HEYOKAT'S STORY
I was 28 when I suffered the injury after which the pain never stopped. The reactions to my complaints were, "Your x-rays are within normal limits and you're not acting like you're in pain so I don't believe you", or, "You're obviously just in here looking for drugs".

I had a couple of things working against me. I wore my hair long and I was in superlative physical condition (I was a martial artist, a rock climber etc.). My normal resting pulse was low, as was my blood pressure. When I presented with a pulse of 90, a BP of 130 over 86 or so, and not screaming in pain, I suppose it made my position look a little unbelievable. I also have an inherited abnormality; for me, centrally acting substances either don't work right, don't work except in a huge dose, or don't work at all.

Meanwhile, I would work for as long as I could, when the pain would either physically stop me, or my irascibility would get me fired. There was a long time there when I wasn't really sane. My father was abusive, so I learned as a child to shut down until I finally lost my temper - a VERY rare happening. As time passed, as sleep or any kind of rest became more and more difficult to come by, as my self-esteem was eroded and the pain never went away, I reverted more and more to this behavior, which of course didn't help me in finding treatment.

Let me give you an example of what I mean when I say wasn't quite sane during this period. When one doctor told me I was just trying to get pain meds, before I realized what I was doing I had him by the throat and had every intention, I think, of killing him. Because of this incident, I was put through drug rehab, or at least started through it, but the rehab people said I didn't have a drug problem, I had a pain problem. By this time, I was in many ways emotionally childish; either withdrawn or very short-tempered.

After over a year going to this hospital, and a new doctor every time I went, one of them finally ordered a CT scan. It showed enough damage that he ordered an EMG, which showed severe nerve damage. I almost cried from relief. Unfortunately, it made little difference. They wouldn't operate, and by now it was the "Just Say No" years. They sent me to a pain clinic, which didn't work as I couldn't convince myself that pain was a good thing. Afterwards, again, sometimes a doctor would give me a little medication, sometimes not.

About 11 years after the injury, I was in such bad shape that I could barely move at all. Two disks had finally fragmented and ruptured, and a facet joint had broken. Finally, my girlfriend took me to a civilian hospital for the first of three operations. After the operation, all they would give me was morphine at an inadequate dose. I refused a second dose and demanded they call the doctor and get the hydrocodone reinstated. Six weeks after the operation, I was operated on again, as I had gotten as bad as I had been before the first. Even before the second operation, the doctor was convinced I was a narcotics addict because the 5 mg hydrocodone hadn't worked, so afterwards, he refused to see me again. The second operation reduced the pain somewhat, and I went to counseling for three months afterwards. This helped me to realize what I'd been doing emotionally, and to correct it.

About a year after that second operation, after I had come here to Oregon, I was operated on a third time. The neurosurgeon said that whoever had operated on me before had made a horrible mess of things. After more doctor shopping, and the familiar horrors that entailed, I finally found the doctor at VAMC Portland I am now seeing. It took a little over a year for us to find the proper amounts of the right medications, and I now realize that it took that long for me to get over my insecurity about not having the medication available. When the VA finally left me with this one doctor long enough for him to get to know me (this is a new policy), I told him how much of what I wanted and why, and we agreed to try it out. In over two years, the amount of medication I'm taking has actually dropped. The per-dose amount hasn't changed at all.

The emotional ups and downs have been as difficult as the physical pain. What do doctors think someone is going to act like when they are in so much pain ALL THE TIME that they not only can't sleep, but also are exhausted from spending so much of themselves all of the time fighting the pain? Additionally, I had to endure the pressures of having to survive on an SSDI check (I'd have to quit eating for the last week or so before the check came in) and the pressures of trying to interact with other people.

It has now been a little over two years since I found a doctor who gave me some pain relief. I have been very happily married for over a year, am resting more than I have in over a decade, and am working with Vocational Rehab to try and do something useful. Three years ago, I couldn't have imagined any woman wanting to marry me, or even considering trying to work again.

