KaleidoPain NEWS: Ever Changing Colors of Chronicity 8-25-12

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The KaleidoPain newsletter is for you, join in and submit one of your inspiring moments or book review's.  Make a contribution and share with others. To submit contributions put "inspiring moment" or "book review" in the subject line and email to Celeste@TheseThree.com

BALANCING THE TEETER TOTTER OF CHRONIC PAIN:

A Dose of Nature, My Marriage and Pain ©

Pain interferes with my marriage, it’s so.
I know that it will, if I don’t let go.
My marriage falls prey to struggles of pain.
The life raft is nature, says the rain.

Twenty minutes a day the experts say
So I will take my mate with me today.
Harmony the example of all that live here,
The squirrels, the leaves, flowers and deer.

Any marriage needs to feel the swift breeze,
To be nourished by nature just as the trees.
If my marriage learns to crave these things,
Worries take a backseat, even my pain.

So carry on nature, keep up the good work,
We are glad to learn from your great book.
In nature I’m able to endure pain’s course,
All of God’s creatures abhor a divorce.

This is why nature is a good place to rest,
If only a short while, it brings out the best.
Be steadfast with nature, harmony abides,
If WE take a few minutes to go outside.

Celeste Cooper,  August 18, 2012

*Tips for writing poetry in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN and Jeff Miller, PhD
*Tips for writing your own affirmations http://thesethree.com/Key_to_Affirmations.html
*Tips on journaling https://thesethree.com/Journaling.html

BLOGSPEAK BY CELESTE

A comprehensive review on the proposed and modified American College of Rheumatogy diagnostics for fibromyalgia.


What the heck is a syndrome, and are the syndromes; fibromyalgia, chronic fatigue and myofascial pain different?

HEALTHY HABITS

Do vitamins really work with Dr Andrew Weil.
http://www.drweil.com/drw/u/TIP04474/Do-Vitamins-Really-Work.html

Nutritional expert Deirdre Rawlings speaks up on How to overcome America’s most overlooked disease. In healing, harmony and hope,  Celeste Cooper contributing author to her EBook series, Fibromyalgia Insider Secrets: 10 Top Experts
http://articles.healthrealizations.com/FoodsForFibromyalgia/2012/05/21/How-to-Overcome-Americas-Most-Overlooked-Disease.aspx

Developing Healthy Habits, Southwest Wrap
http://www.youtube.com/watch?v=ZdIWlUeJcb4&feature=youtu.be

FEATURING Q and A by Celeste at Sharecare

What can I do to improve my fibromyalgia?
http://www.sharecare.com/question/what-can-do-improve-fibromyalgia

What criteria must I meet to be diagnosed with fibromyalgia?
http://www.sharecare.com/question/criteria-meet-diagnosed-with-fibromyalgia

How is my fibromyalgia affecting my thinking?
http://www.sharecare.com/topic/fibromyalgia-mental-effects

*Follow all answers by Celeste at  http://www.sharecare.com/user/celeste-cooper/answers

INSPIRING MOMENTS: Giving forward momentum a shove

Grieving Loss In Order To Heal

For most of us, only for a brief moment, you tell of your grief. We shed our tears for a while and then began our day. For me, its not only about where I am today, but about how long I've been here. Unlike some illness, when we speak of ours, it’s in terms of years not days or weeks. We all suffer at its hands, the loss of things undone, lives not lived, events missed and the days yet to come. 

Then there's the times when an event in our lives brings up painful memories, some taking us back to the time that we first got sick. We then feel as if we're right back there, in the thick of that early pain. It can be overpowering and scary, leaving us in a state of grief. We don't have to dwell on this grief, yet we must see it, feel it, and release it, each time it comes to the surface. Otherwise, it comes back the next time with reinforcements. Ignoring it doesn't cause it to go away. It only encourages it somehow.

My hope for us would be that through all of the grieving, we'll forgive ourselves for being in this place, not of our own making. In order to move forward, we must grieve our loss or we may find ourselves stuck within the walls of our illness. So grieve, cry, release and live the best life you can, for each day. Knowing, you're not alone in your brand of sorrow. We walk this path together, in order that the journey may be a bit lighter. Healing cannot begin until we let go.

