Pain Coping Strategies and Quality of Life w/FMS~CFS..
Pain Coping Strategies and Quality of Life w/FMS~CFS..
05-15-2003, 08:50 AM
Hysterectomy: January 4th, 2000
Surgery Type: TAH
Ovaries: Kept 1 or both
Pain Coping Strategies and Quality of Life w/FMS~CFS..
Pain Coping Strategies and Quality of Life in Women with Fibromyalgia:
Does Age Make a Difference?
Journal of Musculoskeletal Pain, Vol. 9(2) 2001, pp. 5-18 Authors: Carol S. Burckhardt, PhD, RN; Sharon R. Clark, PhD., RN and
Robert M. Bennett, MD, FRCP
Traumatic Events, Health Outcomes, and Health Care Use in Patients with FMS:
Objectives: To characterize and compare the demographics, symptom profiles, pain coping strategies, and quality of life in three age groups
of women with fibromyalgia [FMS]
Methods: Self-report questionnaires. including the Fibromyalgia Impact
Questionnaire [FIQ], Beck Depression Inventory, Coping Strategies
Questionnaire, and Quality of Life Scale, were filled out by 343
consecutive women who were participating in FMS treatment programs.
Patients were divided into three age groups for purposes of data
Results: The youngest age group had their symptoms for a significantly
shorter period of time than the middle age and older age groups. Tender
point pain score, the FIQ physical functioning and well-being items, and
perceived ability to decrease pain were significantly worse for the
youngest age group when compared to the other two groups. The youngest
group had significantly higher catastrophizing scores and lower quality
of life than the oldest age group. Discriminant function analysis between
the youngest and oldest groups revealed that a combination of six
variables: length of symptoms, quality of life, tender point pain score,
morning tiredness, behavioral activity strategies, and a pain
control/rational thinking factor were 84% accurate in classifying these
patients into their original groups. When length of symptoms was
excluded, the remaining five variables were 79%, accurate in classifying
Conclusions: Young women with FMS perceive the severity of FMS to be
higher and respond with more distress than older women with FMS. This
finding is largely independent of symptom length.
Coping with chronic illness is a life-long task that cuts across
developmental stages. For women with fibromyalgia [FMS], these stages may
range from childhood to old age. Fibromyalgia is known to affect children
and adolescents as well as adults; however, the average age at
onset is about 45-48 years. Thus, much of the research to date has
focused on women in midlife. Nevertheless, many women in their 20's and
30's are diagnosed with FMS at the same time that they are taking on the
roles and responsibilities of work, marriage, and parenthood.
Most younger as well as middle-aged women with FMS worry that their
symptoms will become worse as they grow older. The general belief among
many clinicians is that symptom severity is enduring and less amenable to
treatment the longer symptoms have been present. To date, this belief has
not been subjected to scientific scrutiny in FMS clinical groups.
Although symptoms tend to remain persistent for many patients with FMS,
two studies have found that a majority of women with FMS rate
their symptoms as decreased in intensity from when they were first
diagnosed. Another report, which compared elderly women with FMS to
younger FMS patients, found that symptoms of anxiety as well as symptom
aggravation by weather, mental stress, and poor sleep were significantly
less common among the elderly women. Additionally, a 4.5 year
follow-up study of FMS patients given a 14 week course of treatment found
that increasing age predicted lower levels of pain and lack of energy.
Whether these findings represent changes in the symptoms
themselves, changes in coping with symptoms, adaptation to life
circumstances, or simply faulty memory is largely unknown. In any case,
one thing is clear, longitudinal studies to date have failed to confirm
any pattern of worsening with age.
The possibility exists that FMS may be at its highest intensity in the
early years after diagnosis. Getting through the period of uncertainty,
learning about the illness and its treatment, coming to terms with having
a chronic problem, and establishing new patterns of living are stressful
tasks to accomplish at any time in life. When these tasks are
coupled with the heavily task-oriented work of young adulthood, one might
expect that symptom severity and distress would be unusually high and
that satisfaction with one's quality of life might be lower. If this
is the case, more attention should be paid to developing strategies that
assist young women with FMS to better cope with symptoms and decrease
them to manageable levels so that they can concentrate more fully on the
developmental tasks of young adulthood.
