January 2002
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  1. Articles On Your Health

  2. Featured Article

  3. What's Online at CSSA

  4. News and Views

  5. Resources

  6. Specials

  7. The Fine Print



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1.  Articles On Your Health patient


    The "new" American Physician was a Scientist. To separate himself from his predecessors he eschewed anything which was not "objective" and quantifiable. It was because of the then new scientific approach that physicians were able to save many lives, and improve the quality of many more. The "old style" physicians depended on qualities of intuition, folklore, powers of suggestion and belief. The old ways were to be purged, so that the quality of human existence could improve unimpeded.

    Inherent in this belief of scientific absolutism was the attitude that the patient knew little or nothing of the evolving scientific discoveries in medicine, physiology, chemistry and biophysics. Physicians then developed a "paternal" approach to their patients in order to help them use the new tools of scientific medicine. This paternalism certainly was not new as a medical approach, but it did become solidified as de rigueur because it would be unrealistic to expect a general patient population with marginal education to have any understanding of the diagnostic and treatment modalities which were undertaken.

    How did a person with a disease such as Fibromyalgia or Chronic Fatigue Syndrome fit into this model? What was the physician's attitude toward these patients for whom science had little to say in terms of an answer?




2.  Featured Article
 

 joan

Bankruptcies Of The Heart: Secondary Losses From Disabling Chronic Pain,
by Marcia E. Bedard

     

     

     

     

    Summary of paper presented by Marcia E. Bedard at the 1998 Society for Disability Studies Annual Meeting

    My current research, which I have summarized here, is focused on the theory of "secondary gain" as it applies to chronic illness, and specifically chronic pain. The basic idea behind this theory is that chronic pain is psychological and persists only because the person suffering from it enjoys one or more "rewards" that accrue from their pain. These so-called "rewards" may be emotional, such as sympathy or monetary, such as disability payments. Either type of "gain," is said to reinforce the pain, causing partial or complete disability. Although this concept originated with Freud decades ago it has never been rigorously examined. Given the prevalence with which it is applied to persons disabled by chronic pain though, we must question its validity until it has been scientifically proven to hold true. In the interim, we need to take into account the numerous "secondary losses" brought about by chronic pain as well.

    For more than 30 years now, the majority of psychologists have been shifting their emphasis toward treating chronic pain as a perceptual and psychological phenomenon rather than a true medical problem. One of the major theorists in this field was Wilmer Fordyce, who developed an influential social-learning model of chronic pain based on behavioralism about 20 years ago. Fordyce believed that pain is behavior designed to protect oneself or solicit aid and that pain increases, i.e., this behavior is strengthened, when followed by desirable consequences. Unlike many of his predecessors who believed chronic pain was purely psychogenic in origin, Fordyce believed that all pain began as acute pain from actual tissue injury and under normal conditions, the injury healed in a certain period of time. However, Fordyce argued that if pain persisted beyond the normal healing time in an environment with secondary gains, the pain would become chronic. He gave as examples of secondary gains, or "desirable consequences" of pain the following factors that he believed reinforced pain and disability.
     

    The Four Most Commonly Referenced Secondary Gains

    The myth is that persons disabled by chronic pain generally enjoy:

    1)

    attention and sympathy from family, friends, and physicians

    2)

    release from task responsibilities at home and at work

    3)

    narcotic medications presumed to induce constant euphoria

    4)

    monetary compensation which approximates actual wages

     

     

     

    The Four Least Commonly Recognized Secondary Losses

    The reality is that persons disabled by chronic pain generally endure:

    1)

    anger/trivialization/rejection by family, friends, and physicians

    2)

    complicated/frustrating tasks dealing with new bureaucracies

    3)

    agonizing pain without medication; unpleasant side effects with medication

    4)

    denial of disability benefits to which they are legally entitled

    My thesis is this: not only is psychogenic chronic pain rare, but more importantly, few people disabled by chronic pain regularly receive secondary gains. My evidence for this assertion comes from several sources: literature cited in the paper I presented at the 1998 Annual Meeting of the Society for Disability Studies (SDS); information about personal experiences sent to me by hundreds of chronic pain patients, as well as physicians and psychologists who specialize in treating chronic pain via numerous Internet lists I subscribe to and websites I monitor; and finally, my own experience over the past six years as a chronic pain patient.

