Showing posts with label integrative therapies. Show all posts
Showing posts with label integrative therapies. Show all posts

Wednesday, December 6, 2017

Fibro-mates, GI Disturbance, and Hypnosis



(C) The Forest of  an Open Mind

For years, we have known an extraordinary number of us with fibromyalgia also live with one or more frequently co-occurring, comorbid, conditions. One of those is irritable bowel syndrome (IBS). I have vocalized my own experiences with IBS, interviewed Dr Stephen Wangen, board certified, licensed physician in naturopathic medicine and co-founder and Medical Director of the IBS Treatment Center, and I have written about it in what our readers call “The Big Book”. 


Quintessential Fibro-mate: Irritable Bowel Syndrome (IBS)

If you have IBS, you know the drum-like tightness and resonance caused by belly bloat. When not in an attack, I can explain it like this; I am in a canoe that is lazily floating through my gut. There I am with my feet up, hands behind my head relaxing in a tranquil gently moving environment. Then suddenly, I am holding on for dear life. My canoe ricochets from side to side like a ball hitting the bumpers of a pinball machine, threatening to throw me into a toxic abyss. If you have FM and IBS, you know.

What you may not know is that during an attack I practice creative visualization. I envision my bowel being coated and cloaked with a calming gel that clings to the walls of my intestines. The gooey colorful substance protects the lining against caustic toxins. As I control my breath, I call on my reserves to translate what is happening differently, without judgment. I have not mastered the technique enough to prevent an attack, but it does ease my minds interpretation of the event. In the past, things like creative visualization were not seen as valuable tools by traditional medicine. But, could times be changing? 

Fibro-mate: Gastro-esophageal Reflux Disease (GERD)?

A stronger connection has been made between fibromyalgia and GERD, as reported in an article I wrote for ProHealth. What’s interesting about this connection is that all three; FM, IBS, and GERD share two things

1.     Relationship to the immune system
2.     Relationship to brain, centralization

What’s even more interesting is that traditional medicine, thanks to neuroscience, is now embracing the things my co-author, Jeff Miller, PhD, and I have written about in our books.

Hypnosis— Really?

According to Medscape, a continuing education website for physicians and registered nurses, hypnotherapy for IBS, GERD and inflammatory bowel disease  looks promising. Did I ever think conventional medicine would look outside the box? Yes, but when we wrote our book on integrative therapies for fibromyalgia, ME/CFS, and chronic myofascial pain I would not have predicted the robust acceptance or the change taking place in traditional medical paradigms.

Hypnotherapy, as I can personally attest, gives us a sense of control and like my reported experience with creative visualization; it exposes our internal dialogue to change. As a qualified hypnotherapist makes suggestions, we gain power over autonomic body dysfunction, such as IBS and GERD. Biological changes, i.e. temperature, pulse, and blood pressure occur in response to our thoughts as evidenced by biofeedback.  

There is a well-documented bidirectional pathway between the brain and gut, and I believe integrative therapies, such as creative visualization, hypnosis, and biofeedback have a positive effect because fibromyalgia, IBS and GERD share a brain-body connection, centralization and the autonomic nervous system.


Articles of interest:



 In healing,,Celeste

"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links 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.

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



Tuesday, September 20, 2016

Rolfing® and Chronic Pain: An Update from Expert, Ann M. Matney


September is “Pain Awareness Month”, so I couldn’t think of a better time to share this most important update, or unofficial addendum, to our Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain book.


Expert at the Rolfing Institute, Ann M. Matney, was kind enough to let me know the nitty gritty. Following is what she shared.

As human beings going through life, we develop postural and movement patterns that deeply inform who we are.  From physical ease to chronic pain at varying levels, how we inhabit our bodies creates the background of our immediate experience.  My passion is to guide clients through the Rolfing® ten-series, which allows them to explore posture and movement with new awareness and often releases them from limiting patterns that cause pain and discomfort. 

I am a certified Rolfer® in Bozeman, MT and I’ve been practicing for 14 years.  I want to thank you for writing Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection, an accessible, informative book that opens the doors to the world of integrative medicine as treatment for these difficult conditions. 

I found the section on Rolfing® Structural Integration to be well-written and accurate, picking up on many of the subtleties that are often glossed over or misunderstood.  So, I thank you for your careful assessment.

What is Rolfing?

One of the main issues that the Rolf Institute of Structural Integration seeks to clarify in the press is that, despite the use of a physical contact that is comparable to “myofascial release”, structural integration is not a form of massage. Rolfing/Structural Integration is a separate lineage with its own history, as well as its own schools and separate continuing education.  One cannot learn massage at a “Structural Integration (SI)” school, nor properly learn SI at a massage school.  In fact, “myofascial release” and “deep tissue massage” are offshoots of Rolfing.  

The Difference between Rolfing and Massage

An important distinction between Rolfing and myofascial release is that Rolfing strategically lengthens fascia that is shortened, while avoiding lengthening fascia that is relatively long, so that the person achieves maximal balance between agonist/antagonist muscle pairs as well as creating more balance at each joint.  

Rolfing also includes postural and movement re-education for sitting, standing, walking, and so forth, so that the client can consciously integrates new postural and movement balance. I say all this as a means of explanation for why we decline to have structural integration referred to as massage.

Is Rolfing Painful?

Clients with fibromyalgia and other chronic pain disorders need not be fearful that Rolfing is “aggressive”.  When the practitioner has a patient-focused approach, it may be used successfully because current structural integration training and practice is intentionally neither aggressive nor painful. While there was a belief that more intensity yielded more results when Rolfing was first emerging as a bodywork, that thinking has been extinguished for decades at both institutional and individual levels.   

Complements to Rolfing

Craniosacral therapy and neurofeedback can reduce anxiety and lift depression, allowing clients to experience a sense of peacefulness and integration that compliments Rolfing. I help clients inhabit their physical selves in a new and deeper way so that comfort and integration can become their new normal.  

