Advocacy to the American Pain Foundation

Fellow advocates,

Thank you so much for the presentations from Dr. Gerwin and Dr. Clauw. As a patient with FM and CFS and chronic myofascial pain from myofascial trigger points, a RN and an author on the subject, I am trying to stay up with the latest information.

I would like to see the APF address the new proposed diagnostic criteria by Dr. Katz and I would like to see more information on the prevalance of myofascial trigger points in FM patients.

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 certainly know that I have chronic myofascial pain (CMP) from myofascial trigger points as does my mentor Devin Starlanyl, who was mentored by Dr. David Simons. As I move about the various Facebook groups most of the pain 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. This certainly sheds light on understanding central sensitization from peripheral nerve input seen in FM patients with myofascial trigger points.

I am so hoping that Dr. Katz criteria is NOT approved until further investigation into the prevalence of myofasical trigger points in FM is further investigated. With this information, we will have objective measureable criterion. I question why this has not been addressed. Possibly because physicians get such little training in myofascial disease, yet it is the number one reason people have dysfunction and miss work. In some cases, like me, the dysfunction has bombarded my CNS and resulted in central sensitization. So many of us with FM also have migraine headaches, some of which can be explained by myofascial trigger points, and TMD/TMJ, also attributed to myofascial trigger points, and now the newer studies suggesting the great prevalence. Why are we missing this? Shouldn't this obvious connection be made?

I look forward to hearing what the APF has to say about this most important issue to me, to my health and the health of so many others. The treatments for FM are not the same as treatment for CMP from myofascial trigger points. Successful treatments, such as specific myofascial trigger point therapy, can certainly at least bring temporary relief to the patient, but insurance will not cover such treatment, most likely because we are missing the boat. This myofascial therapy can be done without subjecting the patient to invasive techniques such as steroid, dry needling, or lidocaine trigger point therapy, which must be limited and cannot reach all the offending active, latent, secondary and attachment TrPs.

Thank you in advance for your continued dedication to unraveling chronic pain disorders.

Please feel free to explore my website where you will find a link to my blog.

Sincerely,

Celeste www.TheseThree.com
Author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection