Thursday, December 16, 2010

SIBO, Yeast & Leaky Gut and YOU!

SIBO is an acronym for small intestinal bacterial overgrowth, sometimes also referred to as SBBO, small bowel bacterial overgrowth. The small bowel is about 20 feet long, connects the stomach to the colon (large bowel/intestine) and is responsible for secreting a hormone (secretin) that stimulates the pancreas to produce digestive enzymes. Digestion fulfills the bowel’s purpose, breaking down food into nutrients and eliminating waste or unwanted products

The small bowel has fewer bacteria than the large bowel, but none the less, it has bacteria that should be there. However, when these bacteria have outlived their stay/purpose, the bacteria become unfriendly, rather like fermenting.

SIBO can result from such things as a partial bowel obstruction, adhesions, bowel disease, such as diverticulosis or other anatomical malformations, slow motility either from medications or damage to the intestinal nerve endings from disease. This causes the symptoms that are often confused with irritable bowel syndrome. Certainly people with IBS can also have SIBO, and it seems may be at a higher risk, therefore, SIBO should be considered in FM and CFID (ME/CFS) patients with IBS. Failure to treat SIBO can cause long term problems.

It is diagnosed by a hydrogen breath test and other more invasive techniques and there are antibiotics specific to the GI tract, which might decrease the chance for yeast which can also overgrow in the bowel.

*The following is an excerpt from the book and is protected under copyright laws. Helpful links have been inserted into the material to provide more information.

Candidiasis © Yeast
Intestinal yeast has been linked to small bowel bacterial overgrowth (SIBO) causing excessive gas, bloating, abdominal pain, and altered bowel habits.(1)

Yeast infections can occur with FM and overgrowth may increase the symptoms of bloating, brain fog, abdominal complaints, and muscle aches associated with FM and CMP. It can also exacerbate the usual symptoms of FM and CMP.(2) It has been identified as a possible trigger to CFID, and some association has been made with chronic candidiasis syndrome.(3) Yeast infections should always be treated, but you can also exercise preventive lifestyle choices.

To help prevent vaginal yeast, avoid vaginal douching, keep the area dry, and use a blow dryer after showering. Wear 100 percent cotton underwear dried on high heat, and avoid nylon panty hose. If you are a carbo junkie, change your diet. There are other reasons for this that will be discussed later, but understand that excessive sugar and carbohydrate intake have been linked to a higher risk of developing yeast overgrowth. Insulin resistance and some medications may perpetuate yeast or leaky gut. (4)

[Leaky Gut, LGS, causes body-wide symptoms because of holes in the intestinal barrier. Due to this breakdown, the bowel does not function normally and does not filter out some harmful substances, such as bacteria, toxic waste products, food additives, infectious agents, and inflammatory substances…. with this disruption to normal bowel function, the immune system leaves the gut open to infections and yeast overgrowth, causing not only gastrointestinal symptoms like bloating, gas, diarrhea, and abdominal pain, but other feelings of ill health as well. Cooper & Miller, pg 97-98]

Antibiotic use should be avoided when possible, as antibiotics are indiscriminate and kill off our “protective” flora along with offending microorganisms. Of course, there are times when their use is needed. Just be aware that when you must take antibiotics, candidiasis may occur and need to be treated. Talk to your doctors if you are prone to yeast infection with antibiotic use, so that you can get appropriate treatment. There are specific tests to check for candidiasis-initiated responses by the body, called IgG, IgA, and IgM antibodies.(5)

(end of excerpts)

In the case of SIBO, antibiotics are necessary because of the “bacterial” Depending on the underlying factors for overgrowth, some patients will have to be on antibiotics long term,. In this case there may be rest periods between antibiotic therapies.

I personally have had good results with Xifaxan, but that doesn’t mean everyone will. It depends on the bacteria and follow up is suggested. Probiotics such as lactobacilli and bifidobacteria are suggested for all conditions. It is believed they may inhibit the development of bad bacteria and boost immunity.