Ann M. Matney has a B.A. in philosophy from Smith College, is a certified Rolfer® by the Rolf Institute of Structural Integration, and she is trained in craniosacral therapy and neurofeedback.  She is currently enrolled as a graduate student in a rehabilitation counseling at Montana State University.

Footnote

Annie tells me the International Association of Structural Integrators sets the standards for structural integrators. Rolfers® (which should be capitalized every time and followed by the registered trademark symbol for the first occurrence) are one group, namely those certified by the Rolf Institute of Structural Integration in Boulder, CO.


In healing,,Celeste


~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate


Celeste’s Website: http://CelesteCooper.com

Thursday, September 1, 2016

Inspiration for Reclaiming Control over Pain and Illness


A Beholding Forest©




A respite in the Rockies is something my husband and I have enjoyed for thirty-five years and since we are in our sixth and seventh decades of life, we are grateful to have done it yet again. It’s a marriage retreat of sorts, a time to appreciate my husband’s hard work, allowing me to use my photography to escape into the bowels of majesty.


I feel an intimacy with nature, wild flowers coloring the landscape, wild animals outside our RV door, rainbows that astound us and pink sunsets that devour our sensibilities. I am touched by my husband’s desire to find joy in something I love. My soul is awakened when I hear these words…


Come quick; grab your camera!

Young Buck Innocence©

Early fall makes itself known in the mountains where summer is short. The aspen’s are beginning to turn and as their  leaves shudder to meet the sun’s rays, I am reminded that the warm days of summer will soon give way to crisp chilly air that awakens the season of harvest and preparation.

Chronic pain and illness dictates that we adapt to change. But, unlike nature’s beings, it isn’t always instinctive. I know I need daily reminders on how to apply the things I learned when writing our first book  (with contributions of my co-author, Jeff Miller, PhD).

Fall is looming and change is upon us. Find out how you can adapt as nature does by using the daily tips in the Fall Devotions edition of the book series. If you already have the book, it's time to get it out and re-explore. I suspect you will see things from a different perspective this year, and you will learn something new to share.

Find detailed information at CelesteCooper.com:  


  
September is pain awareness month and a busy one for those of us who advocate for balanced affordable care for everyone. My greatest desire as an RN is for patients to have choices. It’s empowering to reclaim control over the thing we can change, and I hope you find Fall Devotions helps you do that.

Here’s to a colorful and hearty fall season.



Available:

Amazon in paperback 
Amazon UK Kindle 
Amazon Canada Kindle 
Barnes and Nobel paperback 




~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate

Celeste’s Website: http://CelesteCooper.com


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


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

Tuesday, September 16, 2014

Is the prevalence of joint hypermobility purely a coincidence in CFS and FM? by Celeste Cooper


Shared by ProHealth is Dr. Peter Lowe’s assessment of joint hypermobility in chronic fatigue syndrome.

Is The Physical Examination Normal in CFS? Part 2: Joint Hypermobility, here.


As you will see, I too made this connection in our book “Integrative Therapies for Fibromyalgia, ChronicFatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (rated in the top 100 books on Diseases & Physical Ailments on Amazon in 2013) if you read more about joint hypermobility and Ehler’s Danlos Syndrome on my website here. 



How coincidental could this be?

Another study suggests this phenomenon goes undiagnosed in irritable bowel syndrome, a common comorbid disorder to fibromyalgia, which often overlaps with CFS.

Fikree A, Grahame R, Aktar R, Farmer AD, Hakim AJ, Morris JK, Knowles CH, Aziz Q.. A Prospective Evaluation of Undiagnosed Joint Hypermobility Syndrome in Patients with Gastrointestinal Symptoms. Clin Gastroenterol Hepatol. [Jan 15 Epub ahead of print.]

“Many upper and lower GI symptoms increased with increasing severity of JHS phenotype. Upper GI symptoms were dependent on autonomic and chronic pain factors. JHS is common in GI clinics, with increased burden of upper GI and extraintestinal symptoms and poorer quality of life. Recognition of JHS will facilitate multidisciplinary management of GI and extra-GI manifestations.”

French investigators noted some stark realities in fibromyalgia patients.

“Some patients suffering from fibromyalgia present with clinical signs and alterations in the histopathology, immunohistochemistry and ultrastructure of the dermis similar to the Ehlers-Danlos syndrome, hypermobile type (EDSH). Some types of fibromyalgia possibly represent an undiagnosed EDSH.”

Hermanns-Lê T, Piérard GE, Angenot P. [Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type?] Rev Med Liege. 2013 Jan;68(1):22-4.

I can only speak from what I found in my literature review for the 434 page book and my own personal experiences. A stark reality for me is that my own skin is that of someone on long term steroid therapy, but I don’t even tolerate steroids. My wounds heal so slowly that one of my doctors said I should always have a wound care specialist. My skin connective tissue tears like paper and bruises from a feather touch. I have had four shoulder surgeries, one complete reconstruction because it would not stay put, and the other three because of tendon and cuff tears. My hips still pop in and out at will, only contributing to fall risk and aggravation and development of more trigger points, piriformis and sacroiliac pain, and hip bursitis. I have suffered many severe joint sprains throughout my life. I can still put my hands flat on the floor and my therapists are amazed at my flexibility in light of my age and the severe myofascial pain syndrome. And yes, before arthritis, I was what many referred to as double-jointed.


Are our doctors giving this connection serious consideration? 

Could this explain why so many FM and CFS patients 
are susceptible to myofascial pain syndrome?


Keep up the good work Dr. Rowe and fellow astute investigators. A physician should never underestimate the value of a skilled physical exam. We salute you.








