US Pharm. 2007;32(9):61-65.
An estimated three to six million Americans
(2% to 4% of the population) have fibromyalgia; 80% to 90% of cases occur in
women.1-3 Fibromyalgia is typically diagnosed between ages 20 and
50.2,3 Patients often see multiple physicians before receiving a
diagnosis.3 The symptoms of the disorder are nonspecific and
overlap with those of other health conditions, so the process of elimination
required for an accurate diagnosis often takes time, effort, and patience.
Unfortunately, there are no diagnostic tests available to confirm the
disorder. The diagnosis is based solely on the patient's description of
symptoms and physical examination. Due to the lack of objective data to
confirm the diagnosis, some health care providers dismiss patients'
complaints, and some providers even question the existence of the disorder.
3-7 However, patients with fibromyalgia often experience chronic pain,
fatigue, disrupted sleep, and other troubling symptoms that lower quality of
life.2,3 It is important for health care providers to recognize and
appreciate the pain and suffering associated with this syndrome and to show
empathy and caring when providing counseling. Also, chronic pain often
presents as a barrier to adherence to recommended interventions, such as
physical therapy and exercise. Health care providers can use motivational
interviewing techniques to increase adherence with nonpharmacologic and
pharmacologic therapies to promote self-efficacy.
Overview of Fibromyalgia
Fibromyalgia is
characterized by chronic, generalized musculoskeletal pain, which is often
associated with a chronic sleep disorder. To qualify as fibromyalgia, the pain
must be bilateral and present above and below the waist and along the spine.
5 In 1990, the American College of Rheumatology recognized fibromyalgia
as a chronic, noninflammatory syndrome of the muscles (rather than joints) and
established criteria for the diagnosis. These criteria include a history of
widespread pain lasting for at least three months and the presence of pain in
11 out of 18 tender point sites on the body when palpitated with approximately
4 kg of pressure (i.e., enough pressure to turn a thumbnail white). When this
pressure is applied to a tender point site on a patient with fibromyalgia, the
patient will flinch, jump, or pull away.4,5
The three hallmark symptoms of
fibromyalgia are musculoskeletal pain, fatigue, and sleep disturbances.4
However, many patients will experience other symptoms such as chronic low
back pain, irritable bowel syndrome, restless legs syndrome, mood disorders,
temporomandibular joint disorder, chronic headache, chronic fatigue syndrome,
chronic pelvic pain, and interstitial cystitis. Also, it is not uncommon for
patients to develop cognitive dysfunction, which may be referred to as
fibro fog.4 During disease flares, cognitive decline may
intensify. At these times, patients with fibromyalgia might find it difficult
to process new information, find the right word when talking, and follow a
conversation.4,5
The pathogenesis of
fibromyalgia is poorly understood but thought to be associated with
abnormalities in the central nervous system (CNS) sensory processing and the
peripheral tissue, which, when combined, results in a lower pain threshold.
CNS changes are thought to be associated with a blunted response of the
hypothalamic-pituitary-adrenal axis when the patient encounters a stressor.
Also, there might be increased CNS concentrations of substance P, excitatory
amino acids, and neurotro phins. The skin and muscle tissue might also
have increased substance P, DNA fragmentation, and problems with muscle
perfusion. It is hypothesized that these alterations lead to a heightened
response to all sensory stimuli.6
The treatment of fibromyalgia
involves medications, exercise/physical therapy, and counseling. Based on
current evidence, the most effective pharmacotherapy are CNS medications, such
as antidepressants, anticonvulsants, and muscle relaxants, which affect
chemicals such as serotonin, norepinephrine, and substance P within the brain
and spinal cord. These medications modulate the patient's perception of pain.
The agents with the strongest evidence for efficacy in fibromyalgia are
amitriptyline and cyclobenzaprine. There is modest evidence supporting the use
of other antidepressants such as selective serotonin reuptake inhibitors
(fluoxetine, sertraline) and dual-uptake inhibitors (venlafaxine, milnacipran,
duloxetine). Tramadol and the second-generation anticonvulsant pregabalin have
also shown some efficacy in one randomized controlled trial. The most
effective nonpharmacologic interventions are cardiovascular exercise,
cognitive behavioral therapy, patient education, and multidisciplinary
counseling.5
Communication Challenges
Patients with
fibromyalgia may present with confusion, frustration, and even anger
concerning their condition. It is not uncommon for patients to be dissatisfied
with their medical care. It may take months to years for a correct diagnosis
to be identified.3 Patients often see several physicians and are
referred to specialists for further evaluation. As each alternative etiology
is ruled out, the patient can become more and more anxious as they wonder what
is wrong with them.