Submitted by Clarissa Shepard at Fellow Travelers (Facebook)

IN THE NEWS

Chronic pain could be causing cognitive deficit.  NIH featured research by the NFMCPA.
http://www.fmcpaware.org/nih-mackey

Mysterious illness links teenage girls along S.A.'s I-10 corridor. KENS5.com News, San Antonio
http://www.kens5.com/news/ito-151467795.html

'Female' gene may be to blame for making women more prone to migraines
http://www.newkerala.com/news/newsplus/worldnews-33272.html

FEATURED ARTICLE

Augusts’ featured article is on Ankylosing Spondylitis (AS). Learn more and about its association with FM at  https://www.thesethree.com/Ankylosing_Spondylitis.html

The Dark Side of Pain: Serious Challenges We ALL Face
http://thepainjournal.wordpress.com/2012/08/23/dark-side-of-pain/#comment-90

ROLFING THE RESEARCH

July/August Research (some with comments) under Monthly Features just posted.
https://thesethree.com/Featured_Research.html

*See complete resource list from TheseThree categorized by condition and therapies 
https://thesethree.com/Resources_3379.html

BOOK REVIEW

The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, Second Edition [Paperback]by Clair Davies(Author), Amber Davies (Author), David G. Simons (Author)

Myofascial pain syndrome is a common comorbid condition to fibromyalgia. This book has timeless information and superb diagramming of myofascial trigger points, their specific pain and symptoms patterns as defined by Drs. Travell and Simons.  Treating peripheral myofascial trigger points is paramount in improving muscle function and minimizing input and amplification of pain found in fibromyalgia. As a patient, RN, author and fibromyalgia expert at Sharecare, I found this book to be particularly helpful and well illustrated, something that isn’t always easy to find.  It is a must for your massage therapist, physical therapist or any bodyworker who wants to understand how myofascial trigger points can affect the body.
Celeste Cooper, author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection.  (co-author, Jeff Miller, PhD) and fibromyalgia expert at Sharecare.

SNEAK PEEK (Cooper and Miller, Healing Arts Press: Vermont, 2010, available here  http://www.amazon.com/Integrative-Therapies-Fibromyalgia-Syndrome-Myofascial/dp/1594773238/ref=sr_1_1?ie=UTF8&s=books&qid=1267467759&sr=8-1

“The ADA and the EEOC” ©

Many people with chronic pain disorders, such as FM, CFID, and CMP, attempt to remain in the workforce in spite of their pain. What statistics do not show is how many of us do not utilize available resources, in part because we are unaware of what protections exist. (Excerpt, Chapter Seven)
Helpful Links https://www.thesethree.com/Helpful_Links_WXOJ.html#Legalities_and_Red_Tape

*You can review “about the book”  including the Table of Contents of Integrative Therapies…at  About the Books http://thesethree.com/About_the_Books_WPCN.html

NEWS for YOU!

Johns Hopkins Health Alerts takes a look at: ARTHRITIS: Knee Pain: An Early Warning Sign of Osteoarthritis

Osteoarthritis is the most common form of arthritis, affecting an estimated 27 million people in the United States. By age 40, approximately 90 percent of us have at least some signs of osteoarthritis continue reading.
http://www.johnshopkinshealthalerts.com/alerts/arthritis/Knee-Pain-Early-Warning-of-Osteoarthritis_6254-1.html?ET=johnshopkins:e87942:208366a:&st=email&s=W1R_120728_001

COMMENT CORNER

Christina Tina Bonafede I refer to her book [Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain] as my new health bible. I love it, it is so enlightening.

POINT TO PONDER   

Do I plan outings when I’m able?

*Additional Help Links at TheseThree.com http://thesethree.com/Helpful_Links_WXOJ.html
“When we empower ourselves with knowledge, not even one iota of what learn
the hard way can take it away.  Hold on tight, it's going to be quite a ride.”

