I read recently that one attempt to do this, by Purdue Pharma, the makers of OxyContin, had failed, but they are still trying. Unfortunately, I don’t believe that doctors will be any more willing to treat serious, chronic pain aggresively and effectively even they do manage to make OxyContin tamperproof. There are just too many other factors that figure into the equation… like the fact that doctors are so afraid of what the AMA recently called “DEA harrassment” of doctors who do treat pain that, all over the country, more & more doctors are refusing to treat pain adequately, if at all.

I have suffered from debilitating pain for five years and trying to survive and have some kind of a life for so many pain patients that there is a rapidly growing grassroots movement of patients, their families and doctors, insisting on Congressional Hearings about the undertreatment of pain in this country.

To be honest, I am hurting so bad tonight that I can barely think, much less type, so I hope you won’t mind if I just paste in a letter I’ve used to send out to national media outlets, hoping that someone will help bring attention to our plight. Hopefully it will explain some things…like some common myths about pain in general… anyway… here goes…

Please consider doing a report on the grievous undertreatment of chronic pain that exists in America today in epidemic proportions (according to the AMA & the World Health Org) due to fear on the part of physicians across the nation, generated by vastly increased regulatory scrutiny aimed at ending illicit use of prescription drugs. This fear, in combination with the popularity and abundance of “witch-hunt” journalism targeting the drug OxyContin (a time released opioid that has given renewed life to many chronic pain patients, like myself) has physicians across the country terrified to treat pain adequately, if at all. Somehow, America’s “War On Drugs” has become, in a way, a “War on Pain Patients” (and the Physicians who treat us).

The trauma of having serious, mind-numbing pain that is not treated adequately and aggressively, can have serious emotional and physical repercussions, such as depression and nerve damage. It even triggers changes in the immune system.

The most appalling consequence of under-treated pain, however, is that MANY PAIN
PATIENTS, UNABLE TO COPE WITH THEIR PAIN AND DESPAIRING OF EVER
FINDING RELIEF, END UP COMMITTING SUICIDE.

I realize that pain is sort of a “taboo” subject. We’re taught to be stoic in it’s face and to believe we are weak if we cannot overcome it alone, so we don’t really discuss it at all. People are dying in the silence, however, even when their condition isn’t terminal. Those who do have a terminal disease all too frequently die in agony, delirious with pain, instead of spending their final days peacefully & with some dignity.

I, personally, know all too well the torment of inadequate pain control and it (among other things), is frustrating beyond belief … knowing that good pain treatment is available, yet having it withheld. The worst part is having your doctor (in whose hands you have placed your life) behave as though your suffering is of no consequence … or act as though they blame you somehow … maybe for allowing their fear to make them feel like less of a doctor.

I have a rather unique take on the situation because my experience has taken me from one end of the spectrum to the other. I had excellent pain treatment, at one point (while living in Oregon – before moving home, to Mississippi), with a doctor who put me on a multi-disiplined treatment program which included physical therapy, massage and acupuncture as well as the drug, OxyContin (which gave me excellent pain relief, enabling me to participate in the rest of my treatment, without any of the side effects I’d had with other drugs). He also chose to educate me and encouraged me to educate myself about pain, various coping mechanisms and the medications that are used to treat it. On the flip side, I have endured an agonizing two years of being patronized, dehumanized and mistreated, while simply attempting to regain some modicum of relief & to improve my quality of life.

At the age of 45, I have been disabled by severe pain for five years now, when, had my pain been adequately and appropriately treated in an ongoing manner, I absolutely believe that I would have been able to rejoin the workforce within just a few months (I actually know this is true because I was physically ready to do so, at least part-time, when we moved here two years ago. Unfortunately, the only doctor I could find who was willing to treat me would do so only if I allowed him to cut my OxyContin dose by half, which left me with precious little pain control and thus ended my desirous return to gainful employment).

Consider, not only the human toll this “War On Pain Patients” has taken socially, financially and emotionally on pain patients and their families; but the wasted millions (if not billions) of workmen’s comp, Social Security, Medicare & Medicaid dollars paid out when patients are kept hurting, preventing them from having any chance whatsoever of going back to work. With some 50 – 75 million chronic pain patients in America, that’s an awful lot of wasted tax $$, wouldn’t you say?

