Adolescent Health Care: A Practical Guide
Fibromyalgia Syndrome and Reflex Sympathetic Dystrophy
David M. Siegel
Fibromyalgia syndrome (FS) is predominately a disorder of females, and is characterized by widespread pain, fatigue, poor sleep, and some or all of a variety of other complaints including recurrent headache, irritable bowel syndrome, dysmenorrhea, arthralgia, stiffness, irritable bladder syndrome, Raynaud phenomenon, paresthesias, and depression. Establishing the presence of FS can be challenging for the clinician and a significant number of patients will have had prolonged pain, fatigue, and other symptoms before diagnosis. Therefore, they have often acquired a significant degree of disability. In adolescents, this can manifest as a decline in school performance, increasing school absence, and withdrawal from usual activities.
Because the entity of FS has received widespread attention in the lay media, it is not rare for patients with varied somatic symptoms to incorrectly self-diagnose and somewhat insistently query their provider as to whether FS is present. It is therefore important for the clinician to have a working understanding of the diagnostic approach to FS to correctly identify those who do and do not have the condition. Once properly identified, it is equally important that an appropriate treatment strategy be implemented, which should result in a decrease in symptoms and return to and maintenance of a normal level of functioning and quality of life.
Descriptions of patients with widespread pain, tender points, and fatigue, in the absence of an alternative biomedical or psychiatric diagnosis, have appeared in the literature since the 1800s. These early reports used terms such as neurasthenia, muscular rheumatism, or soft tissue rheumatism as diagnostic labels for patients, many of whom we would now identify as having FS. The term fibrositis appeared in a paper by Gowers in 1904 and persisted until the 1980s when it was replaced by fibromyalgia, which was deemed more accurate given the lack of objective evidence for inflammation in the disorder Gowers (1904). Concurrent with this evolution in nomenclature was the landmark observation reported by Smythe and Moldofsky (1978) characterizing the sleep disturbance in FS (Smythe and Moldofsky, 1978). The diagnosis was further refined with the 1990 publication of major and minor diagnostic criteria by the American College of Rheumatology (ACR) (see subsequent text).
Prevalence of FS in a general population of adults has been estimated at 3.4% in women and 0.5% in men (Wolfe et al., 1995) whereas in adolescents the figure is likely to be lower (Buskila et al., 1993). In the North America Pediatric Rheumatology registry, 7.65% of a total of newly referred diagnoses were FS (Bowyer and Roettcher, 1996).
The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia
Because of the lack of standard diagnostic criteria and clarity regarding the number, location, and examination technique of tender points, a multicenter study was undertaken in which 558 adult patients (293 with FS, 265 controls) seen in rheumatology centers were enrolled. Various elements of the history, physical examination, and laboratory studies were analyzed as to their predictive and discriminating value in diagnosing FS. This ACR collaborative study (Wolfe et al., 1990), published in 1990, established the following two major criteria:
- History of widespread pain has been present for at least 3 months. Pain is considered widespread when all of the following are present:
- Pain in both sides of the body
- Pain above and below the waist
In addition, axial skeletal pain (cervical spine, anterior chest, thoracic spine, or low back pain) must be present. Low back pain is considered lower segment pain.
- Pain, on digital palpation, must be present in at least 11 of the following 18 tender point sites:
- Occiput (2)—at the suboccipital muscle insertions.
- Low cervical (2)—at the anterior aspects of the intertransverse spaces at C5 to C7.
- Trapezius (2)—at the midpoint of the upper border.
- Supraspinatus (2)—at origins, above the scapula spine near the medial border.
- Second rib (2)—upper lateral to the second costochondral junction.
- Lateral epicondyle (2)—2 cm distal to the epicondyles.
- Gluteal (2)—in upper outer quadrants of buttocks in anterior fold of muscle.
- Greater trochanter (2)—posterior to the trochanteric prominence.
- Knee (2)—at the medial fat pad proximal to the joint line.
Digital palpation should be performed with an approximate force of 4 kg. A tender point has to be markedly painful at palpation, not just “tender.”