I dread the day my doctor retires or is transferred, . Despite the facts that I've cut my medication levels myself, that I've turned down drugs any junkie would kill for, or that my tests all show that I SHOULD be in pain, I have no doubt that if something happens to this treasure of a doctor who listens and believes, I will be back to doctor shopping and defending myself against the charge of "addict".

Really, it's taken not only this irreplaceable doctor, but a lot of hard work and soul-searching on my part, and the love and patience of this extraordinary woman I married to get me to where I feel like a worthwhile human being again.

The American Inquisition: Chronic Pain

Article 1

By Heyokat

With review and input from a local physician who, due to his present volume of patients, would prefer to remain anonymous.

Note: This is not intended to replace the expertise of a physician, but to supplement and inform that expertise, as well as to inform patients, potential patients, and those who live or interact with chronic pain patients.

"We must all die. But that I can save a person from days of torture is what I feel is my great and every-new privilege. Pain is a more terrible lord of mankind than even death itself." Dr. Albert Schweitzer, 1953

I've written about numbers, medications, other treatment and so on. I've mentioned other things, but haven't gone into detail. I've been told that none of this information really hits home until it gets personal, so in this article I'm going to tell you a little about my own journey in pain. It isn't one of the worst I've heard of by far, but it should still give those of you who have healthy bodies a good idea of what faces you and those you love around the corner of one injury or botched operation.

Pain: The Emotional Journey

When I was twenty-eight, I was a very physical person; it was, in my own mind, mostly who I was. I was six feet, two inches tall and weighed about 240. I was a lifelong martial artist, a rock climber, a tennis player, an outdoorsman. I was proud of my physique, especially as I had been a skinny, "four-eyed" kid. I worked ambulance - a very demanding job physically - and was a senior electronics and mechanical design drafter; I worked hard and made pretty good money. I also took pride in helping around the house, including cooking and cleaning; I tried hard to be a considerate partner. I was a part time professional musician and song writer; a Paramedic Neonate Transport Specialist - an elite new kind of paramedic. Then I got hurt.

At first, everyone, including the doctors, thought it was temporary. As time wore on and I continued to hurt and to have to limit my activities though, more and more, the doctors thought I was faking and just after drugs, and the burden on my wife became harder and harder to bear. My insurance company found a way to drop me. I was able to work less and less because of the pain, so I brought in less money, and did less around the house. My wife got tired of the "excuses', tired of hearing and seeing that I was in pain.

"Get over it; lots of people hurt, and they don't just stop living!", she'd say. Finally, she left, taking our four year old son with her. As far as she was concerned, I was useless bum who'd let her and our son down. She made certain I knew that she intended to raise our son knowing that about his father, too. I lost the car, and the bills just kept mounting, though I had nothing to show for them.

When I had nothing for the pain, I stayed awake until exhaustion forced me to sleep for a couple of hours. Sleeping, I had nightmares; when I awoke, I was in more pain, as though the sleep had made me more sensitive. I was lucky to sleep three hours in four or five days. When I had something for the pain, I rested a bit more, but still not well. I worried about money, about my son, about finding something for relief.

I was fired from doctor's offices often. I was called an addict, a malingerer, a coward. I doctor shopped, because even the few who would give me something for the pain would only give me maybe a week's worth and tell me to make it last a month, or three months. I was in and out of every ER I could reach. I learned how to lie to get as much relief as possible from each doctor or ER. I had no pride left. I had to beg for care, beg or borrow money from friends, relatives and agencies, beg a piece of someone's living room floor to sleep on. I was exhausted and in terrible pain. If I had kept any pride, I'm convinced I'd be dead by now. Even when I finally got SSDI, it paid just enough that I had to quit eating for the last five or six days before payday. I did without power in the summer, got behind in the winter so that eventually it was shut off; luckily, that always happened close to Spring. For a while, trying to be closer to a large city where I might find help, I slept under a bush in a park; this was in LA.

