DRAFT Fibromyalgia Care and management Guide for nurses for FM-CFS Canada
FM Guidelines
Fibromyalgia (FM)
Guide for Care and Management for Nurses
CONTENTS
Introduction
Definition of fibromyalgia
Common signs and symptoms
Co-existing conditions
Fibromyalgia and depression
Etiology
Patient evaluation and diagnosis
History
Assessment of mental state
Laboratory investigations
Canadian Clinical Criteria
Prognosis
The nurse and FM
The four Ss
Activity management
Symptom control
Alternative treatments
General principles
Assisting with self-management
Resources
References
INTRODUCTION
Fibromyalgia (FM) is a medical disorder characterized by chronic pain, and can cause
significant symptoms of ill health and even disability in some people.
Fibromyalgia was seen to be a collection of symptoms and not an actual clinical disorder
for many years. In fact, many people with the symptoms of fibromyalgia were told it was
“in your head.” In 1991, the World Health Organization recognized fibromyalgia
officially and included it in its International Classification of Diseases.
Although there is no laboratory test that provides a diagnosis of fibromyalgia, it is
possible to diagnose based on an assessment of symptoms. Further, some people with FM
can now lead more productive lives by following a routine that includes exercise and
stress management techniques. Fibromyalgia has also been associated with a number of
coexisting conditions such as chronic fatigue syndrome, multiple chemical sensitivity,
depression and anxiety disorders, and irritable bowel syndrome.
This guidebook will provide nurses with the information they need to assist people with
fibromyalgia through the diagnosis, treatment and management of this disorder.
Resources for nurses and patients will also be provided for further review.
DEFINITION OF FIBROMYALGIA
Fibromyalgia is a chronic disorder characterized by a history of widespread pain, and by
the presence of marked tenderness to palpation at 18 standard, anatomically defined
“tender points”. 1
These distinctive reproducible pain sites confirm the predominant feature of FM:
widespread musculo-skeletal pain. Many people are not even aware of these tender points
until they are examined by a physician.
2
A diagnosis of fibromyalgia can be made when the patient describes a total body ache,
and has tenderness in 11 or more tender points when 4 kg of pressure is applied.
Fibromyalgia is believed to affect approximately two percent of the population in the
United States, and is seen more commonly in women.
There is no known cause of fibromyalgia. It is not a form of arthritis but has been
described as “a soft tissue rheumatism”, which means that it is a disorder that causes pain
and stiffness in joints, muscles and bones.2
Several theories exist about the cause of fibromyalgia, including the following.
Fibromyalgia may be associated with overactive nerve cells in the spinal cord and
brain. Oversensitivity results from changes in chemicals in the brain or spinal
cord which means the person senses pain more easily.
Fibromyalgia may be linked to an imbalance in the brain chemicals that control
mood which results in a diminished tolernce of pain and altered sleep cycles, and
fatigue.
Fibromyalgia may be caused by an imbalance of hormones such as cortisol and
growth hormones, which are controlled by the pituitary gland and hypothalamus.3
COMMON SIGNS AND SYMPTOMS
Many authors refer to fibromyalgia as a syndrome, in other words a collection of
symptoms seen consistently in a large number of patients.
Widespread musculosketal pain is the defining feature of fibromyalgia.
Patients with fibromyalgia may describe their pain as one of, or a combination of:
• Burning
• Searing
• Tingling
• Shooting
• Stabbing
• Deep aching
• Sharp and/or
• Feeling bruised all over.
The pain may vary throughout the day and with the level of activity, or be affected by
stress, weather conditions, or sleep patterns.
One recent study published in Arthritis & Rheumatism journal identified three subgroups
of fibromyalgia, and points to the need for further study. “There appears to be a group of
fibromyalgia patients who exhibit extreme tenderness but lack any associated
3
psychological/cognitive factors, an intermediate group who display moderate tenderness
and have normal mood, and a group in whom mood and cognitive factors may be
significantly influencing the symptom report.”4
CO-EXISTING CONDITIONS
Fibromyalgia may coexist with, or mimic symptoms associated with:
• Chronic fatigue syndrome
• Multiple chemical sensitivity
• Irritable bowel syndrome
• Anxiety disorders
• Somatoform disorders.
Many people with fibromyalgia have fatigue that may be severe. They have problems
sleeping and wake frequently during rest.
FIBROMYALGIA AND DEPRESSION
Changes in mood are another common symptom of fibromyalgia. Some of the symptoms
seen in FM may overlap with those of other disorders such as depression and anxiety.
There is a difference, however: while depressed people commonly express feeling low on
energy or motivation, people with fibromyalgia are in fact highly motivated to do things.
They feel no loss of pleasure from day-to-day activities and their self-esteem is intact.
FM patients exhibit a number of physical symptoms including pain and cognitive
disturbances that are not usually associated with depression. On the other hand, FM
sufferers may report bouts of extreme frustration and/or situational depressions due to the
restrictions this condition has caused for the relationships with family, friends and the
workplace.