Subsequent work has suggested that in clinical setting, 11 tender points might represent an overly stringent threshold for establishing the diagnosis and proceeding with management, particularly in adolescents. In adolescents, we and others have maintained that in the presence of other consistent data, detecting fewer than 11 tender points does not exclude FS as a credible diagnosis.
Researchers have examined the concordance between the ACR criteria for fibromyalgia and clinician diagnosis, and between clinician diagnosis and diagnosis using a survey (Katz et al., 2006). Among the 206 patients, the clinician diagnosed fibromyalgia in 49.0%, whereas only 29.1% satisfied ACR criteria. They concluded that clinical diagnosis, diagnosis using ACR criteria, and diagnosis using the proposed survey were moderately concordant (72%–75%) and felt that all three methods had diagnostic utility.
- Achiness: The typical adolescent with FS is a young woman who describes the gradual onset of diffuse achiness in the periarticular soft tissue, or in the joints themselves. There is no redness or warmth, but patients frequently describe a degree of muscle or joint swelling that is not perceived by the health professional.
- Onset and precipitating events: Although a precipitating event (such as trauma or acute infection) can be reported, more commonly the onset is insidious.
- Fatigue and exercise intolerance: With ongoing pain, a high percentage of patients report fatigue with everyday activity, and a progressive diminution in exercise tolerance, which is aggravated by the decline in aerobic activity that usually occurs.
- Somatic complaints: Associated with the pain and fatigue are numerous somatic complaints including recurrent headache, abdominal pain with cramping and alternating diarrhea and constipation (irritable bowel syndrome), dysmenorrhea, joint stiffness, intermittent subjective swelling of hands and feet, Raynaud phenomenon, mood disturbance, and difficulty with concentration.
- Family history: A study has found aggregation of FS in families (Arnold et al., 2004). This is consistent with mothers presenting to our clinic with their daughters and stating that the child has the same disease they have, that is, FS. The parent's diagnosis of the daughter is not always borne out by the physician's evaluation.
- Quality of sleep (nonrestorative sleep): Although the above symptoms are frequently volunteered by the patient and parent(s), a key abnormality that warrants careful questioning and discussion by the provider is the quality of sleep and whether the adolescent feels tired much of the time. Delayed sleep initiation may be a problem, but the more telling finding concerns how one describes their state of restfulness on awakening. The adolescent with FS reports being tired in the morning. Furthermore, if asked “How many hours of sleep do you need in order to feel rested and refreshed?” the FS patient will be at a loss for specifying a figure. “No matter how many hours of sleep I seem to get, I am always tired. Even if I nap during the day (and many of these individuals are engaged in quite a bit of purposeful, daytime sleeping) I am never able to regain any energy.” This phenomenon is known as nonrestorative sleepand in our study was found in 98% of adolescents with FS (Siegel et al., 1998). More extensive questioning will uncover that the patient is quite restless during the night with multiple awakenings and descriptions of bed covers being significantly disheveled, or even entirely off the bed in the middle of the night or upon awakening in the morning. As found by Smythe and Moldofsky (Smythe and Moldofsky, 1978) and others, (Moldofsky, 2002) this restless, nonrestorative sleep pattern represents inadequate delta wave, or stage IV sleep because of intrusion upon by lighter alpha wave sleep. Eliciting a careful sleep description in an achy, tired teen is an essential part of the history.
- Review of systems: Important negative elements in the review of systems include a lack of fever, weight loss, oral lesions, or joints with swelling, warmth, erythema, or limitation of motion.
A comprehensive physical examination for FS should incorporate a systematic palpation of each of the 18 tender points (Fig. 38.1) as well as some control points. Proper technique involves identifying the cutaneous location and then applying 4 kg of pressure using the examiner's thumb or other finger. The physician can standardize her/his force of examination pressure by using a pinch strength meter to gauge one's technique (Baum, 1991). The force required results in a degree of discomfort even in patients without the diagnosis. However, in those with FS, the examination experience is much more unpleasant and characterized by grimacing and withdrawal. Typically, the patient is resistant to undergoing a repeat examination because of the magnitude of pain. The remainder of the physical examination is normal.