I really wasn't quite sane throughout most of this. Who could stay sane? This was, of course, taken as further evidence that my problem was psychological, not physical. I hated doctors and "help agency" people; they were all hypocrites. Anger was the only thing I had that got me out of bed - when I did get out of bed. I was put into drug rehab several times, but they always threw me out because, they said, I had a pain problem, not a drug problem. This made no difference to the doctors, of course. I was sent to a couple of pain clinics, but they did me no good either. The basic theme always seemed to be that pain was good and the drugs that relieved it were bad, and I never got crazy enough to accept that.

My physical appearance was terrible. I couldn't afford haircuts; I couldn't afford razors. I washed in gas station bathrooms; once I washed in a frozen birdbath on someone's lawn. I weighed 155. My glasses had long since been broken and taped and retaped. My clothes were old, worn and often dirty; I washed those in gas stations too sometimes. I got lice a couple of times; I stole the shampoo to get rid of them. I desperately needed dental care, but SSDI and the VA didn't pay for that, so I was often ill from dental problems, and my breath stank. They didn't pay for glasses, either. I'm functionally blind without glasses.

I drank sometimes to get away from the pain. For a while I used any drug I could get my hands on, half hoping I might get lucky and die. I got in trouble for assaulting a couple of doctors who were very outspoken about what kind of lying, malingering trash I was; how I was obviously just trying to live on drugs and the public dole, too lazy to work for a living like everyone else - as though ANY disability paid even enough to live on.

I was terribly lonely. I thought I'd be alone until I died now. After all, I had absolutely nothing to offer anyone. My instruments had been stolen, along with my beloved books. I couldn't own much, both because I couldn't afford much, and I couldn't carry much with me because I couldn't lift it. I walked very slowly, leaning on a walking stick, sometimes having to lie down on someone's lawn or on the grass in a public park. Sometimes I wondered what had happened to the naïve, hard working, hard playing, healthy, happy, loving guy I had been. People had liked me a lot. After I got hurt though, they all stopped coming around. The few old friendships I'd had were strained to the limit, beyond it sometimes, by my always needing a place to stay, food to eat, not to move because I hurt too much. I always needed something, and even though I seldom asked my old friends, it made people uncomfortable.

This was my life for over ten years.

Going on four years ago, two doctors screwed up two operations that made me even worse, but it was the beginning of treatment. I found a doctor who began to take care of me correctly. I had another operation, and started getting pain medication for the pain that couldn't be treated any other way. The pain wasn't gone, but it was under control. Just as important, perhaps, was the fact that my doctor listened to me, and trusted me. I met and fell in love with a wonderful woman who understood and accepted what my condition was. We married, and between us we have five grandchildren. We also have ten cats. I've been playing music for the local nursing home and senior center. I've been trying to find a way to go back to work.

I'm a moderator of one pain support group on the internet, and a member of four others. My contributions seem to be very appreciated. I can sleep three or four hours at a time now. I have enough to eat. I have a guitar and a piano, and I have books again. I have a good life.

Ask most people who they are, and you get a list of what they own, skills they have, and who they know. I was not so different from other people in this way, and when I lost so much, I lost my own idea of who I was. After so many years of learning to expect abuse, of losing everything dear to me but my life, it took a long time and some professional counseling to regain some pride. I had to learn that my physique, how strong I was, what I could do and could not do, was not all of who I am. I have other gifts; I have value because of who I am. These are hard lessons to learn after a life like that. This reconstruction also takes hard work and courage; the need for these did not end when I finally found help. Through all of this, I learned that I am stronger than I ever thought I could be.

Sometimes I have to see specialists for one thing or another. These doctors still tell me that the drugs will ruin my life. I'm no longer tempted to spit on them, but I still get angry. They will not hear that these medications gave me my sanity and my life back. They are determined not to be educated, and not to see any evidence that doesn't back up their prejudices. To me, they are apathetic or fearful torturers and murderers, and it's hard not to treat them that way.