~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."
Celeste Cooper, RN
Author, patient/ advocate, fibromyalgia health expert


Books:
Read about Celeste and access to her books at Author Central here
Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 

Advocacy: 
Fibromyalgia expert on Sharecare, here
Participant in the Pain Acition Alliance to Implement a National Strategy, here.


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




Sunday, June 30, 2013

Web MD Slideshow: A Visual Guide to Fibromyalgia: Six important key points.

Web MD Slideshow: A Visual Guide to Fibromyalgia, here.  


#1

Tender point exam is still suggested. [This is a very important part of the physician or nurse practitioner assessment. Omitting a physical exam, as done in the 2010 preliminary or 2011 modified criteria adopted by the American College of Rheumatology, is neglectful. See my blog on Sharecare here.


#2

There’s one lab test that can check for fibromyalgia. It measures the levels of proteins in the bloodstream and can help confirm a fibro diagnosis.


See news here.

Information on test here


#3

Exercising just three times a week has also been shown to relieve fatigue and depression. But it's important not to overdo it. [Do’s and Don’ts of exercise in fibromyalgia and chronic myofascial pain, Cooper and Miller, 2010, here]


#4

Nutrition. [An important piece suggested by Cooper and Miller. About Cooper and Miller, here.] 


#5

Massage. [Known to help painful shortened muscle fibers, trigger points, and return to normal resting length, Trigger points are discussed by Cooper and Miller, 2010, here.]


#6

Therapies. We discuss these and more in our book (Cooper & Miller, 2010). Learn more here.


 

All blog posts and answers are not meant to replace medical advice.

 

You can find Celeste and more information on dealing with, and managing, chronic pain and comorbid conditions on her website http://TheseThree.com

 


Wednesday, February 27, 2013

Pelvic Pain, Bladder Disorders, Prostate Problems, Fibromyalgia, Chronic Fatigue Syndrome, and Other Female and Male Related troubles: Is it more than co-incidence?



The muscles in the pelvic girdle are what keep our organs from falling to the floor. These muscles make up the perineum, the urogenital triangle, and the anal triangle. They support the rectum, the vagina/penis, and the urethra, but they may not be the only muscles involved in your pain and dysfunction.


Causes

Pelvic pain can be from many causes such as, vulvodynia, irritable bladder or interstitial cystitis, infection, vaginal atrophy, prostate problems/pain, testicular and or pain in the penis, pain in the urethra (where your urine comes out), rectal pain, ovarian cysts, ectopic pregnancy, neuralgia, endometriosis, inflammatory bowel diseases, irritable bowel syndrome, diverticulitis, and myofascial trigger points (MTrPs), but for this blog we are looking specifically at the bladder and the perineum (area of the urethra, penis, vagina, and rectum).

Myofascial trigger points have been identified as the greatest aggravator of chronic pelvic pain, and pain is not the only symptom. Pelvic floor problems can also cause a decrease in urine flow in men and women, erectile dysfunction, urinary retention (setting the stage for infection), urgency (always feeling like you have to urinate), and constipation.

For more on myofascial trigger points and myofascial pain see “Myofascial Pain” at my website and
 my blog: Points That Need More Than Pondering: Defining Myofascial Trigger Points


Offending trigger points

Myofascial trigger points in adductor magnus (thigh), or internal oblique (abdomen), are capable of causing bladder pain and frequency, and MTrPs in the adductor magnus can cause a host of referred pain to groin and inner thigh, pelvic and pubic bones, rectum and vagina and can cause menstrual cramping (as can MTrPs in the rectus abdominus, abdomen), and trigger points in the internal oblique can also cause bladder difficulties. The muscles of the pelvis, and the multi-layered muscles of the pelvic floor can become tight, unforgiving and short due to MTrPs. Myofascial trigger points in pelvic related muscles can refer pain to the urethra, rectum, coccyx, or the crease of the buttocks.

This is speaking in generalities, but it’s important to understand that the source of your pain can be close by or well away from pelvis itself.  Treating MTrPs, whether active (painful without touching) or latent (only painful with touched) that refer pain to a specific region is just as important as treating those directly relatable. Often times, those who claim to know myofascial trigger points do not understand the complexity, this includes physicians, physical therapists, and body workers.


Chronic myofascial pain in fibromyalgia, chronic fatigue syndrome, and pelvic dysfunction

Myofascial pain syndrome often co-exists in fibromyalgia, and has been identified in some chronic fatigue syndrome (ME/CFS) patients, chronic pelvic and bowel disorders.  Myofascial trigger points are a peripheral nerve to muscle problem that lends to centralized (amplified) pain in fibromyalgia, interstitial cystitis, bladder difficulties, ME/CFS, IBS, and other overlapping conditions.  This hypersensitive state is also present in these disorders. Ignoring the obvious bloodies the diagnostic waters and most importantly delays appropriate treatments and leads to flawed research.


Therapies

It is important to identify perpetuating factors, such as, co-existing hip problems, piriformis syndrome, pudendal neuralgia, low back or sacroiliac joint dysfunction, and other overlapping conditions, bringing them under control when possible. Pay close attention to aggravating factors such as, sitting too long or on hard surfaces and chairs that can’t be adjusted to your body type, over activity, infection, poor posture, wearing pants that are too tight, consuming offending foods, etc.

There are a variety of therapies to help you, including intravaginal and pelvic floor trigger point injections, external and internal massage of the perineum and in women the vagina, biofeedback, bladder retraining, transcutaneous electrical nerve stimulation (TENS), tennis ball therapy (as discussed in our book),
acupuncture, dietary changes, over-the-counter probiotics for the bladder, stretching movements, topical analgesics (such as oragel), oral analgesics, and of course specific myofascial therapy by a trained specialist. Sometimes, all are necessary.

