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

Celeste's Website

Celeste's Website
Click on the picture