Monday, July 9, 2012

KaleidoPain NEWS: Ever Changing Colors of Chronicity 7-9-12



BALANCING THE TEETER TOTTER OF CHRONIC PAIN:


"An illness is like a journey into a far country; it sifts all one's experience and removes it to a point so remote that it appears like a vision." Sholem Asch

 I am confident I have purpose.~ Celeste

*Tips for writing your own affirmations    *Tips on journaling

BLOGSPEAK BY CELESTE

Blogspeak by Celeste, Exposing the Cover Up of Myofascial Trigger Points in Fibromyalgia, Mention in CFS/ME

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

HEALTHY HABITS

From Frugal Living for Spoonies. Housework for Spoonies

Avoid These Foods if You Have Rheumatoid Arthritis from John Hopkins

FEATURING Q&A by Celeste at Sharecare

What if my fibromyalgia causes too much pain to exercise?

How long does it take to diagnose fibromyalgia?

*Follow all answers by Celeste here.
INSPIRING MOMENTS: Giving forward momentum a shove

What Those with Chronic Pain or Illness DON’T Want to Hear You Say
Even the well-intentioned often don’t know how to talk to the chronically ill.
by Toni Bernhard, J.D.


X Rx Blog. I am in Hawaii, treating Andrew, an 11 year old boy with severe ME from Northern Ireland who has been essentially bedridden for three years. He has been seen by the best doctors in the UK and offered no work-up or treatment. He was sent to me by an amazing group of people who have started an organization called Little Acorns to help ME children get treatment Read on….

Hope in determination

ANNOUNCEMENTS

PANDORA celebrating ten years, join us as we applaud their dedicated service to helping all people with neuroendocrineimmune disorders.
Look for PANDORA and Classy Awards

Tweet sharing now available at http://thesethree.com/

If you like what you see at my website offering featured conditions, research updates, blog links, news for you on different conditions, important articles including how to write an affirmation, about FM, CFS/ME, and MPS, helpful links, about the books, and about the authors, you can now tweet it to your friends. I hope you will check it out!

IN THE NEWS

ME/CFS Orgs Push Secretary of Health Sibelius For Strategy Meeting. by Cort on July 2, 2012. [Standing together for the greater good. Don’t miss this most important article from Phoenix Rising.

Joint Request from the ME/CFS Community for Action

Confessions of a RX Pharmaceutical Drug Pusher on You Tube

The Wall Street Journal in the Lab. How old viruses may haunt us by AMY DOCKSER MARCUS

4 genes linked to migraines found

FEATURED ARTICLE

Avoiding Lockdown

ROLFING THE RESEARCH

Chung JH, Kim SA, Choi BY, Lee HS, Lee SW, Kim YT, Lee TY, Moon HS. The association between overactive bladder and fibromyalgia syndrome: A community survey. Neurourol Urodyn. 2012 Jun 5. doi: 10.1002/nau.22277. [Epub ahead of print][The presence of myofascial trigger points in the pelvic floor, including those surrounding the urethra play a role in symptoms of urgency, AND interstitial cystitis. Cc]


Jarrell J, Giambarardino MA, Robert M et al. 2011. Bedside testing for chronic pelvic pain: discriminating visceral from somatic pain. Pain Res Treat 2011:692102. “Tests of cutaneous allodynia, myofascial trigger points, and reduced pain thresholds are easily applied and well tolerated. The tests for cutaneous allodynia appear to have the greatest likelihood of identifying a visceral source of pain compared to somatic sources of pain.”
[Well of course, CPP has been correleated with myofascial pain and trigger points, a very biological condition, Cc].

*See all featured research for July here.

BOOK REVIEW

Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic [Paperback] by Hillary Johnson

This book is pivotal, interesting, enlightening and timeless regarding chronic fatigue syndrome (CFS), now also known by many as CFS/myalgic encephalomyelitis or chronic fatigue immunodysfunction.

Hillary Johnson, journalist and patient spent nine years of unremitting, scrupulous research on CFS. Osler’s Web reads like a mystery novel, as she exposes the inept attempts by the CDC to respond to epidemics and their failure to recognize the existence of what we call CFS/ME today. The mystery unwinds as she exposes the unwillingness of biomedical research to respond to the dismal picture playing out before their eyes, one of the first of many missed opportunities.

Hillary’s uncovers the medical research establishment’s breakdown in recognizing CFS/ME as a serious illness. Her account, interviews of patients, advocates, medical professionals, epidemiologist and more, covers the span of a decade, 1984 to 1994. Those who should have been protecting humankind from this unknown and little understood disease ignored the facts because they were clueless as to how to respond to such a complex disease. Today nearly two decades later, a causative agent has not been found, despite the fact that millions of people have had their lives, as they knew them, ravaged by a disease that attacks the immune system, leaving them unable to exercise or participate in activities because it makes their symptoms unbearable.

Osler’s Web gives a crucial, historic account of CFS/ME and is extraordinarily well written book. Hillary Johnson’s dedication to investigative journalism is obvious as you turn each page. If you have or suspect you have CFS/ME, "Raggedy Ann disease," or "yuppie flu," this is a book you won't want to put down. Read Hillary’s overview here.

SNEAK PEEK (Cooper & Miller, Healing Arts Press: Vermont, 2010, available here.
“Brain Fog—Symptoms of Blowout before a Power Failure” ©

Stress is often blamed for many things, and rightly so. Does this mean that if we control the stress in our lives, we will be rid of the cognitive difficulties some of us suffer? According to what I’ve read about our conditions, probably not. However, learning to recognize stress stimuli and work through the experience will help us control our reactions. (Excerpt, Chapter Six)

Chapter 6 Dealing with Circuit Overload 294

Brain Fog—Symptoms of Blowout before a Power Failure 295
Time Management—An Exercise in Energy Conservation 302
Crisis Management—Dealing with Major Life Events 307
Chapter Conclusion 309
Summary Exercise: Unloading the Gray Matter 309

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

FEATURED WEBSITE OR BLOG!

Why Are So Many People Getting Thyroid Disease?  By Mary Shomon

NEWS for YOU!

Seventeen year old CFS/ME writes a letter to President Obama, July 2, 2012.

Doc Talk: Filling the Information Gap Between CFS Clinicians and Patients, by Lucinda Bateman MD, Founder, Fatigue Consultation Clinic

COMMENT CORNER

Nancy Likespizza Celeste, I love u. You're a beauty soul. Than you. Been reading more of yr book this week. Such a good reference when sick. Bless u.

POINT TO PONDER

Is there something I can do to improve my bedtime ritual?

SUPPORTING THOSE WHO SUPPORT ME

Sharecare. Q&A Health Site created by Jeff Arnold (Web MD), Dr. Mehmet Oz, Harpo Studios, SONY Pictures Television, and Discovery Communications

PANDORA
National Fibromyalgia and Chronic Pain Association
FibroLIFE
Chronic Intractable Pain and You
FibroMadness
Dr. John Whiteside
Dr. Mark Guariglia
Deirdre Rawlings, ND, PhD
Devin Starlanyl, author/researcher
Bill Douglas, author, T’ai Chi expert for Dr. Andrew Weil, book endorsement for Integrative Therapies
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 


“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

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

Monday, July 2, 2012

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


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

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

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.”

 

Celeste's Website

Celeste's Website
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