Seldom are doctors well informed about myofascial pain s and trigger points, so I am a firm believer that women should see a urogynecologist, that men should see a urologist and in both cases, the physician should understand the role of the myofascial in chronic pelvic pain.  The same is true for the physical therapist. Why? Those who do not understand the role of trigger points chronic pelvic pain and dysfunction may suggest traditional therapies, such as, Kegel exercise, which can worsen your symptoms, and when co-existing conditions such as piriformis syndrome, spinal disease, IBS, etc. are involved; a host of referral patterns are involved.  This is why identifying ALL your pain patterns (whether you feel a trigger point there or not) is important information for your specially trained healthcare provider.

Always discuss your symptoms with your doctor to make sure other causes are ruled out. If your pain and dysfunction is not found to be from another source, please look for those myofascial trigger points and a specialized therapist, they are treatable.

Resources for you:

IC and Irritable bladder
Blatman Pain Clinic
What Your OB/GYN Should Know About FMS and CMP by Devin J. Starlanyl
Pelvic Floor Myofascial Trigger Points: Manual Therapy for Interstitial Cystitis and the Urgency-Frequency Syndrome by Jerome Weiss
Fibro Care Center
National Association of Myofascial Trigger Point Therapists
ICA – Physical Therapy
ICA – Pelvic Floor Dysfunction
International Myopain Society
IC Network


(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.  

Friday, April 29, 2011

Letter to the President of the United States

Dear Mr. President,

Did you know that Dr. Janet Travell is the pioneer in understanding myofascial trigger points AND the first female physician in the Whitehouse? Did you know she treated President Kennedy for his personal chronic pain issues?

Fibromyalgia (FM) is a biological disorder. It is a disorder of the central nervous system that is further sensitized by input from the peripheral nervous system. But the proposed diagnostic criteria for fibromyalgia does not include assessment of Hashimoto’s Thyroiditis, restless leg syndrome myofascial trigger points which are knotted up pieces of muscle fiber called trigger points, that keep the brain in perpetual wind-up because of the peripheral pain and dysfunction, including shortening of muscle and neuropathies. We have been inappropriately labeled far too long. Many have been psychologically bruised by the medical community. Touch me. Feel the knots in my muscles, test me for thyroid autoimmune disease, and perform a sleep study on me that shows you I moved my legs 187 times in 4 hours and never reached slow wave progression sleep and then tell me it is all in my head.

I have communicated my concerns as a patient, author and advocate to Mr. Clark, Public Liaison, National Institute of Health, NIAMS division, editor of Arthritis Today, who published “The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity” (see footnote) and the liaison for the American College of Rheumatology.

We need to avail all treatments including complimentary therapies. Pain and muscle dysfunction caused by myofascial trigger points should be treated with appropriate hands on therapy by those trained in the guidelines set forth by Dr. Janet Travell later joined by Dr. David Simons (first physician in outer space).

Can we, the fibromyalgia community count on you to take a stand? Without your support, we can expect another decade of unresolved pain, fatigue and dysfunction. Present research supports all I have said, but we need more, we need to move the science in the right direction until a cause and a cure is found.

Sincerely,
Celeste Cooper, author of
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-authored with Jeff Miller, PhD)
www.TheseThree.com

9-1-1 FM Awareness Letter on Proposed Diagnostics in Template Form for Using

The following is my letter which will be going out through the month of May to various physicians, researchers and professors. I have provided it in template form so that you may use it in anyway you desire. Feel free to use it as is as long as you state that it is written by Celeste Cooper, or change it up to make it yours.

Don’t be the person standing waiting for help to arrive assuming someone else has already called
9-1-1.

This is my 9-1-1 to you.


RE:
Diagnostic Criteria for Fibromyalgia

Dear Ladies and Gentlemen, (Personalize unless it is being sent to multiple recipients)

First Gear “The hook” – A statement that will engage the reader

You probably already know that fibromyalgia is a disorder of the central nervous system that is further sensitized by input from the peripheral nervous system. But did you know that currently the proposed diagnostic criteria for fibromyalgia does not include assessment of Hashimoto’s Thyroiditis, even though the study by Bazzichi L et al) shows Hashimoto’s patients may have a link to fibromyalgia? Did you know there is a higher incidence of restless leg syndrome in the fibromyalgia patient than the general public? Did you know that scientists believe what were once thought to be specific diagramed “tender points,” used to diagnose fibromyalgia, are now thought to be knotted up pieces of muscle fiber called trigger points? Or that these trigger points, which are easily felt by a trained examiner unless the muscle is too taut, or the trigger point is deep beneath other muscle or behind bone, can radiate pain to other parts of the body? While it is possible that more research is needed to include the presence of Hashimoto’s or restless leg syndrome as part of the diagnostics, it should be considered in assessing the FM patient, and the research on the association of myofascial trigger points (resulting from excessive release of acetylcholine across the neuro-muscular junction) as peripheral pain generators to FM is staggering. (See the citations in the copies of letters attached).

Did you know that Dr. Janet Travell is the pioneer in understanding myofascial trigger points AND the first female physician in the Whitehouse? Did you know she treated President Kennedy for his personal chronic pain issues?

Second Gear “Personalization”

Fibromyalgia is a biological disorder. We have been inappropriately labeled far too long. Many have been psychologically bruised by the medical community. Touch me. Feel the knots in my muscles, test me for thyroid autoimmune disease, and perform a sleep study on me that shows you I moved my legs 187 times in 4 hours and never reached slow wave progression sleep. See what you come up with and then try to tell me it is all in my head.

Third Gear “History” (What is your relationship with this piece. Are you outraged? Have you taken this issue up with someone else? Are you in agreement with something someone else has had to say? You are welcome to make reference to my letters stating it is the correspondence from Celeste Cooper)

I have communicated my concerns as a patient, author and advocate to Mr. Clark, Public Liaison, National Institute of Health, NIAMS division, editor of Arthritis Today, who published “The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity” (see footnote) and the liaison for the American College of Rheumatology.

