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.
Wednesday, October 20, 2010
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
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
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
New Website
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
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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:
Defining Myofascial Trigger Points.
Chest Wall Pain, Esophageal Spasm, and GERD
Think adversity?-See opportunity!
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:
Defining Myofascial Trigger Points.
Chest Wall Pain, Esophageal Spasm, and GERD
(Signature line appended, March 2018)
In healing,
Celeste Cooper, RN / Author, Freelancer, Advocate
Think adversity?-See opportunity!
~ • ~ • ~ • ~ • ~ • ~
Learn more about
Celeste’s books here. Subscribe
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All blogs and comments are based on the author's opinions and are
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Saturday, September 25, 2010
Lymphatic Massage
The lymph system collects and cleans up cellular garbage, which is then returned to circulation as plasma. Lymph fluid movement requires exercise, deep breathing, body movement, and properly functioning organ activity. If movement is disrupted, excessive lymph accumulates in the lymph system and causes swelling. Lymphatic Massage/Drainage opens lymphatic ducts aids in reducing generalized swelling.
Book Excerpt ©
There are three types of swelling. Diffuse swelling occurs with interstitial edema, localized swelling takes place around a lymph node from chronic infection, and there is swelling from myofascial entrapment of lymph and blood vessels.
… Idiopathic edema, a form of fluid retention found in FM, occurs more frequently in women. Interstitial edema is caused by abnormal biochemicals that cause fluid to be retained in the spaces between tissues. These spaces, called interstitial spaces, are part of the ground substance in the myofascia. … You haveto figure out why the edema is building up in the interstitial spaces, and remedy that perpetuating factor. “Treating the cause is the best way to treat the effect.”
The second type of swelling is that caused by obstructed lymph flow. Swelling that occurs around a lymph node is the result of accumulated dead cellular matter and bacteria in the node as a response to chronic infection. Lymph nodes act like filters. The filter—the lymph node—can get stopped up from excessive accumulation of unwanted organisms, like a shower drain clogs with hair. When this happens, the lymph fluid backs up in the lymph vessels causing localized swelling. People with FM, CFID, and CMP can have this kind of swelling; however, it is more commonly seen in CFID patients.
… The third kind of swelling is that seen in CMP patients. This is swelling caused by blood or lymph vessel entrapment by taut bands of muscle fiber, as discussed in chapter 1. Trigger points (TrPs) that occur near lymph nodes may be mistaken for swollen nodes when they are actually TrPs. Lymph fluid, unlike blood, which is moved along by specific vessel mechanics, requires modalities such as exercise, deep breathing, body movement, and properly functioning organ activity to keep it moving. When any of these are disrupted, excessive lymph accumulates in the lymph system and
causes swelling. [In this case, the trigger points must be treated to release the flow of lymph].
I hope you have found this helpful in understanding swelling/edema.
~ • ~ • ~ • ~ • ~ • ~
All
answers and blogs are based on the author's opinions and writing and are not
meant to replace medical advice.
Celeste
Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the
Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series
(coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia,
Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection
(coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at
Sharecare.com, here, and she advocates for all chronic
pain patients as a participant in the Pain Action Alliance to Implement a
National Strategy, here.
You can read more educational information and about her books on her website, http://TheseThree.com
Friday, September 24, 2010
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
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
Tuesday, September 14, 2010
My Life in the Fibro Lane - For Fibromyalgia Network News
Fibromyalgia Network News, “My Life in the Fibro Lane,” Submit yours at groups@fmnetnews.com
My Life in the Fibro Lane
Though the scenario may be different, my story is typical. In the mid 80’s an ICU patient, through no fault of his own (unaware of his intentions), grabbed my hair and tossed me about like a rag doll, quite literally. That was the beginning, only escalated by other physical trauma. I have also had torn rotator cuffs of each shoulder and one complete reconstruction as a result of my work as an emergency nurse. Anatomically, some of the muscles that support the shoulders also support the neck (cervical spine) and these injuries exacerbate my coexisting spinal problems and migraine headaches. These are the stage props of my not so loving affair with fibromyalgia.