    Attention and sympathy from family, friends, and physicians is sadly, in short supply for chronic pain patients. The wide range of family problems experienced by these patients include, but are not limited to: guilt over not being able to carry one's fair share of domestic tasks; anger at family members who deny the reality and/or severity of the patient's pain; frustration because the pain is so great it makes playing with one's children or sexual intimacy with one's partner torturous or impossible; and anxiety about the financial strain that stems inevitably from disabling chronic pain. Given that nearly every book or magazine dealing with chronic pain has a section on coping with these and other family problems, it is apparent that family attention and sympathy are not as abundant as we are led to believe by secondary gain theorists. We must also not forget that many chronic pain patients have no family, or none nearby, or their families deny or trivialize their pain and disability. Denial, trivialization, and eventual abandonment are also common reactions of friends or co-workers. The loss of former friends is another emotionally painful aspect of disabling chronic pain.

    Attention and sympathy from physicians may be absent at the outset for chronic pain patients, but if not, it generally wanes as the patient fails to respond to one after another medical interventions, leaving most doctors feeling frustrated and helpless. Patients with incurable, irreversible, and progressive conditions, such as degenerative disk and joint disease, may have a difficult time even finding a doctor who will take them as a patient. Consequently, many chronic pain patients are literally "fired" by their treating physicians a year or so after numerous painful and invasive treatments have been tried and failed, and left on their own to try and find another doctor. Unless such patients are able to find a physician who can actually help them control their pain, they are forced to live an unbelievably miserable existence that all too frequently ends in suicide.

    The second most common secondary gain is release from task responsibilities at home and work. It may be that those living with spouses or significant others are relieved from some or all of their domestic chores some or all of the time, but I question whether this is perceived as a "reward" by most persons disabled by chronic pain. In my own experience and research, the guilt of watching loved ones at home and colleagues at work become overburdened by these extra tasks is hardly rewarding and takes a heavy toll on one's self-esteem, and sense of self-worth. Furthermore, as time goes by, resentment toward the disabled person generally increases among those picking up the slack, increasing interpersonal friction. Any release from former task responsibilities is also offset by the increase in new task responsibilities on becoming disabled. There are numerous forms to be filled out and reports to be completed for the Americans with Disabilities Act (ADA), leaves of absence and state disability insurance (SDI). If the chronic pain resulted from a work-related illness or injury, there is the bureaucratic morass of worker's compensation to navigate. And if the disability lasts six months or more, there is the process of applying for Social Security Disability Insurance (SSDI). The amount of paperwork and reports varies, but in my own case, which was relatively simple, there were hundreds of pages of forms and reports I had to submit over the two years it took just to get my SSDI approved, and that was with the help of an attorney. This, however, was nothing compared to what I went through with my group long-term disability (LTD) insurance. The forms, reports, and correspondence on that claim fills an entire drawer of my filing cabinet, and that claim is still unsettled.

    Narcotic medications are the third most commonly referenced secondary gain. The fact that they are considered a gain at all is telling it is obviously presumed that they induce euphoria, yet any pain patient who has taken them regularly will tell you that not only do they do nothing but take away the pain so one feels relatively normal for awhile, they also have extremely unpleasant side effects. Yet although 34 million Americans suffer from chronic pain and most are significantly disabled by it, only a small minority receive any type of narcotic medications for pain relief and these are usually inadequate to relieve the pain a situation which frequently leads to suicide or requests for physician-assisted suicide. The irony here is that in many cases these are the only medications that will allow the patient to return to part-time or full-time work.

    The fourth commonly referenced secondary gain is the supposed monetary compensation which approximates actual wages that persons disabled by chronic pain receive. If this fallacy were not so tragic, it would be laughable, because of all the secondary losses emanating from disabling chronic pain, the economic losses are utterly devastating. Even if one is fortunate enough to have medical insurance, there are numerous expenses detailed in my paper that are not covered by any type of insurance, nor are they even tax-deductible. So where did the idea come from that work-disabled persons have it made" financially? I think it is because there are ostensibly four different types of "safety nets" when one becomes disabled: state disability insurance (SDI), worker's compensation (WC), Social Security Disability

    Insurance (SSDI), and group or private long-term disability (LTD) insurance. LTD insurance is a type of coverage which very few people have primarily highly-paid professionals, yet this is the only kind of insurance benefit that ever approximates one's pre-disability income, generally paying half to two-thirds of the claimant's lost income as benefits. However, if the disability is from chronic pain, more often than not the claim for any type of benefits will be disputed and, in too many cases, denied, leaving the disabled person to face bankruptcy, poverty, and eventually homelessness unless one is exceptionally lucky. So common is it for persons disabled by chronic pain to be denied benefits to which they are legally entitled that numerous lists and websites have been established on the Internet solely for the purpose of providing information and support to those claimants wrongfully denied. To describe this situation as scandalous is an understatement, yet millions of American workers have been lulled into false security believing that if they should have the misfortune of becoming disabled, these safety nets will be there to cushion them from the full brunt of economic loss.

