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)
NIAMSinfo@mail.nih.gov

American College of Rheumatology
% Amy Miller amiller@rheumatology.org

Arthritis Care and Research
Editor, Patricia P. Katz, PhD
Editor Edward H. Yelin, PhD bwong@itsa.ucsf.edu

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
www.TheseThree.com
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.

Cc:
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, staudr@ufl.edu
Kimberly Waterman, Director of Media Relations Rush University Medical Center,

Resources:

Basford JR, An KN. New techniques for the quantification of fibromyalgia and myofascial pain. Basford JR, An KN. Curr Pain Headache Rep. 2009 Oct;13(5):376-8.

Bennett, Robert, MD. Personal Correspondence, September 27, 2010

Calis M, Gokce C, Ates F, Ulker S, Izgi H. B, Demir H, Kirnap M, Sofuoglu S, Durak A. C, Tutus A, and Kelestimur F. “Investigation of the hypothalamo- pituitary-adrenal axis (HPA) by 1 microg ACTH test and metyrapone test in patients with primary fibromyalgia syndrome,” Journal of Endocrinology Investment 27, no. 1 (2004): 42–46.

Demitrack MA, Crofford LJ. Evidence for and pathophysiologic implications of hypothalamic-pituitary-adrenal axis dysregulation in fibromyalgia and chronic fatigue syndrome. Ann N Y Acad Sci (1998 May 1) 840:684-97

Fibromyalgia Network. The New Preliminary Diagnostic Criteria for FM Survery. http://www.surveymonkey.com/s/HXZYTBM
Ge HY. Curr Pain Headache Rep. Prevalence of myofascial trigger points in fibromyalgia: the overlap of two common problems. Curr Pain Headache Rep. 2010 Oct;14(5):339-45.

Ge HY, Nie H, Madeleine P, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. Contribution of the local and referred pain from active myofascial trigger points in fibromyalgia syndrome. Pain. 2009 Dec 15;147(1-3):233-40. Epub 2009 Oct 9.

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. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

Hong CZ. Treatment of myofascial pain syndrome. Curr Pain Headache Rep. 2006 Oct;10(5):345-9.

Hubbard JE. . Myofascial trigger points. What physicians should know about these neurological imitators. Minn Med. 2010 May;93(5):42-5.

Jones KD, Deodhar P, Lorentzen A, Bennett RM, Deodhar AA. Growth hormone perturbations in fibromyalgia: a review. Semin Arthritis Rheum. 2007 Jun;36(6):357-79.

Kuan TS, Hong CZ, Chen JT, Chen SM, Chien CH. The spinal cord connections of the myofascial trigger spots. Eur J Pain. 2007 Aug;11(6):624-34. Epub 2006 Dec 14

Liptan, GL. Fascia: A missing link in our understanding of the pathology of fibromyalgia. J Bodyw Mov Ther, 2010 Jan;14(1):3-12.

Martinez-Lavin M, Solano C. Dorsal root ganglia, sodium channels, and fibromyalgia sympathetic pain. Med Hypotheses. 2009 Jan;72(1):64-6.

Moldofsky H, Inhaber NH, Guinta DR, Alvarez-Horine SB. Effects of sodium oxybate on sleep physiology and sleep/wake-related symptoms in patients with fibromyalgia syndrome: a double-blind, randomized, placebo-controlled study. J Rheumatol. 2010 Oct;37(10):2156-66.

Mountz JM, Bradley LA, Alarcon GS. Abnormal functional activity of the central nervous system in fibromyalgia syndrome. Am J Med Sci (1998 Jun) 315(6):385-96

Niddam DM, Chan RC, Lee SH, Yeh TC, Hsieh JC. Central representation of hyperalgesia from myofascial trigger point. Neuroimage. 2008 Feb 1;39(3):1299-306. Epub 2007 Oct 11.

Niddam DM. Brain manifestation and modulation of pain from myofascial trigger points. Curr Pain Headache Rep. 2009 Oct;13(5):370-5.