If you have these symptoms, I hope you will approach your gastroenterologist (GI doctor). This condition is quite painful and when coupled with irritable bowel syndrome the pain, loss of sleep and comorbid symptoms can be overwhelming. If SIBO or Leaky Gut are at the root of your disorder, you may find treatment that minimizes your symptoms and increases your quality of life

In healing,
Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!


(1) GI Problems—Is Bacteria to Blame? Fibromyalgia Network Newsletter (July
2000): 3.

(2) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain: A Survival
, 48.

(3) R. E. Cater, 2nd, “Chronic intestinal candidiasis as a possible etiological factor in the chronic fatigue syndrome,” Medical Hypotheses 44, no. 6 (June 1995):

(4) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain: A Survival

(5) Cooper & Miller. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. 83.

Wednesday, December 8, 2010

Correspondence NIAMS (NIH)-Diagnostic Criteria for Fibromyalgia

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.”


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.

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:

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

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 Our online catalog of free publications can be found at; these materials are updated regularly to keep current with the latest research.

I hope this information is helpful.


Richard W. Clark
NIAMS Office of Communications and Public Liaison
31 Center Drive, MSC 2350
Building 31, Room 4C02

Sunday, December 5, 2010

Read the panned response from Mr. Rice, UK Department of Health.

Those of us involved in the letter writing campaign for worldwide ME/CFS received the same response. Of course, they will not admit to getting caught with their hand in the cookie jar. According to those in a better position than I, these responses are unfounded and untruthful. If you have had your finger on the pulse of XMRV, you will be outraged.

December 3, 2010

Our ref: DE00000566856

Dear Ms Cooper,

Thank you for your email of 9 November to Andrew Lansley about xenotropic murine leukaemia virus-related virus (XMRV) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). I have been asked to reply on Mr Lansley’s behalf.

Whilst the Department of Health agrees with the World Health Organization’s classification of CFS/ME as a neurological condition of unknown cause, it has many different potential causal factors, including those of a neurological, endocrinal, immunological, genetic, psychiatric and infectious nature, which have been investigated, but the diverse nature of the symptoms cannot yet be fully explained.

More research into the causative factors of CFS/ME is needed. The Medical Research Council (MRC) has recently identified and prioritised research topics where high-quality proposals should be encouraged. This exercise involved both experts in the field of CFS/ME and research leaders in aligned areas. Further information on this work can be found on the MRC website at:

Regarding the recent interest in XMRV, its possible role in the causation of CFS/ME remains a source of debate within the scientific community. A recent study in the USA reported that XMRV has been detected in a number of CFS/ME sufferers. The results of this study have not been replicated in Europe. An ongoing research programme characterising XMRV at the MRC’s National Institute for Medical Research recently investigated the basis for this finding. The study, which was funded jointly by the MRC, the Wellcome Trust and the CFS Research Foundation, failed to replicate the findings of other studies in this area and found no association between XMRV and CFS/ME.

In addition, an expert subgroup of the National Expert Panel for New and Emerging Infections (NEPNEI) met in May 2010 to consider all available evidence about XMRV and conduct a risk assessment. The subgroup concluded that XMRV can infect humans but there is currently no evidence that it causes human disease and that, on the evidence before the group, no public health action is required at this time. Since the subgroup meeting in May there has been no new scientific evidence that would change these conclusions. In July, the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO), similarly decided not to recommend further measures at present. Both groups will continue to monitor the situation.

Both NHS Blood and Transplant (NHSBT) and Health Protection Agency (HPA) experts concur with the views expressed by NEPNEI and SaBTO and also recognise the need for further research on the prevalence of XMRV in the UK. In a recent unpublished pilot study conducted by NHSBT/HPA, a series of 540 randomly selected English blood donors were screened for XMRV and none were found to be infected.

I hope this reply is helpful.