Cognitive disturbances such as poor memory recall are thought to be due to the severe
and disabling fatigue experienced by some people with fibromyalgia.
ETIOLOGY
The causes of fibromyalgia are not well understood. The pathophysiological basis for this
disorder is complex due to the involvement of multiple systems, and the fact that there
are many symptoms of varying intensity. Further research is needed in this area.
Most patients enjoyed a healthy active lifestyle prior to the onset of FM, which may be
acute or gradual. In some cases, there is no known prodromal event, and symptoms come
on gradually over time.
While there is no single identifiable cause, there may be a number of triggering factors
such as trauma, surgery, repetitive strain injury, childbirth, viral infection and chemical
exposure. Genetics appears to be a factor as well for some people. Extreme or chronic
stress may be risk factors but have not yet been proven.
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PATIENT EVALUATION AND DIAGNOSIS
A positive diagnosis of FM is an important first step in managing this condition.
The diagnosis is based on recognizing the pattern of the characteristic symptoms of FM,
and ruling out alternative diagnoses.
The path to diagnosis involves: taking the patient’s history; completeing a physical
examination; assessing the patient’s mental state; and, laboratory investigations.
History
In the case of fibromyalgia, the patient’s history often provides much of the information
needed for a diagnosis. Patients should be encouraged to present a full account of their
symptoms together with their perceptions of factors that worse or improve them.
Onset, duration and variability of symptoms should be recorded.
For women, symptoms may worse at certain times in the menstrual cycle and symptoms
may disappear for some women during pregnancy.
The hallmark of FM is that increased physical or mental exertion results in worsening
symptoms, often with delayed impact—symptoms may not be felt until later the same day
or the next day, and may last for more than 24 hours. Recovery from such relapses may
take days, weeks or even months.
Assessment of mental state
Reactive or situational depression can coexist with fibromyalgia. Many people live in a
depressing situation because of the effect this condition has had on their ability to lead
normal family, social and work lives. The attending physician may choose to administer a
mini-mental test or assessment tools related to depression and anxiety.
Laboratory investigations
There is not specific laboratory test for fibromyalgia; in this case, tests are useful for
ruling out the possibility of other conditions that may be similar to FM.
Routine tests should include:
CBC
ESR
Protein electrophoresis
CPK
CRP
TSH
5
Further tests may be ordered based on the individual’s case history and other information
gathered in the physical examination. They may include:
IPTH and 24-hour urine collections for calcium and phosphorus
Serum magnesium
Glucose
Electrocytes
Fe
B12 and folate levels
Creatinine
DHE sulfate
Liver function and
Routine urinalysis.
Cardiac assessment such as ECG and Holter monitor may be considered.
Electromyography and nerve conduction tests may be indicated. (The patient will need
information and support for these invasive and painful tests.)
Special risk factors may also indicate the need for one or more of the following tests:
Rheumatoid factor
Antinuclear antibody
Diurnal cortisol levels
24-hour urine free cortisol, and/or other appropriate thyroid and adrenal testing
total and free testosterone
estradiol
Western blot test for Lyme Disease
Chest x-ray
TB skin test
[INSERT Canadian Clinical Criteria sheet here]
PROGNOSIS
Studies to date have shown that once fibromyalgia is well established, people continue to
have symptoms; some improve, but many continue to experience fatigues, moderate to
severe pain, and sleep disturbances.5
Individual prognosis is highly variable however, and new research shows that FM is not a
progressive disease, and causes no permanent physical damage. Recent findings show
that exercise programs may result in consistent improvements to physical function and in
reduced tender point pain.6
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THE NURSE AND FM
There is no “cure” for fibromyalgia. Management of people with this disorder is based on
the concept of improving functionality and controlling symptoms, especially pain.
While the patient’s physician plays a key role in diagnosing FM and setting goals for
management, the nurse has a role in this therapeutic alliance by providing
encouragement, information and support. People with FM may feel disheartened as well
as confused and uncertain about treatment for this disorder, and what their unique
response to management might be.
Recent research indicates that fibromyalgia responds to a multi-disciplinary approach.
Combinations of use of pain medication, exercise programs, counseling, physiotherapy
and other treatment modalities can result in improvement in symptoms, particularly pain.7
The nurse can support fibromyalgia patients in their journey toward the right treatment
menu for them.
The four Ss
It is important to establish a healing environment for the person with fibromyalgia by
using the principle of the Four Ss: keep it simple, serene, slow and supportive.
Activity management
Patients with FM should be encouraged to “budget” their physical and mental activity so
as not to bankrupt energy stores and overdo. In specific patients should aim to do the
following.
•
•
•
•
•
Gently and gradually increase their level of activity (e.g., gentle walking,
hydrotherapy, or stretching exercises
Patients should learn to set limits, and assign priority to activities. They should be
aware especially of not overdoing activity on a “good” day, to avoid triggering a
relapse of symptoms. If more than 30-60 minutes are required for recovery after
an activity, the he/she is overdoing it.