Earlier we reported the use of coping strategies by a group of women who
entered and a subsample that completed an FMS treatment program. The use
of positive coping strategies was found to be associated with positive
outcomes. Depression and negative beliefs, such as catastrophizing, were
significantly related to more symptoms and decreased quality of life
(15). In this paper we extend the work to a larger cohort of patients
from two sites. Specifically, we report the results of analyses designed
to answer the question of whether a set of demographic and role
variables, FMS symptoms, depression, perceived control, coping
strategies, and quality of life assessment could distinguish younger from
older patients with FMS.
[i]Journal: J of Musculoskeletal Pain, Vol. 9(2) 2001, pp. 19-38
Authors: H. R. Walen, Ph.D.; K. Oliver, BA [Ph.D. Candidate]; E.
Groessl, Ph.D.; T. A. Cronan, Ph.D.; V. M. Rodriguez, BA [Ph.D.
Objectives: Fibromyalgia syndrome [FMS] is a chronic condition that is
resistant to treatment and has no known cause. However, researchers have
hypothesized a number of possible antecedents, including traumatic
events. The present study examined the relationship between the
occurrence and perceived severity of different traumatic events, health
outcomes, and health care use in patients with FMS.
Methods: Participants were 600 members [95% females, 85% Caucasian, mean
age =54] of a health maintenance organization who met the American
College of Rheumatology criteria for FMS. A self-administered
questionnaire was used to assess a patient's trauma history. The
dependent variables included health status, sleep, pain, depression, and
health care utilization.
Results: Ninety-one percent of the participants reported experiencing at
least one traumatic event prior to the onset of FMS symptoms. The average
number of events experienced was 3.6 and, using a 10-point
scale, the average severity rating was 7.5 . Analyses
demonstrated modest support for a relationship between the recall of past
traumatic events, their perceived severity, and several outcomes.
Conclusions: While the effect sizes of the relationships between trauma
and outcomes were small, results suggest that prospective studies
including an examination of the occurrence and perceived severity of
traumatic events may provide useful information about the etiology of
Fibromyalgia syndrome [FMS] is a chronic condition that is resistant to
treatment and has no known cause. While the most prominent feature of FMS
is widespread muscular pain, other symptoms include fatigue, sleep
disturbances, morning stiffness, headaches, depression, and irritable
bowel syndrome (1). Because there are no agreed-upon biological markers
for FMS, a diagnosis relies on a patient's report of widespread chronic
pain, a tender point examination, and ruling out diseases with similar
symptoms While studies of FMS and its correlates have increased recently, there is
continuing uncertainty about the causes and consequences of FMS.
Researchers have hypothesized sleep deficits, neurotransmitter
imbalances, muscle fiber irregularities, and psychological problems as
plausible causal mechanisms (3). It has also been suggested that trauma
may precede the onset of symptoms (4).
"Stress" and "trauma" are sometimes used interchangeably [or together as
in stressful trauma or traumatic stress]. Considerable research on stress
includes life events that are positive [such as marriage or the start of
a new job], but in this paper we restrict our examination to events that
are perceived as extremely negative [e.g., physical injury, sexual abuse]
The association between traumatic events and poor health outcomes, such
as chronic pain, is consistent with the theoretical framework suggesting
that exposure to stress precedes adverse health outcomes. Catastrophic
stress, such as that associated with post traumatic stress disorder
[PTSD], is related to poor subjective health status, increased health
care utilization, morbidity, and mortality (5). Early work investigating
the stress-illness relationship had a biochemical focus, emphasizing
adrenomedullary and adrenocortical responses to stress (6-8). This
research laid the groundwork that has implicated prolonged and repeated
secretion of catecholamines and corticoids in the development of
illnesses like cardiovascular disease, hypertension, and various other
Later work involved the psychological, or cognitive, component of the
stress response (9,10). This work recognized the critical role of the
person's cognitive appraisal of an event in determining its effects. The
acknowledgment that people respond differently to similar stressors gave
birth to a literature investigating coping mechanisms. Personality
variables, like optimism, negativity, hardiness, and efficacy have all
been implicated in the management of stressful events (11). Such coping
strategies affect the social and behavioral aspects of disease [i.e.,
social support, pain behaviors, etc.], as well as the consequent
physiological response to stress.
