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What is fibromyalgia?
Fibromyalgia (say: fi-bro-my-al-gee-uh) is a syndrome (a set of symptoms) that causes pain on both sides of your body, as well as the upper half and lower half of your body. Areas called “tender points” may be especially painful when pressure is put on them. Common tender points are the back of the head, the elbows, the shoulders, the knees, the hip joints and around the neck.
According to Statistics Canada, 1.7% of Canadians report being diagnosed with fibromyalgia. Initial symptoms appear between the ages of 20 and 50, but can also affect teenagers and children. Women are more likely than men to have fibromyalgia. This syndrome might be hereditary (which means it runs in families). You may have family members with similar symptoms.
Fibromyalgia is real.
Fibromyalgia is a condition that is often misunderstood. But your symptoms aren’t “all in your head.” Scientific research has shown that fibromyalgia is a real syndrome that causes real pain. Don’t let anyone discourage you from getting a diagnosis and treatment for your symptoms.
What are the symptoms of fibromyalgia?
Symptoms of fibromyalgia can include the following:
- Increased sensitivity to pain
- A deep ache or a burning pain that gets worse because of activity, stress, weather changes or other factors
- Muscle stiffness or spasms
- Pain that moves around your body
- Feelings of numbness or tingling in your hands, arms or legs
- Feeling very tired or fatigued (out of energy), even when you get enough sleep
- Trouble sleeping
People who have fibromyalgia often also have one or more of the following:
- Irritable bowel syndrome
- Restless legs syndrome
- Increased sensitivity to odors, bright lights, loud noises or medicines
- Headaches, migraines or jaw pain
- Dry eyes or mouth
- Dizziness and problems with balance
- Problems with memory or concentration (sometimes called the “fibro fog”)
- For women, painful menstrual periods
Why do I feel depressed?
Depression or anxiety may occur as a result of your constant pain and fatigue, or the frustration you feel with the condition. It is also possible that the same chemical imbalances in the brain that cause mood changes also contribute to fibromyalgia.
Does fibromyalgia cause permanent damage?
No. Although fibromyalgia causes symptoms that can be very painful and uncomfortable, your muscles and organs are not being damaged. This condition is not life-threatening, but it is chronic (ongoing). Although there is no cure, there are many things you can do to feel better.
DIAGNOSIS & TESTS
How will my healthcare provider diagnose fibromyalgia?
At your appointment, your healthcare provider will ask about your personal and family medical histories. Be sure to tell your healthcare provider whether any members of your immediate family have ever had similar symptoms or have been diagnosed with fibromyalgia. Your healthcare provider will also need to know what medicines, vitamins or supplements you are taking.
Your healthcare provider will ask about your symptoms and how long you have had them. It’s very important to give your healthcare provider a clear, detailed description of your symptoms. Before going to your appointment, write down a complete list of the problems you’ve been having. Be sure to describe exactly what type of pain you have (for example, whether the pain is dull or sharp) and where you have been feeling pain. Tell your healthcare provider whether your pain comes and goes, and what makes you feel better or worse.
If you have had any trouble sleeping or fatigue, tell your healthcare provider how long you have had this problem. Your healthcare provider may ask whether you have been feeling anxious or depressed since your symptoms began.
Your healthcare provider will also perform a physical exam. This may include applying pressure to the tender points on your body.
Your healthcare provider may run tests (for example, blood tests) to be sure you don’t have one of the other conditions that have symptoms similar to fibromyalgia. Your healthcare provider will also want to be sure that there isn’t anything else causing your pain.
Is it hard to diagnose fibromyalgia?
Unfortunately, it can take years for some people who have fibromyalgia to get a correct diagnosis. This can happen for many reasons. The main symptoms of fibromyalgia are pain and fatigue. These are also common symptoms of many other health problems, such as chronic fatigue syndrome, hypothyroidism and arthritis. Currently, there is no laboratory test or X-ray that can diagnose fibromyalgia.
It may take some time for your healthcare provider to understand all of your symptoms and rule out other health problems so they can make an accurate diagnosis. As part of this process, your healthcare provider may consult with a rheumatologist (a healthcare provider who specializes in pain in the joints and soft tissue).
I’ve been diagnosed with fibromyalgia. What should I do now?
Fibromyalgia is a chronic condition. This means that it affects you over a long period of time – possibly your entire life. There will be times when your fibromyalgia may “flare up” and your symptoms will be worse. Other times you will feel much better. The good news is that your symptoms can be managed.
It’s important to have a health care team that understands fibromyalgia and has experience treating it. Your team will probably include your family healthcare provider, a rheumatologist (a healthcare provider who specializes in pain in the joints and soft tissue) and a physical therapist. Other health care professionals may help you manage other symptoms, such as mood or sleep problems. However, the most important member of your health care team is you. The more active you are in your care, the better you will feel.
An Important Note about Your Care
You will need to follow your healthcare provider’s recommendations carefully. Making changes in your lifestyle and daily habits can help you feel better. Remember, your treatment won’t be as effective if you don’t take an active role in your health care.
