KaleidoPain NEWS: Ever Changing Colors of Chronicity 11-5-2012

KaleidoPain NEWS: Ever Changing Colors of Chronicity, containing news for all pain and neuro-endocrine-immune patients, healthcare providers, and caregivers. 

                                   

“The weak can never forgive. Forgiveness is the attribute of the strong.”

~Mahatma Gandhi, Unsurpassed leader of Indian nationalism in British-ruled India,

and led non-violence movements for civil rights. 1869 - 1948 

CELESTE’s BLOGSPEAK  Click here for direct links to each blog  

• Are Your Power Lines Down: Sensitivity of Neuro-Endocrine-Immune Disorders.
• Fighting for the right of choice. RE: PROPS.
• KaleidoPain News: Changing Colors of Chronicity 10-17-12.
• Human Touch: Soft Tissue and Massage Therapy in Chronic Pain Conditions.
• Book Launch for Those Living with Chronic Pain.
• Monthly feature for October is CRPS/RSD.
• A Thief in the Night: Is pain robbing you of love?

FEATURED BLOG or Website

MY MIGRAINE STROBING EFFECT SOURCES BY TONYAMORK

HEALTHY HABITS

What food canhelp my immune system?

INSPIRATION

Mindful awareness expands my being, encouraging me to live consciously without judgment. 

From “Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain, Fall Devotions"

FEATURING Q&A by Celeste at Sharecare

(I hope you chose to join Sharecare and follow the links directly, however you can also go to www.sharecare.com and copy and paste the question into the ASK search box to go directly to my answers for the question.) 

• Who should I tell about my fibromyalgia?
• Can my diet affect my fibromyalgia?

*See over 280 questions answered by Celeste 

THE ADVOCATE

Be an advocate, vote in the CITGO Fueling Good. In the running: 

• CFS Knowledge Center 
• Vote 
• CFSSolutions (The new home of P-A-N-D-O-R-A)
• Vote 

National Patient Advocate Foundation is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels. NPAF translates the experience of millions of patients who have been helped by our companion, Patient Advocate Foundation, which provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.

If you are in need of direct patient services, please contact Patient Advocate Foundation at 1-800-532-5274 or on the web.

PAIN STRATEGIES 

• The Power of Words
• Interagency Pain Research Coordinating Committee - October 22, 2012 Podcast

ANNOUNCEMENTS

If you have or know someone who has CFS, please view and share this video testimony by Jeri McClure Kurre at the CFSAC Committee Meeting.

IN THE NEWS

• The New Panic Over Prescription Painkillers . Huffington Post
• Possible New Medications in Development for FM
• Neuropathic Pain Relieved By Immunoglobulin
• Regulation of Prescription Drugs Could Spell Trouble for Patients
• Another Blow to Chronic Fatigue Syndrome Sufferers
• See the American Family Physician on CFS

Not on Twitter?  Follow my tweets from Celeste Speaks 

NEWS FOR YOU! 

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. 

OF IMPORTANCE:

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)

Group Petitions FDA to ChangeOpioid Label

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,

FIGHTING PROPs FDA PETITION at Left Eye Blind

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.

Contact the FDA 

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

http://www.springerlink.com/content/x627263338uu4245/

FDA Tracking Number: 1jw-81hy-v9dq