Pain Awareness Month Draws to a Close - A Recap by Celeste Cooper

September is a busy month for me as advocate, author, educator, and as a person living with chronic pain and illness. It is the month to raise awareness for the other 100,000+ million Americans, and countless others around the globe. And to hopefully change attitudes of discrimination and judgment that threatens our self worth. A time to fight for proper treatments that result in improved outcome.

The Sun is located on the vernal equinox, daylight and dark are equal, and autumn begins. For me, fall marks a time not only to advocate, but to educate my comrades in pain through my blog and through Fall Devotions in our Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain seasonal book series. Personally, I celebrate fall with an annual weekend get together with my healthcare colleagues. We have done this for over thirty years and I have only missed once. To say I embrace our need for socialization, regardless of obstacles, is an understatement. And when I need reminders on how to care for myself, those who share this trek with me, many who are our readers, wrap me in their virtual loving arms.

“Come along, it is time to begin our journey as we walk through the beautiful falling leaves that fill our path with color and diversity. Be prepared to kick up new ideas that come from this season grabbing at those of personal interest, those that entice you to learn more. Decorate your life with vast opportunities that autumn offers. Feel the crisp clean air as it fills you up, and prepare for the bounty you will soon discover.”

Excerpt from the introduction to Fall Devotions.

This is a season of time and energy which threatens to drain me because of chronic migraine and spinal disease, which flare FM and CFS and the autoimmune comorbid disorders I endure. But fear not, it is also a season of vigorous collaboration. The rewards of being a catalyst, a change agent, cannot  be measured. The value is found in humankind giving reason to advocate and educate. Here are the blogs written by me this September.

• Part One - A Look Back and Look Up: Could history be a guidefor treating chronic pain?
• Part Two – Chronic Pain in the Present – The Question byCeleste Cooper
• Part Three – The Future for Treating Chronic Pain by CelesteCooper
• Is the prevalence of joint hypermobility purely acoincidence in CFS and FM? by Celeste Cooper

I am continually lifted up no matter how bleak one day may seem, because there is another in the past or the future that is sure to adjust my perspective.

“I cherish my friends because we stand together 

heading in the same direction.”

Go in strength my friends.

~ • ~ • ~ • ~ • ~ • ~

Update as of April 2015

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

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

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

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.

Website: http://www.TheseThree.com

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

Is there a therapy for you? The role of treatments in chronic pain by Celeste Cooper

Body-work is important to the health of muscles that are dysfunctional, such as seen in myofascial pain syndrome. Myofascial pain syndrome  (MPS) is thought by many experts to be a main peripheral pain generator in most chronic pain conditions.  Chronic myofascial pain from sustained, untreated, or undertreated myofascial trigger points (knotted up pieces of muscle fiber that can be easily felt unless the muscle involved is too tight, too deep, or behind bone) is thought to be kept in perpetuity by the metabolic and autonomic effects of both FM and ME/CFS, meaning it makes treatment more difficult to sustain than it does in other patient populations.

Until myofascial trigger points are treated and muscle fiber is returned to its normal resting length, a sustained hold of the muscles involved, whether it be through Yoga or prescribed by a physical therapist, will not only discondition the muscle, it can create more pain and further development of MTrPs.  This is because the muscle has already reached its maximal capacity of stretch when trigger points are involved. More pain and dysfunction should not be the goal of therapies, but some do not realize they are doing more harm than good because they do not understand the pathophysiology behind trigger points. These same recommended therapies are helpful on down the road AFTER the muscle is returned to its normal state. We must educate those who treat us. We talk more about this in the next edition of Broken Body Wounded Spirit: Balancing the See-Saw of Chronic Pain, Spring Devotions, and our BIG book (here)  is devoted to understanding the role of chronic myofascial pain from trigger points in both FM and ME/CFS.  

Optimally, we need someone standing beside us using trigger point pressure and stroking the MTrPs as we move the muscle through its range of motion in order to coax the muscle back to its normal resting length. This is the theory behind Active Release Therapy, and though MTrPs are not addressed specifically in Feldenkrais Movement Therapy,  Alexander Technique, and Craniosacral Therapy, these therapies do help with restrictions found in skeletal muscle and connective tissue.  Spray and Stretch, Myofascial Release, and Myofascial Trigger Point Therapies are massage-like therapies .  

