Wednesday, October 20, 2010

Proposed FM Criteria Letter - NIH (NAIMS), ACR and Arthritis Care and Research

October 20, 2010

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

American College of Rheumatology
% Amy Miller

Arthritis Care and Research
Editor, Patricia P. Katz, PhD
Editor Edward H. Yelin, PhD

RE: Proposed Criteria for Diagnosing Fibromyalgia

Dear Ladies and Gentlemen,

As a past RN educator, author on the subject and patient with fibromyalgia (FM), and chronic myofascial pain (CMP) otherwise known as MPS, I am concerned that the proposed diagnostic criteria is not complete. Omitting the presence of myofascial trigger points (MTrPs) could cause another decade of misdiagnosis or under diagnosis of FM. Why are we not considering this subjective and objective assessment in screening for FM?

I am well educated, once a high achiever. Then, familiar locations of stat meds., became lost to me. I have found myself in an unfamiliar parking lot in route to my regular doctor. There aren’t any predictors for this behavior, which is frustrating. I know firsthand the effects of migraine, Raynaud’s, IBS, irritable bladder, poor healing, insomnia due to RLS and pain, sleep inefficiency and PLM and the peripheral input of myofascial TrPs on the centralization of FM, and I want my physician to understand this too.

Dr. I Jon Russell, MD, PhD, tells me that MPS (CMP) is not the same as FM, and I agree, but neither are irritable bowel syndrome, Raynaud’s, headache, irritable bladder, etc, which are considered in the new criteria. Myofascial pain and dysfunction is the first complaint in FM, and should be considered specifically in the proposed diagnostic criteria.

Dr. Robert Bennett, M.D., FRCP has also written to me.

“There have been several important recent advances in the scientific study of myofascial trigger points; in particular their biochemical mileu, electrophysiological properties, magnetic resonance elastography (MRE), activation of pain related brain regions and role in initiating central sensitization. Most importantly there is one study confirming my long held clinical impression that most FM tender points are in fact typical myofascial trigger points.”

Dr. Bennett’s astute observations come as no surprise to me. Research suggests that the tender point model has outlived its purpose, however a hands on exam is more important now than ever. When I speak to FM groups, I find while they have tender points they are not all specific to the model, and they report MTrPs. One need not have the knotted up piece of muscle fiber in a taut band of muscle directly at the area of pain or paresthesias, because MTrPs have specific pain referral patterns. Someone well trained in Travell and Simons would know to trace back from the referral area to the primary MTrP. This might explain why MTrPs were missed when the tender point model was erected.

Why is this information important to central sensitization? Peripheral pain does change our brain. Science shows the loss of the normal orchestration of bio and neuro chemicals in FM. Meditation and deep breathing, T'ai Chi, etc. help calm the brain, but only direct manipulation, either manual or needle, will affect MTrPs. Unlike MTrPs in the acute injury patient, they are resistant to treatment in FM and can be activated by non-traumatic events. I feel, ignoring MPS (CMP), could cause a kaleidoscope of other central and autonomic effects.

If patients, physical therapists, pain management physicians, physiatrists, chiropractors, and body workers understand how to locate and treat MTrPs, shouldn’t we expect our specialists to assess and make appropriate referrals?

I was told my sleep study was normal even though I moved my legs 187 times and never once reached stage III or IV in four hours. Should we expect a sleep study on all FM patients, and most importantly, the ability of the clinician to interpret results?

I am not suggesting identification of MPS, will answer all the questions; centralization lends to pain from a light touch and other sensitivities. But, we must not let any stone go unturned or lead the clinician and patient down a rough road of confusion and frustration. Researchers need to understand what MTrPs are and how they relate to the FM patient as a peripheral pain mediator to a central sensitization disorder and the relevance disordered sleep, RLS and its cohort PLM.

The new criteria are refreshing, but it is not complete, nor is education for the physician who is expected to use it as a tool. What happens after diagnosis? Will there be continuing education (CEU’s) as part of using and interpreting the needs associated with this tool?

Can we count on your consideration of MPS (CMP), in the proposed criteria and education for physicians on what appropriate referrals are indicated for the many comorbid conditions?

Thank you for your time, your consideration, and your dedication to the fibromyalgia patient.

Sincerely, Celeste Cooper, RN, author
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection
PS Amy Miller
Amy, may I ask that you forward this letter Dr. Frederick Wolfe, Dr. Daniel J Clauw, Dr. Mary-Ann Fitzcharles, Dr. Don L Goldenberg, Dr. Robert Stephen Katz, Phillip Mease, Dr. Antony S Russell, John B. Winfield, and Dr. Muhammad Yunus. Dr. I Jon Russell, the other contributor to the new criteria will get a copy of this letter. Thank You.

Advocates for Fibromyalgia Funding, Treatment, Education, and Research
The American Nurses Association, Editor
American Academy of Pain Management
American Academy of Pain Medicine
Robert Bennett,MD, FRCP (University of Oregon
Fibromyalgia Coalition International
Fibromyalgia Network
Stevenson Fisher, Harvard Nurses Health Study
Robert Gerwin,MD, FAAN
Charles Lapp, MD
Connie Luedtke, RN, Mayo Clinic
Myopain Society
National Center for Complementary and Alternative Medicine
National Institutes of Health
National Fibromyalgia Association
National Fibromyalgia Research Association
Carolyn Nuth, The American Pain Foundation
National Fibromyalgia Partnership, Inc.
Elisabeth Quint, MD (Please forward to Dr. Daniel Clauw)
Karen Richards, Co-founder NFA, Chronic Pain Expert, Health Central
I Jon Russell,MD, PhD
Marly Silverman, P.A.N.D.O.R.A.
Devin Starlanyl, author, researcher
Roland Staud, MD, University of Florida, Gainsville,
Kimberly Waterman, Director of Media Relations Rush University Medical Center,


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