Christopher Bird
Customer Service Centre
Department of Health

Friday, November 26, 2010

Naturopathic Medicine-To Choose or not to Choose

Doctors who practice naturopathy are called naturopaths and concentrate on minimal use of surgical and pharmacological interventions with a holistic approach. In the USA less than half of the states license and regulate naturopaths, and this practice is not licensed in Australia, or regulated in the UK. Naturopathic medicine is better received in India. There are places in the world where a physician of naturopathic medicine is able to practice with the title of doctor regardless of their education level. (Wikipedia)

Naturopathic medicine is based on the concept that health is not the absence of symptoms, but absence of cause. Naturopathy promotes a healthy lifestyle through the integration of exercise, stress reduction, and a proper diet consisting of natural, organic foods. (Cooper & Miller, Pg. 220)

As people with fibromyalgia and chronic fatigue syndrome we seek help from the variety of alternative treatments and methods available to us. The general feeling in conventional medicine is that naturopathic medicine is not evidence based medicine (not proven with science) and some traditional/conventional MDs and DOs see naturopathic practitioners as quacks. Both traditional and naturopathic practitioners have their own point to make. Personally, I feel an integrative approach will yield the best outcome.

No matter what approach you choose to follow, do it with information, and interview. Beware © if:

If the ad suggests a treatment that is not backed by scientific evidence.

If a vitamin or other preparation does not have a contact name listed on the label. (If the manufacturer is reputable, it will be there.)

If it is a steroid or other hormonal preparation. (Remember that your doctor should always check your hormone levels to determine need. If necessary, a medication will be prescribed, not an over-the-counter drug.)

If the practitioner claims to be able to cure an illness that no one else can.

If the practitioner has no credentials or avoids showing them. (Most of us like to show off our achievements. Look for those diplomas on the wall and read what they say.)

If a practitioner demands a signed financial contract for services, instead of listening to your complaint.

If a practitioner intimidates you or tries to put you on the defensive.

(Cooper & Miller, pg. 235)

Cooper, C and Miller, J. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Vermont: Healing Arts Press, 2010.

Wikipedia, accessed November 26, 2010.

Thursday, November 18, 2010

“Wake Up Sleepy Head” - Non-Restorative Sleep in FM and CFS

“Are you deprived?”

Disordered sleep is prevalent in both fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis. Sleep deprivation, can affect your mental, physical, emotional, and spiritual health. Lack of restorative sleep weakens the immune response leaving us more susceptible to other diseases and disorders.

I understand only too well the effects of insomnia and disordered sleep. Sometimes, many times, despite doing everything right a road block occurs and we literally lose our map to life. This is why I think it is important, in light of the more recent research that we all have a sleep study, so integrative therapies can be implemented.

What is a sleep disorder?

Sleep disorders are characterized by different circumstances. Sleep apnea for instance is an obstructive sleep disorder, and can co-exist with FM and CFS/ME. When this happens a person is deprived of oxygen, which is needed for cellular metabolism and energy. Disordered sleep, meaning that the normal cycles of sleep are not present, not maintaining sleep, and delayed sleep onset have been consistently reported by fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) patients.

Here is a link from that has a really good explanation of the sleep cycles, though these seem to be changing. One thing we except in science is that nothing remains the same.

Many of us seldom, if ever, enter deep stages of sleep, so I am including a link regarding slow wave sleep (SWS, which may in the future be defined as one stage). From

It seems to me, anecdotally (and according to some studies), people with non-restorative sleep, an overlapping symptom between FM and CFS/ME, have a disordered or disrupted sleep cycle. As if that is not enough, there are other co-existing conditions that seem to cluster with both FM and CFS/ME, teeth grinding (bruxism), periodic limb movement (PLM), TMJ, sleep starts, and delayed sleep phase (inability to fall or maintain sleep). These can and do play a role in sleep quality, and I am advocating that an assessment for myofascial trigger points, RLS and PLM be included in the proposed diagnostic criteria for FM and a better explainantion for “jaw pain.”