This is compounded by the fact
that some physicians are not familiar with fibromyalgia, and others doubt its
existence due to the subjective nature of the diagnosis. It is not uncommon
for patients to encounter health care providers who dismiss their symptoms or
downplay the impact of the disorder. Some health care providers may imply that
that patient has a psychological illness, making the patient feel that "it is
all in their heads" or not real.4,7 The patient might feel
that their doctor does not believe them.
In a study by Haugli et al.,
patients with fibromyalgia were interviewed to explore factors that most
significantly impact the doctor–patient relationship.7
Patients reported that the most significant milestone in their condition was
receiving a diagnosis that did not imply the source of the pain was
psychological. Patients reported that the most stressful aspect of their
relationship with their health care provider was the suggestion that their
problem was mental. Patients stated that each time they were told that
objective data did not show a source for the pain, they felt mistrusted.
Health care providers should therefore acknowledge and respect the significant
impact that fibromyalgia has on quality of life. It is imperative that
patients feel that their health care providers believe them; if not, effective
communication will be impossible.
Another important issue that
patients with fibromyalgia reported as significantly impacting the
patient–provider relationship was a lack of shared understanding with the
health care provider.7 Patients expressed frustration when they
were given medications without explanation, offered generic advice such as
"You need to go home and relax," or told "You need to go jogging" despite the
fact they could hardly walk.7 This kind of advice can appear
patronizing and lacks caring. When communicating with patients with
fibromyalgia, it is very important to use patient-centered communication
strategies. It is important for the health care provider to acknowledge the
patient's symptoms and explore their impact on the patient through a two-way
exchange of information.8
Another challenge that
patients with fibromyalgia face is that although they may have a diagnosis,
this diagnosis does not have the same "credibility" as other health conditions.
9 Patients with fibromyalgia have an "invisible" disease state with
intense symptoms that are poorly understood by all. Some patients feel that
there is a stigma associated with the condition. In a study conducted by
Thorne et al., one patient said when physicians reviewed her chart and saw the
fibromyalgia diagnosis, they flagged her as being a difficult-to-manage
patient; she felt they had preconceived ideas.9 This impression
might not be too far-fetched. It has been reported that some physicians find
patients with fibromyalgia to be very challenging, time-consuming, and
demanding. Some physicians may become frustrated with their inability to
effectively treat this disorder and find it easier to refer the patient to
another care provider.10 If tension exists between patient and
provider, neither party will be open to problem-solving discussions.
Finally, since fibromyalgia
does not increase mortality, even health care providers who recognize and
appreciate the psychosocial consequences of the condition may discount the
importance of the disease because it is not life-
threatening. Patients
might feel that they have no network of care, support, information, and
counseling following the diagnosis. It is important to have an open dialogue
so that the treatment expectations of both the provider and patient correspond.
10
Communication Strategies
Because it is
common for a patient in the early stages of the diagnosis of fibromyalgia to
feel frustrated and angry with health care providers, it is important to
really listen to the patient. This means being able to "hear the patient
without judgment." Many patients with fibromyalgia feel judged when they hear
a response such as, "It's all in your head…. All of the objective tests look
fine." As a result, they do not feel understood or cared for. This creates
more stress, which, in turn, can exacerbate the condition. The following are
examples of inappropriate and appropriate dialogues demonstrating these
principles.
Inappropriate Dialogue
Patient:
This has been so frustrating. I have been to three doctors and nobody knows
what's wrong with me. I ache all over, and I can't sleep. They tell me it's
all in my head, because all of their tests really don't show anything. This is
ridiculous.
Pharmacist:
Well, I'm sure they're doing the best they can.
Patient:
If that's their best, I'm in trouble. I'm not imaging this. I am not
sleeping, I'm tired, I'm fatigued, and my body hurts.
Pharmacist:
Well, if the tests don't show anything, maybe you're just tired like the rest
of us.
Patient:
I can see I won't be getting any help here. Never mind. (Patient leaves.)
Discussion:
This patient is quite frustrated. She also feels somewhat hopeless. She has a
painful illness that deprives her of sleep and leaves her feeling fatigued.