Laboratory and Imaging Studies
Laboratory and imaging studies in FS are consistently normal, and there are no diagnostic interventions that are absolutely confirmatory of the illness. In a patient with persistent symptoms suggestive of FS, and nothing found in the history or physical examination to suggest a competing condition, a judicious use of blood work consists of a complete blood count with differential, an erythrocyte sedimentation rate (and/or C-reactive protein) and, perhaps thyroid function studies. If depression is a comorbid concern, administration of a standardized metric such as the Beck Depression Inventory is a prudent step to better define the severity of affective disorder and the possible need for formal mental health consultation.
Approaching the management of the adolescent with FS involves a focus on sleep quality, pain, exercise, and, when indicated, depression.
FIGURE 38.1 Locations of tender points in fibromyalgia.
- Sleep hygiene: The poor, nonrestorative sleep pattern in FS is often the principle pathological process which, when adequately addressed, results in lessening of both pain and fatigue. The first priority is to establish proper sleep hygiene. This includes a consistent bedtime and morning wake-up time on both weekdays and weekends. We recommend a variation in the time when the adolescent retires at night and when she gets up in the morning of no more than 1 hours, regardless of the day of the week. We also strongly encourage avoidance of napping, as well as eliminating intake of caffeine, nicotine, alcohol, or stimulants.
- Medications for sleep: Although sleep hygiene is necessary, it is not usually sufficient in the initial treatment of FS. Most patients will require medication, the effect of which is to facilitate stage IV sleep. The most commonly used preparations are tricyclic antidepressants given in low doses 1 to 1 hours before bedtime. Specifically, cyclobenzaprine at a dose of 10 to 20 mg nightly is often very effective in these patients, although some adolescents may require higher doses. In a meta-analysis of adults with FS, it was found that those taking cyclobenzaprine were three times as likely to report overall improvement and enhanced sleep as compared with subjects treated with other medications (Tofferi et al., 2004). The initial benefit observed is a diminution in both nighttime awakening and disruption of bed covers. These changes occur before the patient reporting feeling more rested and refreshed in the morning. Usually, after 2 to 3 weeks of quieter, more restful sleep, an increase in energy begins to occur as well as a decrease in pain. If the quality of sleep is not changing within a couple of weeks, then upward titration of the dose in 5 to 10 mg increments is in order. Excessive morning grogginess can be a sign that the medication should be given earlier on the preceding evening.
If there is no clinical response to cyclobenzaprine, or adverse effects (such as morning sleepiness) preclude administration of a therapeutic dose, alternative medications include nortriptyline or doxepin. Other classes of drugs that have been studied and found to be variably successful include selective serotonin reuptake inhibitors (SSRIs) (Arnold et al., 2002), and serotonin/norepinephrine reuptake inhibitors (SNRIs) (Sayar et al., 2003). Although tramadol (a weak µ-opioid receptor) and sedative hypnotics (e.g., zolpidem tartrate) have been shown to be beneficial in FS, we discourage their use in adolescents because of the potential
long-term complication of dependency. A combination of tramadol and acetaminophen (Ultracet) was found to be effective in adults with FS and may be safer than tramadol alone because of the lower dose (Bennett et al., 2005). Nonsteroidal anti-inflammatory drugs and acetaminophen are not reliably helpful in these patients, but for the individual teen these analgesics might offer some interim relief while more definitive therapy takes hold.
- Exercise: In addition to this important attention to correcting the sleep defect, regular moderate exercise has also been shown to improve the status of patients with FS, both in the physical and psychological realms (Mannerkorpi and Iversen, 2003). A low-intensity aerobic exercise routine, such as brisk walking for 20 to 30 minutes, three times a week is an example of appropriate physical activity to incorporate into the treatment plan for FS. Referral to a physical therapist, or to a gym with a definite prescribed program, may be necessary for those who are unable to initiate this level of activity on their own. In such instances, a more careful and graded exercise routine must be created. For the competitive athlete, or the adolescent who desires regular participation in high intensity exercise, it is important to design a schedule of gradualreturn to this more strenuous activity. Attempts to abruptly take on a demanding regimen of physical exertion in the patient with FS who has not yet established consistently restful sleep can very well result in deterioration and regression of their status. In fact, the physician may find herself/himself in the role of compelling the adolescent to hold back on aggressive exercise until it is clear that improved sleep, decreased pain, and restoration of adequate aerobic capacity have occurred.