An example of the relationship between traumatic events and health is
found in the abuse literature. Sexual and physical abuse have been linked
to poor physical and psychological outcomes. A history of sexual and/or
physical abuse is pervasive among women suffering from chronic pain;
women with a past history of sexual abuse report more sleep disorders and
chronic pain with no identifiable cause (12), greater use of medical
services, and poorer perceptions of their health, than nonabused controls
(13). While the prevalence of abuse varies widely among studies, the
rates reported with chronic pain patients are higher than those typically
reported among healthy controls.
Research conducted specifically within the FMS population has revealed a
higher reported incidence of physical and sexual abuse among FMS
sufferers than controls. For example, one study found a higher prevalence
of lifetime sexual or physical abuse in a sample of FMS patients than in
a sample of rheumatic disease controls: 17% versus 6% and 18% versus 4%,
respectively (14). However, the rates for any prior abuse were much
higher: 53% for FMS versus 42% for controls (14). Similarly, Walker and
colleagues compared FMS patients with rheumatoid arthritis [RA] patients
and reported rates of sexual or physical assault to be 92% for the FMS
sample versus 67% for the RA sample (15). Taylor and colleagues report
rates of sexual abuse for FMS to be 65% compared to 52% for healthy
controls (16). Thus, different definitions of abuse and the way it is
assessed produce considerable variability in the estimates of rates, but
women with FMS tend to have a greater prevalence of abuse than controls.
Other less studied events have also been related to poorer physical and
psychological outcomes. For example, involvement in motor vehicle
accidents is associated with both PTSD and major depression (17, 18).
Investigations of physical trauma among FMS patients have revealed that
physical injury, such as that resulting from motor vehicle accidents or
surgeries, was related to loss of employment, receiving long-term
disability, and a decrease in physical activity (19). Some studies
suggest that physical trauma is a precipitating event in the development
of FMS. For example, in a sample of patients who had recently experienced
a neck injury [primarily whiplash], 21.6% were later diagnosed with FMS;
none of the patients had a chronic pain syndrome prior to the trauma
(20). Greenfield and colleagues reported that 23% of FMS sufferers
experienced a physical trauma prior to the onset of FMS symptoms (19),
while Turk and colleagues found that 47% of their FMS sample reported
surgery [9.8%], illness [6.6%] or injury as a result of an accident [30%]
as precipitating events (21 ).
Not only are there higher prevalence rates of past abuse among FMS
patients, as well as an established association between physical trauma
and FMS, but also there is also evidence that the occurrence of such
events is strongly related to various outcomes for this population. For
example, a study comparing women with FMS to those with RA indicated that
total maltreatment scores and trauma severity were significantly related
to both psychiatric distress and functional impairment outcomes, but only
for the women with FMS (15). In another study of women with FMS,
emotional trauma was related to more physician visits, functional
disability ratings, and fatigue, while physical trauma was related to the
receipt of disability compensation (22). Thus, research has produced
evidence that sexual and physical abuse, as well as other physical
traumas, is associated with FMS.
Establishing relationships between trauma and outcomes is the first step
in understanding the mechanisms connecting the variables. The specific
aim of the present study was to examine the relationship between the
occurrence and severity of specific traumatic events and several health
outcomes: health status, sleep, pain, depression, and health care
utilization, among FMS patients.
Past research led us to hypothesize that the occurrence and perceived
severity of traumatic events would significantly predict health outcomes
within the FMS population. Specifically, physical traumas were
hypothesized to have consistent significant relationships with physical
and psychological health outcomes.
What is CFS?
Chronic fatigue syndrome (CFS) is an emerging illness characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), and outside of the USA is usually known as myalgic encephalomyelitis (ME). In the past the syndrome has been known as chronic Epstein-Barr virus (CEBV).The core symptoms include excessive fatigue, general pain, mental fogginess, and often gastro-intestinal problems. Many other symptoms will also be present, however they will typically be different among different patients. These include: fatigue following stressful activities; headaches; sore throat; sleep disorder; abnormal temperature; and others.The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting unusually fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose.
What causes CFS?
