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If you
are reading this you probably have a common syndrome of chronic
musculoskeletal pain called fibromyalgia. This chronic pain state is
now appreciated to be caused by abnormalities of sensory processing within
the spinal cord and brain. As such you will usually experience a
bewildering (both to you and your doctor) array of bodily and psychological
problems that can seldom be “cured”. However, armed with both patience
and knowledge, many fibromyalgia patients can be helped to live with less
pain and be more productive. In my own evolving experience of dealing
with this problem I can identify 7 aspects of management that are of
importance for your doctor to successful manage your fibromyalgia.
My Advice to Doctors who care for Fibromyalgia
Patients
1.
Realize that FM
patients are going to be a chronic challenge.
2.
Be non-judgmental and prepared to be an
advocate.
3.
Understand the pathophysiological basis
for symptoms.
4.
Analyze and treat pain complaints in a
systemic approach.
5.
Recognize and treat psychological
problems at an early stage.
6.
Recognize associated syndromes of
disordered sensory processing.
7.
Involve all
FM patients in a program of stretching and gentle aerobic exercise.
Treatment of
pain in fibromyalgia
Pain
is the primary over-riding problem for most of you. Many of the
problems you experience are largely a secondary consequence of having
chronic pain. When pain is even partly relieved, fibromyalgia patients
experience a significant improvement in psychological distress, cognitive
abilities, sleep and functional capacity. A total elimination of pain
is currently not possible in the majority of fibromyalgia patients. However
worthwhile improvements can nearly always be achieved by a careful
systematic analysis of the pain complaints. As a generalization
fibromyalgia related pain can be divided into general pain (i.e. the
chronic background pain experience and focal pain (i.e. the
intensification of pain in a specific region – usually aggravated by
movement). The latter is probably a potent driving force in the generation
of central sensitization. Attempts to break the pain cycle, to enable
patients to be more functional are especially important. In general,
most FM patients do not derive a great deal of benefit from NSAID
preparations or acetoaminophen, although NSAIDs are very useful in the
treatment of associated joint pain problems such as osteoarthritis.
Prednisone and other steroids have been shown to be ineffective in the long
term treatment of fibromyalgia.
General Pain.
The use of NSAIDs (e.g. ibuprofen, aspirin etc.) is usually
disappointing; it is unusual for FM patients to experience more than a 20%
relief of their pain, but many consider this to be worthwhile.
Narcotics (propoxyphene, codeine, and oxycodone) often provide a worthwhile
relief of pain. In most patients, concerns about addiction, dependency
and tolerance are ill founded. Ultram (Tramadol) and Ultracet
(tramadol + Tylenol), are the most useful pain medications in many patients.
They both have the advantages of having a low abuse potential and is not a
prostaglandin inhibitor; tramadol reduces the epileptogenic threshold and it
should not be used in patients with seizure disorders.
Currently opiates are the most effective medications for managing most
chronic pain states
(Friedman OP 1990,
Portenoy 1996)
. Their use is often condemned out of ignorance regarding
their propensity to cause addiction, physical dependence and tolerance
(Melzack 1990,
Portenoy et al 1997, Wall 1997)
. While physical dependence (defined as a withdrawal
syndrome on abrupt discontinuation is inevitable) is inevitable, this should
not be equated with addiction
(Portenoy 1996).
Addiction is a dysfunctional state occurring as a result of the unrestrained
use of a drug for its mind-altering properties; manipulation of the medical
system and the acquisition of narcotics from non-medical sources are common
accompaniments. Addiction should not be confused with
"pseudo-addiction". This is a drug-seeking behavior generated by attempts to
obtain
appropriate pain relief in the face of under-treatment of pain. Opiates
should never be the first choice for pain relief in fibromyalgia, but they
should not be withheld if less powerful analgesics have failed. In my
experience many fibromyalgia patients want to try opioid medications, but
then give up on them due to unacceptable side effects, such as mental fog,
increased tiredness, dizziness, constipation and itching.
Local
Pain.