Addressing perpetuating factors with body work is done in Ashton Patterning, and Trager Work and an important part of prevention. Therapies for addressing the mechanical and emotional aspects of body-work are Hellerwork, T'ai Chi, Yoga, and Rosen Method.  The success or failure of each therapy is dependent upon patient dedication, education, and a therapist who is skilled in communicating with our body.  

All these therapies, including self treatment, are discussed at length in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and throughout the Broken Body, Wounded Spirit series. Read more about the books here. 

My New Year’s resolution is to educate others on the myofascial and its role in chronic pain. Many of these therapies are not covered by insurance. However,we have evidence based research to show that body-work treatments are more effective than medications and other invasive treatments in treatment of soft tissue dysfunction as the result of a musculoskeletal problem. We need  to move integrative therapies into mainstream. If we can convince Medicare, Medicaid and private insurance companies that therapies such as these are more cost effective, we have a chance.

For now, some of the therapies can be costly. Most of us with disabling chronic pain have limited financial resources, myself included. For this reason, I believe self care through the use of tennis balls, a Theracane, mechanical massagers, rolling pins, swim noodles, Yoga balls and practicing gentle movement and stretch therapies are good alternatives. 

You can find helpful links on my website here. 

~ • ~ • ~ • ~ • ~ • ~

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

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com

Are Your Power Lines Down: Sensitivity of Neuro-Endocrine-Immune Disorders

It's not enough that we hurt interrupting sleep and other important activities, but with fibromyalgia and chronic fatigue syndrome, we know our brain is on hyper alert for different reasons, but sensitive all the same.  This puts us at risk for sensitivity to light, sound, household chemicals and odors, cold, heat, and even some medications.

Particularly troublesome are those things in our environment that we have little to no control over, which has an effect on many neuro-endocrine-immune disorders

We can’t live in a dark room all day every day.  Recommendations are that we spend about 20 minutes a day in sunlight, a great source of vitamin D, which is low in some patients.  After other causes of photophobia (light sensitivity) have been ruled out, we should protect our eyes with dark polarized sunglasses with UV protection. Even snow can be a source of irritation, so wear your sunglasses or a wide brimmed hat year round. Light sensitivity, is also common in migraine so these precautions could help prevent a migraine attack too. If ambient light or a computer screen is a factor for you, a lighter tinted glass you can wear all the time may help.

Sound sensitivity (hyperacusis) or misophonia (sensitivity to certain sounds) is another matter, and it seems not only sound and tones, but several people talking at one time can be irritating.  Tinnitus, ringing in the ear, may also play a part for you, and is sometimes caused by the presence of myofascial trigger points of myofascial pain syndrome. Total avoidance may not be possible because it is important to spend time with others to combat isolation, but we can identify and avoid certain known toxic noise situations.  Carrying ear plugs for those times when you have one nerve left and noise/sound/music is unbraiding it may be helpful.  Try to keep your environment as chaotic free as possible. There are auditory retraining therapies available so you may need a referral to a specialist.

If light and sound sensitivity causes a great deal of anxiety, discuss this with your doctor, there may be a medication or supplement that can help. Deep breathing, Qi Gong, mindfulness therapy, and meditation have been scientifically proven to lower our hyper alert response.

Multiple chemical sensitivity (MCS) is best treated by first identifying offensive environmental chemicals and medications.  Once the culprit/s is identified, the best solution is avoidance.  Unfortunately, this is not always possible.  Discuss particular aggravating factors with your doctor to explore treatment options

Talk to your doctor about your sensitivities so he or she can work with you to come up with an effective treatment plan.

In healing and hope, Celeste

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

Want to know more about Celeste’s books?  (click on the title)

Broken Body Wounded Spirit: Balancing theSee Saw of Chronic Pain. (co-author, Jeff Miller, PhD)

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

We are on the edge and it’s not glory, FM and CFID/ME, symptoms and coding.

Follow this link for blog content.

http://www.sharecare.com/user/celeste-cooper/blogs

Getting the Most from Yoga when

Follow my blog at Sharecare

http://www.sharecare.com/user/celeste-cooper/blogs/show/should-your-arsenal-for-fighting-chronic-pain-include-ultrasound-and

Healing, harmony and hope, Celeste

Which Came First, the Cart or the Horse? FM and immunity.

See Sharecare http://www.sharecare.com/user/celeste-cooper/blogs/show/which-came-first-the-cart-or-the-horse-fm

What and Why: The role of complimentary therapies for improving fibromyalgia symptoms

Fibromyalgia is a centralization disorder, which means it begins in the central nervous system which has become easily over stimulated. We also know from many studies that what we think does affect the way our brain processes information. There are many good techniques that teach you how to calm our mind, and thereby lower blood pressure, heart rate, and the release of cortisol. Also important is addressing myofascial pain syndrome (AKA chronic myofascial pain) which is now known to be a common comorbid condition.

Addressing centralization, changing the way the brain thinks.

Anyone who has practiced biofeedback understands how our thoughts have the ability to change the way our body reacts. Because cortisol is already altered in FM, stressful emotional, mental, spiritual, or even physical events put us at higher risk for an upset in cellular metabolism putting micro-healing in jeopardy.

Mindfulness, creative visualization, guided meditation, biofeedback, Qi Gong, Yoga, and T’ai Chi (discussed in length in Chapter 5 of our book “The Power of Mind, Body, and Spirit”) are all good ways of learning how to turn down the volume on your stress meter. Identify known stressors and try to particularly avoid them when you are having a flare in symptoms.

The role of the myofascial and what can be done about it

If you have MPS/CMP, and most FM patients do, you have knotted up pieces of muscle fiber that shorten the muscle, radiate pain and cause dysfunction of the muscle. The only thing that will treat a myofascial trigger point (MTP) is direct stimulation. Bodywork in the form of MTP injections, specific MTP pressure therapy, active release therapy, and myofascial release are indicated. Some find TEN’s units effective in blocking the pain impulse from these significant peripheral pain stimulators.

Read more:

This blog is based on the question “What alternative therapies help with physical symptoms of fibromyalgia?” Visit my profile as expert, where you will find answers to many questions.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

Author of Chapter Five, Living with and Coping Effectively Through Fibromyalgia: Detecting Barriers, Understanding the Clues, in Fibromyalgia Insider Secrets: 10 Top Experts, 2nd Ed. Ebook complied by Deirdre Rawlings, ND, PhD

December '11 Blogs for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain

Following is a recap of my blogs on FM and CFID (ME/CFS) at both my profile as expert for Dr. Oz on Sharecare, and blogger. Please feel free to disseminate the information as you see fit for the better good of all FM and ME/CFS patients. In healing, harmony and hope for awareness.

A years worth of blogs can be found in the archives of the right column at Google Blogger. There might be something of particular interest there for you.

December 2011
These Three, Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain.

In a word – What we know about terms and fibromyalgia
http://www.sharecare.com/user/celeste-cooper/blogs/show/in-a-word-what-we-know-about-terms-and
http://fmcfstriggerpoints.blogspot.com/2011/12/in-word-what-we-know-about-terms-and.html

Ironic, the P in Substance P: The Relationship of Pain in Fibromyalgia
http://www.sharecare.com/user/celeste-cooper/blogs/show/ironic-the-p-in-substance-p-the-relationship-of-pain
http://fmcfstriggerpoints.blogspot.com/2011/12/ironic-p-in-substance-p-relationship-of.html


Ups and Downs; unpredictability of FM and CFID. How can I avoid a flare?
http://www.sharecare.com/user/celeste-cooper/blogs/show/ups-and-downs-unpredictability-of-fm-and-cfid-how-can
http://fmcfstriggerpoints.blogspot.com/2011/12/ups-and-downs-unpredictability-of-fm.html


Nerve to Muscle and the Role in Fibromyalgia
http://www.sharecare.com/user/celeste-cooper/blogs/show/nerve-to-muscle-and-the-role-in-fibromyalgia
http://fmcfstriggerpoints.blogspot.com/2011/12/nerve-to-muscle-and-role-in.html

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice

Cravings of and Staving off the Yeast Beast: Is diet assessment in order?

The risk of candidiasis (yeast) overgrowth in Fibromyalgia and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is high.

THE WHY
Yeast is a fungi, and a certain amount is considered normal. It provides a natural flora in the mouth, skin, intestinal tract, and vagina, but when it overgrows, it can become the Incredible Hulk and cause a variety of infections.