Sleep deprivation can impede healing and interfere with our body’s immune system, not to mention agitation, and sleep deprivation psychosis. This might explain why so many of us have difficulty fighting off viruses and recovering from trauma, including the micro-trauma we experience in our everyday lives that is repaired during normal sleep.

So what do we do?

According to the Wikipedia link, it seems alcohol (I am assuming not too much, though they don’t state such), THC, and SSRI’s, and possibly Xyrem can promote slow wave sleep (SWS), and benzodiazepines, such as Klonopin can inhibit SWS.

I bring up Klonopin specifically because it is often prescribed to help with the periodic limb movement (PLM) seen in the FM and CFS/ME patient. This leads me to conclude that the treatment for PLM may also be an aggravating factor for lack of SWS. Other treatment suggestions for PLM include, sleeping pills, anti-seizure medications and narcotic pain killers. On the flip side, I have heard that the addition of a benzodiazepine such as Ativan (Lorazepam) might help with myofascial trigger point relaxation. Don’t give up, continue to work with your doctor to find the right treatment for you. People with hypertension know the trial and error involved in finding the right blood pressure medication, the same hold true for us.Not only are we genetically different, we all have our own grocery cart of co-existing conditions.

If I didn’t learn anything else from this investigation, it is that your best bet is to find a good sleep specialist that understands FM and CFS/ME. You and he/she can work together.

There is something you can do to promote your circadian rhythm, which is
orchestrated by two markers, melatonin concentration and core body temperature. Have a bedtime ritual.

A Helpful Acronym for Sleep Hygiene ©

S - Schedule bedtime and stick to it
L - Limit physical activity before bedtime
U - Use comfort measures
M - Meditate (count those lambs)
B - Breathe
E - Eliminate stress and food (including caffeine 2-3 hours prior to bedtime)
R - Remember nothing—clear your mind (journal your to-do list so you can let go)

*(Excerpt from the book, copyrighted material)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!


Arthritis Today. Restless Leg Syndrome Linked to Fibromyalgia by Jennifer Davis (accessed, 11/18/10)

Cooper and Miller. Integrative Therapies for fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont, 2010.

A. R. Gold, F. Dipalo, M. S. Gold, and J. Broderick, “Inspiratory airflow dynamics during sleep in women with fibromyalgia,” Sleep 27, no. 3 (2004): 459–66.

M. Irwin, J. McClintick, C. Costlow, M. Fortner, J. White, and J. C. Gillin, “Partial night sleep deprivation reduces natural killer and cellular immune responses in humans,” Federation of American Societies for Experimental Biology 10, no. 5 (1996): 643–53.

M. Irwin, J. McClintick, C. Costlow, M. Fortner, J. White, and J. C. Gillin, “Partial night sleep deprivation reduces natural killer and cellular immune responses in humans,” Federation of American Societies for Experimental Biology 10, no. 5 (1996): 643–53.

T. Kato, J. Y. Montplaisir, F. Guitard, B. J. Sessle, J. P. Lund, and G. J. Lavigne, “Evidence that experimentally induced sleep bruxism is a consequence of transient arousal,” Journal of Dental Research 82, no. 4 (2003): 284–88.

B. Kundermann, J. C. Krieg, W. Schreiber, and S. Lautenbacher, “The effect of sleep deprivation on pain,” Pain Research & Management 9, no. 1 (2004): 25–32.

M. L. Mahowald and M. W. Mahowald, “Nighttime sleep and daytime functioning (sleepiness and fatigue) in less well-defined chronic rheumatic diseases with particular reference to the alpha-delta NREM sleep anomaly,” Sleep Medicine 1, no. 3 (2000): 195–207.

H. Moldofsky, “The significance, assessment, and management of nonrestorative sleep in fibromyalgia syndrome,” CNS Spectrums 13, no. 3 (2008): 22–26.

