KaleidoPain News, 9-11-2012

“Use what talent you possess:  

the woods would be very silent if no birds sang except those that sang best.” 

~Henry Van Dyke, American author, poet, 1852 – 1933.

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

*Tips on journaling www.thesethree.com/Journaling.html

CELESTE’s BLOGSPEAK

Who Should Be Prescribing Our Pills?

Demanding body, cellular strength, LGS:  Are we what we eat?

Notes:

Blogs also available at Sharecare www.sharecare.com/user/celeste-cooper/blogs

See past blog links at www.thesethree.com/Featured_Blog_Links.html

HEALTHY HABITS

Johns Hopkins Health Alert! Lifestyle Factors and Cognitive Decline: What's the Link?

Five Caffiene-Free Ways to Boost Your Energy via Kate Bartolotta 

FEATURING Q&A by Celeste at Sharecare

Can an old trauma lead to fibromyalgia?

Are there alternative treatments for fibromyalgia?

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

ANNOUNCEMENTS

Check out the announcement on the home page of www.TheseThree.com

“Everyone challenged by chronic pain - please join us wherever you are in the world on September 16th for a day sure to enlighten, inspire, educate and empower! To watch, simply view the live stream either here,  www.forgrace.org/women/in/pain/C265/  , on the 2012 Women In Pain 

Marly Silverman is retiring and she is handing off PANDORA (Patient Alliance for NEI Disorders Organization, Research and Advocacy) to capable hands. Read the news. 

IN THE NEWS

Which Endocrine Problems Cause Fatigue And How Does Salt Affect This? - Dr. Friedman (VIDEO)

From FDA Approvals > Medscape Medical News, New Option for Constipation: FDA Approves Linaclotide by Nancy A. Melville 

Pain Misdiagnosis and CRPS Spotlighted by FOX 11 LA.

TNX-102, sublingual low dose cyclobenzaprine, for Fibromyalgia

Fibromyalgia has been unrecognized by the Social Security Administration in the listing of impairments.  Times are changing, “medically determinable impairment (MDI) of fibromyalgia (FM), “  see Social Security Ruling, SSR 12-2p; Titles II and XVI: Evaluation of Fibromyalgia.

NEWS FOR YOU from Celeste

“Osteoarthritis” www.thesethree.com/Osteoarthritis.html

More “NEWS FOR YOU”  at www.TheseThree.com 

ROLFING THE RESEARCH 

This months featured research at www.thesethree.com/Featured_Research.html

BOOK REVIEWS

I just finished reading an excellent book by Anita Moorjani called "Dying to be me". It is highly recommended for us, who struggle on a daily basis to live with this FM-thingie! Her book - about her Near Death experience and the resulting healing from stage 4B Lymphoma puts it all into perspective. To say I finally made peace with my illness is an understatement.

--review by Elke Hutton

"When Movement Hurts: A Self-Help Manual for Treating Trigger Points" by Barbara Headley MS PT. It gives many of the most common trigger points. The muscle sections contain associated diagnoses, signs and symptoms, causes, management tips, and prevention hints. There is a chapter that deals with other causes of muscle pain, one on exercise, and one on repetitive stress, and one dealing with chronic postural stress. The author is an authority on trigger points and well loved by many of us in the field. Her teachers included Janet Travell and David Simons.

--Review by Devin Starlanyl, author and advocate for fibromyalgia and myofascial pain syndrome.

ABOUT OUR BOOKS  

www.thesethree.com/About_the_Books_WPCN.html

FEATURED WEBSITE OR BLOG!

The National Fibromyalgia and Chronic Pain Association.  I hope you will join me by supporting the NFMCPA however you can.  They work behind the scenes, collaborate, educate, advocate, and network within political and health organizations that are striving to make a difference in our lives.  (Disclaimer, I do not work for the NFMCPA) 

How To Get Well From ME (CFS)? 10 Areas Of Treatment To Look At by GetWellFrom ME.  [Inspiring overview, Cc] 

Fantastic presentation for some patients with fatigue, with valuable information. Which Endocrine Problems Cause Fatigue And How Does Salt Affect This? - Dr. Friedman (VIDEO)

COMMENT CORNER 

This review is for: Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (Paperback) 5.0 out of 5 stars The holistic approaches presented are great resources for anyone dealing with these conditions!, July 8, 2012 

By Lyn, Massage Therapist 

I know how debilitating these conditions can be for my clients and how important it is for them to gain control in managing their symptoms. This thoroughly researched book provides a variety of practical solutions to managing a myriad of symptoms. The science is presented in easily understandable terms; the focus on mind, body and spirit is truly integrative. Tips provided for dealing with the challenges of securing treatment in our broken health care system are not found in other books. This is an excellent resource! 

POINT TO PONDER    (Sneak Peek from our soon to be released, Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain, a series beginning with “Fall Devotions”)

Do I exude the pleasures I seek in others? 

Have the KaleidoPain News delivered right to your Inbox by subscribing to the RSS feed.

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

*This virtual newsletter is for informational purpose only and is not meant as medical advice.

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

Where do those dust bunnies come from? Brainfog in FM and CFID at its worst and best

Cognitive dysfunction, brain fog, is common in fibromyalgia and chronic fatigue immunodysfunction. It could be due to the centralization of pain found in FM or CFID (ME/CFS) or it could be due to one of the comorbid conditions such as, insulin resistance, reactive hypoglycemia, hypothyroidism, other hypometabolism, poor sleep regulation, or some type of organic brain syndrome. It is important that you discuss all of your symptoms with your doctor so that any comorbid condition can be ruled in or out and be appropriately treated.

I know only too well how frustrating brainfog can be, losing words midsentence, transposing words and numbers. I cannot be trusted to write down a phone number for instance. Short term memory loss can be affected too, and at a greater degree than that of your friends who say, “Oh, I do that too.” In fact, they probably do that too, but not EVERY time they walk into a room, look around, and wonder what they are doing there, if they do, I suggest they too have the above mentioned conditions investigated. Comments like this makes us want to ask them how many times they have driven to their doctor only to be lost in a parking lot, not having a clue as to where they are or how to get to a place they have been many times before, then wondering if someone will want to take their license away if we share that information. (I do suggest that if you are in a flare, have someone else drive if at all possible. Asking for help is ok.) Frustrating seems a simple word to describe this dilemma that has robbed many of us from our livelihood.

We have tried about every supplement available to regain our cognition, and that can be a dangerous thing too, because many interfere with other medications we take.

There is no cure for brain fog, but it is important to understand there could be underlying conditions contributing to this unwanted side effect. There are helpful tools, which we discuss in our book. Being organized and learning to manage time can be very helpful. Will these tips broom away the dust bunnies? Probably not, but they will help with the frustration that is created as a result. Deep breathes, and try to treat yourself with loving care, understanding that your brain is trying to function, despite the road blocks getting in its way. It is chugging along, and we should too. Try to turn the experience into something positive. I am certain if we wrote down each episode, we could put together a really good comedy book.

Things always look brighter when we can look back on it and laugh.

Healing, harmony and hope, Celeste, RN, author, FM expert at Sharecare.com


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