Fibromyalgia

What is Fibromyalgia

Fibromyalgia (FM) was recognized as a true syndrome by the American College of Rheumatology in 1990. FM is thought to exist in 2% to 3% of the population. It occurs in both men and women and women are affected 6 to 9 times more often than men. In women, FM occurs most commonly between the ages of 30 to 60. FM can also affect teenagers, children, and the elderly. FM has no known cause. Current research into how the nervous system deals with pain has shown that various abnormalities are present in people who have FM.

Other studies have indicated that genetic (inherited) factors may predispose some individuals to develop FM. These genetic factors can affect how the body responds to pain, physical or emotional trauma, and illnesses (such as viral infections).

This work is at the research stage and not yet available for doctors to help diagnose patients with FM in their offices. But this knowledge can be helpful in the management of FM.

Symptoms of FM

Pain

The main symptom of FM is body pain that is felt all parts of the body and has been present for at least 3 months. The pain may be burning, searing, tingling, shooting, stabbing, deep aching, sharp, and/or feeling bruised all over. Patients may be hypersensitive to painful stimuli (hyperalgesia), or experience pain from a stimulus e.g. light touch, that is not usually painful (allodynia). Over time, the pain becomes more constant and affects more areas of the body. The pain can vary in its location and how severe it is, and can be made worse in cold or humid weather. Stress can also cause the pain to become worse.

Below is a video to explain more about pain in this disease.

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Other symptoms of FM may include pain-related symptoms such as:

Fatigue
Poor (non-restorative) sleep
Cognitive dysfunction (this includes problems with memory, thinking clearly, and ability to put thoughts into words)
Mood disorder (this includes depression and/or anxiety, and is present in up to 75% of people with FMS)
Other conditions such as:

- Irritable bowel syndrome
- Migraine headaches
- Severe menstrual pain
- Lower urinary tract symptoms such as painful urination
- Pain in the tissues, joints and muscles of the face (myofascial facial pain or temporomandibular joint TMJ or jaw pain)

Diagnosis

As with many other health problems, early diagnosis of FM will help patients avoid the fear and anxiety of not knowing what is wrong with them. Early diagnosis also allows for better management of symptoms. For example, early and effective treatment for pain will decrease the risk of other pain and non-pain related symptoms (such as depression).

A diagnosis of FM is based on symptoms including body pain on both sides of the body, above and below the waist that has been present for at least 3 months.

The other main symptoms are deep, profound fatigue and sleep disturbances. All patients with symptoms that suggest a diagnosis of FM should undergo a physical examination. Results of the examination should be within normal limits except for pain on the tender points when present. However, according to the most recent recommendations of the American College of Rheumatology (2010), a “positive tender point examination” is not absolutely necessary to make the clinical diagnosis of FM. The reason for this is that often men are not found to have positive tender points when examined so it is no longer necessary to have positive tender point examination to be diagnosed with FM. It is necessary to have a history of chronic widespread body pain.

As there is no specific laboratory test to confirm FM, blood tests should be limited to those that can rule out other conditions that may have symptoms similar to FM. These include endocrine (gland) diseases such as hypothyroidism, rheumatic conditions such as early inflammatory arthritis, or neurological disease such as myopathy or multiple sclerosis.

Any further testing should be based on the individual patient’s symptoms. For example, a patient with significant sleep disturbance should be referred to a sleep specialist for evaluation.

Living with a Complex Chronic Disease

At this time, there are no known cures for diseases like Fibromyagia, Myalgic Encephalomyelitis, Alternatively Diagnosed Chronic Lyme Syndrome or Central Sensitivity Syndromes. Along with medical treatment and symptom managment, there are several steps you can take to try and improve your quality of life. It is important to note that the impact of these steps are individual and they may not work for all people living with these diseases. We recommend you work with your health care team on the implementation of any of these techniques.

These steps are oftten referred to as self-management techniques. You can do this by:

Identifying specific goals such as achieving a an improved level of physical activity, decreasing pain levels, and overall having improved functioning
Becoming more informed about your disease in order to gain control and manage your experience of this condition. For example, using the knowledge that pacing activities will help improve functionality over the long run.
Finding sources for emotional and social support.

Develop an activity plan

If you have had your chronic illness for some time you may have noticed that some activities and situations can make your symptoms worse. These situations are known as triggers and might include noisy or crowded gatherings, prolonged physical activity, emotional upsets, or pressure of work. If you name your triggers and use an activity diary, or daily log to track your activities and fatigue levels during the day, you will be able to plan your activities when they will be easier for you to manage, and at a time that allows you to have a rest period if needed. This is called “pacing”. For example, if mornings appear to be a higher energy time for you, plan to do the more demanding activities such as exercise, studying, or shopping during that time, taking care not to overdo it. Set modest goals for your daily activities and pay attention to the way your body responds to various levels of activity. Feeling fatigued means it is time to rest.

There are many different activity logs available on the internet. It is important that you find one that works for you. This might mean trying a few before you find one that is ideal.

Start an exercise program

The benefits of exercise with respect to well-being, physical function, and pain control are well-known. People with Chronic Diseases who choose to participate in an exercise program should first discuss their options with the care provider and ensure that their activity is individualized to their specific needs.