    In summary, divorce, loss of career, financial ruin, homelessness, loss of friendships and social life, loss of physical mobility, the severe stress of protracted litigation, and in some cases physical disfigurement are just a few of the kinds of secondary losses commonly incurred by persons disabled by chronic pain. Obviously it is impossible to place a price tag on any one of these tragic losses. So the concept of secondary gain is put forward instead, turning the truth the reality of the disabled person's existence upside down. This is, in my estimation, nothing short of institutional moral larceny: a victim-blaming ploy that serves primarily to justify the reprehensible actions of insurance companies, opposing attorneys, and many of the private, county, state, and federal bureaucracies purporting to "assist" persons with disabilities. Secondary gain, or any other concept built on myths and stereotypes which contribute to ongoing discrimination against persons disabled by chronic pain needs to be exposed for what it is unconscionable in a democratic society.

    What is desperately needed at this point in time is a massive public education campaign regarding the enormous losses, tangible and intangible, that accompany disabling chronic pain including, but not limited to, bankruptcies of the heart.

    Copyright © 1998 by Marcia E. Bedard, Ph.D., Women's Studies Program, California State University at Fresno





3.  What's Online At CSSA


    books

    Patient Resources, which is set up specifically for patients needs! There you will find: links to a drug interaction checker, an FMS medical evaluation form for filing SSDI, info on how to start a support group, sources of natural products for those with sensitivities to man-made products, and a host of other valuable resources.


    Bedroom Talk with Kelly is going full steam ahead. It's a great place for information, questions and answers on how to successfully maintain your intimate relationships while living with a chronic illness. Send your questions to Kelly here!


    The CSSA Pamphlet which is intended to be distributed or placed in public locations for those who may be unaware of these chronic illnesses or may not have internet access. The pamphlet is available at CSSA's website and may be downloaded with Adobe Reader in its actual format. It can be copied for distribution as long as it remains intact and in its entirety.  Place them in your local area (libraries, doctors' offices, hospitals, pharmacies, churches, etc.) to further spread awareness.


    We'd like your Tips on Coping with your 'invisible' illness. They'll be published in a future e-newsletter and on CSSA's website. To submit your tips, click here.


    please donate

    Your donation of any amount will help CSSA's Awareness Efforts. Click here to make a donation through PayPal.

    Support the efforts of CSSA by purchasing your everyday health, personal care and home care products and popular holiday gift items through our WatkinsOnline Store, where you'll find something for everyone!


    Make your donations count and enjoy the process! http://watkinsonline.com/cssa/

    Questions? E-mail us at: cssa@watkinsonline.com

    Thank you for your support!




4.  News And Views

    newspaper

    Moans and Groans: Could it be Fibromyalgia?

    While many doctors claim that fibromyalgia a condition characterized by general body aches is suffered by a large segment of the population, other health professionals don't consider it a true ailment at all.  Read the transcript of this informative expert-panel discussion.


    Antibiotic Resistance: A New Report Discusses What It Is and Why It Matters Most of us have become accustomed to taking antibiotics to treat a wide range of bacterial infections and we expect to get better. Today, however, more and more bacterial infections fail to respond to antibiotic treatment. A federal task force recently called antibiotic resistance "a growing menace to all people" and warned that treatments for common infections will become "increasingly limited and expensive and, in some cases, nonexistent." Read the full report (requires Adobe Reader), the press release, the brochure Connecting the Dots (requires Adobe Reader), take action, find out more about use of modified Cipro in chickens.


    Anthrax and War: The Marketing of Disaster.  A compelling commentary on the Anthrax crisis and events surrounding it. From both health and political perspectives, it contains important information that may not be common knowledge.


    The California NIDS Coalition presents "Autism Spectrum Disorders, CFIDS, ADD/ADHD, and Learning Disabilities: A Medical Epidemic and The Neuro-Immune Connection". An information session on NIDS (Neuro-Immune Dysfunction Syndromes) and the scientific link to Autism and Autism Spectrum Disorders (ASD) including PDD-NOS, ADD/ADHD, Chronic Fatigue Syndrome/CFIDS, Speech and Language Delay, Learning Disabilities and Social and Developmental Delays, featuring Dr. Michael Goldberg, MD, FAAP, President, NIDS Scientific and Medical Advisory Board. For parents, patients, and medical and educational professionals. Saturday, January 19, in Sacramento, Sunday, January 20, in San Francisco. No charge to attend. Click here for more information.





5.  Resources
 

    resources

    MCS: Health & Environment
    Many MCS sufferers improve with treatment and attention to their environments and lifestyles. However, managing MCS can be complex, difficult, and isolating for sufferers without a good support network. This site is one of many resources that can help you chart your own course to better health, and to feel the support of a community of people who understand your experiences. Download their brochure with Adobe Reader.