Russell, I John, MD. Personal Correspondence, September 27, 2010

Schmidt-Wilcke T. Variations in brain volume and regional morphology associated with chronic pain. Curr Rheumatol Rep. 2008 Dec;10(6):467-74.

Starlanyl, DJ, and Copeland, ME, Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual Oakland, Calif.: New Harbinger Publications, Inc., 2001.

Staud, R, Nagel S, Robinson ME, Price DD. Enhanced central pain processing of fibromyalgia patients is maintained by muscle afferent input: a randomized, double-blind, placebo-controlled study. Pain 2009, Sep;145(1-2):96-104.

Travell, JG and Simons, DG, Myofascial Pain and Dysfunction: The Trigger Point Manual, Vol. 2, 2nd ed. (Baltimore: Lippincott, Williams and Wilkins, 1992),

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.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600-10.

Wolfe F, Simons DG, Fricton J, Bennett RM, Goldenberg DL, Gerwin R, Hathaway D, McCain GA, Russell IJ, Sanders HO, et al. The fibromyalgia and myofascial pain syndromes: a preliminary study of tender points and trigger points in persons with fibromyalgia, myofascial pain syndrome and no disease. J Rheumatol. 1992 Jun;19(6):944-51.

Tuesday, October 12, 2010

Foot Problems-Resources and Treatment

Both the foot and ankle are comprised of a complex array of bones, tendons, joints, muscles, soft tissues, ligaments, nerves, blood and lymph vessels, and skin. Any of these tissues may be damaged or affected by disease, resulting in foot and/or ankle problems such as plantar fasciitis, tarsal tunnel syndrome, and myofascial trigger points.

Many FM patients, me included, complain of burning, neuropathic like pain. This certainly could be due excessive sensitivity related to the centralization of FM, but it feedback to the brain from myofascial trigger points (TrPs) in the calf muscles can cause similar symptoms. So before you assume that you have to “learn to live” with these symptoms, be sure you check out possible trigger points.

Many perpetuating factors of foot problems can be changed; but some, such as blood sugar problems and neurotransmitter imbalances, and structural deformities such as hammertoes or having one leg shorter than the other cannot, but they can be controlled. Manage metabolic problems and lessen the stress put on skeletal deformities by using orthotics. Not addressing structural deformities can cause a myriad of other problems, such as undue stress on the spinal column, knees, and hips.

If conventional treatments for plantar fasciitis and tarsal tunnel syndrome fail, be sure to check for myofasical TrPs. Trigger points in muscles that refer pain or other symptoms, such as numbness and tingling, to the foot may include: tibialis anterior, extensor digitorum longus, extensor hallucis longus, peroneus longus, peroneus brevis, peroneus tertius, gastrocnemius, soleus, tibialis posterior, flexor digitorum longus, flexor hallucis longus, extensor digitorum brevis, interosseous, abductor hallucis, adductor digiti minimi, flexor digitorum brevis, quadratus plantae, adductor hallucis, flexor hallucis brevis, and flexor digiti minimi brevis.

Here is a great diagram of leg and foot muscles http://www.foottrainer.com/foot/

Plantar Fasciitis

Plantar Fasciitis is inflammation of the thick, fibrous band of tissue that extends from the heel of the foot to the toes, supporting the muscles of the bottom of the foot and helping the foot to function properly and is usually due to injury of the plantar (sole) fascia (connective tissue).

http://www.plantar-fasciitis.org/

Tarsal Tunnel Syndrome

Tarsal tunnel syndrome results from compression of the posterior tibial or plantar nerves in the tarsal (foot bone) tunnel, which provides passage for the nerves, tendons, and vessels that supply the foot. Symptoms are pain, numbness, and tingling on the bottom of the foot and can also be caused or aggravated by untreated myofascial trigger points, especially in the FM patient.

http://www.ehow.com/about_5052138_tarsal-tunnel-syndrome-treatment.html

Manuals for self-care manual for lay readers.