Yet, the pharmacist seems to be supporting what her doctors are doing rather
than acknowledging her frustration and hopelessness. To make matters worse,
the pharmacist minimizes the patient's problems by acting like they are no
different than those of anyone else's. Why does this happen? The best answer
is called the righting reflex, which is is motivated by the desire to
fix a problem and make it better. We want to help the patient feel better but
we don't know how, so we try to fix his or her problem. In reality, this
produces what is called a paradoxical response--that is, the problem
becomes worse. The patient feels more stress, frustration, and anger because
he or she doesn't feel understood. Let's look at a more appropriate response.
Appropriate Dialogue
Patient:
This has been so frustrating. I have been to three doctors and nobody knows
what's wrong with me. I ache all over, and I can't sleep. They tell me it's
all in my head, because all of their tests really don't show anything. This is
ridiculous.
Pharmacist:
You sound very frustrated.
Patient:
I am. All in my head? I am in pain and can't sleep.
Pharmacist:
You are really going through something very difficult for you and can't seem
to get any answers.
Patient:
Yes. That's right. I know I need to be patient, but this is so hard,
especially since I don't know what the problem is.
Pharmacist:
Sounds frightening, and you are starting to have some doubts about whether
you will get some answers.
Patient:
I just want some help.
Pharmacist:
I understand. I know that your doctor has given you a prescription to help
with the symptoms you are feeling. I will get that filled and be back to talk
to you about it. Maybe this can help until you get some answers.
Discussion:
This pharmacist demonstrated listening and empathy. As a result, the patient
feels understood as indicated by the response "Yes. That's right." When people
don't feel understood, they feel hopeless. Through an empathic response,
pharmacists can let patients know that they sense how they feel without
judgment.
Conclusion
Responding to
patients with fibromyalgia can sometimes be difficult. Patients who are in
pain and lack sleep can often feel depressed, frustrated, or angry. We often
do not respond well to these emotions because we feel anxious or helpless
around them. Pharmacists should become more aware of the righting reflex and
the fact that it produces the exact opposite of the desired response. It is
importan to listen to the patient and show empathy. It takes courage and
caring to accurately reflect back understanding, but it can also be rewarding.
REFERENCES
1. Lawrence RC,
Helmick CG, Arnett FC, et al. Estimates of the prevalence of arthritis and
selected musculoskeletal disorders in the United States. Arthritis and
Rheumatism. 1998,41:778-799.
2. Fibromyalgia.
American College of Rheumatology. Available at: www.rheumatology.org/public/
factsheets/fibromya_new.asp? Accessed March 15, 2007.
3. Questions and
answers about fibromyalgia. National Institute of Arthritis and
Musculoskeletal Diseases (NIAMS). National Institutes of Health (NIH). US
Department of Health and Human Services. Bethesda, MD. NIH Publication Number
04-5326. June 2004. Pages 1-32. Available at:
www.niams.nih.gov/hi/topics/fibromyalgia/Fibromyalgia.pdf. Accessed March 15,
2007.
4. Peterson J.
Understanding fibromyalgia and its treatment options. The Nurse Practitioner
. 2005;30:48-57.
5. Goldenberg DL,
Burckhardt C, Crofford L. Management of fibromyalgia syndrome. JAMA.
2004;292:2388-2395.
6. Staud R. Biology and
therapy of fibromyalgia: pain in fibromyalgia syndrome. Arthritis Research
and Therapy. 2006;8:208-305.
7. Haugli L, Strand E,
Finset A. How do patients with rheumatic disease experience their relationship
with their doctors? A qualitative study of experiences of stress and support
in the doctor-patient relationship. Patient Education and Counseling.
2004;52:169-174.
8. Moral RR, Alamo MM,
Jurado MA, Torres LP. Effectiveness of a learner-centred training programme
for primary care physicians in using a patient-centred consultation style.
Family Practice. 2001;18:60-63.
9. Thorne SE, Harris
SR, Mahoney K, et al. The context of health care communication in chronic
illness. Patient Education and Counseling. 2004;54:299-306.
10. Bieber C, Muller
KG, Blumensteil K, et al. Long-term effects of a shared decision-making
intervention on physician-patient interaction and outcome in fibromyalgia. A
qualitative and quantitative 1 year follow-up of a randomized controlled
trial. Patient Education and Counseling. 2006;63:357-366.