How do I take an active role in my health care?
There isn’t currently a cure for fibromyalgia. Your care will focus on helping you minimize the impact of fibromyalgia on your life and treating your symptoms. Your healthcare provider can prescribe medicine to help with your pain, but there are other things you will need to do to ease your symptoms. This is called “self-management.”
Self-management means that you take responsibility for doing what it takes to manage fibromyalgia effectively. It’s important for you to be responsible for your health. The treatment recommendations your healthcare provider makes won’t do any good unless you follow them. They can’t make decisions for you or make you change your behavior. Only you can do these things.
In self-management, you and your health care team are partners in care. Your health care team can provide valuable advice and information to help you deal with fibromyalgia. However, there isn’t one treatment plan that works best for every person who has fibromyalgia. You’ll have to work with your care team to create a plan that’s right for you. After all, nobody knows more than you do about your feelings, your actions and how your fibromyalgia symptoms affect you.
How can self-management help?
The following are some ways you can take an active role in managing your fibromyalgia symptoms:
Maintain a healthy outlook
Work with your health care team to choose realistic, short-term goals to manage your symptoms. Focus on what you can do today to feel better. Contact your healthcare provider if you have been feeling depressed or anxious. These feelings are common among people who live with the pain and frustration of fibromyalgia. Your healthcare provider may suggest cognitive behavioral therapy, which helps you replace negative thoughts with positive thoughts.
Don’t be afraid to ask for the help you need to deal with fibromyalgia. Support can come from your health care team, as well as friends and family members. For example, you could ask a friend to be your exercise buddy. There are also support groups specifically for people who have fibromyalgia.
Take medicines exactly as prescribed
Your healthcare provider may prescribe medicines to reduce your pain, improve your mood and help you sleep better. Ask your healthcare provider or pharmacist about each medicine and why you’re taking it. Be sure to take all medicines according to your healthcare provider’s instructions.
One of the best things you can do if you have fibromyalgia is engage in moderate exercise on a regular basis. Exercise can reduce your pain, give you more energy, reduce stress and help you sleep better. If you’re not used to exercising, be sure to contact your healthcare provider before you start. If you have a physical therapist on your health care team, they can help you develop an exercise routine that’s right for you. It’s usually best to start with low-impact aerobic exercise (for example, walking or water aerobics) for a short period of time a few days a week. As your pain decreases and your energy increases, you can gradually increase the intensity and frequency of your exercise.
Recognize stress and take steps to reduce it
Because stress makes the symptoms of fibromyalgia worse, it’s important to recognize when you’re feeling stressed. Signs of stress may include a feeling of tension in your shoulders or neck, an upset stomach or a headache. Unfortunately, there isn’t a way to completely get rid of stress in your life. However, you can focus on changing the way you react to stress. For example, you might set aside time each day to practice deep-breathing techniques or meditation.
Establish healthy sleep habits
Lack of sleep can make your fibromyalgia symptoms worse. And increased pain makes it hard to get restful sleep. To avoid getting caught in this cycle, try to have healthy sleeping habits. Avoid caffeine and alcohol before bedtime, go to bed and wake up at the same time each day (including weekends), and limit naps during the day.
Get into a routine
Many people who have fibromyalgia do better when their schedule follows a routine pattern. This usually means that each day they have meals at the same times, go to bed and get up at the same times, and exercise at the same time. Try to keep your weekend and holiday schedules as similar to your weekday schedule as possible.
Make healthy lifestyle choices
By making healthy choices, you’ll have more energy, you’ll feel better and you’ll lower your risk for other health problems. Eat a healthy, balanced diet. Limit the amount of alcohol you drink. If you use tobacco products, stop. Lose weight if you are overweight.
What medicines might my healthcare provider recommend to help my symptoms?
Several medicines can help reduce the symptoms of fibromyalgia. Many of these medicines are taken before bedtime and help reduce pain and improve sleep.
Your healthcare provider may recommend treating your symptoms with acetaminophen (one brand: Tylenol) first. They may also recommend an anti-depressant, such as duloxetine. Anti-seizure medicines, such as pregabalin, may also be effective in managing your pain. Nonsteroidal anti-inflammatory medicines (which include ibuprofen, aspirin and naproxen) are not usually effective in treating fibromyalgia when taken alone.
QUESTIONS TO ASK YOUR HEALTHCARE PROVIDER
- How do you know that fibromyalgia is causing my symptoms?
- What could have caused my fibromyalgia?
- Will I need to take medicines? Will they interact with other medicines I take?
- Will alternative therapies (massage, acupuncture, yoga, etc.) help relieve my symptoms?
- What should I do if my symptoms don’t respond to treatment or get worse?
- How do I talk to people about my condition? How do I explain that my pain is real?
- Are there any local support groups for people who have fibromyalgia?
FOR MORE INFORMATION
Canadian Women’s Health Network
See a list of resources used in the development of this information: