Melissa Kaplan's
Chronic Neuroimmune Diseases
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Last updated January 1, 2014

People with chronic intractable pain generally stop complaining because they've found that people really don't want to hear about it. Family and friends generally ignore those with CIP, or do really helpful things like telling the person with CIP about all the terrible things that will happen to them if they <gasp> take opiates for the pain.

Despite repeated reports in the medical literature that pain is chronically undertreated in the US, and the fact that giving a patient enough medication of whatever type works to reduce the pain and improve their quality of life does not make addicts of them, continues to go unheeded, even when laws are enacted to counter this ignorance and pave the way for appropriate treatment and realistic assessment standards.

A Rose By Any Other Name Is A Tuna Sandwich
Before we can talk intelligently about drug-seeking behavior and addiction, we need to understand the words used versus the desired outcomes.

Addict/Addiction
Interestingly enough, the word addict didn't start out to be the boogeyman of medicine. According to the On-line Medical Dictionary:

Addict was formerly used in a good sense, as, addicted to letters, but is now mostly employed in a bad sense or an indifferent one, as addicted to vice, addicted to sensual indulgence, addicted to staying at home. Devote is always taken in a good sense, expressing habitual earnestness in the pursuit of some favorite object, as, devoted to science. Consecrate and dedicate express devotion of a higher kind, involving religious sentiment, as, consecrated to the service of the church, dedicated to God.

Origin: L. Addictus, p. P. Of addicere to adjudge, devote; ad + dicere to say.

The Academic Press Dictionary of Science and Technology defines an addict as "a person who suffers from addiction; someone who is physically and emotionally dependent on the intake of a certain substance, such as alcohol or drugs." (And, lest we forget, the nicotine in tobacco is a drug. There are far more people in this country who are addicted to or otherwise regularly abuse alcohol and tobacco, yet those two substances are not only completely legal, they are widely available.)

Narcotic
Here again let's turn to the Academic Press Dictionary of Science and Technology for a definition:

1. any of a group of substances, including the drugs opium, heroin, morphine, and codeine, that have a strong tendency to produce depressant effects on the central nervous system, such as dulling of the senses, insensitivity to pain, and sleepiness, and that when taken in large doses can produce euphoria, stupor, coma, or even death. Narcotics are prescribed clinically to relieve pain or induce sleep; they are noted for producing physical and psychological dependence and their use is regulated in the U.S. and other countries; any of a group of substances, including the drugs opium, heroin, morphine, and codeine, that have a strong tendency to produce depressant effects on the central nervous system, such as dulling of the senses, insensitivity to pain, and sleepiness, and that when taken in large doses can produce euphoria, stupor, coma, or even death. Narcotics are prescribed clinically to relieve pain or induce sleep; they are noted for producing physical and psychological dependence and their use is regulated in the U.S. and other countries.

2. of or relating to a substance that produces insensibility or stupor; of or relating to a substance that produces insensibility or stupor.

Well, yes and no. What this definition fails to take into account is exactly what doctors, federal agencies responsible for drug regulation, and the general public fail to take into account: otherwise healthy people who seek excessive amounts of chemical substances to avoid the stresses of daily living are seeking drugs to produce the highs and stupor we think of when we think of "drug addiction." However, for those people who are in chronic intractable pain, the last thing they are seeking is a drug-induced stupor. Their pain has already created a condition of stupor in many cases, in other cases has so cut down their ability to complete the basic activities of daily living, such as showering, basic grooming, feeding themselves, and doing a minimal amount of straightening up their living quarters that they may as well be in a stupor - that would at least cut down the frustration of not being able to do what they need to do, let alone want to do, and anger towards those who can't tell the difference between someone trying to escape from living and someone just trying to live a normal life.

Properly treating pain means working with the patient to find the right combination and dose of drugs - including opioids - to find the combinations and doses that reduces the pain to such a degree that the patient can experience an improved quality of life, can care for themselves and perhaps even be able to return to work. It does not mean putting the patient into a stupor. If the patient ends up in a stupor, the doctor needs to be ready to adjust medications, try different ones or different modes of delivery. Since patients who are put into drug-induced stupor can't always think clearly enough to communicate clearly with the doctor, the doctor must spend enough time eliciting communication with his or her patients instead of just assuming the patient will tell the doctor is something is wrong.

By way of example...
Years ago, I got an extremely bad urinary tract infection. When treating myself with cranberry juice didn't' work (it got to the point where my urine was so bloody it sort of looked like cranberry juice), I finally dragged myself off to the urologist. After taking the history, he did a scope procedure to look inside my bladder. "Oh, my!" I heard from down between my legs. Great, I'm thinking, it's even worse than I thought. "I have never," he finally said, "seen a bladder look this bad that wasn't actually cancerous." Oh, my, I thought.

The doctor gave me prescriptions for three different drugs: an anti-inflammatory, antibiotic and antispasmodic. I dutifully took all three as directed. And proceeded over the course of the following week to enter into a sort of fugue state. I couldn't do my work, couldn't work on my wedding planning (which was coming up in five months), couldn't do much of anything but sit and vegetate. I ended up taking a three month leave of absence, thinking that for some reason I was heading for a nervous breakdown.