Fourth Gear “State your case”

While the authors of the preliminary proposed criteria for diagnosing fibromyalgia have done a good job defining the central and autonomic effects of FM, it is not complete without the assessment of the body-wide myofascial trigger points (MTrPs) fibromyalgia patients deal with. Restless leg syndrome and its counterpart periodic limb movement, found at greater rates in FM which may be a factor in sleep quality, may also be related to the dysfunction caused by peripheral MTrPs. And it is a patient’s right to have their metabolism restored in the face of thyroid disease and not overlooked as a symptom of fibromyalgia.

We need to avail all treatments including complimentary therapies. Pain and muscle dysfunction caused by myofascial trigger points should be treated with appropriate hands on therapy by those trained in the guidelines set forth by Dr. Janet Travell later joined by Dr. David Simons (first physician in outer space).

Full Speed Ahead “Provide for follow up”

Can we, the fibromyalgia community, and most likely someone you know personally, count on you to take a stand? Without your support, we can expect another decade of unresolved pain, fatigue and dysfunction. I don’t expect that assessing and addressing these additional issues will cure fibromyalgia, however we need a scientifically based protocol that is consistent among all those treating, researching, and educating this disabling disorder.

One cannot or should not ignore the science set before us. We need to move the science in the right direction until a cause and a cure is found. We need validation so that our government and others will help support the research necessary to help fibromyalgia patients get back to work, and lead productive lives. We need to be able to count on someone. If you are unable to facilitate, would you share information here with someone who is in that position, so that we maintain forward momentum.

Sincerely,
Signature [Type or sign your name here.]

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

You may contact me at ….
For more information visit, www.TheseThree.com

Attachments: [Name any attachments that support your letter and its content.]

October 20, 2011 letter
Letter to Mr. Clark, Public Liaison, NIAMS (NIH)

Copy: [List anyone you feel would benefit from knowing you have sent out your letter]

Resources: (If you have made reference to a particular article or research be sure to list the full citation).

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. “Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?” Rheumatology International, Nov 18, 2010.,

Viola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study" Journal of Clinical Sleep Medicine ,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.

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.

Sunday, April 24, 2011

THE TREATMENT OF FIBROMYALGIA by Dr. John Whiteside with comments

Dr. John Whiteside is an Australasian College physician and Fellow of the Australian College of Nutritional and Environmental Medicine. He specializes in treatment of myofascial conditions including fibromyalgia. He had the grand opportunity to be mentored by and study under the world renowned expert and pioneer of myofascial medicine, Janet Travell, MD and lectured with David Simons, MD who later joined Dr. Travell in her research and authorship of medical textbooks regarding myofascial trigger points.

Hear what Dr. Whiteside has to say regarding myofascial trigger points in fibromyalgia, perpetuating factors like: amalgam fillings, hormonal deficiency in female and male fibromyalgia patients, hypothyroidism, diet, and supplements. You will also read about compounding pharmacies, myofascial therapies, physical therapy, and holistic treatments.

THE TREATMENT OF FIBROMYALGIA
By Dr. John Whiteside

The following information is the approach I take with my patients. I have selected the main factors I believe require attention. A full detailed account of all the factors can be found in the book by Celeste Cooper, RN and Jeff Miller, PhD, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain.

A spectrum exists running from a simple localized myofascial pain syndrome such as a hamstring injury in a young athlete, to the widespread pain and fatigue of fibromyalgia. The common denominator is the myofascial trigger point. In the first case the number of trigger points are few and the client/patient is healthy with minimal or no perpetuating factors. In the second case there are multiple trigger points and the patient is very sick.

With the athlete, all we have to do is inject the trigger points, and recovery is quick and usually permanent. With the fibromyalgia patient, we need to ask, “Why did this illness develop?” and we need to remove as many perpetuating factors as possible to allow healing.

My approach is to attend to as many perpetuating factors as I can first, then begin a series of trigger point injections. In practice this is difficult, because by the time I get to see these patients, they are usually unfit for work and have limited financial resources. Attention to perpetuating factors requires money, and the course of trigger point injections can be very long.

PERPETUATING FACTORS

DENTAL

This may well be the most important perpetuating factor in our modern society. If you have any amalgam fillings or root canal filled teeth, I urge you to read very carefully all the detail on the web site by Dr Robert Gammal. Robert is the leading alternative dentist in Australia, (now retired). Please spend time following the links and consider purchasing the DVD’s. www.robertgammal.com

This, together with the book by George Meinig, Root Canal Cover-Up, is compulsory reading. George was a Founding Member, and past president, of the Endodontic Society of the USA. After a lifetime of doing and teaching root canal therapy, he reviewed the evidence and renounced all his previous work to teach of the dangers of this practice. The evidence in this book is clear and conclusive: root canal fillings and amalgam fillings are toxic to humans.

Over 50% of the patients that come to me for assessment have root canal filled teeth, and a higher percentage have amalgam amalgam fillings. If this is representative of the general population then, clearly, there are many people walking around without obvious pathology. However in those with pathology this is the first perpetuating factor I would correct.

I watched a DVD about the Paracelsus clinic in Switzerland. This is one of the world’s finest holistic clinics. At the end of the presentation, the doctor in charge of the clinic summarized the information. He said, “the people who come to our clinic get better because of all the different things we do, but if I was able to do one thing only for each patient I would remove all their root canal filled teeth and all their amalgam fillings.”

I appreciate that this is a very difficult decision for patients to make. I explain that I can give no guarantee that their clinical condition will improve if they remove their root canal filled teeth and amalgams. I ask only that they read the evidence and then as informed consumers make up their own minds. Since I became aware of holistic dentistry 5 years ago I have seen many patients who became ill following root canal therapy and many who became well after their removal. I am a convert. I had a single root canal filling done when I was 23 years of age. I suffered chronic sinusitis from around that time until I had that tooth extracted 5 years ago. Since then I have had no episodes of sinusitis at all. My energy levels have been amazing and I have felt for the first time in my life really well.