M. K. Millott and R. M. Berlin, “Treating sleep disorders in patients with fibromyalgia: exercise, behavior, and drug therapy may all help,” Journal of Musculoskeletal Medicine 14 (1993): 25–28.

T. Kato, J. Y. Montplaisir, F. Guitard, B. J. Sessle, J. P. Lund, and G. J. Lavigne, “Evidence that experimentally induced sleep bruxism is a consequence of transient arousal,” Journal of Dental Research 82, no. 4 (2003): 284–88.

A. Korszun, L. Sackett, Lundeen, E. Papadopoulos, C. Brucksch, L. Masterson, N. C. Engelberg, E. Hause, M. A. Demitrack, and L. Crofford, “Melatonin levels in women with fibromyalgia and chronic fatigue syndrome,” Journal of Rheumatology 26, no. 12 (1999): 2675–80.

H. K. Moldofsky, “Disordered sleep in fibromyalgia and related myofascial pain condition,” Journal of Clinical Dentistry, North America 45, no. 4 (2001): 701–13.

H. Moldofsky, “The assessment and significance of the sleep/waking brain in patients with chronic widespread musculoskeletal pain and fatigue syndromes,” Journal of Musculoskeletal Pain 15 Suppl. no. 13 (2007): [Myopain 2007 poster].

H. K. Moldofsky, “Disordered sleep in fibromyalgia and related myofascial pain condition,” Journal of Clinical Dentistry, North America 45, no. 4 (2001): 701–13.

M. L. Mahowald and M. W. Mahowald, “Nighttime sleep and daytime functioning, sleepiness and fatigue, in well-defined chronic rheumatic diseases,” Journal of Clinical Sleep Medicine 1, no. 3 (2000): 179–93.

J. C. Rains and D. B. Penzien, “Sleep and chronic pain: challenges to the alpha- EEG sleep pattern as a pain specific sleep anomaly,” Journal of Psychosomatic Research 54, no. 1 (2003): 77–83.

E. R. Unger, R. Nisenbaum, H. Moldofsk, A. Cesta, C. Sammut M. Reyes, and W. C. Reeves, “Sleep assessment in a population-based study of chronic fatigue syndrome,” BMC Neurology 4, no. 1 (2004): 6.

E. Vazquez-Delgado, J. Schmidt, C. Carlson, R. DeLeeuw, and J. Okeson, “Psychological and sleep quality differences between chronic daily headache and temporomandibular disorders patients,” Cephalgia 24, no. 6 (2004): 446–54.

Sunday, November 14, 2010

RLS/FM-Letter to Dr. Natanial Watson

Nathaniel F. Watson, MD, Associate Professor of Neurology, University of Washington in Seattle.

RE: The Association of RLS and FM

Dear Dr. Watson,

I could not agree with you more regarding the association of restless leg syndrome, and its cohort periodic limb movement to fibromyalgia.

I am a RN, patient, author and advocate. My latest advocacy piece has to do with the proposed criteria for diagnosing fibromyalgia. I have communicated with Dr. I Jon Russell, Dr. Robert Gerwin, Dr. Robert Bennett, the founder of AFFTER (patient advocacy group for research on FM, whose medical advisors are Dr. Katz and Dr. Yunus) and other advocacy groups who fund research and participate in politics. Dr. Katz is the senior author and Dr. Russell and Dr. Yunus are co-authors, along with several others, of the article published in Arthritis Care and Research.

In my opinion and the opinion of others in the field we need to see assessment of myofasical trigger points in FM and in my opinion inclusion of RLS and PLM. Attached is a copy of the letter I wrote to the NAIMS (NIH), ACR and editors of Arthritis Care and Research. I have had a response from the editors of Arthritis Care and Research, and the American College of Rheumatology has assured me they have forwarded the letter to all of the authors of the published proposed criteria. I have also heard from several of those who received a copy of the letter, but have yet to hear from the NAIMS/National Institute of health.