- Psychological support: In addition to these physical and pharmacological interventions, many of those with FS will benefit from some degree of psychological support and intervention. Obviously, if overt depression is present, appropriate mental health referral and treatment should take place. However, for some patients clinical depression is not the issue as much as it is distress and feeling discouraged and frustrated with the persistent fatigue and pain. This may be complicated by deterioration in school performance and/or disruption of peer relationships. In many families the presence of a teen with FS also introduces stress on siblings and parents. With all of the latter in mind, attention to the emotional and psychological burden of FS is an important priority. The adolescent care provider, pediatrician, or family physician can certainly assess these dimensions of the problem and undertake initial counseling for the patient and family as appropriate for her/his training background and level of expertise. Cognitive-behavioral therapy has been studied in FS and found to be a useful adjunct to treatment, as well (Williams, 2003). For some of these patients, formal mental health consultation will be necessary to fully address the psychological morbidity of the illness.
Evidence for Efficacy
Overall, the following evidence has been observed (Goldenberg et al., 2004):
- Strong evidence for efficacy of amitriptyline and cyclobenzaprine to help with sleep. Other effective interventions have included increasing the aerobic exercise, cognitive-behavioral therapy, and multidisciplinary therapy.
- Modest evidence for efficacy of tramadol, SSRIs, SNRIs, and pregabalin.
- Weak evidence for efficacy of growth hormone, chiropractic, manual and massage therapy, electrotherapy, and ultrasonography.
- No evidence for efficacy of opioids, corticosteroids, nonsteroidal anti-inflammatory drugs, benzodiazepine and nonbenzodiazepine hypnotics, melatonin, calcitonin, thyroid hormone, guaifenesin, dehydroepiandrosterone, and magnesium. In addition, there is no efficacy for trigger/tender point injections (Goldenberg et al., 2004).
Generally, the adolescent with FS responds reasonably well to the above approach and over a period of weeks will become increasingly less symptomatic with regard to pain and fatigue. Restoring complete exercise tolerance may take longer than correction of fatigue and pain, depending on the duration of symptoms and degree of deconditioning at the onset of therapy. If recovery does not proceed, then reformulation of the treatment plan should be undertaken, and/or consideration of consultation with a pediatric rheumatologist. If new symptoms or signs appear that introduce the possibility of alternative diagnoses, then the clinician should readdress the correctness of the FS label. Whereas some of the popular information available concerning adults with FS might suggest a poor outcome, with teens we emphasize that early and prompt diagnosis, coupled with appropriate treatment, is an effective means to prevent chronic, pathological, behavioral and physical adaptations that might otherwise occur and that most adolescents with FS should be able to return to their previous, premorbid status (Buskila et al., 1995; Siegel et al., 1998).
Reflex Sympathetic Dystrophy
Reflex sympathetic dystrophy (RSD) (also known as neurovascular dystrophy, or more recently, complex regional pain syndrome, type I) is a noninflammatory musculoskeletal condition that includes a syndrome of pain, hyperesthesia, vasomotor disturbances, and eventually dystrophic changes. The pathophysiology of the disorder is not well understood but is thought to be related to abnormal activity in the sympathetic nervous system. Underrecognized in the pediatric age-groups, RSD is most common in adolescent girls but can occur in younger children and in either sex. Although the outlook is better in adolescents than in adults, RSD can produce long-term disability and eventually trophic changes, resulting in permanent damage to the extremity.
- Personality factors: Certain personality factors seem to predispose individuals to this syndrome. Characteristically, adolescents with RSD are overachievers. These are “perfect children from perfect families.” Secondary gain (perhaps a respite from responsibilities) may be present.