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

KaleidoPain NEWS: Ever Changing Colors of Chronicity 7-1-12

 

BALANCING THE TEETER TOTTER OF CHRONIC PAIN:

"A feeling of aversion or attachment toward something is your clue that there's work to be done."
-Ram Dass

 “It’s my personal obligation to see prospects for improvement when I’m faced with hardship.” ~ Celeste

 *Tips for writing your own affirmations http://thesethree.com/Key_to_Affirmations.html

 *Tips on journaling https://thesethree.com/Journaling.html

BLOGSPEAK BY CELESTE

Website’s Featured Article for July 2012 - Systemic Lupus Erythematosus
https://www.thesethree.com/Lupus__SLE_.html
June 2012 Blogs

• Are your drains clogged? – Lymphatic Massage (here)
• Thyroid, what have you done to me now? (here)
• A Thief in the Night: Is pain robbing you of love? (here)
• Plumping up our prunes, sinusitis in Fibro and CFID. (here)

*Celeste’s Blogspeak Links for April and June now available. (here) 

 

HEALTHY HABITS

The Benefits of Gardening with Dr Weil

Breathing with Dr. Weil

 

FEATURING Q&A by Celeste at Sharecare 

• How do I manage fibromyalgia on a daily basis? (here)
• Can pregnancy cause fibromyalgia? (here)
• Is Fibromyalgia Related to Restless Leg Syndrome? (here)

*Follow all answers by Celeste at http://www.sharecare.com/user/celeste-cooper/answers

INSPIRING MOMENTS: Giving forward momentum a shove

 

Eight Things I learned from Pain via Kate Bartolotta (here)

 

ANNOUNCEMENTS

 

P-A-N-D-O-R-A making a difference for you. June 11, 2012

DSM-5 Task Force American Psychiatric Association

1000 Wilson Boulevard Suite 1825

Arlington, VA 22209

Members of the DSM-5 Task Force, view letter here

Look for PANDORA and "Classy Awards" (here)

 

Interesting patient comments on the CFSAC committee meeting at the Phoenix Rising forum. 

IN THE NEWS

 

Researcher Calls For Expansion Of Programs To Identify Potential Drug Abusers And Protect Pain Patients. (here)

Interstitial cystitis: A current guide 
to diagnosis and treatment. Lindsey A. Miller, MSBS, PA-C. (here)

 

FEATURED ARTICLE

July’s http://thesethree.com/ website feature Systemic Lupus Erythematosus

 

ROLFING THE RESEARCH

 

Chang CM, Warren JL, Engels EA. Chronic fatigue syndrome and subsequent risk of cancer among elderly US adults. Cancer. 2012 May 30. doi: 10.1002/cncr.27612.[This study suggests a correlation in cellular immune dysfunction and cancer, which may only include a subset of CFS patients. Cc]

 

Häuser W, Jung E, Erbslöh-Möller B, Gesmann M, Kühn-Becker H, Petermann F, Langhorst J, Weiss T, Winkelmann A, Wolfe F. Validation of the Fibromyalgia Survey Questionnaire within a Cross-Sectional Survey. PLoS One. 2012;7(5):e37504. Epub 2012 May 25. Further validation studies of the FSQ in clinical and general population settings are necessary. [Germans testing the validity of the Preliminary Diagnostic Criteria for diagnosing Fibromyalgia.  I have concerns regarding not addressing some unresolved concerns.  More testing of this tool is indicated, and of course, I would like to see someone address the plethora of research that suggests the comorbidity of myofascial pain syndrome. Cc] 

*See all featured research for July at https://thesethree.com/Featured_Research.html 

BOOK REVIEW

 

Breaking Thru the Fibro Fog: Scientific Proof Fibromyalgia is Real by Kevin White, MD, PhD

Dr. Kevin White does a magnificent job providing scientific fact that fibromyalgia is a very real and disabling disorder. He speaks to two audiences the patient and the healthcare community. Though he is a clinician and researcher you wouldn't believe he didn't have fibromyalgia himself. To have such insight as a practitioner is a gift to those for whom he advocates. He has an innate ability to make the reader anxious to hear more about science, which is usually pretty boring reading. No difficulty keeping me tuned in, other than my own disparity of the side effects of having fibromyalgia.