My daughter fractured a front tooth at age 12 years and had a root canal filling. In recent years she suffered from bleeding gums. She was studying in Tasmania. She flew to Perth mid 2010 and I arranged for her to have the root canal tooth extracted and the gap bridged. The bleeding gums ceased immediately. She telephoned me 2 weeks later and told me her studies were so much easier as the constant low grade flu feeling she suffered from all her life was gone.

I have no doubt that root canal fillings and amalgams are major causes of illness in our society.

[Celeste’s side note]. I dealt with a metallic taste and loss of the ability to smell for several months. During that period, I was evaluated by two different ear nose and throat specialists to no avail. I was put on a mouth wash to help with dry mouth, and evaluated by a dentist. Eventually this problem subsided, and at the time I believed the symptom improved because I switched from generic levothyroxin. As I look back, that period was the beginning of a series of crowns to replace large amalgam fillings because of severe bruxism. After reading what Dr. Whiteside has to say, it is my opinion; one should give serious consideration to replacing amalgam. I understand the expense; many insurance policies in the US will only cover amalgam because they are CHEAP! At least consider replacing them by attrition. This week I found a dentist that does not have amalgam in his office.

*Amalgam is a low cost mixture of mercury and metal used to restore teeth.

MALE AND FEMALE BIO-IDENTICAL HORMONE REPLACEMENT THERAPY (BHRT)
It is an indictment of our medical profession that these were never used as the treatment of choice in the first place. As we learned of the properties of the different hormones (progesterone, estrogen, DHEA, testosterone, etc.) , we had the ability to provide safe oral contraception to women and to provide safe treatment of heavy painful periods, premenstrual syndrome, post natal depression, and support the ageing process to minimize the onset of degenerative disease and cancer. But these substances were generic. They could not be patented. The Pharmaceutical Industry followed the dollar and proceeded to make and patent artificial hormones that were as close as possible to the real thing. But they were not the real thing, and they have been responsible, and continue to be responsible, for much of the illness we see in our modern society.

The best introduction is found in the Life Extension articles. Go to www.lef.org and enter bioidentical hormones into the search engine. For further research go to www.naturalnews.com and enter bioidentical HRT. Natural News is the best medical detective web site on the net. It is well researched and is not biased by product sales.

Fibromyalgia, women and BHRT

Fibromyalgia is more common in women. From puberty onward progesterone deficiency is common in women. In young women anovulatory cycles (absence of ovulation), produce no progesterone and in the cycles where an egg is released, often the progesterone production is less than optimal. Anovulatory cycles and luteal insufficiency are common due to the many stressors of modern life: poor diet, emotional stress causing excess cortisol, intensive exercise (elite female athletes frequently have no menstrual periods, with continual anovulatory status), and pollution. The use of the oral contraceptive pill containing false progesterone (progestagen) suppresses normal progesterone biochemistry.
Anovulatory, absence of ovulation
Luteal Insufficiency, less than optimal progesterone

Progesterone is the single most nourishing hormone for the female body. It is an antidepressant. It is a calmative, smoothing out mood swings. It is a diuretic assisting maintenance of ideal weight. It promotes deep delta wave sleep allowing better tissue repair overnight. It normalizes the blood clotting system to protect against deep vein thrombosis, heart attacks and strokes. It protects against breast cancer and osteoporosis. The “high” that most women feel in the last 2/3 of their pregnancies is due to the massive amount of progesterone produced from the placenta. It is a feel good hormone. When the placenta is delivered at childbirth this rich source of progesterone is removed and if the ovaries are low progesterone producers then post natal depression immediately follows. The treatment of post natal depression with bio-identical progesterone is quick and effective. These women are suffering from a low progesterone level, not an antidepressant deficiency.

There is no down side to the prescription of progesterone. There are no serious side effects. Because it can be given safely to all women, it is part of my regime for all women with fibromyalgia.

Estrogen is only needed for perimenopausal and post menopausal women. Before that time women suffer from estrogen dominance, mainly due to the pollution of our environment with false estrogens (xenoestrogens). This pollution is global, xenoestrogens are even found in the polar bears in the Arctic Circle. Perimenopausal and post menopausal women with fibromyalgia need a little estrogen in their cocktail.

DHEA and testosterone are repair hormones (androgens). In women they are very frequently suppressed by the progestagens in the oral contraceptive pill (OCP). It is really silly that the Pharmaceutical Industry made an artificial toxic substance that gave women the freedom to have sex without the fear of an unwanted pregnancy, while at the same time, suppressing the very hormones that make them want to have sex in the first place. How wonderful would it have been if they had made a bio-identical HRT oral contraceptive with progesterone and made women safe from blood clots and breast cancer and retained the repair properties of the androgens?

In women the androgens are produced in the adrenal glands and this function deteriorates with age. The production is also decreased by stress. Thus in a woman with fibromyalgia it is common to see low androgen production, and this problem becomes worse with age. After blood testing to confirm the fact, it is normally essential to include androgens in the cocktail for women with fibromyalgia.

Fibromyalgia, men and BHRT

In men, the main hormones that need attention are DHEA and testosterone. The most important is testosterone produced by the testes. Decreased production is documented as occurring from the 50’s onward, but I am seeing this in much younger men. This more widespread age group of presentation is again manly due to false estrogens (xenoestrogens) in the environment. A man with fibromyalgia must have his testosterone levels checked and if the levels are in the low normal range (not necessarily below the lower limit of normal), then a trial of testosterone therapy should be given. Correctly prescribed, the only contraindication to testosterone therapy is an established prostate cancer. Until the appearance of a prostate cancer, keeping the testosterone levels high protects against the development of prostate cancer. There are no other problems with testosterone in men. It is as good for men as progesterone is for women. Any man presenting to me with pain and fatigue, unless his blood levels are very high, will be given a trial of testosterone replacement.