I have been diagnosed with three disorders; fibromyalgia, chronic fatigue syndrome and chronic myofascial pain (CMP) from myofascial trigger points. As more recent research suggests and as I have suspected from years of research and writing all FM patients have myofasical trigger points (TrPs). In many cases a tragedy has occurred, they have gone undetected. It is unfortunate that clinicians do not recognize the presence of TrPs, since they can be a great aggravator of our fibromyalgia pain, and they can be objectively measured and treated. Another story for another day, and yes, I am an advocate for change.
Since this is my story on FM, I will make the gory details of chronic fatigue syndrome (CFS) short. Some think the two are interchangeable, but after researching, I do not believe that FM and CFS are the same. I personally have suspicions that my chronic fatigue is related to the Hashimoto’s Thyroiditis that went undetected for a long period of time, though I do not heal well and have many of the other symptoms of CFS. A test, I hope with the discovery and connection of XMRV to CFS, will finally lay this question to rest for myself and many others in my position.
I haven't worked since 2000. I didn't know what was wrong with me when I finally handed in the towel, I only knew that my brain was slipping away, the pain was unbearable and interfering with my ability to critically think. Sleep deprivation and non-restorative sleep was reaching a point of constant worry and anxiety that I might inadvertently harm a patient. This cognitive deficit was eventually confirmed by neuropsychological testing and evaluation by a forensic psychologist. So here I was, at what should have been the height of my career, alone and afraid to do the work I sacrificed and trained to do, care for others. Confused as to what was happening, after all, my training was as a hospital nurse and educator (I had zilch experience with any rheumatic condition), and persistence, I was finally diagnosed (over a year after I quit work). And found I fit the mold to a T. Five years earlier I had cut my hours back to part time in an effort to cope with the pain and fatigue. Five years, the average time from symptoms to diagnosis, though I suspect many of us would admit the symptoms quite possibly went unnoticed for a lifetime. I was now forced to care for myself. A feeble attempt at best, by both my healthcare providers and myself, I was totally ignorant. A new mission presented itself.
Through it all, and psychotherapy with a psychologist that specializes in treating patients with chronic pain, I learned that I had something to contribute and have been able to maintain forward momentum since. I have written a book on my three disorders as a way of personal coping and reaching out to help others (I had always told my students, if you really want to learn something, teach it, little did I know at the time how much more that would mean to me).
That is what I wish for everyone on this path with me, find an outlet, find YOUR contribution, we all have it in us. It was never easy, it still isn’t, but understanding and appreciating that there is more to being alive and well than physical being, that we all have something unique to share, is inspirational to me. The trials and triumphs of others are what keep me up on my down days.
I have followed my own advice on finding constructive ways of coping, and have fallen in love with writing poetry. Following is a poem that pretty much sums up the past two decades of my life. So I leave you with this:
MY CAP OF MANY USES
A woman struggling to style her thin hair,
Why should I grieve what was once there?
Fingers of condition apologize for that,
So, I strive to coordinate my life with a cap.
Success bloomed many caps in my time
Lately, they are scented by a different kind.
Words dot my life, push, strive and hope,
Corrupted by illness, change, endure, cope.
But fear not my friend though my cap is askew,
This woman is learning, bring meaning anew.
These fingers have taught me about myself,
My caps are as peacemaker, caretaker, health.
So I leave you with this, my caps they were sent,
A schoolhouse of words, pure, sturdy and meant.
As I fondle this wisp of thin hair that remains,
My caps, though different, they stay the same.
Written by Celeste Cooper, author
Integrative Therapies for Fibromyalgia, Chronic Fatigue syndrome, and Myofascial Pain: The Mind-Body Connection (co-author Jeff Miller, PhD) Healing Arts Press, Imprint of Inner Traditions, Bear and Company
My Life in the Fibro Lane
Though the scenario may be different, my story is typical. In the mid 80’s an ICU patient, through no fault of his own (unaware of his intentions), grabbed my hair and tossed me about like a rag doll, quite literally. That was the beginning, only escalated by other physical trauma. I have also had torn rotator cuffs of each shoulder and one complete reconstruction as a result of my work as an emergency nurse. Anatomically, some of the muscles that support the shoulders also support the neck (cervical spine) and these injuries exacerbate my coexisting spinal problems and migraine headaches. These are the stage props of my not so loving affair with fibromyalgia.