 

SNEAK PEEK (Find the book here Cooper & Miller, Healing Arts Press: Vermont, 2010 )   

“The Blues” © 

This could be a reaction to an event, a death of someone not extremely close, a loss, or bad news, such as an unwelcome diagnosis or test results. If you’ve ever lost a beloved pet, you understand this completely. (Excerpt, Chapter Five)

*You can review “about the book” including the Table of Contents of Integrative Therapies…(here)  

FEATURED WEBSITE OR BLOG!

My dear friend and mentor, who so kindly wrote the foreword to our book now has a group on Facebook. She will offer invaluable support. In healing, harmony and hope, Celeste

Fibromyalgia, Myofascial Pain and Dysfunction

Utube on CFS

 

NEWS for YOU!

Can where you live affect joint pain from Dr. Mehmet Oz. (here)

COMMENT CORNER

 

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection is recommended reading by author Devin Starlanyl,  http://homepages.sover.net/~devstar/bibcopin.htm

 

POINT TO PONDER

 

What motivates me?

 

SUPPORTING THOSE WHO SUPPORT ME

Sharecare Q&A Health Site created by Jeff Arnold (Web MD), Dr. Mehmet Oz, Harpo Studios, SONY Television, and Discovery Communications
P-A-N-D-O-R-A
National Fibromyalgia and Chronic Pain Association
FibroLIFE
Chronic Intractable Pain and You
FibroMadness
Dr. John Whiteside, Australia
Kevin White, MD, PhD, Canada
Dr. Mark Guariglia 
Deirdre Rawlings, ND, PhD
Devin Starlanyl, author/researcher who wrote the forward to Integrative Therapies....
Bill Douglas, author, T’ai Chi expert for Dr. Andrew Weil, book endorsement for Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection.
Jeff Miller, PhD, co-author
and
The many others who share information, support our books, and promote the philosophies of this newsletter.
*Additional Help Links at TheseThree.com http://thesethree.com/Helpful_Links_WXOJ.html
 

“When we empower ourselves with knowledge, not even one iota of what learn

 the hard way can take it away. Hold on tight, it's going to be quite a ride.”

 

How does fibromyalgia affect my musculoskeletal system?

This was such a good question asked of me as Share Care fibromyalgia expert, I just had to blog here for my fellow bloggers and followers.

Times are changing, but we aren't quite there yet. The preliminary diagnostic criterion intends to do away with the tender point model, which has become the hallmark for diagnosing FM.

Fibromyalgia is a central sensitization problem thought to be brought on by a dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis and other central nervous system (CNS) disruptions. The criteria considers the effects CNS sensitization, and comorbid conditions, migraine, IBS, irritable bladder, cognitive deficit, RLS, disordered sleep etc.

However, it does not address the co morbidity of chronic myofascial pain, a peripheral nerve to muscle disease that causes myofascial trigger points (MTrPs). Trigger points are knotted up muscle fibers in a taut (tight) band of muscle. They are EASILY felt unless behind bone or other muscles, or the band of muscle affected is too tight. It is an objective piece of evidence to indicate the presence of FM when other comorbid conditions are present, research suggests possibly all FM patients have them. This is not new to me, but many patients with FM and is why myofascial pain is included in our book, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN and Jeff Miller, PhD. These MTrPs are peripheral pain generators that lend to sensitization, and keep the FM brain in wind-up.

M = Myofascial
TrP = Trigger point, synonymous with
MTrP = Myofascial trigger point
FM = Fibromyalgia
CMP = Chronic myofascial pain

Doctors that diagnose FM need comprehensive, non-confusing guidelines to diagnose & provide helpful treatments. Exercising a muscle riddled with MTrPs, will only make the pain and dysfunction worse, leading both the patient and the physician down a road of misguided conception.

A similar article, Letter to the Editor, from me will be published in the July issue of the Journal of the American Academy of Pain Management.

“Initially we struggle to accept, backsliding from time to time, but we maintain forward momentum, coping, defining and defending our new life.”

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

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.

Resources:

Basford JR, An KN. New techniques for the quantification of fibromyalgia and myofascial pain. Curr Pain Headache Rep. 2009 Oct;13(5):376-8. Mayo Clinic, SW, Rochester, MN 55905

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.

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, 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, Y Wang, B. Danneskiold-Samsøe , et. Al., “The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated With Myofascial Trigger Points.” Pain. 2009 Nov 13.