- Trauma: The classic case of RSD in adults follows a history of trauma or medical illness affecting the involved area. In contrast, RSD in children and adolescents is associated with such an insult in fewer than 50% of cases. When trauma has occurred it may be of any type (burn, contusion, fracture, laceration, and nerve injury), but it is often minor, such as a sprain, strain, or bruise. The typically trivial nature of the injury and the fact that it may antedate RSD symptoms by weeks (or longer) often results in the patient and family not immediately identifying or remembering the inciting event.
- Neurological factors: These factors include multiple sclerosis, peripheral neuropathy, tumors, and cerebrovascular accidents, but occurring in only few adolescents with RSD.
- Other precipitating factors: Local cold injury, revascularization of an ischemic injury or postoperative wound.
In summary, the precipitating factor in RSD is frequently trivial and the pain response is dramatically out of proportion to the injury.
Patients with RSD complain of severe pain, hyperesthesia, and inability to use the affected extremity. Most characteristic of the syndrome is exquisite tenderness to the lightest touch (known as allodynia). Many of these patients cannot tolerate so much as the weight of a bed sheet on the involved area. Objective changes (caused by vasomotor instability) include swelling, blotchiness or bluish discoloration, reduced skin temperature, and decreased pulses. Perspiration may be either decreased or increased in the involved area. Pain is present in 98% of cases, decreased motion in 75%, and vasomotor changes in 67%. Early symptoms include burning or aching pain, swelling, and hyperthermia or hypothermia. Diffuse osteoporosis due to disuse is a common sequel.
- Bone scan: A technetium bone scan may reveal reduced blood flow. A normal scan, however, does not rule out RSD (i.e., an abnormal scan is not required to diagnose RSD).
- X-ray studies: In long-standing cases, there may be radiological signs of a macular osteoporosis (Sudeck atrophy), with patchy demineralization of the epiphyses and the short bones of the hands and feet (depending on the area affected).
Differential diagnosis and the features that distinguish RSD are as follows:
- Chronic arterial insufficiency: Pulses are chronically diminished or absent (variable in RSD).
- Raynaud disease: Episodic color changes (typically with a white to blue to red sequence) in the distal extremity, aggravated by cold (RSD is aggravated by exercise). Pain in Raynaud disease is restricted to the times of color change.
- Phlebothrombosis: No associated hyperesthesia or vasomotor changes.
- Rheumatic disorders such as systemic lupus erythematosus (RSD is usually associated with normal laboratory test results, including normal erythrocyte sedimentation rate, normal C-reactive protein, and a lack of significant elevation in autoimmune antibodies).
- Localized infections (no fever or leukocytosis in RSD).
Treatment outcome is improved if initiated early. The primary therapeutic aim should be the restoration of function, but a combination of pain relief and coping skills must also receive attention. The basic therapeutic approach is to employ a combination of physical therapy and psychological counseling
Treatment begins with discussing the diagnosis and its implications with the patient and parents in a clear, straightforward manner and placing greatest priority on immediate initiation of physical and, if indicated, occupational therapy. The fact that the prognosis is good with treatment should be emphasized and the importance of addressing the psychological dimension of the disease should be stressed. It may be useful to distinguish generally positive prognosis in adolescents from the frequently chronic course of RSD in adults. This is also the time to set the stage for the ongoing role of mental health care in the comprehensive management of RSD. Helping the family deal with the emotional aspects of the disease is crucial to the achievement of an excellent outcome. Although the prognosis for short-term improvement with physical therapy alone is good, without psychological intervention there is meaningful risk that RSD will recur or another pain amplification syndrome will develop.
- Pain relief: In RSD, pain generally is not amenable to direct therapeutic intervention. Furthermore, experience has demonstrated that as function improves, pain tends to diminish. When the teen complains of pain, the practitioner should listen, acknowledge the validity of the patient's experience, and then move on to framing matters in terms of improvement in function. Narcotic analgesics, in particular, should not be used.
- Physical therapy: Extremities should notbe immobilized because this may very well worsen symptoms and increase risk of disuse atrophy and osteoporosis. Physical therapy fosters use of the involved extremity.
- Psychological counseling and behavioral therapy: Behavioral therapy with psychological counseling is aimed at cultivating pain-coping strategies, helping the adolescent deal with underlying feelings and conflicts in ways that do not result in pain, as well as maximizing adherence to the physical therapy regimen. It should be emphasized to adolescents that the more they use the involved extremity, the quicker the extremity is going to get better; conversely, disuse will worsen the condition.