While I am happy that there will be a better assessment of the centralization of FM, the criteria are not complete as written and we, the patients, cannot endure another two decades without forward momentum. The presence of myofascial trigger points and PLM during sleep and lack of sleep stages in FM are the objective assessments we have been waiting for. The research needs to continue in the right direction.

Thank you for your insight and contribution. I look forward to hearing from you regarding this matter.

Sincerely, Celeste Cooper, RN, author
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-author Jeff Miller, PhD)

You can see a copy of the letter attached to Dr. Watson at

RLS & PLM Prevelance in FM - Letter to the editors of Arthritis Today

November 14, 2010

To the editors of Arthritis today

RE: FM and RLS - Restless Leg Syndrome Linked to Fibromyalgia: A study finds these two conditions commonly overlap.
By Jennifer Davis

Absolutely, RLS and PLM should be considered in the proposed diagnostic criteria for FM, as well as the presence of myofascial trigger points. I am an advocate and have been communicating with physicians and other advocates in the field of FM study. Sleep studies should be done on all FM patients and the absence of healing sleep stage and presence of PLM must be considered in sleep quality. I hope you will read my most recent letter to the NIH, ACR and editors of Arthritis Care and Research who published the proposed criteria for diagnosing FM. You can find it at this link.

Thank you Celeste Cooper, RN, patient, author

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.

Thursday, November 11, 2010

Notify the NIH about including MTrPs in the proposed FM diagnostics

I won't give up on this most important issue. You an find the original letter from me to the NAIMS/NIH, American College of Rheumatology, and the editors of Arthritis Care and Research in my October blogs.

Dear FM friends,

Please take a moment to send the National Institute of health (NAIMS) a two sentence note (below) asking why they are not responding to the new research regarding assessment of myofascial trigger points in the new proposed criteria for FM. They have been resistant beyond belief to fund the research we so desperately need, and while contributions from our community to those who advocate and support research is appreciated, it is not enough. Our government should support us in ways other than supporting research of pharmaceuticals that are either too costly, ineffective, or interact with our other medications.

There are treatments that are more helpful for myofascial trigger point pain, (myofascial trigger point therapy, acupressure, active release therapy and acupuncture) yet they are not being considered. Why? I would like to think otherwise, but my suspicion is that the government doesn’t want to reimburse for these treatments. There is no way for them to make money, and we don’t have lobbyist or government committees’ that will force their hand for the FM patient. We need further research for treatments of FM pain from myofascial trigger points to validate the cost savings and improve our function, and we need research for the cause. Once physicians assess for myofascial trigger points, their existence will be taken more seriously and the research regarding this peripheral input that keeps the FM brain in constant sensitization will have more support.

Shouldn’t our tax dollars support research that considers the cause of FM rather research that only provides a Band-Aid©? These newer medications are proving not to be as effective as the pharmaceuticals would like our doctors to believe. Then they have the gall to police use of pain medications that are affordable. While I appreciate some are receiving a benefit of these newer medications, it should be a choice for those of us who do not have the financial means to access them or cannot tolerate them, and a choice to have expenses of effective alternative therapies reimbursed, which currently are too expensive for the average FM patient.

The original letter can be found at my blog or in the discussion area of our page (links below) If you have the energy I encourage you to include how this impacts you personally, but that is not necessary if your energy reserve is low. This is so important to us and future generations of FM patients. Here is the addy for this letter so you can let us all know if you receive any comments from the NIH.

I hope you will copy and paste the following and send it to the National Institute of Arthritis and Musculoskeletal and Skin diseases (NIAMS)/National Institute of Health (NIH).

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

Celeste Cooper, patient advocate for our group, has not received a response from you regarding her letter written October 20, 2010, “Proposed Criteria for Diagnosing Fibromyalgia”

You can refer to the letter at either link provided here.


(Provide your contact information if you like, and I hope you will post your note and any replies in the discussion area of the page so we can hear your voice. Please share this among your other groups.)