Avoid crashing by pushing yourself to do too much. Don’t try to “keep up with the class”. The key to success is to start with a very gentle program, pay attention to messages from your body and do some gentle form of exercise every day or every other day if possible.

Exercise programs may include:

Range of motion exercises while you are bedridden
Strengthening exercises
Aerobic exercises
Exercise in water (e.g. aqua-fit)
Pilates
Tai Chi
Yoga that is restorative in nature and teaches relaxation

Learn relaxation techniques

The aim of relaxation is to block out feelings of stress, anxiety and/or pain. These techniques also help people who have trouble with falling asleep.

There are many relaxation techniques, including:

Deep breathing exercises
Meditation
Visualization
Progressive relaxation
Biofeedback

Here is an example of simple relaxation technique that you can do anytime and anywhere:

Set aside 10 to 20 minutes at least once a day. Make this your private time to be quiet and alone (no interruptions!)
Make yourself as comfortable as possible in a quiet, darkened room – lying down is perfectly fine if you are too fatigued to sit up.
Begin by breathing in through your nose. Say “re” silently to yourself and then say "lax" as you exhale through your mouth.
Count to four as you inhale through your nose, pause, and then breathe out for a count of four through your mouth. Take nice easy breaths, and don’t force the air in or out as you breathe.
This technique can help you at any time of day when you feel very tense or anxious. It is also a very good approach to getting to sleep at bedtime.

Improve your sleep

Many people with Chronic Diseases are not able to enjoy good, energy-restoring sleep. Poor sleep can make other symptoms such as pain and fatigue much worse. Sleep disturbance can include:

Problems with falling asleep
Waking up frequently
Restless Leg Syndrome (numbness and tingling in the lower limbs, and muscle twitching
Sleep apnea (loud snoring, with pauses in breathing, followed by a loud snort or gasp when the person starts breathing again)

Here are some tips to try and improve your sleep:

Regular daily exercise within your comfort limits
Raise your activity level during the day, to the level you can tolerate
At bedtime, include a quiet, relaxing activity such as a warm bath
Play a recording of relaxing sounds
Have a regular bed time and plan for 8 to 10 hours of sleep per night
Make sure your bed and pillows are comfortable, with good support for your neck, such as a cervical pillow.
Medications: Most sleeping pills will help you go to sleep, but do not help you to have a deep, energy-restoring sleep. Consult your doctor if you think sleeping pills might help you, and be sure to learn about side effects and safe use of these medications.
You may benefit from a referral to a sleep specialist or sleep clinic can help with a diagnosis and ways to improve the quality of your sleep
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Diet and Nutition

Good nutrition is a known factor in good health. For people with a chronic diseases, nutrition plays an even more important role in healing and becoming as healthy as possible.

Here is a tip sheet put together by the CCDP Dietitian.

Manage your pain

Each person experiences pain in a unique way, related to his or her history, culture, and attitudes toward health and illness. Also, the experience of a person with long-term, chronic pain is different than that of a person who has post- surgical pain or pain from an acute injury. Any approach to pain relief must take these differences, and the needs of the individual, into account. Many people have found the following strategies helpful in controlling their pain:

Relaxation exercises and gentle stretching
Massage therapy, physiotherapy, and/or osteopathic treatment
Warm baths with Epsom Salts
Acupuncture and acupressure
Botox injections
Local anaesthetic e.g. Lidocaine injections
Nerve blocks
Trigger Point Injections

Make Your Environment Healthy for You

Environmental sensitivities or intolerances can be common with some chronic diseases. Some people have symptoms when exposed to levels of substances that do not bother other people. These can include toxic substances such as cigarette smoke, petroleum products and pesticides. They can also include perfumes, dust, and moulds. The best way to avoid problems with these substances is to avoid being exposed to them (which can be difficult). You may not be able to control everything in your environment, but there are some steps you can take within your own living space, such as:

Remove all sources of dust and mould (all those “dust-collectors”, houseplants, etc.)
Raise your awareness about harmful cosmetics and discontinue use of toxic personal care products.
Use cleaning products that are labelled “non-toxic”, “eco-friendly” or “safe” or make your own using baking soda and vinegar.
Refer to a list of toxic substances found in cleaning and other products
Avoid the use of pesticides and herbicides
Keep the humidity in your house between 30 and 50 percent to reduce mould growth
Remove carpets if possible. If not, use a HEPA filter vacuum for cleaning

Achieve Emotional Health

Any long-term illness or condition can have a major impact on a person’s emotional health. There are many reasons for this, including:

Having to deal with physical symptoms such as pain on an ongoing basis.
The challenge of finding a diagnosis and effective treatment in a medical system that cannot always respond.
Dealing with losses, including the ability to work and be employed at a regular job, the ability to enjoy strenuous physical activities, and/or the ability to function as a fully active member of a family.
Having a disease that “doesn’t show” and dealing with people who do not understand chronic diseases. This can lead to feeling isolated with your disease.
The knowledge that there is no known cure for chronic diseases.

Many people with chronic diseases have felt helpless and unable to do anything to improve their condition. It has been reported that those who have been able to change the way they think and feel about their illness have begun to feel more in control. They have developed coping skills and found good sources for emotional support.

Many people with chronic diseases find that joining a support group helps them connect with others who understand. They are able to gain emotional support as well as useful information. You may want to include family and friends in support groups that can help them understand and cope with the effects can have on families and friendships.

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