- Steroids and sympathetic blockers: The literature on adults with RSD reports that some patients benefit from corticosteroids, ganglionic blocking agents, and chemical sympathetic blockers. Our experience is that these modes of treatment generally produce short-lived or no benefit and may be associated with adverse effects. Furthermore, they may facilitate diverting the adolescent from dealing with underlying psychological issues. Except for the rare case in which
emotional factors are not implicated, these forms of therapy should therefore be avoided.
- Nonsteroidal anti-inflammatory drugs: These drugs usually have little effect in relieving the pain caused by RSD and long-term use is especially discouraged. The major emphasis should be on improving function. If normal functioning can be achieved, the pain will usually resolve or at least satisfactory coping strategies will develop.
- Phenoxybenzamine: This adrenergic (α-receptor) blocker has been helpful in some of the more classic cases of RSD in adults, caused by obvious trauma. However, this is not an agent recommended for use in adolescents.
- Hospitalization: In mild cases and even moderately severe cases, outpatient management will often suffice. In some centers, an outpatient program that provides 6 hours of exercises a day has produced good results. The practicalities of funding this approach can, of course, be challenging. With severe and long-standing symptoms, or failure of outpatient treatment, admission to an inpatient rehabilitation service may be necessary.
- Admission: On admission, the diagnosis and its implications, both emotional and physical, are explained to the patient and family. This is the time to be very clear about the emotional factors involved in most adolescents with RSD. This is also the time that the “discharge goal” is established. A typical example of a “discharge goal” for the adolescent with lower extremity involvement might be to walk for a reasonable distance, wearing shoes and socks, with no more than a minimal limp. Prosthetic devices and aids, such as wheelchairs, crutches, and braces, are quickly withdrawn. Patients are permitted to receive mild analgesics, such as acetaminophen, if requested, but they are advised that drugs are not likely to provide major pain relief.
- Weekly conferences: A weekly conference of multidisciplinary team members should be held to review the patient's progress and to set a series of objectives for the week. These objectives, usually exercises consisting of use of the involved extremity, must be quantifiable and sufficiently challenging so the teen will have to work diligently to accomplish them by the end of the week. At the same time, the objectives must be realistic and attainable. If the weekly objective is achieved earlier than the end of the week (e.g., on Friday), the teen may have a weekend pass. However, we attempt to avoid having the adolescent interpret not receiving a pass as punishment.
- Role of the team members
- Physician: The physician sets the overall direction of the patient's medical management, is a central participant in determining the discharge goal, regularly examines the patient, and consistently communicates with the patient and her or his parents.
- Nurse: The primary nurse plays a key role in the day-to-day coordination of the patient's inhospital routine. These tasks include helping to schedule weekly team meetings, reinforcing and explaining or clarifying weekly objectives to the teen, and checking on the teen's progress in meeting these objectives. The nurse is responsible for reporting 24-hour daily nursing observations of the patient's actions and interactions to the team members. Most important, the nurse has a special role to fulfill in establishing a trust relationship with the patient. This includes providing emotional support by encouraging the adolescent to talk about feelings and express anger in appropriate ways, listening to the teen's complaints of pain, and providing support to the family.
- Physical therapist: The physical therapist provides range-of-motion, strengthening, and weight-bearing exercises for the involved extremity. Desensitization techniques, such as vigorous toweling or immersion in contrast baths, are used. Atrophied muscles are strengthened and endurance is improved. Throughout this process, choices are permitted within limits (i.e., a win-win situation is set up in such a way that the teen attains her or his objectives while being allowed a certain amount of control over the treatment regimen). For example, the teen may be given the choice of vigorously toweling the involved extremity for a longer period or having the therapist do so for a shorter period. This fosters assertiveness and a shared responsibility in treatment and getting better. Throughout the process, the therapist uses a firm but nonpunitive approach.