Intestinal yeast overgrowth has been linked to small bowel bacterial overgrowth (SIBO). The symptoms of excessive gas, bloating, abdominal pain, and altered bowel habits are well known to the fibromyalgia and ME/CFS patient.

Thrush is an overgrowth of yeast in the mouth.

Insulin resistance and some medications (particularly antibiotics that knock out the normal growth environment of healthy amounts of yeast) may perpetuate yeast or leaky gut.

Yeast infections are exacerbated by excessive and unbalanced intake of sugar and carbohydrates causing bloating, brain fog, abdominal complaints, and the muscle aches connected with fibromyalgia and chronic myofascial pain. And chronic candidiasis syndrome has been identified as a possible trigger of chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS).

IS SOMETHING IN MY DIET PUTTING ME AT RISK?
The answer is YES, though our bodies do require some sugar and carbohydrates for cellular energy and brain function, excessive intake increases the risk of developing yeast overgrowth, particularly those who are immune compromised.

Sneak Peek from “Managing Your Diet,” Chapter Four, “My Body is Matter and it Matters”©

“The way food is converted, used, and stored depends upon the body’s metabolism. Sugar and complex carbohydrates trigger insulin release from the pancreas into the blood. Insulin plays a major role in carbohydrate metabolism and helps regulate the way our bodies utilize carbohydrates, lipids (fats), and amino acids (protein element) for cellular energy.” (Cooper and Miller, pg. 191)

WHAT CAN I DO?
Probiotics are recommended by specialists of the gastrointestinal tract, and eating yogurt with live cultures help maintain the natural flora. Equally important is a balanced diet, (discussed at length in Chapter Four, “My Body is Matter and it Matters.”)

See what Dr. Oz has to say at ShareCare, on daily protein intake. You will receive some great advice for taking control of some of your symptoms.

Related blog “SIBO, Yeast & Leaky Gut and YOU!



Resources:

D. W. Acheson and S. Luccioli, “Microbial-gut interactions in health and disease. Mucosal immune responses,” Best Practice & Research Clinical Gastroenterology 18, no. 2 (2004): 387–404.

R. E. Cater, 2nd, “Chronic intestinal candidiasis as a possible etiological factor in the chronic fatigue syndrome,” Medical Hypotheses 44, no. 6 (June 1995): 507–15.

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

R. S. Ivker and T. Nelson, Arthritis Survival: The Holistic Medical Treatment Program for Osteoarthritis (New York: Jeremy P. Tarcher, an imprint of Penguin Group, Inc., 2001).

T. Hung, J. L. Sievenpiper, A. Marchie, C. W. Kendall, and D. J. Jenkins, “Fat versus carbohydrates in insulin resistance, obesity, diabetes and cardiovascular disease,” Current Opinion in Clinical Nutrition & Metabolic Care 6, no. 2 (2003): 165–76.

Mehmet Oz, What Should Be My Required Daily Protein Intake? (accessed 9-7-11).

Devin. J. Starlanyl and Mary. E. Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual (Oakland, Calif.: New Harbinger Publications, Inc., 2001).

How do I manage fibromyalgia on a daily basis?

This question is based on my original answer as fibromyalgia expert at ShareCare.com. View other answered questions on my profile at
http://sharecare.com/user/celeste

Managing fibromyalgia is multidimensional.

Having helpful tools and knowing what to report to your doctor is important. Having a guide to keep us on track is helpful. Also helpful are having terms to describe your pain, understanding what the doctor needs to know about your health history, and knowing how to communicate with your doctor or healthcare provider. Keeping a medication log, a symptoms inventory sheet, evaluation of treatments and medications, etc. are all important to the patient with FM. (All available in our book).


But, there are other aspects to managing fibromyalgia too, such as learning about what fibromyalgia is, developing communication skills with others, and accepting through journaling. It is also important to learn diversion skills to take your mind away from the pain and fatigue. You can learn to do this on your own, develop new hobbies in-line with your new life, or if you need more help like I did, therapy and biofeedback.

There are many therapies and therapists helpful in managing FM. Our book has a complete list with definitions, the types of therapies and treating physicians, and how to find the right therapy and therapist for you.