"Never doubt that a small group of thoughtful, concerned citizens can change world. Indeed it is the only thing that ever has."
--Margaret Mead

Harmony and Hope, Celeste

Saturday, November 6, 2010

TMJ/TMD and Bruxism – Perpetuators of FM Pain and their role in the new proposed diagnostic criteria for fibromyalgia.

The presence of jaw pain is now being considered in the widespread pain index (WPI) for the new proposed diagnostic criteria for fibromyalgia. Temporomandibular dysfunction (TMD) most popularly known as TMJ, and bruxism (teeth grinding) are two common sources of jaw pain, and both can be perpetuators of headaches, which is part of the symptoms severity score in the proposed criteria. Both can be attributed to the presence of myofascial trigger points.

Temporomandibular dysfunction (TMD/TMJ), occurs when your chewing muscles are uncoordinated. This puts apposing muscles under undue stress and increases the occurrence of myofascial TrPs. Paradoxically the presence of myofascial trigger points (MTrPs) shorten and cause dysfunction of the muscle involved which can pull the jaw out of proper alignment causing TMJ. Temporomandibular dysfunction is often associated with chronic muscular headaches, craniofacial pain and the pain can extend to the ears, neck, and shoulders. Some people experience clicking and grinding noises during movement of the jaw. Limitations caused by the presence of MTrPs are related to untreated or undertreated myofascial trigger points which occur anywhere there is muscle, including inside the mouth. (Cooper & Miller, 2010, pages 40, 74, 78, 110, 193 and 378)

Bruxism is a fancy term for grinding teeth. This condition can aggravate facial trigger points, interfere with restorative sleep, cause teeth erosion, and, among other things, contribute to headaches and migraines. If you catch yourself grinding your teeth during the day, you most likely grind at night too. According to my dentist, and the following study, bruxism in sleep is much more forceful.

*Untreated trigger points in the mouth can also lead to neuralgia inducting cavitational necrosis.

Book Excerpt: Neuralgia-Inducing Cavitational Necrosis ©

Neuralgia-inducing cavitational necrosis is caused by cavities in the jawbone leading to destruction. It occurs after tooth extraction and is often missed on X-rays until significant damage is done. It is the result of a lack of blood supply to the area usually as a result of trauma or from an untreated trigger point inside the mouth. (Starlanyl and Copeland, 2001, pg 46). There can also be other causes, such as tissue being left behind with extraction or surgical removal, a weakened immune system, a poorly functioning thyroid, poor nutrition, or smoking. Chronic osteoporosis can also impede healing. Use cautionary measures to prevent necrosis after having a tooth extracted. The treatment, if necrosis occurs, is surgical removal of the bone and tissue involved. (Cooper and Miller, 2010, pg. 102)

Treatment Options

If you find yourself clenching/grinding during the day, place your tongue to the top of your mouth. You will be amazed at how much tension you were carrying physically even if you are not stressed mentally. This tip was from Lauren in a discussion group and IT WORKS!

Follow this link provided by the National Association of Myofascial Trigger Point Therapists, NAMTPT, referenced in our book on page 224 and 373. They are specially trained in Travell and Simons work and this is one of the most comprehensive treatment recommendations for treatment of TrPs (trigger points) associated with TMJ and Bruxism.

Besides addressing myofascial trigger points you should address this problem with your dentist, as it can cause serious tooth erosion. Mouth guards are now available over the counter at a reasonable cost.

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

Cooper, C and Miller, J. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont, 2010 (links available at

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,


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.
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

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).

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.

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:

~ • ~ • ~ • ~ • ~ • ~
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:

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:

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 to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All blogs and comments are based on the author's opinions and are not meant to replace medical advice.  

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, 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,

Friday, September 24, 2010

Letter Regarding Concern over the Proposed FM Criteria

Letter sent to:
International Myopain Society

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.


Celeste (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

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:


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

Celeste's Website

Celeste's Website
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