Monday, November 28, 2011

Fibromyalgia, Dismissed, Misdiagnosed and Poorly Understood.

The short answer is fibromyalgia is frequently dismissed because of inadequate information, education and awareness among those who primarily treat us, despite the plethora of information available. How do we get this material into the hands of the right people? You, the patient is often better read regarding your condition because you have a vested interest, your own health.

Misdiagnosis and neglectful treatment of overlapping conditions

Fibromyalgia can be misdiagnosed when a thorough history and physical are not completed. The preliminary proposed diagnostic criteria (PDC) for fibromyalgia disregard what clinicians have become comfortable with, the tender point count. While I agree that tender points may really be trigger points, and contribute to the centralization of pain causing widespread allodynia, I fear this new criteria will give permission to leave out one of the most valuable tools for diagnosis, “The physical exam.” If this criteria is allowed to stand with the American College of Rheumatology, it will only cause further misdiagnosis of FM and lead us down another decade of inappropriate treatment. The proposed criteria only consider a check list of widespread pain, and symptoms of various comorbid conditions (all jumbled up together as primary to FM. These symptoms may be attributed to an overlapping condition frequently found in fibromyalgia patients creating a missed diagnosis.

So what can you do about it?

Do regular self examinations and use the anatomical diagram and the many other helpful tools found in our book so that your physician or other healthcare provider (HCP) can visually relate to your experiences. If you find taut bands of muscle, or myofascial trigger points (there can be several in one band of muscles), mark it, then have your HCP feel it too. If you are experiencing unusual symptoms, note them on your log from your last visit and discuss them with your doctor, and ask if they might be attributed to one of the comorbid or overlapping conditions found in fibromyalgia. Approach the subject with documented studies or information related to symptoms such as those found in our book. Lead in with a statement such as, “You probably already know this, but I wanted to share it with you.” (Refer to the multiple resources for this blog located at the end, which are just a tip of the iceberg.) Remember, doctors and HCPs don’t take every medical journal. If they are the right doctor for you, they will be appreciative.

You can print off this blog and take it with you.

Research continues to point fibromyalgia in the direction of a neurological disorder with centralization of pain, which is exacerbated by peripheral pain stimulus. Myofascial pain syndrome, AKA chronic myofascial pain, from knotted up pieces of muscle fiber (trigger points) has been found in most fibromyalgia patients and is a peripheral pain stimulus. (See ) In addition, comorbid conditions, such as, TMJ, restless leg syndrome, migraine, interstitial cystitis, all have this myofascial component so in essence FMers deal with a wheel spinning out of control, sending off pain impulses that keep us ramped up and ready for disaster.

Only better diagnostic criteria and education is going to solve this problem.

This blog is based on my answer as fibromyalgia expert at Share Care, “Why is fibromyalgia so frequently dismissed or misdiagnosed?”

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.


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