Managing FM is a 24/7 job. Explaining it in just a few paragraphs is difficult. I started our book as a way of my personal coping. It started with one entry in my journal, “write a book.” Later I was joined by my then therapist and I believe we have a comprehensive guide to managing FM. You are welcome to see the contents at http://www.thesethree.com/fibromyalgia/fibromyalgia-book-content.php

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press

Thursday May 26th Teleconference on Myofascial Trigger Points

In honor of Fibromyalgia Awareness Month, I have been invited to speak on myofascial pain in fibromyalgia. The agenda will include myofascial trigger points, their involvement in fibromyalgia, symptom referral patterns, why it is important to understand more about these peripheral pain generators specifically in FM, what they are, the different types, perpetuating factors, treatment, and self care.

Title: Teleconference: Celeste Cooper on Myofascial Pain
Date: This Thursday, May 26, 2011
Time: 11:00am Pacific; 2:00pm Eastern; 1:00pm Central; 12:00pm Mountain
This is a Phone + Web Simulcast

To call in dial (503) 290-5016 PIN Code: 783111#

To visit live on the web: http://InstantTeleseminar.com/?eventID=19942302
Sponsor: The Oregon fibromyalgia Support Group
Moderator: Tamara Robinson Staples.

Hope to see you there.

Harmony and Hope, Celeste, author
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome,, and Myofascial Pain (co-author, Jeff Miller, PhD)

RESOURCES for the presentation:

Ashkenazi A, Blumenfeld A, Napchan U, Narouze S, Grosberg B, Nett R, DePalma T, Rosenthal B, Tepper S, Lipton RB. Peripheral nerve blocks and trigger point injections in headache management - a systematic review and suggestions for future research. Headache. 2010 Jun;50(6):943-52. Epub 2010 May 7.

Cakit BD, Taskin S, Nacir B, Unlu I, Genc H, Erdem HR.Comorbidity of fibromyalgia and cervical myofascial pain syndrome. Clin Rheumatol. 2010 Apr;29(4):405-11.

Chen Q, Bensamoun S, Basford JR, Thompson JM, An KN.Identification and quantification of myofascial taut bands with magneticresonance elastography. Arch Phys Med Rehabil. 2007 Dec;88(12):1658-61.

Explore Plastic Surgery - Dr. Barry Eppley
The Importance Of Patient Selection in Migraine Surgery http://exploreplasticsurgery.com/category/migraine-headaches/

Fernández-de-las-Peñas C, Galán-del-Río F, Fernández-Carnero J, Pesquera J,
Arendt-Nielsen L, Svensson P. Bilateral widespread mechanical pain sensitivity in women with myofascial temporomandibular disorder: evidence of impairment in central nociceptive processing. J Pain. 2009 Nov;10(11):1170-8. Epub 2009 Jul 9.

Ge HY.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, Arendt-Nielsen L. Latent myofascial trigger points. Curr Pain Headache Rep May 11 [Epub ahead of print]

Ge HY, Fernandez-de-Las-Penas C, Yue SW, Myofascial trigger points: spontaneous electrical activity and its consequences for pain induction and propagation. Chin Med. 6(1):13, 2011.

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, Serrao M, Andersen OK, Graven-Nielsen T, Arendt-Nielsen L.Increased H-reflex response induced by intramuscular electrical stimulation of latent myofascial trigger points. Acupunct Med. 2009 Dec;27(4):150-4.

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.

Ge HY, Wang Y, Fernandez-de-Las-Penas C, Graven-Nielsen T, Danneskiold-Samsøe B, Arendt-Nielsen L. Reproduction of overall spontaneous pain pattern by manual stimulation of active myofascial trigger points in fibromyalgia patients. Arthritis Res Ther. 2011. 13(2):R48.

Ge HY, Zhang Y, Boudreau S, Yue SW, Arendt-Nielsen L. Induction of muscle cramps by nociceptive stimulation of latent myofascial trigger points. Exp Brain Res. 2008 Jun;187(4):623-9. Epub 2008 Mar 4.

Giamberardino MA, Affaitati G, Fabrizio A Costantini R. Effects of Treatment of Myofascial Trigger Points on the Pain of Fibromyalgia. Curr Pain Headache Rep. [May 5 Epub ahead of print].

Gerwin R. Treatment of Chronic Migraine Headache with nabotulinumtoxinA Curr Pain Headache Rep. 2011 May 6. [Epub ahead of print]

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

Li LT, Ge HY, Yue SW, Arendt-Nielsen L. Nociceptive and non-nociceptive hypersensitivity at latent myofascial trigger points. Clin J Pain. 2009 Feb;25(2):132-7.