Giamberardino MA, Affaitati G, Fabrizio A Costantini R. Effects of Treatment of Myofascial Trigger Points on the Pain of Fibromyalgia. Curr Pain Headache Rep. 2011, May [Epub ahead of print].

C. Z. Hong, “New Trends in myofascial pain syndrome,” Zhonghua Yi Xue Za Zhi (Taipei) 65, no. 11 (2002): 501–12.

C. Z. Hong and D. G. Simons, “Pathophysiologic and electrophysiologic mechanisms of myofascial trigger points,” Archives of Physical Medicine and Rehabilitation 79, no. 7 (1998): 863–72.

T.S. Kuan, Y.L. Hsieh, S.M. Chen, J.T. Chen, W.C. Yen, C.Z. Hong. “Re: The myofascial trigger point region: correlation between the degree of irritability and the prevalence of endplate noise.” Am J Phys Med Rehabil. 2007 Dec;86(12):1033-4; author reply 1034.S.

D. M. Niddam, R. C. Chan, S. H. Lee, T. C. Yeh, and J. C. Hsieh, “Central representation of hyperalgesia from myofascial trigger point,” NeuroImage 39 (2008): 1299–1306.

Sikdar, J.P. Shah, E. Gilliams et al. 2008. “Assessment of myofascial trigger points (MTrPs): A new application of ultrasound imaging and vibration soloelastography.” Arch Phys Med Rehab 89(11): 2041-2226.

D. G. Simons and S. Mense, “Diagnosis and therapy of myofascial trigger points,” Schmerz 17, no. 6 (2003): 419–24.

D.G. Simons, J.Travell, and L. S. Simons, Myofascial Pain and Dysfunction: The Trigger Point Manual, 2nd ed. (Baltimore: Williams and Wilkins, 1999.)

Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome: A
Survival Manual, 44.

Bespeak or Begrudge: finding and affording the shingles vaccine

People with fibromyalgia (FM) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)often have impaired or ineffective immune systems. This, along with some medications and treatments, a history of certain types of cancer, and stress and fatigue puts us at a higher risk of developing shingles.

Shingles also known as herpes zoster is a viral infection from varicella-zoster virus that causes painful rash/blisters on the skin following a nerve tract. If you have had chicken pox the virus can lay dormant until it erupts later in life as shingles. Early treatment with an anti-viral drug may decrease the risk of reoccurrence.

See the latest reports and information.

Shingles Vaccine from US Today: Your Life Health.
“Shingles vaccine can protect you but it can be hard to find.”
http://yourlife.usatoday.com/health/medical/story/2011/05/Shingles-vaccine-can-protect-you-but-it-can-be-hard-to-find/47160242/1

More on the vaccine from the CDC, standout comment, if you have had shingles, the vaccine may help prevent recurrence.
http://www.cdc.gov/vaccines/vpd-vac/shingles/vacc-need-know.htm

Post Herpatic Neuropathy (PHN) = The residual effect of shingles, where nerve pain, neuralgia, last long after a shingles outbreak has cleared up. It can last months or a lifetime.

Treatment currently includes: antidepressants, anticonvulsants (gabapentin like drugs), topical lidocaine or capsaicin cream, opioid analgesics and TENS units.

Having had shingles, the US Today article left me with an unanswered question. “Does the vaccine help long term effects that can occur, post herpatic neuropathy?”

According to the FDA, the vaccine, Zostavax, will not help PHN.
http://www.fda.gov/BiologicsBloodVaccines/Vaccines/QuestionsaboutVaccines/UCM070418

An important question was raised after I posted this blog. “Should known immunocompromised patients receive the vaccine?” This is something I think each individual should discuss with their doctor, following is why.

Vaccinating the already immune compromised, from the National Foundation for Infectious Diseases:

“Immunocompromised people are more likely to have serious illness with complications as a result of chickenpox. The best way to prevent infection in such people is by immunizing their susceptible family members and their other close contacts. However, some immunocompromised people are eligible for vaccination.”
http://www.nfid.org/pdf/factsheets/varicellaadult.pdf

Harmony and Hope, Celeste, author

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

You can find out more about me, the book, how to order the book, and other helpful information and links at http://TheseThree.com