I have received a reply from the National Institute of Health NIAMS to my original letter of
October 26, 2010 regarding inclusion of the assessment of myofascial trigger points and restless leg syndrome in the proposed diagnostic criteria for fibromyalgia. My original letter can be
here.
I thought you would be interested in what they had to say, and what I have to say in my reply to Mr. Clark, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), Public Liason.
Mr. Clark’s letter is following my reply. Harmony and Hope, Celeste
December 8, 2010
Dear Mr. Clark
Thank you for your response.
While I understand the role of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), I believe it is important that the researchers you support have a concise tool and method for understanding the diagnosis of fibromyalgia (FM). The tender point model evolved as a diagnostic tool, but was developed to screen FM research participants. The diagnostics for fibromyalgia should not be separated from the research. When investigators do not have a consistent diagnosis method, the science becomes seriously compromised. Therefore, the proposed diagnostic criteria for FM are important to research funded and supported by the NIAMS, National Institute of Health (NIH) and any other entity interested in investigating the causes and treatments for FM.
We look forward to further research on the relationship of peripheral pain generation by MTrPs and wind-up in the FM brain. As I stated previously, the literature shows us not all people with MTrPs have centralization. We need to understand why this phenomenon occurs in FM, as well as, phenomena such as RLS, which we now know is ten times more likely to occur in FM. Restless leg syndrome could explain, at least in part, dysfunctional sleep (1), but understanding the orchestration of the brain in any disease process is complicated. Since learning more about these two occurrences, ignoring the importance of a physical exam in diagnosing FM will lead us, the patient, researchers and clinicians, down another twenty years of unsuccessful outcome. As Dr. Bennett has said, it is like “throwing the baby out with the bathwater.” (2) Restless leg syndrome could also have a myofascial component with centralization, but how would we know without a physical assessment by someone educated to do so?
Dr. Siddhartha Sikdar’s research on ultrasound imaging sounds exciting, but unless the diagnostic criterion for fibromyalgia includes assessment of myofascial trigger points (MTrPs), it is meaningless to at least a subgroup and possibly all fibromyalgia patients. (3) I assume his research is ongoing, as I was not able to find an abstract on
Pub Med and I was unable to navigate the link provided, but I am interested in reviewing this research. To be able to document MTrPs with ultrasonography is a step in the right direction, resulting in better treatment. As it stands now, few are willing to do TrP injections on myofascial trigger points in the scalenes because of their proximity to major vasculature and the lung apex. This leaves us untreated or undertreated. As you know the MTrPs in the scalenes (along with other muscles of the head and neck) perpetuate migraine headaches (4), a frequent co-morbid condition in FM.
As a past nurse educator who wrote continuing education programs for the Missouri State Board of Nursing, I am happy to see the NIH has developed a tool, PROMIS, for measuring outcomes. (Please take this as constructive, as that is how it is intended, there is a typo regarding the anti-diarrheal for treatment of IBS. It should read Lomotil.) The NIH site has useful information, but does not reflect the new research (citation in my original letter on the prevalence of MTrPs in FM). Weight bearing exercises can active latent TrPs. Some patients, me included, cannot aggressively increase exercise without a horrible outcome. (I was once a downhill skier, water skier, racquetball instructor, hiker, competitive roller skater, and league golfer, I WANT to exercise, and I am certainly not alone). When a patient is told to kick it up a notch and their pain is increased significantly (in many cases activating numerous MTrPs in multiple muscles, in multiple layers), causing greater dysfunction, they will avoid it all together, this is NOT what we want. Patients need an exercise that is right for them, so they will be compliant. I am glad to see that changing daily behaviors to incorporate incidental movement is considered, however, recognition of and understanding of MTrPs and exercise is paramount in treating the FM patient.
The HPA axis is dysfunctional in FM, and therefore makes it difficult to diagnose conditions such as Hashimoto’s, hypothyroid or thyroid resistance which rely on a normal orchestration between the pituitary and thyroid. Metabolic disturbances can cause mental fog, lethargy, weight gain, and may exacerbate MTrPs and make them harder to treat. (5) Yes, many things must be considered. All of this is discussed in our book with appropriate references. I would be happy to have my publisher, Healing Arts Press, send you a copy for review.
The drugs you suggest were not developed for FM specifically. They are drugs that have been tweaked or remarketed by pharmaceutical companies with little effort on research. They are helpful for a few, but not all, and we need more square one research on medications and assessment of those currently being used. I understand the need for a benchmark, but I want to see the research move forward. Classes of medications approved for FM (keep in mind that these medications were prescribed off label for years, without the benefit of a formal study and protection for the study participants), have the potential to interact with medications used to treat the co-morbid conditions. Frequently these medications are given in samples and are not logged at a patient’s pharmacy. As a nurse, this is of great concern.
The primer for FM research should include an extensive literature and research review. Let’s support research into the cause of development of MTrPs in fibromyalgia, their relationship to each other, centralization, co-morbid conditions such as periodic limb movement, restless leg syndrome, disrupted sleep cycles, irritable bladder syndrome, irritable bladder, bruxism, temporomandibular dysfunction, dysmenorrhea, impotence (yes, men should be included in all FM studies, this is NOT a disorder specific to women), et al.
