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Chronic Neuroimmune Diseases
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Last updated January 1, 2014

Chronic Unremitting Pain Information Resources

"Not to relieve pain is tantamount to moral and legal malpractice." - Edmund D. Pellegrino MD

"A drug addict wants to escape life; a pain patient wants to live it." - Melissa Kaplan

Compiled by Melissa Kaplan

Intractable Pain Association's Definition of Intractable Pain
"Pain which is excruciating, constant, incurable and of such severity that it dominates virtually every conscious moment, produces mental and physical debilitation, and may produce a desire to commit suicide for the sole purpose of stopping the pain"

Forest Tennant, MD, Dr.P.H.
Intractable Pain Association
Veract Intractable Pain Centers
West Covina CA - 626-919-7476

Grass Valley CA - 530-272-5992
Santa Maria CA -  805-349-9949

 

Definitions

chron ic:
Of long duration; continuing. Lasting for a long period of time or marked by frequent recurrence.

un re mit ting
Never slackening; persistent.

per sist ent
Refusing to give up or let go. Insistently repetitive or continuous.

pain
The sensory and emotional experience associate with actual or potential tissue damage.

Chronic, unremitting, persistant, pain is common to many physicial and neurological disorders. The failure to adequately treat pain in the US is a travesty that can no longer be allowed to continue.

The way the medical profession has historically addressed pain is to teach the patient to "manage" it. Get used to it. Learn coping skills. Deal with it. Shut up and go away. The fact that any chronic illness, especially those that involve chronic pain and the the long-term loss of one's livelihood and the cessasion of life as one knew it, understandably may cause secondary depression is ignored. Instead, too many doctors and health care professionals leap on the depression itself as if that were the cause, rather than a secondary effect of the underlying medical condition. Thus, the medical profession enabling themselves to place the blame squarely on the patient for not getting better, rather than looking to the medical profession's antiquated, inadequate and all too often ignorant practices.

Compounding the problem is the "war on drugs." Our society has become so paranoid about the evils of drug addition that it has lost sight of the fact that people are suffering intense, mind-numbing pain each and every day of their lives because their doctors refuses to prescribe adequate levels of medication for them. Why? Because they don't want the Drug Enforcement Agency breathing down their necks. Why is the DEA getting involved? Because they don't want doctors "making" drug addicts. If we really wanted to legislate against addictive substances that ruin lives, why not go after alcohol? According to a 1995 report of the NIH's National Institute of Alcohol Abuse and Alcoholism, 1 out of every 13 adults in the US abuses alcohol or is alcohol dependent. Dr. George Hansen wrote a letter protesting the JCAHO's new criteria for hospital facilities evaluation and treatment of acute and chronic pain (Assessment and Management of Pain, George Hansen, MD, JAMA November 8, 2000, Vol 284, No 18). In it he states that in the U.S. there is a 13.7% prevalence towards alcoholism/alcohol abuse, and 7.5% prevalence of "illicit drug dependence." Thus, he contents, it is better to undertreat the estimated 50 million people with chronic, often life-altering chronic debilitating pain rather than risk any of them becoming dependent on drugs...despite the fact that research indicates that addition is rare in chronic, intractable pain patients, even when the actual cause of the pain is not known. Funny how none of these doctors who continue to preach against evils of drugs fail to come out against the widespread availability of beer, wine and spirits...

I used to audit drug claims for one of the country's largest third-party claims administrators, with part of my job being to identify possible cases of drug abuse by our clients' employees. While there were a few cases of abuse, most payments were allowed through once we researched the patient's medical history. The continuing restrictive clinical practices are simply not justified in the face of documented medical history of most chronic pain patients. Yes, some patients can be helped by stepping them down on medications and teaching coping and lifestyle skills. But that is a pitiful minority when compared to the thousands of men, women and children whose lives are made a living hell from inadequately treated pain.

This page is the start of a collection of articles and resources dealing with chronic unremitting pain. There being plenty of IAIYH ("it's all in your head") resources out there on the 'net and tables in doctors's offices, this site will focus more on support, treatment and activism rather than on "management."

Update: In the year or so since I first put up this page, there has been a growth in the number and variety of resources available on the WWW. Please use the following links to find further information on locating physicians, sources for competitively priced prescription drugs, etc., as I do not maintain lists of doctors or pain clinics myself.

For more on addiction versus treatment, please see the A Rose By Any Other Name Is A Tuna Sandwich sectiuon in my Filing Complaints Related to Undertreatment of Chronic Pain article.

Doonesbury On Drugs For Intractable Pain


Information
Facts do not cease to exist because they are ignored. - Aldous Huxley

For California Residents

California's Pain Patient's Bill of Rights
California AB 487 - Medical Conduct for Pain Treatment
California SB 1000 - Triplicate Drugs
Filing Complaints Related to Undertreatment of Chronic Pain
Prescribing Controlled Substances For Pain

 

Information on Pain Treatment
City of Hope Pain/Palliative Care Resource Center
Chronic Pain Fact Sheet
Doctor found guilty of elder abuse for not relieving pain
The Case for Morphine
The Tragedy of Needless Pain
The Use of Narcotics for the Treatment of Chronic Pain

 


  Finding Effective Pain Doctors
A great many people think they are thinking when they are merely rearranging their prejudices. - William James

American Academy of Pain Mangement
Med-Help.com
Pain.com Pain Clinic Listing
Pain.net

 

Links

Pain and Treatment
American Medical Association
Charting Pain
InfoMIN
JCAHO Pain Management Standards 2001
New England Journal of Medicine
Pain & Policy Studies Group
Pain.com
PartnersAgainstPain.com

 

Pharmacopoeia
MEDLINEplus Drugs
Journal of Clinical Pharmacology
Psychopharmacology Links
Psychopharmacology Tips

 

Federal Drug and Medical Websites
Drug Enforcement Agency (DEA)
Food and Drug Administration (FDA)
MEDLINEplus
National Institutes of Health (NIH)
US National Library of Medicine

 


Associations and Support Group Information

Associations
Action on Pain (UK)
American Academy of Pain Management
American Academy of Pain Medicine
American Academy of Physical Medicine and Rehabilitation
American Board of Pain Medicine
American Chronic Pain Association
American Pain Society
American Pain Foundation
Arthritis Foundation
Chronic Pain Clearinghouse
International Association for the Study of Pain
National Foundation for the Treatment of Pain (NFTP)
North American Chronic Pain Association of Canada (NACPAC)

Repetitive Strain Injury Organizations
Association for Repetitive Motion Syndromes (ARMS)
CTD Resource Network, Inc.

Support Groups
Thus far, what I've found is very scattered amongst the literally thousands of pain websites, and I have neither the time nor energy to search them all out and verify their orientation. If you belong to a support group which does more than just address coping and lifestyle skills, please let me know and I will begin to compile a list for this site.

America Online (AOL) Pain Recource Center
An extensive forum on chronic and acute pain, including file libraries, links to outside resources, message boards and chats. Keyword: pain

Usenet/Newsgroups
alt.support.chronic-pain
pnews.com's Pain Board

 

Charting Pain

http://www.anapsid.org/cnd/pain/painresources.html

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