The delivery of quality health care requires a sound working relationship between patient and provider, but this can be difficult to achieve even in the best of circumstances. Differences in treatment goals, expectations, time constraints, and educational background form substantial barriers to effective patient-provider communication. Important in any situation, this relationship is especially critical when treating a poorly understood, difficult to diagnose, and inadequately controlled condition like fibromyalgia syndrome.
Patients and physicians are often too personally vested in their roles to recognize these potential pitfalls, and the result is an unpleasant and dissatisfactory encounter for both patient and provider. To understand how this happens, it is constructive to look at the differences in how each party perceives this sometimes contentious relationship.
Fibromyalgia patients are typically looking for two things when they first visit their doctor. They want someone to listen and understand, and they want to feel better. Reasonable desires, certainly, but not without the potential to create problems, either.
As modern citizens, we have been conditioned to think of our doctor as we would our auto mechanic. When something breaks we have it diagnosed, repaired, and continue as before, and this is actually a pretty good analogy most of the time. If we get a respiratory infection, we get it diagnosed, take our antibiotics, and in a week our metaphorical motors are running as smoothly as ever.
This is the expectation many fibromyalgia patients bring to their first office visit... and it is likely very different from the approach their physician will take. Of course, physicians are fond of the auto mechanic analogy, too. Given their choice, most would probably choose to see patients with definable, structural illnesses that can be treated with a high probability of success. Unfortunately, fibromyalgia syndrome does not fit this model. The fact that fibromyalgia symptoms are so diverse and the pain so generalized immediately presents treatment problems for the physician.
Providers tend to be cautious anytime a patient presents with idiopathic pain. Legal and ethical responsibilities require the provider to prescribe pain medications for medical purposes only, and subjective pain with no definable cause is a favorite ruse for individuals attempting to illegally divert drugs. It is unfortunate for suffering patients that fibromyalgia syndrome presents in this manner, leaving physicians immediately faced with a dilemma, especially when the patient is unfamiliar.
This is not intended as an indictment of physicians or their training. Quite the opposite, this cautious approach is exactly what should be expected from a competent physician. Suffering fibromyalgia patients are not likely to have this idea foremost in their minds, though.
By the time they reach the doctor's office, most fibromyalgia patients have already dealt with a barrage of skepticism about their invisible illness. Spouses, employers, friends, and co-workers likely will have expressed some level of incredulity about their condition at some point, and it is natural for fibromyalgia patients to eventually assume a defensive attitude about their health. Combined with a provider's professional skepticism, this defensiveness sets the stage for potential patient-provider conflicts.
Even when these initial difficulties are overcome, the nature of fibromyalgia creates other problems. The lack of quantifiable testing leaves the diagnosis of fibromyalgia open for debate, and inaccurate diagnosis of fibromyalgia is relatively common. Medically unexplained symptoms and bodily dysfunctions are common complaints in primary care settings, and differences in the assessment of these symptoms can create a relationship challenge between the provider and patient.(1)
Patient reaction to a diagnosis of fibromyalgia syndrome can vary according to expectations, but often follows a predictable pattern which can act to undermine the physician's treatment plan.(2) The typical first reaction is one of denial. As discussed earlier, most fibromyalgia patients are expecting a definable illness that can be adequately controlled, if not completely cured. A diagnosis of fibromyalgia syndrome usually offers neither of these desired outcomes.
Even if the diagnosis is accepted, patients still tend to seek out second opinions, both medical and non-medical, in an attempt to find a more suitable outcome. Many times this is done without the diagnosing physician's knowledge and may lead to non-compliance with prescribed therapy serving to further undermine the patient-provider relationship. Physicians tend to see this activity as subversive and may come to view their fibromyalgia patients as difficult, demanding or illness-focused.(3) As a result of these attitudes, patients may have their pain and frustrations discounted by health care providers.
These tensions tend to be self-reinforcing as patients become more frustrated with redundant testing, poorly treated symptoms, and condescending attitudes. Health care providers may begin spending less time with these patients (viewing them as having unrealistically high expectations) or come to see their illness as primarily psychosomatic.(4,5) Obviously, this situation does nothing to improve patient outcomes, and leaves both patient and provider emotionally drained.
The good news is that solutions to this problem have been identified, but they require the commitment of both patient and provider in order to be effective. Shared decision-making, in which the patient plays an active role in selecting appropriate therapy, has been shown to make both a qualitative and quantitative difference in patient outcomes.(6) Including family members in the treatment plan also tends to enhance improvement.
"One size fits all" therapy does not work well in treating fibromyalgia syndrome, and an interdisciplinary approach often achieves better results.(2) Providers who consult with allied health team members report better results and less stressful patient interaction when treating fibromyalgia patients.
Above all, successful treatment of fibromyalgia requires a hopeful attitude from the patient. Patience, encouragement, and motivation are, then, necessary components of any treatment plan. Cultivating this cooperative partnership early in treatment helps avoid many of the pitfalls that can eventually poison the patient-provider relationship.
1. Fitzcharles MA, Boulos P. Inaccuracy in the diagnosis of fibromyalgia syndrome: analysis of referrals. Rheumatology. 2003 Feb;42(2):263-7.
2. Alghalyini B. That sinking feeling: a patient-doctor dialogue about rescuing patients from fibromyalgia culture. Can Fam Physician. 2008 Nov;54(11):1576-7.
3. Asbring P, Närvänen AL. Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Soc Sci Med. 2003 Aug;57(4):711-20.
4. Stutts LA, Robinson ME, McCulloch RC, Banou E, Waxenberg LB, Gremillion HA, Staud R. Patient-centered outcome criteria for successful treatment of facial pain and fibromyalgia. J Orofac Pain. 2009 Winter;23(1):47-53.
5. Robinson ME, Brown JL, George SZ, Edwards PS, Atchison JW, Hirsh AT, Waxenberg LB, Wittmer V, Fillingim RB. Multidimensional success criteria and expectations for treatment of chronic pain: the patient perspective. Pain Med. 2005 Sep-Oct;6(5):336-45.
6. Bieber C, Müller KG, Blumenstiel K, Schneider A, Richter A, Wilke S, Hartmann M, Eich W. 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 Educ Couns. 2006 Nov;63(3):357-66.