Physical, mental, emotional and spiritual balance is necessary for coping with chronic pain and fatigue; however, fibromyalgia is NOT a somatoform disorder, and we are not at any greater risk than any other chronic disease patient. Meditation, deep breathing, T’ai Chi, stretching, (all methods that we highly support and suggest in our book), and medications will promote muscle relaxation, however the ONLY treatment for MTrPs presently known is direct manipulation. Pain perception and development of healthy coping strategies are paramount in wellness for ALL people. Let’s use the research money effectively.
I am excited to see the research going on at NIAMS, especially the TMS, (which I would like to know more about) but one day I hope to open the link on FM at the NIAMS website and see assessment of myofascial trigger points, and therapies to treat them, and a suggestion that all FM patients have sleep studies.
Thank you for your time, your consideration and your efforts at educating, “improving patient outcome, one step at a time.”
Sincerely,
Celeste Cooper, RN author
(1) Viola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study"
J Clin Sleep Med 2010; 6: 423-427
(2) “Drs Bennett & Clauw Debate Abandonment of Tender Point Test in Revised FM Diagnostic Criteria.”
FM Aware, Fall issue.
(3) Rehabilitation Medicine Department, National Institutes of Health Clinical Center, Bethesda,MD. Project: Imaging Myofascial Trigger Points, 2008-present. Collaborators: Jay Shah MD. accessed December 5, 2010).
(4)
Myofascial Pain and Dysfunction: The Trigger Point Manual by David Simons, Janet Travell, and Lois Simons, 2nd ed. Philadelphia: Lippincott Williams and Wilkins, 1999. Vol 1, pg 241.
(5) Starlanyl and Copeland,
Fibromyalgia & Chronic Myofascial Pain Syndrome: A
Survival Manual, 44.
CC:
The American College of Rheumatology, % Amy Miller
Robert Bennett, MD, FRCP (University of Oregon)
Brad Ellis, Liaison, The American Pain Foundation
Shari Ferbert, Advocates for Fibromyalgia Funding, Treatment, Education, & Research
Alan Alan Gurwitt, President Massachusetts CFMDS/ME & FM
Jeff Miller, PhD, author
Rocky Mountain CFS/ME & FM Association Attn: Tim
Marly Silverman, Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc
Devin Starlanyl, author, researcher
Kristin Thorson, American Fibromyalgia Syndrome Assoc
Dear Ms. Cooper:
Your email inquiry was forwarded to the Office of Communications and Public Liaison of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) for a response. The NIAMS, a part of the U.S. Department of Health and Human Services’ National Institutes of Health (NIH), supports medical research into the causes, treatment, and prevention of diseases of the bones, joints, muscles, and skin.
Thank you for copying the NIAMS in your letter and sharing with the Institute your concern about the proposed diagnostic criteria for fibromyalgia. Please note that the NIAMS is not an author or sponsor of these diagnostic guidelines, as that is not within our mission. Our mission is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases. It is not the intention of the NIAMS to provide clinical diagnoses or recommend any particular treatment or service, but rather to provide information to better understand health conditions that are encompassed by the Institute.
The NIAMS sponsors research that will improve scientists’ understanding of the specific problems that cause or accompany fibromyalgia, in turn helping them develop better ways to diagnose, treat, and prevent this syndrome. This research covers a broad spectrum, ranging from basic laboratory research to studies of medications and interventions designed to encourage behaviors that reduce pain and change behaviors that worsen or perpetuate pain.
You may be interested in a study in myofascial trigger points (MTrPs) currently being funded by the NIAMS. The principal investigator is Dr. Siddhartha Sikdar at George Mason University. This research group has developed new ultrasound imaging methods to visualize and characterize the physiology and physical properties of the MTrPs and their surrounding soft tissue. Their research goal is to use this technology, along with other innovative approaches, to achieve a more comprehensive understanding of the abnormalities associated with MTrPs. If you would like to learn about other research that the NIAMS and the NIH are supporting, you can access the NIH RePORTER database at: http://projectreporter.nih.gov/reporter.cfm.
Another NIH project that may be of interest you is the Patient-Reported Outcomes Measurement Information System (PROMIS), an initiative that is researching and developing new ways to measure patient-reported outcomes (PROs), such as pain, fatigue, physical functioning, emotional distress, and social role participation that have a major impact on quality-of-life across a variety of chronic diseases. The goal of this initiative is to improve the reporting and quantification of changes in PROs. The NIAMS supports an effort to develop PROMIS specifically for use in patients with fibromyalgia. You can read more about how researchers are learning about fibromyalgia in our booklet, “Questions and Answers About Fibromyalgia,” which can be viewed online at http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp.
The NIAMS Information Clearinghouse serves the community by producing and distributing health information brochures free to the public and referring requestors to outside voluntary and professional organizations. For more information please visit the following link on our Web site at http://www.niams.nih.gov/About_Us/Mission_and_Purpose/Community_Outreach/default.asp. Our online catalog of free publications can be found at http://catalog.niams.nih.gov/; these materials are updated regularly to keep current with the latest research.
I hope this information is helpful.
Respectfully,
Richard W. Clark
NIAMS Office of Communications and Public Liaison
31 Center Drive, MSC 2350
Building 31, Room 4C02
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