Hormones for men and women to consider

Pregnenolone

Another hormone worth considering in both men and women is pregnenolone. This was widely used with great success for arthritic pain in the 1940’s, but fell out of favor when synthetic cortisone was developed and patented by the Pharmaceutical Industry. Pregnenolone was safe and effective and synthetic cortisone was dangerous, but pregnenolone was generic and again it was more important to make money than to heal people.

Thyroid hormone

The final hormone that needs attention in both men and women is thyroid hormone. Nutritional medical doctors look at where the thyroid levels are in relationship to the normal range. If the level of TSH (thyroid stimulating hormone) is in the upper half of the normal range (indicating low tissue thyroid levels, it is reciprocal), and the patient has symptoms of low thyroid function, then it is worth a trial of thyroid replacement. The main symptoms of low thyroid levels are fatigue, foggy brain, constipation, increasing weight, dry skin, and pain. Yes pain. Any patient with fibromyalgia must be seriously considered for a trial of thyroid replacement.

[Celeste’s side note]: “How does Hypothyroidism, Hypometabolism, Hashimoto’s and Thyroid Resistance Relate to Fibromyalgia of Chronic Fatigue Immunodysfunction?”

http://fmcfstriggerpoints.blogspot.com/2011/02/what-are-hypothyroidism-hypometabolism.html

Optimal thyroid replacement requires the prescription of both T4 and T3. Traditional medicine normally only prescribes T4. This must be converted to T3 to be active. T4 is a storage hormone and exerts no effect on its own. In patients with fibromyalgia this conversion may be sub-optimal and they will fail to benefit from T4 alone. T3 is best given as a slow release capsule dispensed from a compounding pharmacy.

With all the other hormones described above there are no serious problems with regard to side effects. With thyroid replacement it is important to know that too much thyroid hormone can cause palpitations. This problem can be minimized by taking high dose magnesium, together with a good quality multivitamin. It is also important to be careful about using other stimulants such as coffee. This should only be prescribed by a physician skilled in bio-identical HRT.

DIET
If you have fibromyalgia then your diet needs to be as non toxic as possible. The symptoms of fibromyalgia are emanating from widespread myofascial trigger points. To decrease the sensitivity of these trigger points we need to provide a clean, low allergy, high nutrient diet. Your diet should be organic as much as possible.

Dairy

I recommend removing all normal dairy produce from the diet. Normal dairy is genetically A1, a type of protein found in milk. The A1 cows produce milk containing the A1 beta-casein. After digestion this liberates a fragment called beta-casomorphine-7 (BCM7), a powerful opioid (narcotic). It is an oxidant, the opposite of antioxidant, and therefore acts as a free radical to damage tissues. From research beginning in 1993 it is now implicated in many illnesses, including heart disease, Type 1 diabetes, autism, and a range of auto-immune diseases.

The new A2, also a type of protein found in milk, is non allergenic. This milk has been available in Australia and New Zealand since 2003, and can now be found at select locations in the US. Goats and sheep milk and yoghurt and cheese are all A2 and can be consumed safely.

In New Zealand, the dairy farmers are secretly converting their herds to the A2 genotype. This takes about 10 years to complete. In 20 years time we may look back and see that this staple food we have been encouraging our children to eat has been one of the main causes of illness in our society.
If you have fibromyalgia you do not want A1 milk in your diet.

For further detail, I thoroughly recommend the book, Devil in the Milk by Thomas Cowan, MD.

[Celeste’s side note] Well folks, I Google searched this and it appears Hy-Vee Grocery in the Midwest is the only store that sells A2 milk. I suggest you do an on-line search on A2 milk and the benefits to those with allergies and gut problems, and see if you can find a distributor near you.

Gluten

The next most important food intolerance to consider is gluten. Gluten is the protein in grains, bread, cereal, and pasta. Gluten intolerance is common and it is the great mimicker of the 21st Century. It can mimic any illness. Any patient with fibromyalgia must be considered gluten intolerant until confidently excluded by a trial and challenge.

Traditional medicine describes celiac disease as true gluten intolerance and looks with suspicion on all those other alternative thinkers who talk about their gluten sensitivity. Traditional medicine uses a blood test for antibodies to gluten and endoscopy to take a sample of bowel lining to confirm or deny the existence of celiac disease. In my experience very few people have true celiac disease but many are intolerant to gluten.

[Celeste’s side note] The following is so commonsensical, if you don’t do anything else, DO THIS! This approach will give YOU control in your treatment. I am asked all the time, is there something I can do in my diet? Well, here you go.

The best way to test this is to eat a diet totally free of gluten for 3 weeks then challenge over 2 days by eating as much gluten as you can. If you are gluten intolerant you will have a very large reaction when you challenge.

If your challenge is negative, meaning it produces no aggravation of your symptoms, theoretically, you can bring gluten back into your diet. However, gluten foods are all foods that convert quickly to glucose and are therefore not good foods in the first place, so you will be healthier without them.

Sugar

The third most important item is sugar. Sugar is a poison. It contributes to leaky bowel syndrome and thus allows large allergenic molecules to pass through and set up auto-immune illness. Fibromyalgia is an autoimmune illness.

[Celeste’s side note] A great alternative to sugar and artificial sweeteners is honey. If you can get your hands on locally produced honey, all the better. Local pollen is carried by bees during pollination and may help desensitize you to allergens, boost your immune system, and decrease your need for antihistamines. The pitfalls and comorbid conditions regarding a high glycemic index diet are discussed in the book.

*caution: Because allergens are in amounts sufficient to desensitize the adult, honey can be toxic to an infant with allergies.


