Difficulties With Getting A Fibromyalgia Diagnosis

One of the biggest challenges facing individuals with fibromyalgia is the difficulty that often occurs in obtaining a correct diagnosis. Since fibromyalgia is a diagnosis that is made by excluding other possible conditions, there is often a lengthy period of testing, checking possible alternative diagnoses or even finding a doctor that is open to a diagnosis of fibromyalgia.

There are some interesting statistics on obtaining a diagnosis of fibromyalgia. Most patients, who are typically women, will experience symptoms for years before getting a diagnosis. During this time the symptoms most often experienced are sleeping problems, pain and fatigue as well as concentration difficulties. Patients rate the severity of these symptoms on average at a level of 7.3 out of a possible 14, indicating that pain was typically moderate to severe. In addition 22% had difficulty in continuing to work and almost a quarter of the respondents did not work in the lead up to the diagnosis. Patients tended to wait at least 12 months before first reporting the symptoms to a physician, and then there was an average of 2.3 years until the formal diagnosis was made.1 During this same study, which included 800 patients and 1622 physicians, patients reported talking to 3.7 different physicians to obtain a diagnosis.

One of the biggest problems for physicians is the number of symptoms and medical challenges that the patient is facing when he or she finally does make an appointment. By this time, the pain is often severe or the patient may not report all pain at the same time, focusing instead on the most problematic issue. This can lead to an incomplete symptom list and may predispose the physician to look only at one or two possible diagnosis. In addition, the type of physician the patient first reports to will impact the range of possible options he or she will consider.

Major Issues for Physicians

Since 1990, when the American College of Rheumatology (ACR) developed a standard set of classification criteria, specific symptoms have been used in the diagnosis of fibromyalgia. These include the presence of 11 of 18 possible tender points on the body combined with one other defined criteria of widespread pain. The complication with this method of diagnosis is that there are other syndromes and conditions that mimic or overlap with the symptoms seen in patients with fibromyalgia. Patients may be diagnosed with more than one of the chronic pain syndromes including fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, migraines, myofascial pain syndrome, hypothyroidism or other related syndromes. There is no definitive medical test for fibromyalgia or the other chronic pain syndromes, which means the diagnosis very challenging. 2

Other concurrent diagnosis may also complicate the physicians ability to pinpoint fibromyalgia. These include depression, anxiety and other primary mood disturbances that can create a range of similar symptoms to fibromyalgia. As antidepressants and other medications used in treating these conditions can cause a decrease in the severity of symptoms of fibromyalgia, the diagnosis for the mental health condition is often easier to obtain than one of fibromyalgia, especially with a positive response to medication.

There have been several complications in determining which medical specialization should be treating patients with fibromyalgia. About 50% of physician visits for fibromyalgia patients are to their primary care physician. Another 15% of visits are to rheumatologists. Other specialists that often seen fibromyalgia patients includes gynecologists, neurologists, psychologists, and psychiatrists. This complicates treatment as each specialty may approach the treatment a little different than the other specialties.

Major Issues For Patients

One of the most frustrating issues for patients with fibromyalgia is the difficulty in articulating the symptoms they are experiencing and understanding that they are all related. Often the symptoms are brought to the attention of a doctor and then dismissed or lumped into another health issue. Patients often feel they are not heard or not listened to by their physician and may actually stop reporting pain, fatigue and related symptoms. For many women that are over the age of 50 the symptoms they experience may be diagnosed by the physician as part of menopause or perimenopause, which can be a serious concern because of the similar nature of the various symptoms.

Patients often do not want to change doctors, particularly if they have a strong relationship with a family or primary physician. They may also be very unwilling to ask for a second recommendation for fear of insulting or offending their current medical health professional. There may also be multiple different physicians involved with the patient’s symptom management, but they may not be working together as a treatment team, instead the patient is communicating the specific symptoms only to one professional.

Doctors And Diagnosis

Patients that go to a primary care physician are less likely to receive a diagnosis of fibromyalgia than those that go to a rheumatologist or a doctor that specializes in pain management. However, in a new study it was found that primary care physicians are accurate in a diagnosis of fibromyalgia in approximately 70% of all patients, but this study may not represent a worldwide ability of family doctors. 3

As mentioned earlier, patients often do not provide doctors with the whole range of symptoms they are experiencing, perhaps because they may not seem related to the patient. For example, a patient may not associate pain in soft tissue with digestive disturbances or memory and concentration difficulties. Patients may also under-report specific symptoms that they feel are associated with already existing conditions.

Checklists for fibromyalgia which are currently available to medical professionals may help if the doctor is familiar with the condition. These include the criteria developed by the American College of Rheumatology (ACR) and specifically outline the symptoms that the patient may present. 4

There are also different diagnostic options available including pain rating scales for fibromyalgia, such as those designed to evaluate symptom based criteria that may include or expand on the criteria used by the ACR. In 2010, the ACR added an alternative method of diagnosing fibromyalgia that does not rely on the tender points. Rather, it evaluates patients based on their symtpoms of fatigue, sleep difficulties, and areas of self-reported pain. This new scale may make it easier for busy primary care physicians to make the diagnosis of fibromyalgia.

References

1 Choy, E., Perrot, S., Leon, t., Teresa,  et al. (2010). A patient survey of the impact of fibromyalgia and the journey to diagnosis. BMC Health Services Research

2 Goldenberg, D. L. (2009). Diagnosis and Differential Diagnosis of Fibromyalgia. The American Journal of Medicine , S14-S21.

3 Shleyfer, E., Jotkowitz, A., Karmon, A., et al. (2009). Accuracy of the Diagnosis of Fibromyalgia by Family Physicians: Is the Pendulum Shifting? The Journal of Rheumatology , 170-173.

4 Wolfe, F., & Hauser, W. (2011). Fibromyalgia diagnosis and diagnostic criteria. Annals of Medicine , 495-502.

This article was originally published on July 11, 2012 and last revision and update of it was 9/7/2015