Unless severely affected, it is important to avoid prolonged bedrest.
A pedometer may help monitoring progress, or simply checking by the clock or
watch that an activity is being increased only by minutes each week.
It may be useful to have the patient consult with a physiotherapist or occupational
therapist for assessment and detailed advice on appropriate exercise.
Symptom control
For sleep disturbances
Basic “sleep hygiene” measures are very important, such as avoiding daytime
naps, or rests longer than 20 minutes, keeping the bedroom cool and dark and free
of distractions such as TV, etc. A shower or bath before bed may help with
relaxation.
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The patient’s physician may consider medication to help with sleep; alternatives
such as St. John’s Wort may be considered.
Muscle aches and headaches
Low doses of tricyclic antidepressants may help and/or anti-inflammatories.
Patients should check with their doctor or pharmacist about the best choice of
medication. For severe pain, a referral to a pain management clinic may help.
Muscle twitching or cramps
The physician may consider prescribing muscle relaxants. (What about calcium--Jane)
Gastrointestinal symptoms
Some patients may experience these symptoms such as stomach upset, diarrhea,
etc. The possibility of food allergies, sensitivities or intolerances such as allergy
to wheat, lactose intolerance or celiac disease should be ruled out.
For upper GI symptoms such as nausea and bloating, people may wish to consider
determining which foods are the offenders and avoid them, or eat small meals
frequently.
ALTERNATIVE TREATMENTS
Several complementary treatments may be considered for fibromyalgia g: physical
therapy, massage therapy, prolotherapy (injection of sore muscles and tender points with
sterile dextrose solution), and injection of tender points with anesthetic. Counselling may
also benefit patients experiencing depression or other psychological effects.
Certain relaxation techniques may also be effective in relieving pain:
SAM-e
Biofeedback
Acupuncture
Meditation
Prayer
Transcutaneous electrical nerve stimulation (TENS)
As well, many people have tried:
Dietary supplements and vitamins
Herbal products
Reflexology
Chiropractic.
The patient should be encouraged to discuss the safety and advisability of any choice of
complementary or alternative treatments with a physician or pharmacist; the nurse may
be able to provide information on these areas as well.
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GENERAL PRINCIPLES
The Four Ss: simple, serene, slow and supportive
Avoid social withdrawal: patients should be encouraged to stay in contact with family
and friends, even if only by email or telephone
Avoid triggers such as over-exertion that may cause relapses. Exposure to chemicals plus
stress such as travel, particularly air travel, may also need to be avoided.
Medication: people with FM may have low tolerance of medication. Start any new
medicine slowly.
Eat healthy, feel good: people with FM need to ensure their diet is well balanced, i.e.,
enough protein and five to 10 servings of fruit and vegetables each day. Avoid alcohol,
caffeine and other foods that may worsen symptoms. And drink water!
SELF-MANAGEMENT
The nurse can be very important to people with FM in terms of providing support and
monitoring of progress in management of this disorder.
It is important to assist the person with fibromyalgia to set realistic goals, and to take
actions that will help them record improvements (or setbacks) that will help everyone on
the therapeutic team manage their condition.
Some helpful ideas the nurse may suggest to the person with FM follow.
Keep a personal diary of things he or she has done, such as walking, and how long it
takes to do things, how it feels, etc.
Structure tasks to keep them manageable, and learn how to set priorities.
Keep a diary of treatments tried, and what the effects were.
A list of resources and references follows that nurses may use for further reading, or to
recommend to patients for more information.
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RESOURCES
World Wide Web
www.fm-cfs.ca
www.co-cure.org
www.fibromyalgia.ncf.ca
www.arthritis.org
Books
Spencer, Bev. Fibromyalgia: Fighting Back. Available online in PDF from FM-CFS
Canada.
Ediger, Beth. Coping with Fibromyalgia.
Ediger, Beth. Treating Fibromyalgia.
Teitelbaum. From Fatigued to Fantastic.
McIlwain, Harris. The Fibromyalgia Handbook.
1
FM/CFS Canada. (2005). FM Guidelines. Canadian Diagnosis and Management Guidelines for General
Practitioners, p.5.
2
Ibid.
3
WebMd. Fibromyalgia. Retrieved from
http://my.webmd.com/hw/fibromyalgia_cfids/hw196387.asp?src=pemedscape
4
Giesecke,T. et al. (2003). Arthritis Rheum, 48, 2916-2922.
5
Kennedy, _. & Felson, _. (…..) [find reference]
6
Gowans, S. & deHueck, A. (2004). Effectiveness of exercise in the management of fibromyalgia. Curr
Opin Rheumatolo 16 (2) 138-142.
7
Scherer,P. Thinking outside the medical model. Retrieved from
www.medscape.com/viewarticle/474053?src=search
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