Myburgh C, Lauridsen HH, Hartvigsen J. Standardized manual palpation of myofascial trigger points in relation to neck/shoulder pain; the influence of clinical experience on inter-examiner reproducibility. Man Ther. 2010 Aug 31. [Epub ahead of print]

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.

Partanen JV, Ojala TA, Arokoski JP. Myofascial syndrome and pain: A neurophysiological approach. Pathophysiology. 2010 Feb;17(1):19-28. Epub 2009 Jun 4.

Shah JP, Danoff JV, Desai MJ, Parikh S, Nakamura LY, Phillips TM, Gerber LH. Biochemicals associated with pain and inflammation are elevated in sites near to and remote from active myofascial trigger points. Arch Phys Med Rehabil. 2008 Jan;89(1):16-23.

Shah JP, Gilliams EA. Uncovering the biochemical milieu of myofascial trigger points using in vivo microdialysis: an application of muscle pain concepts to myofascial pain syndrome. J Bodyw Mov Ther. 2008 Oct;12(4):371-84. Epub 2008 Aug 13.

Sikdar S, Shah JP, Gilliams E, Gebreab T, Gerber LH. Assessment of myofascial trigger points (MTrPs): a new application of ultrasound imaging and vibration sonoelastography. Conf Proc IEEE Eng Med Biol Soc. 2008;2008:5585-8.

Xu YM, Ge HY, Arendt-Nielsen L. Sustained Nociceptive Mechanical Stimulation of Latent Myofascial Trigger Point Induces Central Sensitization in Healthy Subjects Man Ther. 2010 Aug 31. [Epub ahead of print]

Zhang Y, Ge HY, Yue SW, Kimura Y, Arendt-Nielsen L. Attenuated skin blood flow response to nociceptive stimulation of latent myofascial trigger points. Arch Phys Med Rehabil. 2009 Feb;90(2):325-32.

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.

Chronic Pain Thoughts, Tidbits, and Insight: Response to an article

THIS WAY IN: How to Use Pain Meds Safely
Neurology Now
February/March 2011; Volume 7(1); p 10–11,15
VALEO, TOM

http://www.aan.com/elibrary/neurologynow/?event=home.showArticle&id=ovid.com:/bib/ovftdb/01222928-201107010-00005

Click on Download article, PDF or view each hyperlink

This is a good article on the benefits and pitfalls of opioids. I believe, opioids should be considered for treatment of pain with medications, especially when other treatment modalities have failed. I have to disagree that doses must be elevated due to tolerance, because some research shows that is not true for all people. Antidepressants and anti-seizure medications are also abused and people die from them, but we don’t hear about these cases because BIG pharma somehow keeps these incidents undercover. The FDA doesn’t go after the data on incidents regarding these type of medications. Most of what we hear is what can be sensationalized by reporters. Reporters want headlines that sell. The political money band plays on.

Any medication/drug taken for a reason other than intended is abuse. Improving function is the goal, obtaining enough pain relief to participate in myofasical therapy, get out of a chair, bathe, comb your hair, put on makeup, smile at yourself in the mirror, participate in the day, and interact with family and friends without having to painfully force air over the vocal cords in an effort to talk.

The Pain Patient (Pseudo-addiction) (Cooper and Miller, pg.171-172)

*Medications improve their quality of life. They are in control of their medications.
*The pain patient will want to decrease the medication if side effects are present.
*The pain patient is concerned about physical problems.
*The pain patient follows the contract for the use of opioids. (Pain specialists
will most likely have you sign a contract with them stating that you will follow
their prescribing instructions.)
*The pain patient will have medication left over.

The Addict

*The medications cause a decreased quality of life. An addict is out of control with
medication.
*The addict will want to continue medication regardless of side effects.
*The addict is in denial.
*The addict doesn’t follow the contract for the use of opioids.
*The addict doesn’t have medication left over. Addicts lose prescriptions and always
have a story.

The preceding lists are an excerpt from Fibromyalgia Network, April, 2001, based on Dr. Heit’s work at the Georgetown University School of Medicine (2001) and Dr. Heit’s presentation, “Opioid Prescribing: An Update on Clinical, Ethical and Legal Guidelines” from the Journal of Law, Medicine & Ethics, 22(3) 252–56, (Fall) 1994.