The cause of the illness is not yet known. Current theories are looking at the possibilities of neuroendocrine dysfunction, viruses, environmental toxins, genetic predisposition, or a combination of these. For a time it was thought that Epstein-Barr Virus (EBV), the cause of mononucleosis, might cause CFS but recent research has discounted this idea. The illness seems to prompt a chronic immune reaction in the body, however it is not clear that this is in response to any actual infection -- this may only be a dysfunction of the immune system itself.A recent concept promulgated by Prof. Mark Demitrack is that CFS is a generalized condition which may have any of several causes (in the same way that the condition called high blood pressure is not caused by any one single factor). It *is* known that stressors, physical or emotional, seems to make CFS worse.Some current research continues to investigate possible viral causes including HHV-6, other herpes viruses, enteroviruses, and retroviruses. Additionally, co-factors (such as genetic predisposition, stress, environment, gender, age, and prior illness) appear to play an important role in the development and course of the illness.Many medical observers have noted that CFS seems often to be "triggered" by some stressful event, but in all likelihood the condition was latent beforehand. Some people will appear to get CFS following a viral infection, or a head injury, or surgery, excessive use of antibiotics, or some other traumatic event. Yet it's unlikely that these events on their own could be a primary cause.
Is CFS a "real" disease?
At this early point, many practicing clinicians remain unconvinced that CFS is a genuine illness, although it is slowly increasing in acceptance. The reluctance is due in part to the facts that (1) no specific cause has yet been found, (2) there is no observable marker that doctors can use to specifically identify the illness, and (3) most doctors are not yet familiar with the peer-reviewed research which does tend to legitimize this disease.Emerging illnesses such as CFS typically go through a period of many years before they are accepted by the medical community, and during that interim time patients who have these new, unproven illnesses are all too often dismissed as being "psychiatric cases". This has been the experience with CFS as well.But many top-level researchers are showing that this is a distinct, organic illness.
Who gets CFS?
Few studies address this question. Several show that 70 to 80 percent of CFS patients are women, although some researchers say that these are normal figures for any immune-related illness. Some studies indicate that CFS is less common among lower income people and minorities, but critics point out that the average CFS patient sees so very many doctors before they can get a diagnosis, that only those with great access to medical care get counted in such studies, thus giving a bias with regards to income and race
Shouldn't this illness have a better name?
There have been many complaints since the name CFS was adopted in 1988 by the U.S. Centers for Disease Control that this name trivializes the illness and reinforces the perception that it may not be a legitimate disease. U.S. policy currently is that there is much medical literature tied to the current name, and that a change of name should wait at least until an accepted biological marker is found.
How do I find good medical care for CFS?
It is very important to find a health practitioner who is familiar with this illness. The symptoms of CFS can be mimicked by other illnesses (autoimmune illnesses, cancer, hepatitis, diabetes, etc.), and if you in fact have another illness that is not properly diagnosed, you may be losing out on getting treatments that might be effective for you. It is still an uphill struggle to find a doctor who is experienced in diagnosing and treating CFS. The best source of advice for identifying local doctors who may be familiar with CFS is your local support group.
What symptoms are used to diagnose CFS?
CFS is defined somewhat differently by various medical groups in different countries. The 1994 research definition published by the U.S. Centers for Disease Control and Prevention recommends a step-wise approach for identifying CFS cases. The first step is to clinically evaluate the presence of chronic fatigue, i.e. "self-reported persistent or relapsing fatigue lasting 6 or more consecutive months".Conditions that explain chronic fatigue should exclude a diagnosis of CFS. These are:
- "any active medical condition that may explain the presence of chronic fatigue ..." - any previous condition which might explain fatigue and which has not documentably come to an end; - "any past or current diagnosis of a major depressive disorder with psychotic or melancholic features; bipolar affective disorders; schizophrenia of any subtype; delusional disorders of any subtype; dementias of any subtype; anorexia nervosa; or bulimia"; - substance abuse within 2 years prior to onset; - severe obesity.
The following should not exclude a diagnosis of chronic fatigue:
- conditions which cannot be confirmed by lab tests, "including fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or nonmelancholic depression, neurasthenia, and multiple chemical sensitivity disorder"; - any condition which might produce chronic fatigue but which is being sufficiently treated; - any condition which might produce chronic fatigue but whose treatment has already been completed; - any finding which on its own is not sufficient to strongly suggest one of the exclusionary conditions.
After the above criteria are met, the following core criteria for CFS are applied:
"A case of the chronic fatigue syndrome is defined by the presence of the following:
1) clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social or personal activities; and2) the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue:
- self-reported impairment in short term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social or personal activities;- sore throat;- tender cervical or axillary lymph nodes;- muscle pain;- multi-joint pain without joint swelling or redness;- headaches of a new type, pattern or severity;- unrefreshing sleep;- and post exertional malaise lasting more than 24 hours."
What is the role of stress and psychology in CFS?
