Recently I ran into an old acquaintance. We bump into one another once or twice a year and usually spend time catching up and promising to get together one of these days. This time, she droned on and on about how much pain she’s in, how she aches all over, how she’s tired all the time, and about her new diagnosis of fibromyalgia — the cause of all her problems. Hearing her moan endlessly about her aches and pains made me understand a bit better some of the comments one hears about fibromyalgeurs. I couldn’t wait to get away.
People with fibro are generally considered psych cases. According to one ER nurse, it’s the “it hurts to be fat” diagnosis. Reading medblogs one gets the idea that people who claim to have fibromyalgia are:
- clinically depressed and in denial
- looking to live off disability
- beneath contempt
Why does a fibro diagnosis evoke such strong feelings? What is fibromyalgia?
First, it is not a disease. Fibromyalgia Syndrome (FMS) is a label for a group of symptoms. Widespread pain is the main symptom. Sleep disturbances are common, as are memory problems and fatigue (and I have no idea why those are considered separate issues). About 30% of people are depressed at the time of a FMS diagnosis.
Diagnostic criteria from the American College of Rheumatology (1990) is:
- Widespread pain > 3 months affecting all four quadrants
- 11 of 18 tender points
- Pain not explained by another condition
The tender-points test is quite subjective, and difficult for many to do well, so in 2010, ACR developed alternate criteria that was supposed to be easier in the primary care setting. With a Widespread Pain Index (WPI) and a Symptom Severity (SS) score, clinicians can generate a number that helps identify whether or not a patient qualifies for a FMS diagnosis. Worksheet here.
Take, for instance someone with tendonitis. This is painful. Long-term tendonitis can lead to sore muscles around the affected area. Pain can disrupt sleep and raise blood pressure. Extended lack of sleep can cause forgetfulness and difficulty thinking. Over an extended period of time, calcium deposits can form, which leads to additional pain. It is very easy for someone with long-term tendonitis to get a high SS score under the 2010 criteria. If the tendonitis is bilateral, or in multiple locations, there is also a high WPI. The patient appears to have FMS. Not so.
Regardless of the criteria used, one key is that the pain cannot be explained by other conditions.
I call a fibro diagnosis, “The clinician didn’t want to take the time to figure out what’s really wrong, so slapped a label on you in hopes that you’ll quit complaining.”
Many conditions have symptoms similar to FMS. The average person with ankylosing spondylitis is wrongly diagnosed with FMS seven years before an accurate diagnosis is finally made. Perhaps earlier diagnosis and treatment would delay fusing of the spine. The spondyloarthropathies have symptoms quite similar to FMS, as do rheumatoid arthritis, lupus, hypothyroidism, polymyalgia rheumatica, plus tendonitis and bursitis in multiple joints.
In the realm of anecdotes, I know three individuals diagnosed with fibro (in addition to the person mentioned above). They were treated as mental cases, and their physical symptoms discounted. For years they suffered needlessly. They nearly died before someone finally figured out that they had heart disease. Treatment by cardiologists relieved all “fibro” symptoms. Heart disease symptoms are different in women than in men, and are apparently sometimes mistaken for fibro.
Accurate diagnosis is critical.
It is possible for those with autoimmune diseases to be diagnosed with FMS, but I believe far more often than is appropriate. It is important to recognize that RA, PsA, SLE, and other similar diseases can attack all connective tissues. Tendonitis and bursitis are common, and it is well-documented that over time they can cause muscle pain. Interestingly enough, some of the treatments for FMS are also treatments for tendonitis and bursitis.
Other treatments for FMS involve giving patients so many drugs that they are too numb and disoriented to notice the pain: Lyrica and Neurontin affect the nerves; both can be used to treat neuropathy (which is often caused by diabetes but can also be caused by RA, PsA, SLE, etc. – might this explain the numbness and tingling that some people report with “FMS”?), Cymbalta, Savella, Elavil, and Effexor are antidepressants (important when your symptoms aren’t being taken seriously). Flexeril is a muscle relaxant related to the tricyclic antidepressants. Tramadol, a pain medication, is sometimes prescribed, but other narcotics are thought to increase pain sensitivity in fibro patients so should be avoided. Patients would prefer treating the underlying cause of their pain, rather than medicating the symptoms.
Fibromyalgia is widespread pain of unknown origin. It is not to be confused with heart disease, tendonitis, bursitis, or comorbidities of any form of arthritis; in these cases, the origin of the pain is known and needs to be addressed.