Learning To Manage Fibromyalgia Syndrome
Darlene A. Clarke, R.N., M.S.N.
President & Founder
of the Northeast Ohio Branch of the EDNF. Darlene has Hypermobility Type EDS and
Â Individuals with EDS are often also diagnosed
with Fibromyalgia syndrome. Fibromyalgia is a common and often disabling
disorder whose cause remains obscure. Fibromyalgia frequently resembles other
disorders such as rheumatoid arthritis and lupus. Individuals commonly complain
of widespread muscle pain and tenderness, as well as fatigue and exhaustion
after minimal exertion. A characteristically high “tender point” is evident. For
individuals diagnosed with Fibromyalgia, learning to effectively cope with this
disorder is essential to one’s emotional and physical health.
morning and as you awake you realize you are exhausted and you haven't even left
the bed yet. The thought crosses your mind that for as tired as you are, you may
as well have never gone to bed. You barely have enough energy to get out of bed
and care for yourself, let alone being able to care for the children, or go to
work or school. As you struggle to get out of bed, you realize that your body
aches all over and you feel as if you are a 100 years old. You are stiff and can
hardly move. What is wrong with you? After seeking one or more medical
evaluations, you finally get the answer. Your physician informs you that you
have Fibromyalgia syndrome. Such a big word that sounds ominous and must mean
you have some dreaded problem. You have never even heard the term
So, what is Fibromyalgia
Fibromyalgia syndrome is a common form of chronic,
generalized muscular pain and fatigue. In some cases, the pain is so intense
that it can be incapacitating.
1 Despite that Fibromyalgia does not
result in serious, long–term target organ damage; it does have a negative impact
on the quality of life similar to that of rheumatoid arthritis.
effectively manage and cope with Fibromyalgia syndrome, it is imperative that
one has a clear understanding of Fibromyalgia, its signs and symptoms,
triggering factors and how it is treated and managed.
“Fibromyalgia” can be broken down into fibro (fibrous tissue), my (muscles), and
algia (pain and tenderness). In Fibromyalgia there is pain in the muscles and
fibrous connective tissues which comprise ligaments and tendons. Therefore,
while Fibromyalgia feels like a joint disease, it affects muscles and their
attachments to bone and joint deformity does not ensue.
can run in families, possibly suggesting an inherited predisposition. To date,
the cause of Fibromyalgia is not known. It may lie dormant until it is triggered
by an injury/trauma, stress, or a sleep disturbance. There are other theories as
to what triggers Fibromyalgia. One theory is that the syndrome is caused by an
infectious agent such as the influenza virus. Other suspected causes include
extreme physical deconditioning of the nervous system brought on by a lack of
exercise, and changes in muscle metabolism that can result in decreased blood
flow to the muscles with fatigue and decreased strength the end
4 More recent research points to two key chemicals of the
Central Nervous System that facilitate the regulation of pain messages
transmitted to our brain. These two chemicals are substance P and serotonin.
Substance P begins the pain–signal process following tissue injury. Serotonin
reduces the intensity of pain signals in the transmission of pain and is very
important in sleep regulation. Low levels of serotonin and elevated levels of
substance P have been found in individuals with Fibromyalgia. These findings
support the theories that individuals with Fibromyalgia have unusually high pain
intensity messages transmitted to their brain as well as deficiencies in the
inhibition of pain.
5 One clear fact remains: more research is needed on
Fibromyalgia. Despite not being able to identify the exact cause of
Fibromyalgia, individuals present with similar signs and
Signs and Symptoms
Probably the most
frustrating aspect of having Fibromyalgia syndrome, as in EDS, is that you “look
healthy.” Compounded by the fact that test results are “normal,” it is difficult
to convince others that something is wrong with you. Every X–ray and blood test
your physician ordered has come back within normal limits. You embark down the
path of self–doubt and frustration – is this pain real, or is it all in my head?
Why is it so difficult to put a label to the signs and symptoms of
Fibromyalgia is frequently misunderstood and confusing
because the symptoms seen in this syndrome are also found in other conditions
such as rheumatoid arthritis and lupus. Women are affected more than men and the
symptoms usually occur first when an individual is between 20 and 40 years old.1
However, it must be noted that Fibromyalgia can sometimes affect children and
the elderly.4 Recent research studies have established guidelines for diagnosing
Fibromyalgia based on the presence of certain signs and symptoms.
The most common complaint from patients
with Fibromyalgia is that they have diffuse “pain all over” – almost like the
flu. Although in rarer cases, the pain is quite severe and disabling. More
often, the symptoms often begin insidiously and may wax and wane in severity. In
almost all cases, individuals complain of some degree of pain continuously. The
pain is most often worse at “tender points” specifically located on the body.