The American Inquisition: Chronic Pain

By Heyokat

With review and input from a local physician who, due to his present volume of patients, would prefer to remain annonymous.

Note: This column is not intended to replace the expertise of a physician, but to supplement and inform that expertise, as well as to inform patients, potential patients, and those who live or interact with chronic pain patients.

There are uncounted millions in the US alone who are in pain every moment of every day, without end or relief. They are routinely told to "Learn to live with it", which is physiologically impossible; that they can't possibly be in pain because nothing shows on x-rays. They're told that because they don't look like they're in pain, they must be lying. They are called "drug seekers", which is the new word for addicts. They're called malingerers, fakers - liars. They're accused of trying for "secondary gains" such as not having to work for a living - as though any disability pays enough to live on. They're accused of looking for secondary gains like getting sympathy from friends and relatives - which ignores what really happens. As long as the patient DOES look and act like he's in pain, people get tired of it. Friends and relatives feel helpless, unable to do anything useful, uncomfortable, unsure what to say, and they stop coming around. The term "secondary gains" is a fantasy. None of these gains is worth losing a mate, a home, a decent income, usefulness - a life.

What really happens is loss of the ability to work, inability to do the things you love, the things by which you've learned to define your self. Ask someone who he or she is, and most often you'll get a recitation of what they do for a living, of what they own, of who they know. When suddenly someone is in unending pain, all of this is lost, a little at a time. No one has really done a definitive study, and I hesitate to present statistics. As Mark Twain once said, "There are lies, there are damned lies, and there are statistics". Still, to offer an idea of the scope of this problem, estimates run from 9,000 to 16,000 people every year who die by their own hands in the US alone because of untreated pain. This gives the lie to another favorite statement by doctors: "No one dies from pain."

As for not looking like they're in pain, to begin with, no one can scream and writhe for years, much less for decades. If it sounds unlikely that someone could go so long in this society without being treated, sorry - you're wrong. I went for more than 10 years. I know others who have gone for twenty and more. After a while, we get lonely. We learn that if we moan and groan, complain, cry, or even move like we're in pain too much, people avoid us. We get tired of hearing ourselves, so it's easy enough to understand the avoidance of others. We learn to move carefully, and only when we must. We learn to school our faces to blandness, our voices to silence. Also, the loss of dignity is so great that we come to treasure any relationships we have, and to take a little pride in at least being able to control most of our outward reactions when we're around others. We lose so many of our reasons for any pride at all.

It is also one cause of our downfall. This control isn't something we can just turn off. It's something we must maintain every waking moment. When we're seeing a doctor, we'd have to resort to acting in order to fit his idea of what we should look and sound like. Not that it would help in most cases - doctors are used to dealing with acute pain, not chronic pain. Acute pain is when you slam your hand in a door. You hurt a lot right now, and you can reasonably expect the pain to go away sometime soon. Chronic pain doesn't go away.

This is the first of what I hope will become a regular column. I've been lucky: my pain is, after almost fifteen years, pretty much under control. Most people in my position are not so fortunate. Part of the reason is that, while doctors are taught pharmacology, they are NOT taught pain management; they get an average of one afternoon of it in medical school. Also, the information they get in that afternoon is out of date, and is riddled with propaganda and incorrect assumptions.

In future articles, I'll show how pain works, why people on narcotics do not automatically become addicts, that different parts of the nervous system are used in transmitting chronic pain and acute pain and therefore need different treatment, and that different treatments are needed for different types of pain and even for the same type of pain in different people. The next article will begin with myths and other misunderstandings about pain and it's treatment.

There is finally a new treatment paradigm for pain. People with chronic pain do not have to remain untreated, they do not have to be a burden on their families or society.

There is an answer!