Although you are experiencing widespread body pain -- a manifestation
of central sensitization -- you will also have multiple areas of tenderness
in muscles - so called "myofascial trigger points". The severity of
pain and the location of these "hot spots" typically varies from month to
month, and the judicious use of myofascial trigger point injections and
spray and stretch (see section on focal pain) is worthwhile in selected
patients. It is often worthwhile for your physician to identify the most
symptomatic points for myofascial therapy.
The steps involved in the
injection of trigger points are:
1.
Accurate identification of the trigger point.
2.
Identification and elimination of aggravating factors.
3.
The
precise injection of the myofascial trigger points with 1% procaine (a local
anesthetic).
4.
Passive
stretching of the involved muscle after the local anesthetic has taken
effect; this is
often aided by spraying the overlying skin with an ethyl
chloride spray.
In most FM patients, this
myofascial therapy needs to be repeated over a period of several weeks and
occasionally over several months. Unresponsiveness is usually due to failure
to eliminate an aggravating factor, imprecise injection of the trigger
point, or failure to inject satellite trigger points. Trigger points are
usually injected with 3 to 5 ml of 1-% procaine. Please note that these are
not “steroid shots”.
Performing “myofascial spray and stretch” often enhances the efficacy of
trigger point injections immediately after the injections. Spray and
stretch consists of an application of a vapocoolant spray, such as
ethyl chloride over the muscle with simultaneous passive stretching. A
fine stream of the spray is aimed toward the skin directly overlying the
muscle with the active trigger point. A few sweeps of the spray are
passed over the trigger point and the zone of reference. This is
followed by a progressively increasing passive stretch of the muscle.
Evaluation by an occupational and physical therapist often provides
worthwhile advice on improved ergonomics, biomechanical imbalance and the
formulation of a regular stretching program. Hands-on physical therapy
treatment with heat modalities is reserved for major flares of pain, as
there is no evidence that long-term therapy alters the course of the
disorder. The same comments can be made for acupuncture, TENS units
and various massage techniques.
Treatment of Sleep Disorders.
Non-restorative sleep is a problem for most of you and contributes to your
feelings of fatigue and seems to intensify their experience of pain.
Effective management involves (1) ensuring an adherence to the basic rules
of sleep hygiene, (2) regular low grade exercise, (3) adequate treatment of
associated psychological problems (depression, anxiety etc.) and (4) the
prescription of low dose tricyclic antidepressants (amitryptiline,
trazadone, doxepin, imipramine etc.
Some fibromyalgia patients cannot tolerate TCAs due to
unacceptable levels of daytime drowsiness or weight gain. In these
patients benzodiazopine-like medications such as Ambiem (zolpidem) are
usually very useful. Some fibromyalgia patients suffer from a primary sleep
disorder, which requires specialized management. About 25% of male and 15%
of female fibromyalgia patients have sleep apnea. Unless specific
questions about this possibility are asked sleep apnea will often be missed.
Patients with sleep apnea usually require treatment with positive airway
pressure (CPAP) or surgery. By far the commonest sleep disorder in
fibromyalgia patients is
restless leg syndrome. This can be effectively treated with
L-Dopa/carbidopa (Sinemet 10/100 mg at suppertime) or clonazepam (Klonipin
0.5 or 1.0 mg at bedtime).
Exercise for Fibromyalgia Patients
Fibromyalgia patients cannot afford not to exercise as deconditioned
muscles are more prone to microtrauma and inactivity begets dysfunctional
behavioral problems
. However, musculoskeletal pain and severe fatigue are
powerful conditioners for inactivity. All fibromyalgia patients need
to have a home program with muscle stretching and gentle strengthening, and
aerobic conditioning. There are several points that need to be
stressed about exercise in FM patients: (i) Exercise is health
training, not sport’s training. (ii) Exercise should be non-impact loading.
(iii) Aerobic exercise should be done for 30 minutes each day. This may be
broken down into three 10 minute periods or other combinations, such as two
15 minute periods, to give a cumulative total of 30 minutes. This
should be the aim -- it may take 6-12 months to achieve this level.