Fibromyalgia type pain generally is worse in the morning and late evening and
often is associated with stiffness. Muscle groups that are used repetitively
result in an increase in the level of pain you
Fatigue and Sleep Disturbances
you ever awaked after sleeping and felt refreshed and rejuvenated? Most likely
your answer would be “no.” Immense fatigue is frequently the debilitating aspect
of Fibromyalgia. The fatigue may be exhibited as an overall tiredness and lack
of energy, or as muscular fatigue and a lack of endurance. In either case, it
can be difficult to perform activities of daily living such as caring for self
or others, performing household chores, going shopping, or to function
effectively at work. Keep in mind that it takes a tremendous amount of energy to
deal with having chronic pain and this too can contribute to an individual’s
Approximately 90% of individuals with Fibromyalgia complain of
moderate to severe fatigue coupled with a lack of energy or the type of
exhaustion that is found with a lack of sleep. In most cases, individuals wake
up feeling tired even after sleeping all night. While their minds may be rested,
their bodies feel as if they never went to sleep. Many are aware that their
sleep has become lighter with frequent awakenings throughout the night.
Scientific studies reveal that individuals with Fibromyalgia have abnormal sleep
patterns and are deficient in Stage 4 sleep – the deepest stage.1,3,5 It is
important to note that a secondary Fibromyalgia syndrome can occur with any
connective tissue disease (EDS included) and may not necessarily be related to
Central Nervous System
As in other chronic illnesses, mood and mental changes
can occur in individuals with Fibromyalgia. Many individuals feel “blue” or
“down,” although only about 25% are clinically depressed. In most cases,
depression and/or anxiety tends to follow the onset of Fibromyalgia symptoms and
may be the result of Fibromyalgia and not the cause of it.3
Fibromyalgia may also experience numbness and tingling in their hands, arms,
face, feet and legs. These symptoms can also be found in other disorders and
usually require numerous tests before the diagnosis of Fibromyalgia is reached
by a physician.
Muscular as well
as migraine headaches are common in Fibromyalgia. Abdominal bloating, pain,
alternating diarrhea and constipation are also commonly seen. They resemble
irritable bowel syndrome or “spastic colon” in nature. Similar bladder spasms
and irritability results in urinary urgency and frequency. The skin and
circulatory system are sensitive to moisture and temperature changes resulting
in temporary changes in skin color.2,3
Currently, no definitive laboratory tests exist to make the diagnosis
of Fibromyalgia. Rather, the diagnosis is made by a physician after obtaining
the individual’s medical history and performing a complete physical
A hallmark of Fibromyalgia syndrome is reduced pain
thresholds at designated tender points, demonstrated upon palpation.2 According
to the American College of Rheumatology, the diagnostic criteria for
Fibromyalgia includes: a). widespread diffuse pain that has been present for at
least three months and b). pain that is present in 11 of the 18 bilateral tender
point sites (see figure 1) when 4 kg of force is applied by digital
palpation.1,2,7 Recall your response the first time your physician palpated
these 18 “tender points.” Did you say “ouch,” flinch, make a facial grimace, and
attempt to withdraw away from your doctor or even jump? These are the usual
responses elicited by an individual with Fibromyalgia. Frequently, patients are
shocked by the level of pain they experience when these areas are palpated. Now
that you know how Fibromyalgia is diagnosed, let’s look at the common triggering
factors of Fibromyalgia.
Common Triggers of
Three common factors seem to trigger a flare in
Fibromyalgia symptoms, physical factors, emotional factors and environmental
factors. Keep in mind that your Fibromyalgia can become aggravated by these
factors alone or any combination of these factors.
Several physical factors can aggravate your
Fibromyalgia. Infections are one type of physical factor that can produce the
most profound exacerbation of Fibromyalgia symptoms. The second type of physical
factors deal with ergonomics. The positions we maintain our bodies in has a
direct correlation to the pain associated in Fibromyalgia. For instance, do you
have a job that requires you use repetitive movements all day? Are you required
to work in one spot with your arms elevated above your work surface? Do you need
to remain in one position (i.e., standing, sitting or driving) for prolonged
amounts time? If you answered “yes” to any of the above questions, you will be
able to relate to the pain that results from maintaining your muscles in a
sustained isometric position for any length of time. Ergonomics also plays an
important role at home. It’s often difficult for someone with Fibromyalgia to
push a vacuum cleaner, wash walls, paint or prepare meals. These tasks require
the use of shoulder muscles to maintain arms in extension at some level in front
of our body. What generally happens is that an ache begins in the neck,
shoulders and upper back. The ache rapidly turns into pain that elevates in
intensity as it slowly radiates up and down the back. You feel as if you can’t
maintain your arms in this position any longer, and you quickly return your arms
to your sides as you wait for the pain to slowly ebb away. Most, if not all of
you, can relate to this all too familiar type of pain.
