Letter Regarding Concern over the Proposed FM Criteria

Letter sent to:
International Myopain Society
http://www.myopain.org/ContactUs.aspx

Dear Doctors Russell Gerwin, Bennett, and Fellow Advocates,

Please let me preface this letter by saying thank you for your dedication to making a difference in neuroimmune disorders such as fibromyalgia (FM).

As a patient with FM and CFS and chronic myofascial pain (CMP) from myofascial trigger points, an RN educator, and an author on the subject, I am greatly concerned that not enough attention is being given to studies such as yours and:

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L.The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated With Myofascial Trigger Points.J Pain.2009 Nov 13. [Epub ahead of print]

I clearly understand from years of reviewing the research that this is not new to you Dr. Gerwin, Dr. Russell, or Dr. Bennett. So I ask, can we continue on for another decade of by guess and by golly, or take the bull by the horns and get it right this time?

As I move about the various Facebook groups much of the pain and neuralgia described by fellow survivors can be attributed to myofascial trigger points. On investigation, after explaining proper technique for locating these knotted up pieces of muscle fiber in a taut band of muscle, people report back to me that they have them. This is significant anecdotal evidence that can be defined by the patient. Why are our clinicians and those writing the new criteria missing this?

My greatest desire is that new criteria for the diagnosis of fibromyalgia include the prevalence of myofasical trigger points. A physician trained in assessment and effective treatment will provide objective measureable criterion. Yet, I see in the proposed criteria by Dr. Katz , which I might add is right on cue with the central sensitization aspects of FM, does not include the presence of myofascial trigger points, or even suggest that the FM patient be screened for their presence.

The peripheral, nerve to muscle dysfunction of multiple TrPs in multiple layers of muscle tissue has bombarded my CNS already in perptual central sensitization. So many of us with FM also have, insomnia, disordered sleep IBS, irritable bladder, SIBO and other autonomic effects. We also have migraine headaches, some of which can be explained by myofascial trigger points, bruxism, restless leg syndrome, and TMD/TMJ, which can also be attributed at least in part to myofascial trigger points. Why are we missing this? It dumbfounds me as to why this connection is not being made.

I look forward to hearing what you have to say about this most important issue not only to me, but to the health of so many others. If we can feel one morsel of control over what is happening, we can take back some feeling of empowerment. I don’t expect that addressing myofascial trigger points is a cure for FM, but to know that we have a specific treatment for one aggravating factor to our pain is helpful.

Thank you in advance for your continued dedication to unraveling the mysteries of fibromyalgia.

Sincerely,

Celeste www.TheseThree.com (Find links to my blog, twitter, and Facebook)
Author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection