Tuesday, October 30, 2012

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)

Saturday, October 20, 2012

Fighting for the right of choice, re: PROPS

The Physicians for Responsible Opioid Prescribing (PROPS) is petitioning the FDA to band prescribing of opioids for moderate pain, set a maximum daily dose on all opioids, equivalent to 100 milligrams of morphine, and limit chronic pain treatment with opioids for more than 90 days, under the guise of labeling.  I ask, "Is the title of this petition misleading for a reason?" What does such a petition mean to millions of Americans, those of us who rely on opioids so we can wash our hair, take a bath, eat and sleep, basic functions.  Could such an enactment by the FDA lead to an epidemic of suicide?

This petition is an effort, in my opinion, to force the market of medications NOT CLASSIFIED as analgesics upon us. For those who find alternate classifications of medications helpful in relieving pain, wonderful, but I hope everyone realizes this is a choice, not a mandate. 


Toxicology Investigators Consortium Case Registry—The 2011 Experience

 (Excerpt/synopsis) Look at the numbers.

The total number of cases entered into the registry at the end of 2011 was 10,392.
The most common classes of agents were:

sedative–hypnotics 23 %
non-opioid analgesics 21 %
opioids 17 %
antidepressants 16 %
stimulants/sympathomimetics 12 %
ethanol (alcohol) 8 %

35 deaths recorded in the Registry during 2011...reported as sole agent or in combination with other agents, were:

opioids (10) oxycodone named in 8 deaths
analgesics, acetaminophen, aspirin, NSAIDS, (8)
Acetaminophen was the most common single agent reported...

(End excerpt)

By guest author, Bob Twillman, PhD, FAPM, Associate Professor at Kansas University and Director of Advocacy and Policy at the American Academy of Pain management,


As Americans we deserve the liberties set forth by our constitution.  Avoiding pain comes without conscious thought; it is a protective mechanism for physical and psychological well being.  Whether pain is acute or chronic the same applies.  Even if you choose not to use opioids to treat your pain please fight for the right of choice.  The culture on chronic pain must change in order to preserve our self esteem. Christopher Reeve was a great example of human fortitude. But I ask, "For those of us who have pain as the result of something we wish we could change, should we be demonized?" That makes about as much sense as blaming individual patients like Christopher Reeve for rising healthcare costs, because he chose to ride a horse.

If you are outraged at what this will mean to Americans living with chronic pain please let the FDA know what you think.

As chronic pain patients we have a duty to be responsible with our medication.  No pill is going to take all the pain away, but when pain and its side effects severely obstruct function, we need help. There is no doubt we need a program for educating physicians on ethical, moral, and compassionate pain treatment, and patient education on safety, expectations, and the value of integrative therapies.  However, denying our rights as human beings has historically led to underground avenues with far greater consequences. People have been known to go to extreme measures to survive.

Chip by chip we are losing our civil liberties. Even if you choose not to use opioids today, someday you may.  Please fight for the right to have that choice.

In healing, harmony and hope, Celeste
Activist for understanding and treating invisible pain/ illness with ethical, moral, and integrative care, molded by the patient’s own belief systems.

Here is my second communication with the FDA.

I implore you to disregard this abominable petition.  Patients deserve the right to have their pain treated in an ethical, MORAL, and integrative manner.  For many Americans, opioids are the treatment of last resort to help them maintain function, participate in integrative therapies that help minimize their opioid use.  Managing pain should be a basic right, not a crime as these people want to imply.  Treating pain is a PRIMAL instinct.  The new medications for treating pain, anti-seizure and anti-depressants are having horrific affects.  People are dropping like flies because of drug interactions, yet opioids which have been around for centuries are targeted. 

See Wiegand TJ, Wax PM, Schwartz T, et al. The Toxicology Investigators Consortium Case Registry—The 2011 Experience. J Med Tox. 2012(Oct); online ahead of print

FDA Tracking Number: 1jw-81hy-v9dq

Wednesday, October 17, 2012

KaleidoPain NEWS 10-17-12

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KaleidoPain NEWS: Ever Changing Colors of Chronicity
by Celeste, RN, author, patient

Happiness is when what you think, what you say, and what you do are in harmony.
~Mahatma Gandhi


Book Launch for Those Living with Chronic Pain

Monthly feature for October is CRPS/RSD



FEATURING Q&A by Celeste at Sharecare




Important announcement for everyone reading this newsletter!

Following my own in-out rule something new has come in so something old must go out.  This is purely in an effort to keep myself on track and manage my own personal needs as a patient. Read on


Not on Twitter?  Follow my tweets on the bottom of the welcome page at http://TheseThree.com


A new study published by the Bartonella research team at NC State University’s College of Veterinary Medicine–led by Dr. Ed Breitschwerdt–links Bartonella infection to rheumatologic symptoms in patients with historical diagnoses of Lyme disease, arthritis, chronic fatigue, and fibromyalgia. The study is reported in the May issue of the Emerging Infectious Diseases…. 



WakeUpNow and National Fibromyalgia & Chronic Pain Association: Fundraising Partners


Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain – Fall Devotions
Essential and inspiring! Puts us in touch with our unspoken and unacknowledged inner self-understanding that gets pushed aside when pain steals our attention.
--Jan Favero Chambers, President, National Fibromyalgia and Chronic Pain Association

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (Paperback)

5.0 out of 5 stars Love this book! By Anna Leviti "A. Leviti" (MN)
This is by far one of the best books I've read on fibromyalgia...and I've read many…. I love her wisdom and sharing of her obvious expertise in unraveling how to get well and what works AND what doesn't. Good quality book and very well priced.


Contributing author to FibromyalgiaInsider Secrets: 10 Top Experts, 2nd Ed. 


Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness [Paperback]

Jon Kabat-Zinn is a mastermind in understanding the impact of the body-mind connection. 

Anyone with chronic illness will benefit from the practices found in this and other books written by Jon Kabat-Zinn.  As a patient, author and fibromyalgia expert, I understand and write about the importance of physical, mental, emotional, and spiritual balance.  The works herein provide a means to achieving that end.

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.


Should I write a  paragraph  about something that has awakened my senses?

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

Friday, October 12, 2012

Human Touch: Soft Tissue and Massage Therapy in Chronic Pain Conditions

Massage therapy can be very beneficial when the right technique is artfully executed by an intuitive and skilled therapist. Touch and hands-on methods are a good adjunctive therapy in treatment of fibromyalgia, joint pain, chronic fatigue syndrome, myalgias, and other musculoskeletal disorders from head to toe. The myofascia (muscle covering) is connected throughout the entire body, therefore addressing local restrictions may help with pain in other areas of the body and massage therapists understand this relationship.

If myofascial pain syndrome (MPS) is present, as seen in many disorders from fibromyalgia and chronic fatigue/myalgic encephalomyelitis, migraine, spinal degeneration, interstitial cystitis, irritable bladder, arthritic joints, post surgical scaring, etc, a specialized myofascial trigger point therapist is recommended. 

Myofascial pain syndrome is a great peripheral pain generator adding to the amplification of pain and upsets in brain orchestration seen in fibromyalgia, and though centralization is not discussed in chronic fatigue syndrome, there is also a brain manifestation leaving these patients at risk for many of the overlapping disorders seen in both FM and CFS and each other.  Myofascial trigger points, knotted up pieces of muscle fiber that can be easily felt unless behind bone or other muscles, they radiate pain and other symptoms in a specific pattern according to their location.  Myofascial trigger points are great neurological imitators, and prevalent in many pain disabilities. More information on MPS, FM and CFS/ME can be found at http://TheseThree.com under the disorder/diseases tab.

If you do not tolerate myofascial manipulation, gentle massage and stretch is indicated in the beginning. More pain does not indicate more gain in all cases. A good therapist will know this and work with you. The feedback we provide our brain teaches it how to respond, and it is important to know it will react according to how we teach it. Certainly, we wouldn't put a child on a bicycle without first using training wheels.

The greatest consideration is that your massage therapist becertified by a peer reviewed organization,  or in your state if your state requires such certification.

Particular hands-on therapies are discussed at length in Integrative Integrative Therapies for Fibromyalgia, ChronicFatigue Syndrome, and Myofascial Pain: The Mind-Body Connection, and the resource section is one of the most extensive available.

Paying it forward for chronic pain and neuro-endocrine-immune disorders. Celeste, RN, author, pain patient/activist, educator, and fibromyalgia health expert.

About the books written for you:

Contributing author to FibromyalgiaInsider Secrets: 10 Top Experts, 2nd Ed. 

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

Wednesday, October 10, 2012

BOOK LAUNCH for those living with CHRONIC PAIN


by Celeste Cooper, RN, BSN and Jeff Miller, PhD, Missouri: ImPress Media

Copyright Conventions.
ISBN-13: 978-0615638089


Achieving physical, mental, emotional, and spiritual balance is important to everybody. However, when encased in pain, maintaining the necessary focus seems like trying to climb Mount Everest without oxygen.  Learning to have a positive dialogue with our besieged body, overcome obstacles, and achieve goals can have a significant impact.

Unnecessary struggles can be avoided when we have strings tied to our fingers or notes pinned to our coats as constant reminders.  Fall Devotions is the first in the miniseries and it provides noteworthy knock-- knocks we frequently lose track of because our pain is in boss mode.  Improving personal beliefs about pain is the catalyst in our healing process.  Come join us as we walk the clearing from the wind-swept fallen leaves.

After years of laboring in love, we are please to announce that the first book is now available on Amazon and is available for super savings.  It will be available on all major book retailers sites soon.

Available in Kindle!. 

Fighting for all invisible illness and pain, Celeste, RN author, educator, pain patient/activist, and fibromyalgia health expert

Don't forget about

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection  by Celeste Cooper, RN and  Jeff Miller, PhD, Vermont: Healing Arts Press

Available on Kindle and Nook!

Celeste's Website

Celeste's Website
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