When I went for follow up visits to the doctor, I stupidly didn't say anything about how I was feeling - after all, he said my bladder was looking so much better and he assumed I was feeling much better...so I must be losing my mind. During this time, I talked with my mother. She had worked in a pharmacy as well as spent years developing drug claims processing systems and coding drug claims, in the process learning a hell of a lot about drugs and contraindications. I picked up a lot of information myself through the years, doing drug audits which required reading the Physician's Desk Reference information on drugs, and advising physicians about drugs other physicians prescribed for their patients and concerns about contraindications. So, here were two highly intelligent and drug-educated women, both of whom didn't realize that the morass I was sinking into was drug induced.

I didn't figure it out until I had been back at work for a month and had to go for my final recheck. After the scope procedure, the urologist gave me a blister pack containing a three day supply of the antibiotic, stating he didn't want to cause a reactivation of the infection by the irritation caused by the scope itself. I waited until I returned to my office before taking the first pill.

Within an hour, I felt like I was trying to push my way through a swimming pool full of Jell-O® again. I had to take the rest of the day off, and stopped taking the drug. Something clicked in some still-functioning part of my brain that day, and when I returned to work the next day, the first thing I did was haul out the PDR. Two of the drugs had known CNS side-effects, and one was contraindicated for use with one of the others.

I had been in a drug-induced fog for three months, hadn't realized it, and hadn't mentioned anything about it to my doctor. That is not to say that he would have realized it was the drugs causing the stupor - many doctors and nurses are ill educated about side effects, even common ones. Most of their drug education comes from the pharmaceutical sales reps who make the rounds of medical office, dropping off handfuls of samples. Nowadays, some pharmacies are regularly printing out detailed information sheets for each prescription they fill, and some have computer systems that can scan for contraindications. The burden, however, still falls on the patient and patient's family, the very people who are generally least able to marshal the resources to do the research and understand the literature. If my mother and I couldn't figure it out when it was happening to me, it greatly reduces the odds of those without the education and access to current resources figuring it out - and then getting their doctor to listen to them. This problem is made worse if the patient is in a managed care plan or HMO where doctors and nurses are forced to shove patients through like garbage down the kitchen disposer rather than treat them like medical patients.

So, this all means...what?
In a June 15, 2001 San Francisco Chronicle article about a jury finding of elder abuse and reckless negligence in a doctor who failed to adequately prescribe pain medications for a terminally ill man, the California Medical board indicated that they rarely receive complaints about the undertreatment of pain. In order to make it clear to the agencies who have some power in making changes, it is critical that inadequately treated pain patients make the effort to file formal complaints.

The following avenues for filing complaints exist in California. For those in other states, check the related websites and code books (contact your public library to find out which branch has them) in your own states. If those outside of California would like to send me links to the relevant sites in their state's sites, I will be happy to add them here. Due to my own health situation, I am not able to research the other 49 states myself.

Medical Board of California
Central Complaint Unit
1426 Howe Avenue, Suite 54
Sacramento, CA 95825-3236
(916) 263-2389 phone
(916) 263-2387 fax
1-800-633-2322; 1-916-263-2424 Complaint Assistance

The Medical Board is responsible for investigating complaints and disciplining physicians who violate the law. If a doctor or other Board licensee breaks the laws that apply to the practice of medicine, Board staff will investigate and may file appropriate charges. Staff can investigate the following types of issues:

· the quality of care and treatment provided by a physician (e.g. negligence)

· violation of drug laws or misprescribing

· substance abuse by the physician

· sexual misconduct by the physician

· dishonesty (including filing fraudulent insurance / Medi-Cal / Medicare claims)

· practice of medicine by an unlicensed person

Staff of the Central Complaint Unit can assist by providing information about the issues within the Board's authority. They also can provide information about how to file a complaint with the Board, and the types of documents that may be needed. Some patients do not wish to disclose their identity. If that is the case, staff will assist you in preparing the complaint, however, the Board may be unable to pursue the complaint unless we can document evidence of the allegations made. Except for special circumstances, complaints are required to be in writing. Complaint Forms can be obtained by calling the Central Complaint Unit at either of the numbers above or by printing out the Consumer Complaint Form form at the website (note: requires Adobe Acrobat). A complainant may be asked to sign a medical records release form if the Board needs to get medical records from a doctor, hospital or other source to investigate your complaint. If the complaint is NOT one the Board can handle, staff will provide referral to the appropriate agency or organization. You will also find the Guidelines for Prescribing Controlled Substances for Intractable Pain at their site.

Remember: According to the Medical Board of California, undertreatment of chronic pain is a non-issue in the state because they rarely get complaints from patients. The only way their understanding of the true scope of the problem is going to change is if people who are not getting the pain relief they need to be able to cope with basic ADLs or return to work start filing written complaints. The complaint form is only two pages, plus any additional information you need to explain the circumstances of your complaint.

You may want to send copies of your complaints to other agencies, as applicable. Check out the resources below for more information.

California Medical Association
The CMA's Got A Complaint? page has useful information on how to file complaints and who to send them to based on the type of provider and health plan. They handle complaints and actively advocates for HMO and managed health plan patients.

Department of Managed Health Care
California Department of Corporations
California HMO Help Center
980 Ninth Street, Suite 500
Sacramento, CA 95814-2725
1-888-HMO-2219 Phone
1-916-229-0465 Fax
1-877- 688-9891 TDD

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