Stress is something that each of us has to deal with on a daily basis.
Unfortunately, emotional stress is a prominent factor aggravating Fibromyalgia.
We are faced with stressful situations at home, work, school, driving your car
on the highway etc. It isn’t difficult to identify situations that aggravate
your Fibromyalgia symptoms – that’s the easy part of the equation. The trick is
to avoid or attempt to modify any stressful situation.
It is extremely difficult to deal with those situations in which any
stressor is unrelenting. These types of situations can present themselves in the
home with family members or in the workplace with coworkers or supervisors. In
these situations, one must look at not only the circumstance, but how you react
to the stressor. Ultimately, it comes down to dividing these stressful
situations into two categories: those that you have control over and those you
have absolutely no control over. In circumstances that you have no control over,
it is imperative that you learn to alter your response to those particular
situations. Save your energy for those battles that you can emerge
How many times have you been able to predict the approaching weather
without having looked at a weather map? Probably too numerous to count. You feel
like you are a human barometer with the ability to predict weather changes
before they occur. Most likely you have found that when the barometric pressure
drops, it is followed by rain, cold, snow, and fog – all of which aggravate your
Many individuals with Fibromyalgia report that certain types of
artificial lighting, cold drafts or irritating noises often result in a flare of
their muscle pain. When was the last time that you were able to enter a pool
that wasn’t heated? Just a guess, but it was probably many years ago. Most
individuals with Fibromyalgia do not tolerate swimming in cold or cool water. We
are usually found in the heated pools that others say are “too hot to swim in”
or in hot tubs. The goal is to determine what factors aggravate your
Fibromyalgia and either eliminate them if possible or at least modify them. Now
that you know what factors can trigger your Fibromyalgia, let’s look at how it
is treated and managed.
Treatment and Management
Since Fibromyalgia’s definitive cause is not known, current treatments are
focused on relieving painful symptoms, not necessarily curing them.
Additionally, the treatment program prescribed by your physician will be
individualized to address your specific needs.
Numerous treatments have been employed over the years for Fibromyalgia. No
one method has been entirely successful, but several methods will be prescribed
by your physician in an attempt to control your symptoms. A sense of
overwhelming relief comes with the validation of your symptoms and a diagnosis.
Just knowing the name of your condition will not be enough though. Your
physician and healthcare team will educate you and your family about
Fibromyalgia. Specifically, you’ll be informed about your prognosis, possible
causative factors, the aspects of treatment and specific body mechanics
techniques. This education will prove invaluable to you. If you are taught about
what to expect and how to deal with flare–ups, you will be able to control your
Fibromyalgia. The goal of education is to moderate the effects of Fibromyalgia
on your life. Only then will Fibromyalgia not become your entire life.
Medications may be prescribed by your physician to control pain and improve
deep Stage 4 sleep. If pain is prominent, your doctor may prescribe a low dose
of an analgesic or nonsteroidal anti–inflammatory drug, although most
nonsteroidal anti–inflammatory drugs are marginally beneficial and carry the
risk of side–effects that outweigh their benefits. Therefore, you will be most
likely instructed to use over the counter medications such as acetaminophen,
aspirin or ibuprofen to relieve pain and reduce stiffness. If you are currently
on a nonsteroidal anti–inflammatory drug to help manage your EDS, your physician
will likely instruct you to take acetaminophen, not ibuprofen or aspirin, to
control your pain.
To improve Stage 4 sleep, your physician may prescribe low doses of
tricyclic antidepressants (Elavil, Sinequan) or the muscle relaxant
cyclobenzaprine (Flexeril). These drugs are structurally similar and they block
the re–uptake of the neurotransmitters that regulate deep Stage 4 sleep.3,8.
These medications carry the risk of potential side–effects which include:
drowsiness, weight gain, dry mouth and constipation to name a few. Do not be
discouraged if you do not respond to the first medication(s) prescribed. Your
doctor may need to adjust dosages or change drugs to achieve an improvement.