Increasingly it is documented that if you can keep your insulin levels consistently low then you will enjoy the optimal level of health. Thus you need to avoid all foods that quickly convert to glucose, and this includes the gluten foods.

The diet I recommend, and the diet I eat myself, is as follows.

Breakfast

For breakfast a protein shake is best. I recommend a specific product “The Sun Warrior” brand protein (contact www.sunwarrior.com to find your local distributor in the USA). This is made from bio-fermented raw sprouted whole grain brown rice, and sweetened with Stevia ®. There are no artificial chemicals and no sugar. Please note I have no financial connection to this company apart from retailing their product through my clinic.

Make up a shake in a blender with the powder alone or add a banana and/or frozen blueberries if desired. As a general rule one scoop per day is sufficient for a sedentary person. This can be increased to 2 or 3 scoops as your exercise levels increase.

An alternative to this would be a cooked breakfast, such as, an omelet.

The rest of the day

Eat normal food; red meat, chicken, sea food, vegetables, salad, nuts, seeds, fruit. If you get hungry, have another protein shake. This is a low allergy, low sugar diet. It is what I eat and I have plenty of energy. I am 66 years of age, work out at the gym 3 times per week, do my clinical work Monday to Friday, and spend time at the computer on the weekends. It works for me!

If you have fibromyalgia it important you consider this type of healthy eating.

NUTRITIONAL SUPPLEMENTS

Even if you are eating a totally organic diet including your meat, chicken, and fish, you are still exposed to all the pollutants in the environment. You will benefit from good quality nutritional supplements.

There are 2 groups of supplements. There are those that are necessary to build the foundations of your health. These are high dose B vitamins, magnesium, zinc, selenium, C, E, D, other trace minerals, and omega 3 fatty acids. Then there is everything else. I call this group the “add ons”. This includes all the many things marketed as the best thing for your health; spirulina, Gogi berries, acai berries, etc. these are all beneficial but are of little use unless you have first laid down the foundation.

Over the nearly 20 years of practicing nutritional medicine I have tested many different combinations. I have settled on the Usana brand as the world’s best. I state here that I am not distributor of this product. I do retail the product through my clinic and if you wish to have this distributed to your home you can contact my wholesaler Vitaly and Jenny Orban at jenovita@bigpond.com

If you begin with the Usana Essentials supplement you will have all the items needed to build the foundation for your program. If you add the Usana Biomega, then you will have good quality clean omega 3 fatty acids. For fibromyalgia patients, I would also recommend Cal Plus. This is a high dose calcium and magnesium tablet. If you take T3 and T4, I would definitely add Cal Plus.

If you do not want to purchase the Usana brand, try to get the highest dose multi containing the items noted above.

[Celeste’s side note] Because you should take thyroid medication on an empty stomach, and some vitamins and supplements, particularly calcium and magnesium, can interfere with absorption, either wait four hours or switch to taking your thyroid medication at night.

PHYSICAL THERAPY

When all the above items are attended to, then you are ready for physical therapy. The best therapy is the local anesthetic injections by a skilled doctor. The next best is the use of acupuncture needles to release trigger points. This is usually called dry needling or intramuscular stimulation. If you cannot find therapists with the above techniques then the next best therapy is good old fashioned deep tissue massage. This needs to begin gently and gradually increase in intensity as you heal. This will take a very long time. But if you correct the perpetuating factors I have noted above, then weekly massage over many months should see gradual recovery.

[Celeste’s side note] Here in the US other modalities may be available to you, which include myofascial trigger point therapy, myofascial release, and active release therapy (ART). Specialists you might want to consider for treatment are physical therapists, physiatrists, sports medicine physicians, chiropractor’s, and pain management physicians trained to treat myofascial trigger points. I have not been able to convince pain management doctors in my care to leave out the steroids, which have not been shown to be of any greater benefit in the FM patient, limits the number of trigger points (TrPs) that can be treated and can cause trigger points to calcify. That is why I see a sports medicine physician that understands fibromyalgia and myofascial trigger points. However, even she will not treat more than 5-7 TrPs at a time and will not inject those in the neck, which are a primary source of dysfunction.

SUMMARY

1. Begin Bio-identical HRT. Look in the telephone book for Compounding Pharmacists in your area. They will give you a list of the doctors that send them prescriptions. These should know how to prescribe your bio-identical hormones. I prefer the use of a troche rather than the creams. A good starting point is for a woman is a troche with progesterone 200 mg, taken a ¼ twice daily. For perimenopausal and menopausal women I would add Biest 1mg, and if the blood tests showed low normal range testosterone and DHEA, I would add DHEA 25 mg and testosterone 4 mg. This is a perfectly safe mixture and you can take this all your life. (disclaimer: in this litigation conscious age I state that taking BHRT will not totally eliminate the chance of developing breast cancer, or having a heart attack or stroke, but there is good evidence to suggest it will reduce your chances of these conditions. You must read the evidence and make your own decision)

For thyroid replacement a safe beginning would be T4, 50 mcg per day and T3 in a slow release capsule 10 mcg per day. You will need to find a doctor to monitor this.

2. Eliminate dairy, gluten, and sugar from your diet.

3. Remove all root canal fillings and amalgams. Follow the links on the site www.robertgammal.com to find an alternative dentist near you.

4. Ideally begin Usana Essentials and Biomega.

5. Begin physical therapy.

[Celeste’s side note] In the United States, we are split between seeing a rheumatologist that only looks at the centralization of fibromyalgia, and someone to treat myofascial trigger points. This is grueling, disconnected, and lacks continuity of care. Australia is lucky to have Dr. Whiteside, who is taking into account all aspects of fibromyalgia, the centralization, effects on the immune system, treatment for myofascial trigger points AND therapies that address each person individually.

Learn more about Dr. Whiteside at http://www.myomed.com.au/ and be sure to click on the download button and watch the video in the supplements link.

Celeste's Website

Celeste's Website
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