(vi) Strength training should emphasize on concentric work and avoid
eccentric muscle contractions. (vii) Regular exercise needs to become part
of the usual lifestyle; it is not merely a 3-6 month program to restore them
to health. Suitable aerobic exercise includes: regular walking, the
use of a stationery exercycle or Nordic track (initially not using the arm
component). Patients who are very deconditioned or incapacitated
should be started with water therapy using a buoyancy belt (Aqua-jogger).
Recognition
and treatment of psychological distress
As you
suffer from chronic pain there is a distinct possibility that you may
develop secondary psychological disturbances, such as depression, anger,
fear, withdrawal and anxiety. When “an event” is associated with the
onset of the fibromyalgia you may adopt the role of a "victim". Sometimes
these secondary reactions become the "major problem" for some patients. The
prompt diagnosis and treatment of these secondary features is essential to
effective overall management of fibromyalgia patients. Some
fibromyalgia patients develop a reduced functional ability and have
difficulty being competitively employed. In such cases your doctor will
hopefully act as an advocate in sanctioning a reduced or modified load at
work and at home. Unless you have a severe psychiatric illness (e,g,
major depressive illness or a psychosis), referral to psychiatrists is
usually non-productive. Psychological counseling, particularly the use of
techniques such as cognitive restructuring and biofeedback, may benefit some
patients who are having difficulties coping with the realities of living
with their pain and associated problems.
Fibromyalgia
associated syndromes
It is not unusual for fibromyalgia patients to have an array of bodily
complaints other than musculoskeletal pain. It is now thought that
these symptoms are a result of the abnormal sensory processing – as
described in the previous section. Recognition and treatment of these
associated problems are important in the overall management of your
fibromyalgia.
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Non-restorative sleep |
Cognitive dysfunction |
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Chronic fatigue |
Cold intolerance |
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Restless leg syndrome |
Multiple
sensitivities |
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Irritable bowel
syndrome |
Dizziness |
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Irritable bladder
syndrome |
Neurally mediated
hypotension |
1.
Chronic fatigue:
The common treatable cause of chronic fatigue in fibromyalgia patients are:
(1) inappropriate dosing of medications (TCAs, drugs with antihistamine
actions, benzodiazapines etc.), (2) depression, (3) aerobic deconditioning,
(3) a primary sleep disorder (e.g. sleep apnea), (4) non-restorative sleep
(see above) and (5) neurally mediated hypotension (see below). A new drug
called Provigil is of some help when used intermittently for management of
fatigue.
2.
Restless leg syndrome:
This strictly refers to daytime (usually maximal in the evening) symptoms of
(1) unusual sensations in the lower limbs (but can occur in arms or even
scalp) that are often described as paresthesia (numbness, tingling, itching,
muscle crawling) and (2) a restlessness, in that stretching or walking eases
the sensory symptoms. This daytime symptomatology is nearly always
accompanied by a sleep disorder - now referred to as periodic limb movement
disorder (formerly nocturnal myoclonus). Treatment is simple and very
effective – DOPA / Levodopa (Sinemet) in an early evening dose of
10/100 (a minority require a higher dose or use of the long acting
preparations).
3.
Irritable bowel syndrome:
This
common syndrome of GI distress that occurs in about 20% of the general
population is found in about 60% of fibromyalgia patients. The
symptoms are those of abdominal pain, distension with an altered bowel habit
(constipation, diarrhea or an alternating disturbance). Typically the
abdominal discomfort is improved by bowel evacuation. Due to abnormal
sensory processing these symptoms may be quite distressing to fibromyalgia
patients. Treatment involves (1) elimination of foods that aggravate
symptoms, (2) minimizing psychological distress, (3) adhering to basic rules
for maintaining a regular bowel habit, (4) prescribing medications for
specific symptoms; constipation (stool softener, fiber supplementation and
gentle laxatives such as bisacodyl), diarrhea (loperamide or diphenoxylate)
and antispasmodics (dicyclomine or anticholinergic / sedative preparations
such as Donnatal).
4.