Individuals with Fibromyalgia should practice good sleep hygiene to promote
sleep. Bedtime rituals can relax you in preparation of sleep. These bedtime
rituals can include: taking a warm bath or shower, reading a novel, watching a
relaxing television program or listening to soothing music which can promote
sleep. Attempt to follow a regular sleep schedule and go to bed at the same time
each day. Sleep eight hours nightly if possible. Avoid alcohol, caffeine and
tobacco before retiring – they will disturb your sleep. Also abstain from taking
Exercise is a key element in Fibromyalgia management. Your physician will
recommend that you slowly increase your aerobic fitness with structured, low
impact activities such as swimming, water aerobics, walking, or riding a
stationary bicycle.2,3,7,8 Research has indicated that aerobic exercise improves
sleep, enhances endorphin release and has antidepressant effects.2 It is
important to check with your physician to ensure that the exercise program you
have chosen is not contraindicated in your specific type of EDS. Remember to
always stretch your muscles before engaging in any aerobic activity. Increase
your exercise program gradually to reduce the chance of injury. As you continue
to exercise, you’ll notice that you feel better, have more endurance and
experience a reduction in Fibromyalgia symptoms. It’s worth the possible pain
and fatigue felt initially to achieve these end–results.
Always practice proper body mechanics and apply ergonomic principles at
home, work and at rest. These techniques will prevent injury and reduce
flare–ups of Fibromyalgia symptoms.
Your doctor may prescribe various physical therapy treatments.
Possible treatments include: massage, heat or ice applications,
ultrasound or whirlpool therapy and microvoltage electrical stimulation. These
are all passive physical therapy techniques with varying results from individual
to individual. These treatments are usually prescribed for flare–ups and are
employed for short periods of time.3,8
Taking Control of Fibromyalgia
You can engage in several actions that will help you gain control of your
Fibromyalgia. First and foremost, listen to your body. Identify those triggers
that aggravate your symptoms and then avoid or at least minimize them. Get your
stress level under control by practicing relaxation techniques. Relaxation
techniques are primarily effective for chronic pain and have many benefits.
Relaxation techniques enable you to reduce anxiety, pain and stress, reduce
muscle tension pain and relieve the helplessness and depression associated with
chronic pain. Despite having chronic pain and fatigue, learn to develop a
positive attitude. Remember that if you have a constant negative attitude, your
Fibromyalgia symptoms will exacerbate. Look for the good in every situation –
it’s there, but you may need to look closely.
Eat healthy and avoid fat in your diet. Excess weight is detrimental to
your body and can aggravate your symptoms. Eating properly also maintains your
health and avoids illness. Keep in mind that an illness (i.e., cold, flu,
bacterial infection etc.) can be a triggering factor for your symptoms.
Educate yourself, family and healthcare providers about Fibromyalgia
syndrome. Remember that knowledge is a powerful weapon in coping with any
chronic illness. Knowledge also helps you to take control of your Fibromyalgia
and reduce the exacerbation of its symptoms.
Lastly, seek support from others with Fibromyalgia. Check with your
physician, healthcare institution, and within your local community for a
Fibromyalgia support group. It is extremely beneficial to receive support and
understanding from others who have the same type of problems from Fibromyalgia
as you do. Connecting with a support group also helps you and your family to
cope with having a chronic illness. And who knows, maybe someday you will have
the opportunity to offer support to someone else just diagnosed with
Fibromyalgia. I guarantee it will be one of the most gratifying and fulfilling
experiences of your life.
Receiving a diagnosis of Fibromyalgia syndrome is an important first step
in managing this condition. It is not the last step though! It is imperative
that you have a clear understanding of Fibromyalgia, its signs and symptoms,
triggering factors and treatments. Learning to effectively cope with this
disorder is essential to one’s emotional and physical health. It is only then
that you will be able to manage your Fibromyalgia and prevent it from becoming
your whole life. While there isn’t a cure for Fibromyalgia, there are treatments
that are effective in managing its symptoms. There is life after finding out you
have Fibromyalgia. Tomorrow will be better and holds the possibility of a
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Fibromyalgia. Journal of Musculoskeletal Medicine, 9(4), 24–42.
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3 Arthritis Foundation,
Inc. (1995) Fibromyalgia Syndromes, 1–12.
4 Dunkin, M.A. (1993,
September–October). Fibromyalgia: Out of the Closet. Arthritis Today, pp. 24–28.
5 Dunkin, M.A. (1997, September–October). Fibromyalgia: Syndrome of the
’90s. Arthritis Today, pp. 41–47.
6 Ignatavicius, D.D., Workman, M.L.,
& Mishler, M.A. (1995). Medical–Surgical Nursing (2nd ed.). Philadelphia:
W.B. Saunders Company.
7 Goldberg, D.L. (1990) Fibromyalgia and chronic
fatigue syndrome: Are they the same? Journal of Musculoskeletal Medicine, 7(5),
8 Sherman, C. (1992) Managing fibromyalgia with exercise. The
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