Fibromyalgia the orphan, are our adoptive parents the right ones?

Where do we belong? “Sometimes described as an “orphan” disorder, FM is much like an unclaimed waif. Finding its closest molecular relative will determine its scientific classification.” (Cooper and Miller, pg. 16).

Since the decision was made to classify fibromyalgia as a rheumatological disorder, I have felt ill at ease, because rheumatologists, while highly educated in clinical problems involving joints, soft tissues, autoimmune diseases, vasculitis, and inherited connective tissue disorders, their expertise does not involve conditions affecting the central nervous system or myofascial pain syndrome, both present in most fibromyalgia patients.

The research has exploded showing fibromyalgia is due to an upset in neurotransmission in the brain leading to “centralization” of pain, and most experts, including rheumatologists that treat FM, believe this. So we ask, “Should fibromyalgia be classified a neurological condition and thereby treated by neurologists instead of rheumatologists?” Well, yes and no, basically for the same reasons listed above. Most neurologists do not understand the role of myofascial pain caused by myofascial trigger points, what they are, or how they are best treated. Myofascial trigger points are peripheral pain generators for other conditions too, such as, dysfunctional pelvis, migraine, restless leg syndrome etc. The question is, are they willing to learn?

The proposed preliminary diagnostic criteria for fibromyalgia will move us from a musculoskeletal classification (for insurance coding, ICD) into somaticism of mental health. All evidence suggests FM is a disorder of the central nervous system, involving the autonomic and immune systems.

I don’t think the rheumatologists really knew what to do with us. We certainly weren’t a patient type they would ask for, because so little was known about FM at the time. But, some did hang in there with us, and we began to learn more about this once illusive illness. As the research evolves, I cannot say with certainty that FM belongs under the care of rheumatology. So for now, if you have a doctor that understands and is current with the research on FM, you are in the right place. Educate them as you can by sharing what you find regarding myofascial pain. Pain from myofascial trigger points has been found in 90% of FM patients. This is a significant piece of information.

Learn more about chronic myofascial pain at http://www.thesethree.com/cmp/chronic-myofascial-pain.php

Ask your doctor for a referral to physical therapists who are advanced trained to treat myofascial trigger points with various hands on treatments. Do your homework and check your area, doing a phone interview with the physical therapy group. Generally, sports physical therapy is your best bet.

Healing, Harmony and Hope, Celeste

This blog is based on my original answer at ShareCare, What qualifies a neurologist to treat fibromyalgia? View my other answered questions as fibromyalgia expert for Dr Oz.

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. http://www.thesethree.com