Preliminary research suggests that CFS may involve a brain disorder -- specifically, HPA dysfunction which affects the stress response system in our bodies. CFS patients are standardly observed to be hypersensitive to stress. Stress does not merely mean unpleasant experiences, but rather any biological stressors, physical or emotional, which prompt a protective reaction in the body and which may alter the physiologic equilibrium known as "homeostasis". Stress in this physiological sense may be subtle and may not necessarily be noticed. Merely hearing loud sounds or seeing bright lights may be stressful in this context.High-stress events sometimes seem to "trigger" the first appearance of the illness and they will usually worsen the symptoms if the illness has already developed. Because stress is often mistakenly thought of as a purely emotional phenomenon with no physical aspect, the correlation of CFS with stress makes some people imagine that CFS must a non-physical "psychological illness". Medical studies show that stress plays an important role in several immune-mediated illnesses, and in fact a new field of research called psychoneuroimmunology has been created to study just this phenomenon.HPA and neurotransmitter dysfunction may make CFS patients excessively irritable, and may prompt panic attacks. These behaviors might be misinterpreted, thereby reinforcing a misconception that CFS is merely a psychological condition.
How does CFS usually begin?
"The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study":
Basic Information about ME/CFS and FMS:
Moira Smith's Chronic Pain Info resources:
For a slight majority of patients, the illness begins suddenly as though one had come down with the flu. Except that this "flu" doesn't seem to completely go away. For many other patients, the onset appears gradually over a long period of time.In many cases, a high-stress event seems to "trigger" the illness. There are many cases in which CFS appears to have begun with a severe head injury, for example. But since such events seem to have no apparent logical connection to the illness that follows, many have speculated that the CFS was latent in people beforehand in these cases, and that the stress of trauma merely triggered the stress-hypersensitivity aspect of the illness. Some have further speculated that other stressful factors in our environment, be they microbes or pollution, may also prompt this illness to bloom.
How long can CFS last?
The illness varies greatly in its duration. A few recover after a year or two. More often, those who recover are more likely to do so from 3 to 6 years after onset. Others may recover after a decade or more. Yet for some, the illness seems to simply persist.CFS often occurs in cycles. It can be frustrating to obtain some relief, but then not know whether you have recovered or if you are merely between cycles.
How does CFS relate specifically to fibromyalgia?
Many people believe these may be the same illness, as discussed in the previous question above. However, CFS researcher Dr. Paul Cheney notes that CFS patients have a strong intolerance for exercise, while for fibromyalgia patients, exercise is recommended as being therapeutic. An article by Dr. Muhammed Yunus discusses a comparison between these two conditions -
Hope this is of some help to my Dear ((Sisters)) suffering these painful syndromes
05-15-2003, 10:35 AM
Hysterectomy: November 2nd, 2000
Surgery Type: LAVH
Ovaries: Removed both
Pain Coping Strategies and Quality of Life w/FMS~CFS..
Thank-you so very much for posting this information. It has helped me a great deal to understand my illnesses better. I haven't done much research lately on my conditions...and this really helps me.
Thanks dear sister...
|From This Forum
||From Other Forums
17 Replies, Last Reply 07-25-2004, Started By Rochelle
5 Replies, Last Reply 06-30-2003, Started By SusieQM
7 Replies, Last Reply 01-15-2003, Started By BillsSweetie68
5 Replies, Last Reply 11-14-2002, Started By kthsgypsy
3 Replies, Last Reply 06-13-2002, Started By SweetOceanBlue
13 Replies, Last Reply 05-02-2002, Started By DarCee
0 Reply, Started By Adrite
7 Replies, Last Reply 02-08-2001, Started By BarbaraS1967
7 Replies, Last Reply 07-16-2000, Started By Danigrl2U
6 Replies, Last Reply 05-17-2000, Started By sheila2
6 Replies, Hysterectomy Options and Alternatives
3 Replies, Post Op Hysterectomy Support
3 Replies, Hormone and Menopause Central
0 Reply, Laparoscopic Hysterectomy Stories
22 Replies, Post Op Hysterectomy Support
5 Replies, No Ovaries - No Hormones - Managing Menopause
2 Replies, Post Op Hysterectomy Support
0 Reply, No Ovaries - Yes HRT - Surgical Menopause
17 Replies, Hysterectomy Options and Alternatives
0 Reply, Abdominal Hysterectomy Stories