I don’t have any medical training, but I have spent countless hours researching this subject and, in the course of my research, I’ve discovered a few “myth-busters”about pain that might surprise you:

1) It has been proven that less that 1% of chronic pain patients become addicted to
appropriately administered pain medication, even at high doses.
2) Pain patients generally do not get “high” from their pain medication.
3) Tolerance (a naturally occurring condition where the body adjusts, over time, to a certain medication, potentially causing an increase in dose) is often mistaken for addiction.
4) Dependence, as well (also natural, a physical dependence occurs with many medications when the body becomes used to getting a drug and can cause withdrawal and other problems if it is stopped abruptly) frequently gets confused with addiction.
5) Addiction, on the other hand, has an element of uncontrollable physical craving for a “high”, euphoric feeling. The addict’s entire life becomes centered on obtaining the next high, which causes their lives to become unmanageable.
6) In addition, medical science has proven that it is much better to treat serious, chronic pain than to put the body through the trauma of having it rage unchecked.

Keeping these things in mind, it seems even more ludicrous that, since I’ve been “treated” for pain in Mississippi, I have been lied to; humiliated; shamed; forced into withdrawal & full-on pain (for sixteen long hours) that was so fierce I became delirious (this incident, by the way, was, not only life-threatening, but it left me so traumatized that, even after being put back on my medication, I continue to have nightmares & anxiety attacks about it … and it’s been over a year). I have been accused of being an addict (in spite of the fact that I had just been evaluated by both an
addictionologist and a psychologist-who each concluded that I was NOT an addict – but that I simply wanted to not hurt so much) and, finally, I was forced to replace OxyContin with another drug, which was delivered via a skin patch to which I proved to be extremely allergic. I was left with nothing other that this pain patch for three months, which caused blisters and rashes all over my body. My doctor at the time refused to acknowledge or even see me for this problem.

It also speaks volumes that the first two doctors I tried to establish myself with here (after reviewing my diagnostic films & medical records) actually apologized, saying it was obvious that I had some pretty painful conditions; but (they continued) it would be too “risky”(?) for them to take me on as a patient because I was taking OxyContin. They said that my dosage made it even more “risky” for them because it was so high. My former doctor had carefully titrated (built up slowly to find the correct therapeutic dose for an individual) my OxyContin dose & I’d never had any problems with it, so I knew it wasn’t too high for me. They explained, however, that the therapeutic value wasn’t as significant as the number of milligrams (which would “red-flag” the DEA). One of them went so far as to advise me to head back to Oregon if I could, because, no matter how medically appropriate my treatment was or how much I suffered without it, NO doctor in Mississippi was going to “risk” treating me with OxyContin or any other narcotic, especially at that dose. He did say that it really had nothing to do with me directly, that this was just the way things were.

These atrocities cannot be allowed to continue. What can be done? Some of the things that come to mind are:

1) Insisting on Congressional hearings about the undertreatment of pain that are being called for by several grassroots movements started by pain patients, doctors and other advocates and letting our Legislators know that we want a change.
2) Legislation that would protect good doctors & encourage adequate treatment for pain.
3) Doctors (especially family practitioners — our first line of defense against illness and disease) have to become proficient and current in their knowledge of pain treatment. This should be a requirement for all physicians.
4) A rotating group of physicians from around the country who are qualified in pain treatment should be appointed to audit physicians suspected of over-prescribing or diverting narcotic medications. (As opposed to the current protocol, where DEA agents can [and do} burst into a physician’s office full of patients, the agents in full SWAT-like gear {including weapons} and confiscate all the medical records — simply on the basis of an anonymous tip or the vague suspicion of an agent (with no medical training) that over-prescribing is going on. The doctor’s records are then audited by someone chosen by the DEA (in a case I recently read about, they chose a family practitioner who retired in 1994-just before most of the major breakthroughs in pain medicine).
5) There must also be ways found, agreed upon and utilized by all 50 states to discourage illicit drug use WITHOUT penalizing people in pain.

First, however, before any of these things can happen, we have to open the lines of
communication and allow valid education about pain and the drugs used to treat it to replace the old myths to which many folks still subscribe.

I hope that you will help to accomplish this. If so, you would literally be saving lives. Chances are, most of those in your audience know someone who suffers from chronic pain. Even those who aren’t personally affected right now, could become so at any time.

Pain is no respecter of persons and absolutely no-one is immune.

I can be reached at osceoladb@hotmail.com if you wish to contact me. Both I and my research are at your disposal.

Sincerely,
Katie Burge