- Occupational therapist (OT): In adolescents with RSD, upper extremity involvement is less common than lower extremity involvement. When the former is present, however, the OT provides tasks requiring hand and arm use in much the same way as the physical therapist does for the lower extremities. Adolescents with RSD are often over-achievers. Clearly, being an overachiever carries with it a psychological “price.” Therefore, the OT evaluates the teen's capabilities and the psychological costs involved in reaching his/her or the family's expectations. If these expectations are not appropriate, they need to be modified. The OT's role extends to facilitating age-appropriate activities and interactions. Occupational therapy provides opportunities for the teen to make choices and exercise age-appropriate independence, as well as to interact with other teens in a nonthreatening milieu.
- Mental health professional: The experience of this team member in dealing with RSD or other conditions characterized by chronic pain is crucial to the short-term outlook, but especially so to the long-term outlook. Her or his first task is to evaluate patient and family psychosocial dynamics. Studies have shown a high frequency of subtle family conflict, difficulty in expressing anger, and enmeshment with the mother. The father, on the other hand, is frequently viewed by teen and mother as powerful, but remote. Although the patient may be the family member with symptoms, (“the presenting patient” or “identified patient”) RSD should be seen as a family disorder, and family therapy is highly desirable.
- The parents: The parents form a vital component of the therapeutic team. Without their active participation, recovery tends to be slower or may not occur, and relapses are more common. The mental health professional on the team
uses a family systems perspective and facilitates parental involvement appropriately in that framework. Enmeshment between patient and parent (usually mother) is a common dynamic in these families and must be taken into account when determining the nature of parent participation.
The return to satisfactory functioning and a manageable (or absent) level of pain in these patients is usually fraught with patient and parent anxiety and resistance to treatment. Although there is a genuine desire to improve, aggressive physical therapy often strikes the family as counter intuitive (“My foot is exquisitely tender and painful and yet you tell me that the cure is for me to move, strengthen, and bear weight on that very part of my body that hurts the most?!”) Therefore, physicians and others on the team should expect major reluctance on the part of the patient to fully engage in treatment. Be cautious not to automatically frame this reluctance as oppositional or “noncompliance.” Especially during this initial phase of therapy, it is rather essential that the team be consistent in its expectations and not waver from the therapeutic plan. By maintaining a supportive structure and a respectful but absolutely persistent adherence to the principles outlined in the preceding text, a gradual and substantial recovery is a realistic treatment outcome.
For Teenagers and Parents
http://www.niams.nih.gov/hi/topics/fibromyalgia/fffibro.htm. NIH fact sheet on fibromyalgia.
http://www.familydoctor.org/handouts/061.html. Patient handout from American Academy of Family Physicians (AAFP) on fibromyalgia.
http://www.afsafund.org/. American Fibromyalgia Syndrome Association.
http://www.fmnetnews.com. Fibromyalgia Network.
http://www.angelfire.com/on/teenfms/main.html. Teen guide to fibromyalgia.
http://www.rheumatology.org. American College of Rheumatology.
http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_dystrophy.htm. NIH facts sheet on RDS.
http://www.rsds.org. Reflex Sympathetic Dystrophy Syndrome Association of America.
http://www.arthritis.org/conditions/diseasecenter/rsds.asp. Question and answers on RSD from the Arthritis Foundation.
http://www.angelfire.com/wi/rsdhopeteens/. Teen site on RSD.
For Health Professionals
http://www.rsds.org/3/clinical_guidelines/index.html. Photo gallery of RSD patients.
References and Additional Readings
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Bennett RM. The rational management of fibromyalgia patients. Rheum Dis Clin North Am 2002;28:181.
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Bowyer S, Roettcher P. Pediatric Rheumatology Database Research Group. Pediatric rheumatology clinic populations in the United States; results of a 3-year survey. J Rheumatol1996;23:1968.
Buskila D, Neumann L, Hershman E, et al. Fibromyalgia syndrome in children—an outcome study. J Rheumatol 1995;22:525.
Buskila D, Press J, Gedalia A, et al. Assessment of nonarticular tenderness and prevalence of fibromyalgia in children. J Rheumatol 1993;20:368.
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Reflex Sympathetic Dystrophy
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