that all of your medications are compatible. Some people need prescription medications to help them sleep. There is no one particular medication that helps everyone. Each patient needs an individual assessment. Discuss the benefits and potential side effects of any medication with your doctor, including over-the-counter medications, as any drug can have side effects.
Sleeping pills can also be habit-forming and cause withdrawal symptoms when stopped. If you do decide to take sleeping pills, never mix them with alcohol, as together they can have an additive effect and you may accidentally overdose. If you decide to stop taking the sleep medication, talk to your doctor first.
Many people with fibromyalgia find that exercise, relaxation techniques and deeper sleep reduce their pain. Some also find that massage therapy, physiotherapy, osteopathy, taking baths with Epsom salts, acupuncture or acupressure are helpful. The key is to try a variety of approaches and discover what works best for you.
If relaxation, stretching and physical therapies do not reduce your pain, your doctor may suggest pain or other prescription medication. Discuss the benefits and potential side effects of any medication with your doctor, including over-the-counter medications, as any drug can have side effects.
When it comes to pain relief, there is no “one size fits all” solution. Pain relief is a process of trial and error. You and your doctor will need to work together to reduce your pain and improve your quality of life. It is most helpful if you bring in your activity log to all your regular appointments with your doctor. On your activity log, record the pain level by assigning a number from zero to 10 (10 is the worst pain), the time and amount of medication you are taking and any other symptoms.
The purpose of taking the medication is to improve your quality of life. The medication will help to reduce your pain so that you will be able to do more. As you become more mobile, you may be able to reduce the amount of pain medication you are taking by incorporating relaxation and meditation techniques to help control your pain.
Living with a chronic illness can make you feel angry, frustrated, down and even depressed. You will probably need some time to adjust to living with fibromyalgia. Know that you are not alone: fibromyalgia affects up to six percent of the population. Know too that many people with fibromyalgia lead rich and fulfilling lives.
Be patient. As you learn what goals are realistic for you and as you experiment with different treatment strategies, you will likely start to feel better.
Coping strategies are critical for people with fibromyalgia, as they usually feel as if their lives have been turned upside down. If you have fibromyalgia, you may have lost your ability to work, participate in physical activities and socialize, as you did in the past. Some people with fibromyalgia start to berate themselves for “not doing enough,” which can lead to over-activity and “crashing.” Developing coping skills and getting emotional support are, therefore, a crucial part of healing.
In addition to medications and physical therapies, relaxing regularly and limiting or weeding out your stress can help relieve your pain, as our minds and bodies are intricately connected.
You may want to try different relaxation techniques: deep breathing exercises, meditation, visualization techniques, progressive relaxation and biofeedback. As little as 20 minutes of relaxation a day can have health benefits, including reduced anxiety and an increased sense of well-being. Relaxation is particularly important after a period of activity (physical or mental), when you are feeling stressed, and before bedtime, to prepare for a good night’s sleep.
Choose a place in your house that will be your “relaxation space,” preferably a place where you can be alone, uninterrupted, for at least 10 minutes at a time. You may need to let your family know that this is a time when you want to be left alone.
Lie down on your bed or a comfortable couch and close your eyes. Take a few slow, deep breaths to settle in. Tell yourself that this is your time. When you feel settled, as you breathe in through your nose, say “re” silently to yourself, and then say “lax” as you exhale through your mouth.
An option is to also count to four as you inhale through your nose, pause, and then breathe out through your mouth for a count of four. It doesn’t matter how high you count, as long as you don’t force your breath. Try to do this for 10 minutes twice a day.
This breathing exercise can also be done at any time of day, for a few minutes, when you start to feel stressed. For example, if you are working and start to feel anxious, feel a headache coming on or a stiff neck, take a couple of minutes to do this relaxation exercise before you continue with your work. Do this as soon as you recognize your particular symptoms of stress. The earlier that you can break the stress-fatigue cycle with a relaxation technique, the better.
You can also do this simple exercise after you get into bed to help you fall asleep. It will help reduce worries that are interfering with your sleep. If you wake during the night with your mind racing, this exercise is also useful. As soon as you notice your thoughts returning to the “problem,” go back to your “re-lax” phrase and try to simply focus on your breath and the present moment, to still your mind and feel calmer.
Some people with fibromyalgia feel depressed as a result of their illness and the many lifestyle changes and restrictions that they may have had to cope with, such as being unable to participate in the activities they once enjoyed, as well as possible job, financial or relationship problems. If you have fibromyalgia and think that you may be depressed, talk to your doctor. He or she may be able to refer you to a counsellor or support group.
Many people with fibromyalgia experience anxiety. Relaxation techniques, pacing yourself and developing an attitude that can accommodate your situation will help. However, some individuals require medication to alleviate their anxiety or panic attacks.
Stress management tools may also help you deal with the depression and anxiety that can accompany chronic illness.
Isolation can be one of the most difficult aspects of having fibromyalgia. Your friends, family and colleagues may not understand your pain and other symptoms, or what you are going through. Your sense of isolation may be compounded by health professionals who do not see your illness as “real” and may not be supportive.
The first step in helping others to understand your condition is to educate yourself, and then educate them. Explain how you’re feeling and be clear about what your limits are – what you can and cannot do at this time.
Many women find that joining a support group, to connect with others who have fibromyalgia, is helpful. Belonging to a community of people who understand and care can provide you with emotional support as well as useful information. You may want to include family and friends in the process and encourage them to air their feelings in a support group setting or with a counsellor. Network with others who support you, through brief telephone calls or emails.
Anyone experiencing a chronic illness needs time to grieve the loss of their former life.
Some women find that engaging in activities that cultivate their spiritual growth, such as prayer, yoga, religious services or meditation, is helpful.
Learning More About Your Condition: The more you learn about your condition and the more active you are in your own treatment, the more of a sense of control you will have.
Organizations such as the Arthritis Society and the National ME/FM Action Network offer a wealth of information and information about local support groups where you can learn more and share with others who are living with fibromyalgia.