Lupus NewsLog Articles With Attitude

"A mind once stretched by a new idea never regains its original dimension." Oliver Wendell Holmes

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Lupus NewsLog Articles With Attitude offers research based information, minus the double-talk, from a lifelong lupie point of view. I've lived with SLE for more than 50 years while researching lupus and other autoimmune diseases for more than 30 years. With input from other lupies and our doctors, I dig up clinical research data, to help us identify disease stimulants in our environment, our healthcare and our daily lives. We're gaining wisdom to outsmart the wolf.
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Our Right to Pain Relief

For those of us with Lupus, relieving pain can be a very complicated process since Lupus is in itself an extraordinarily complex disease. It’s often accompanied by diseases which are painful on their own, such as Raynaud's, Fibromyalgia, Scleroderma, Sjogren's and/or others. Finding the correct diagnosis can be a long and arduous journey. Often, by the time we’ve arrived at that point, our illness has progressed to the point of severe chronic pain. Achieving satisfactory pain relief can be as difficult and exacting a process as was finding diagnosis.

On January 1st, 2001, hospitals, all nursing homes, in/out clinics, doctors' offices and pain treatment centers across America were admonished and instructed to fully alleviate patient pain, according to the patient's own assessment of pain. The Joint Commission On Accreditation of Healthcare Organizations signed this act, giving doctors, hospitals, etc., one year to voluntarily comply. Signs and posters explaining our right to pain relief must be prominently posted in all medical facilities.

While this applies only in the United States, it stands as a model for all countries and this standard can be useful to those with chronic pain, all around the globe. Whatever the practice in a particular country, if we act as self-advocates for patient rights and proper treatment of pain, we can raise the standard to a higher level worldwide.

Younger children and those who cannot otherwise express their needs must be offered pictures from which they can identify the level of their pain, the rest of us can select a number from 1 to 10. If we aren’t offered adequate pain relief options, we can refuse poor or incorrect treatment, until our needs are properly met.

We have the right to choose another physician and/or clinic in order to receive the care we merit. When our rights are abused, we can file official complaints with the medical review boards. If the filing of such complaints adversely affects our medical services, that issue could be also addressed by official complaint.

Chronic pain is the reality of daily life for a great many people and many of us are under medicated or not receiving medication at all. A recent study claimed that infants in the womb feel no pain but, even if that were true (other research claims they do), what compassionate physician or parent would chance inflicting pain on a baby? Already, a newer study shows that, traditionally, children’s pain needs are often underestimated and disregarded. Children are typically undermedicated in circumstances where an adult usually would be given medication.

Under or untreated chronic pain hinders healing, debilitates the body's resources, further stresses the auto-immune system, affects the heart, causes depression, sleep disturbances and reduces, sometimes to a crippling degree, a person's ability to function in daily life.

When these factors are overlooked or misunderstood, people with chronic pain are sent the message that they’re somehow "responsible" for their symptoms and "overreacting" to their pain. This medical brush-off can create a fear of character weakness and sense of shame. Because of this, many people suffering with chronic pain habitually underestimate and under-report the level and types of their symptoms, while struggling to lead productive lives.

We’ve been taught to fear pain relief more than pain ~ that's a fallacy. This attitude goes back to the 1920's, when the U.S. government's war on drugs began in earnest, soon spreading and affecting the world view. Some patients and physicians only trying to alleviate pain have been treated like criminals, with ruined lives, destroyed careers and jail records. Numerous studies have shown that morphine and its derivatives, which are the most powerful of all pain relieving medications, are not addictive when properly prescribed for chronic and/or severe medical or terminal conditions.

With these powerful pain medications, our bodies react much as diabetic systems do to insulin. When administered according to actual need, the body is released from pain to focus on healthier function and survival. The relieved body is then better able to fight infection and balance immune system function. Puritanical perceptions are not based in science or compassion and should never be allowed to overrule the needs of people in pain.

The Medical Management of Pain by B.A. Robinson is an excellently researched and written article on the necessity of adequate pain relief and the misconceptions that deny the needs of people in chronic and/or terminal pain. Treating Doctors as Drug Dealers: The DEA's War on Prescription Painkillers by Ronald T. Libby makes clear that laws once meant to protect us now criminalize compassion. This policy analysis can be downloaded in full text.

The American Pain Foundation (APF) is an independent, nonprofit information, education and advocacy organization serving people with pain. They have a patients' self advocacy and education website. They have a Pain Information Library and a APF Publications page with many helpful articles.

The articles, guides and kits APF offers can be invaluable to those living with chronic pain. I especially recommend their Pain Action Guide, which includes the Pain Care Bill of Rights* and essential advice on finding and communicating with a doctor and/or nurse-practitioner who can work with you to ease your pain.

Regardless of who we are or where we live, these are basic rights inherent to us all and when we act as our own advocates in pursuing them, we can greatly improve the quality of our medical care. Taking charge of our own lives by exercising our medical rights is a positive, forthright stance that can permeate every aspect of our lives, improve our health and invigorate our spirits.

Wellness is more than a physical condition; it is the balanced condition of mind and body. Lupus may be a big part of our lives but it shouldn’t overwhelm and control our entire being. Once we take steps to liberate ourselves from pain, we begin to free ourselves to live life more fully.

The Lupus Foundation of America has an Advocacy page where American citizens can urge Congress to pass a strong Patients' Rights Bill. If Lupus organizations and other healthcare advocacy groups throughout the world create similar pages and their citizens get involved, dynamic worldwide changes in patients' rights may well become a reality. It's our responsibility to make it so; we are the ones with the most to lose or the most to gain.

I wrote this article in 2001 and updated it in 2007 - are you still living in a world of hurt? It seems there’ve been no broad, sweeping changes in the last 6 years but we can’t let the Pain Care Bill of Rights (posted below) be forgotten and ignored. We have a right and a dire necessity to protect our needs, our bodies and our lives. Those who speak up, create change. It's your life - claim it.

©Shar Phoenix, Lupus NewsLog. Article reprints are available upon request. Contributing writers retain their own copyrights. All Lupus NewsLog sites and pages offer research based information to assist in understanding lupus and in self-advocacy. Content here, on sister sites or in email response is not a substitute for medical advice or treatment. Consult a qualified physician for medical attention.