The Trigger Point Therapy Workbook, 2nd ed. by Clair Davies. Oakland, Calif: New Harbinger Publications, 2004

Trigger Point Self-Care Manual: For Pain-Free Movement by Donna Finando, L.Ac., L.M.T. Rochester, Vt.: Healing Arts Press, 2005.

Harmony and Hope, Celeste

Saturday, October 9, 2010

Xyrem advocacy for sleep deficiency - The FDA reply

Xyrem may help sleep deficiency in FM and CFS. Now it is about getting the FDA to approve it. Here is their response just received in my email.

The mission of FDA's Center for Drug Evaluation and Research is to ensure that drugs marketed in this country are safe and effective.

FDA recognizes fibromyalgia to be a devastating disease and we empathize with the sufferers of this disease.

As part of this review process FDA held an Advisory Committee meeting on August 20, 2010, to discuss the new drug application (NDA) 22-531 for Sodium Oxybate, and the safety and efficacy findings in the fibromyalgia population. The Advisory Committee provided FDA with independent opinions and recommendations which were advisory in nature and not binding.

We realize that Fibromyalgia is a devastating and debilitating disease with limited treatment options. FDA takes seriously its obligation to carefully weigh all the scientific data and research, including evaluating the risks and benefits for patients, when deciding whether a product should be labeled for a particular use. No final decision has been made regarding the approval for marketing of this product.

We encourage you to visit the FDA Advisory Committee web site for a transcript of the meeting and additional meeting material at: http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/ArthritisDrugsAdvisoryCommittee/ucm203434.htm

~ • ~ • ~ • ~ • ~ • ~
Update as of April 2015

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate
New Website
Celeste’s Website: http://CelesteCooper.com


Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Tuesday, October 5, 2010

Costochondritis vs. Myofascial Trigger Points

Symptoms or costochondritis are often confused with myofascial trigger points.

The purpose of the ribs is to protect the organs inside the chest from damage or trauma. Because of the lungs being one of those, it is important that the muscles between the ribs, intercostal muscles, work in tandem with the act of breathing. When there is pain, there is guarding, when there are myofascial trigger points, there is restriction of movement. It is important that the lungs are able to fill with air as oxygen is food for our cells.

Costochondritis is an inflammatory condition. Please see Dr. Bennett’s article on newly diagnosed FM. He talks about the myofascial trigger points that were once thought to be tender points, and still are by some, though this needs a clearer definition. These myofascial trigger points frequently occur in the muscles between the ribs or in muscles that refer pain to the muscles between the ribs (intercostal muscles). Presence of myofascial trigger points can mimic costochondritis. That is why the treatments for inflammation don't help other than their analgesic properties for the pain. The only thing that will help significantly is treating the trigger points.

People with chronic fatigue syndrome are usually made worse with activity. It is quite possible that the chest pain we experience could also be attributed to the development of myofascial trigger points.

It is important to keep the muscles between the ribs moving appropriately. After treating the trigger points be sure to do exercises, such as deep breathing to stretch the intercostal muscles (the muscles that hold the ribs together) and certain yoga poses. The child’s pose with breathing will help stretch those muscles between the ribs on your back, and don't forget the ribs on your sides, you can get a stretch here by bending to your right and take your left arm up over your head as you gently bend, then repeat on the other side. There are many stretches provided in the book.

Take a look:

My blog:

Defining Myofascial Trigger Points.
http://fmcfstriggerpoints.blogspot.com/2010/09/defining-myofascial-trigger-points.html

Chest Wall Pain, Esophageal Spasm, and GERD
http://fmcfstriggerpoints.blogspot.com/2010/05/chest-wall-pain-esophageal-spasm-and.html

The NFA article for new FM patients written by Dr. Robert Bennett
http://www.fmaware.org/site/PageServer?pagename=fibromyalgia_overview

My website: www.TheseThree.com

Harmony and Hope, Celeste

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