I have been diagnosed with three disorders; fibromyalgia, chronic fatigue syndrome and chronic myofascial pain (CMP) from myofascial trigger points. As more recent research suggests and as I have suspected from years of research and writing all FM patients have myofasical trigger points (TrPs). In many cases a tragedy has occurred, they have gone undetected. It is unfortunate that clinicians do not recognize the presence of TrPs, since they can be a great aggravator of our fibromyalgia pain, and they can be objectively measured and treated. Another story for another day, and yes, I am an advocate for change.
Since this is my story on FM, I will make the gory details of chronic fatigue syndrome (CFS) short. Some think the two are interchangeable, but after researching, I do not believe that FM and CFS are the same. I personally have suspicions that my chronic fatigue is related to the Hashimoto’s Thyroiditis that went undetected for a long period of time, though I do not heal well and have many of the other symptoms of CFS. A test, I hope with the discovery and connection of XMRV to CFS, will finally lay this question to rest for myself and many others in my position.
I haven't worked since 2000. I didn't know what was wrong with me when I finally handed in the towel, I only knew that my brain was slipping away, the pain was unbearable and interfering with my ability to critically think. Sleep deprivation and non-restorative sleep was reaching a point of constant worry and anxiety that I might inadvertently harm a patient. This cognitive deficit was eventually confirmed by neuropsychological testing and evaluation by a forensic psychologist. So here I was, at what should have been the height of my career, alone and afraid to do the work I sacrificed and trained to do, care for others. Confused as to what was happening, after all, my training was as a hospital nurse and educator (I had zilch experience with any rheumatic condition), and persistence, I was finally diagnosed (over a year after I quit work). And found I fit the mold to a T. Five years earlier I had cut my hours back to part time in an effort to cope with the pain and fatigue. Five years, the average time from symptoms to diagnosis, though I suspect many of us would admit the symptoms quite possibly went unnoticed for a lifetime. I was now forced to care for myself. A feeble attempt at best, by both my healthcare providers and myself, I was totally ignorant. A new mission presented itself.
Through it all, and psychotherapy with a psychologist that specializes in treating patients with chronic pain, I learned that I had something to contribute and have been able to maintain forward momentum since. I have written a book on my three disorders as a way of personal coping and reaching out to help others (I had always told my students, if you really want to learn something, teach it, little did I know at the time how much more that would mean to me).
That is what I wish for everyone on this path with me, find an outlet, find YOUR contribution, we all have it in us. It was never easy, it still isn’t, but understanding and appreciating that there is more to being alive and well than physical being, that we all have something unique to share, is inspirational to me. The trials and triumphs of others are what keep me up on my down days.
I have followed my own advice on finding constructive ways of coping, and have fallen in love with writing poetry. Following is a poem that pretty much sums up the past two decades of my life. So I leave you with this:
MY CAP OF MANY USES
A woman struggling to style her thin hair,
Why should I grieve what was once there?
Fingers of condition apologize for that,
So, I strive to coordinate my life with a cap.
Success bloomed many caps in my time
Lately, they are scented by a different kind.
Words dot my life, push, strive and hope,
Corrupted by illness, change, endure, cope.
But fear not my friend though my cap is askew,
This woman is learning, bring meaning anew.
These fingers have taught me about myself,
My caps are as peacemaker, caretaker, health.
So I leave you with this, my caps they were sent,
A schoolhouse of words, pure, sturdy and meant.
As I fondle this wisp of thin hair that remains,
My caps, though different, they stay the same.
Written by Celeste Cooper, author
Integrative Therapies for Fibromyalgia, Chronic Fatigue syndrome, and Myofascial Pain: The Mind-Body Connection (co-author Jeff Miller, PhD) Healing Arts Press, Imprint of Inner Traditions, Bear and Company
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