The laws currently written are to protect us, however, the shenanigans of drug seekers and physicians who feed their habit to make a dollar, helping them rid their addiction, keeps the patient in debilitating pain, wallowing in misery and emotionally handicapped. And then they have the gall to insinuate we are to blame for our pain state.

On the other hand, more patient education regarding the pitfalls of opioid therapy is needed. With conditions such as ours it takes a multimodal treatment course to feel better. When our pain in not under control it is impossible to tolerate treatments and activity known to help. It is unreasonable for us to expect, even with pain meds, to be pain free. It is not, nor should it be the main goal. What we need from any of our medications is enough relief to participate in activities and treatments. We are entitled to have enough pain control to avoid the snare of a hypersensitive state, which will keep our brain in a constant wind up. Once this wind-up phenomenon takes place, it takes twice the effort to bring the pain response back under our watchful supervision. We know, or should know, what aggravates our pain (Chapter 2 – Communicating Your Healthcare Needs, pgs. 65-132). It should be up to us to decide what enough is and what too much is. The road to a more productive life is paved with pain medications that afford us the opportunity to move, one step at a time. The golden brick is that one with the face of, movement, thought, physical therapies and emotional support engraved with your name.

A course of treatment that has worked for some is a tapered opioid vacation every couple of months for about a week, so the body doesn't get used to craving more and more. They are called mini med vacations and are supplemented with other meds to help and it is supervised and administered by a qualified physician. More studies need to be done on this because my biggest fear is that we don’t know the end place on opioid dosing until it is too late. Why take unnecessary risk? I understand pain only too well, but as most of us who have been on opioid therapy will tell you, it never takes the pain completely away, and still allows you to get up and move about. We must participate and have our own plan. We need to be empowered. And, we need control over what medication helps us. If the government continues to walk hand and hand with pharmaceuticals, one day our rights pain relief, will be completely stripped. As honest chronic pain patients we need to take this responsibility seriously.

I understand that what works for me, may not work for someone else. For me, it is about balance of spiritual, mental, physical and emotional, collaboration with my healthcare provider, and acceptance. I like to think that because of chronic life altering pain, I have learned the importance of appreciating days I might otherwise take for granted.


I think the alternative drugs, the Savellas, Lyrica, Cymbalta come with their own package of unwanted side effects and alter the brain chemistry and interact with many other medications we take for comorbid conditions such as migraine and IBS. The pharmaceutical industry has financial and political power beyond our comprehension. If a patient ONLY needs one medication and these class of drugs work for them, I am all over it. It is about improving function, but it should be our option, not something dictated to us by our government, putting themselves between the patient and the physician for profitability.

Give us the right to choose what is best for us. Let us have the medication that promotes enough pain relief so we can participate in trigger point therapies, Yoga, T’ai Chi, acupuncture, myofascial release, active release therapy, or even a light massage. Shouldn’t that be a right, not a privilege?

We are intelligent people here. Our goal is to feel well enough to wake up to a bright day. We must not ignore the pitfalls of opioid use, but we have proven over and over again that the pain patient is NOT going to abuse their medications. If one man steals in a community does that mean it is a community of thieves? Even if I do start to abuse my opioid, one in ten will, can’t you inform me of this possibility? Will you offer a remedy for me so that I may live one day with manageable pain? We admit we need to be better educated in what can happen with escalating doses and medication interactions. THAT is what the physician should be giving us when we are on opioid or any medication therapy. If they cannot provide that information for us, then they need to make appropriate referrals.

Harmony and Hope, Celeste

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

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!

http://www.CelesteCooper.com

Resources:

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

(2) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain: A Survival
Manual, 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):
507–15.

(4) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain: A Survival
Manual, 296.

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

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. http://en.wikipedia.org/wiki/Naturopathy

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.
http://www.facebook.com/topic.php?topic=17918&uid=345295878606


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)
NIAMSinfo@mail.nih.gov

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.

http://fmcfstriggerpoints.blogspot.com/2010/10/proposed-fm-criteria-letter-nih-naims.html
or

http://www.facebook.com/pages/Integrative-Therapies-for-Fibromyalgia/345295878606?v=app_2373072738#!/topic.php?uid=345295878606&topic=17808

Sincerely,
_____________________________________________________________________


(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