    Help With Your Medications


    RX List: Search for information on more than 4,500 popular drugs written in plain English and more than 3,000 in plain Spanish.

    Drug Interaction Checker: Drug interactions can result in unwanted side effects or prevent a medicine from doing its job. Find out if your medicines interact with each other.

    Find the lowest prices online for your prescriptions.

    The Medicine Program provides help with accessing free medications. Their function, in cooperation with the physician, is to assist patients who may qualify to enroll in one or more of the many patient assistance programs now available. These programs provide prescription medicine free-of-charge to individuals in need, regardless of age, if they meet the sponsor's criteria.

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    Dealing with the day-to-day struggles of living with a chronic illness can be trying. Coping Corner is the spot where you can find the online support you need to get through your day. Featuring personal stories, advice columnist Eunice Beck, RN, book reviews, and more...




  1. Specials



  2. "CSSA Essay Sweepstakes"
    Win a $35.00 Watkins Gift Certificate!


    Write in 500 words or less how you have overcome a negative aspect of your disease. It can be an actual symptom; a psychological difficulty brought on by the disease; life or work management; how you are able to deal with doctors, friends or family. Just pick ONE problem that you have turned into a positive, and write away.

    E-mail your essay to "Essay" no later than February 9th 12:00 PM EST. When all entries have been posted to the web site, The Syndrome Sentinel e-Newsletter subscribers will receive notification, and voting will commence. All members are encourage to vote! Once. ;-)

    Visitors to the CSSA web site may vote only by subscribing to the newsletter.

    Winners will have their essays posted to the CSSA web site, as well publication of their work in the following months' Syndrome Sentinel e-Newsletter!

    The First Place winner will receive a $35.00 Watkins Gift Certificate!

    Second and Third Place winners will receive The Fibromyalgia Chef, by Mark Pellegrino, MD, author of several very good books on FMS and a fibromyalgia patient himself.

    The Fibromyalgia Chef has been generously donated by Anadem Publishing. To see more publications from Adadem Publishing, click here.



     

    "CSSA Puzzle Contest"

    2 Contests in 1 Month, are you kidding?

    Nope! We're not kidding!

    Win this great book, Tired So Tired and the "yeast connection", by William G. Crook, MD, author of the original The Yeast Connection.

    Dr. Crook, who also generously donated the book,  gives you a sneak peek at Tired So Tired and the "yeast connection":

    "Forty-five years ago the mother of one of my patients told me that drinking cow's milk made her son tired and complain of headache, abdominal pain and muscle aches. About that time I read two articles in the medical literature describing the food allergy/fatigue connection.
     
    "In subsequent years in my pediatric and allergy practice I helped countless tired, aching and depressed patients by changing their diets. Then in the 1960s I learned that exposure to perfumes, floor polishes, formaldehyde and other chemicals in the home and work place, made many people tired and feel bad.

    "Then, in 1979, I learned from another patient about the relationship of repeated antibiotics and yeast overgrowth to persistent fatigue and many chronic illnesses. In my experience, many people who are "tired so tired" can regain their health and their lives by following the steps outlined in this book."
     

    Contest rules: Search the CSSA web site and find the six (6) graphic puzzle pieces. The first one to send all the pieces to "Contest", with an explanation of what the pieces represent, will win Tired So Tired and the "yeast connection". Second and Third Place Winners will win a copy of The Fibromyalgia Chef.



     

  3. The Fine Print

    briefcase



  4. Health Information Disclaimer


    CSSA provides resources for informational purposes. Health information should always be carefully reviewed with your health care provider. CSSA will not be held responsible for misuse of information or any adverse effects of recommendations stated in these resources.

    Some resource sites that represent commercial ventures are included because they are also of informational value. CSSA does not recommend the use of any particular company or product.

    The views or opinions stated in the resources collected here do not necessarily reflect those of the CSSA or its owner.  CSSA assumes no responsibility for any discrepancies or errors contained in these resources.


    Other Legal Stuff
     

    You are receiving this e-newsletter because you have expressed an interest in receiving news updates from CSSA, by specifically signing up for the newsletter from CSSA.

    If we have sent this to you in error, or if you wish to remove your name from future communications, please click here to unsubscribe.

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Subscribe to the Syndrome Sentinel: Click here

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Support the efforts of CSSA by purchasing your everyday health, personal care and home care products and popular holiday gift items through our WatkinsOnline Store, where you'll find something for everyone! Make your donations count and enjoy the process! If you order by telephone, please use CSSA's ID #328108.

WatkinsOnline.com
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