Irritable bladder syndrome:
This is found in 40-60% of fibromyalgia patients. The initial
incorrect diagnoses are usually recurrent urinary tract infections,
interstitial cystitis or a gynecological condition. Once these
possibilities have been ruled out a diagnosis of irritable bladder syndrome
(also called female urethal syndrome) should be considered. The
typical symptoms are those of suprapubic discomfort with an urgency to void,
often accompanied by frequency and dysuria. In a sub-population of
fibromyalgia patients this is related to a myofascial trigger point in the
pubic insertion of the rectus abdominus muscles – and may be helped by a
procaine myofascial trigger point injection). Treatment:
involves (1) increasing intake of water, (2) avoiding bladder irritants such
as fruit juices (especially cranberry), (3) pelvic floor exercises (e.g.
Kagel exercises) and the prescription of antispasmodic medications (e.g.
oxybutinin, flavoxate, hyoscamine).
5.
Cognitive dysfunction:
This is a common problem for many fibromyalgia patients. It adversely
affects the ability to be competitively employed and may cause concern as to
an early dementing type of neurodegenerative disease. In practice the
latter concern has never been a problem and patients can be reassured.
The cause of poor memory and problems with concentration is, in most
patients, related to the distracting effects of chronic pain and mental
fatigue. Thus the effective treatment of cognitive dysfunction
in fibromyalgia is dependent on the successful management of the other
symptoms.
6.
Cold intolerance:
About 30% of fibromyalgia
patients complain of cold intolerance. In most cases this amounts to
needing warmer clothing or turning up the heat in their homes. Some
patients develop a true primary Raynaud’s phenomenon (which may mislead an
unknowing physician to consider diagnoses such as SLE or scleroderma.
Many fibromyalgia patients have cold hands and feet, and some have cutis
marmorata (a lace like pattern of violaceous discoloration of their
extremities on cold exposure). Treatment involves: (1) keeping
warm, (2) low-grade aerobic exercise (which improves peripheral
circulation), (3) treatment of neurally mediated hypotension (see below),
and (4) the prescription of vasodilators such as the calcium channel
blockers (but these may aggravate the problem in-patients with hypotension).
7.
Multiple sensitivities:
One result of disordered sensory processing is that many sensations are
amplified in fibromyalgia patients. In general fibromyalgia patients are
less tolerant of adverse weather, loud noises, bright lights and other
sensory overloads. Treatment involves being aware that this is a
fibromyalgia-related problem and employing avoidance tactics.
8.
Dizziness:
Is a common complaint of
fibromyalgia patients. Before this symptom is attributable to fibromyalgia a
thorough for other causes should be pursued (e.g. postural vertigo,
vestibular disorders, 8th nerve tumors, demyelinating disorders,
brain stem ischemia and cervical myelopathy). In many cases no obvious cause
is found, despite sophisticated testing. Treatable causes related to
fibromyalgia include: (1) proprioceptive dysfunction secondary to muscle
deconditioning, (2) proprioceptive dysfunction secondary to myofascial
trigger points in the sterno-cleido-mastoids and other neck muscles, (3)
Neurally mediated hypotension (see below) and (4) medication side effects.
Treatment is dependent on making an accurate diagnosis. In
patients in whom no obvious cause is found a trial of physical therapy,
concentrating on proprioceptive awareness may prove worthwhile.
9.
Neurally mediated hypotension: Patients with this problem
usually have a low blood pressure that does not go up normally on standing
or on exercise.
Although such patients often have a low ambient BP with postural changes,
these findings are not a prerequisite for diagnosis. A tilt table test
with the infusion of isproterenol is the most reliable way to confirm this
diagnosis. Treatment involves: (1) education as to the triggering
factors and their avoidance, (2) increasing plasma volume (increased salt
intake, prescription of florinef), (3) avoidance of drugs that aggravate
hypotension (e.g. TCA’s, anti-hypertensives), (4) prevent reflex (prescribe
β-adrenergic
antagonists or disopyramide) and (5) minimize the efferent limb of the
reflex (prescribe
α2-adrenergic
agonists or anti-cholinergic agents).
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