Dan's Article on Chronic Pain Self-Advocacy


Dearest Pain Family,

Well, I woke up at 2:00AM for the usual reason and decided to put my awake time to good use. It seemed to me that a lot of us, especially our newer members, could use a Chronic Pain Self-Advocacy pamphlet of some sort.

Keep in mind that everything in this is my opinion only, but also keep in mind that these opinions have been formed with fifteen years of chronic pain, a decade of Navy Hospital Corps and civilian education and experience in medicine, including EMT-1A with 10 years field experience, paramedic neonate transport, toxicology and general lab assistant and phlebotomy, general sick call, industrial medicine, x- ray assistant, hospital ER, med/surg, ob/gyn, geriatric and oncology wards, nursery, neonate ICU, Navy airfield crash call, SAR, classes in pharmacology, psychology (with field application), biology, histology, A&P, inorganic and biochemistry, electronics and mechanical design (handy for figuring out and understanding body mechanics/stress loads, etc), an IQ (whatever that's worth) of 163 at last measurement, chiropractic assistant, and the MAJOR incentive of chronic pain to make me keep up with the newest developments in the field of pain management, neurology and so on behind them. I may be a layman to doctors, but I'm by God a well-informed layman!


Okay, here we go:

1). The first rule for a CPP (Chronic Pain Patient) is CYA - Cover Your Ass!! ALWAYS get and keep copies of all tests, treatments, operations, doctor's notes, etc. If you can, get copies of x-rays, MRI films, and so on. Be aware that THIS IS YOUR INFORMATION; YOU'RE ENTITLED TO HAVE THESE COPIES BY LAW! It's a real pain, but you'll need all of it repeatedly. More on this to follow.

2). Be straightforward with a new doctor about how many and what kind of docs you've seen, and why you're no longer seeing them.

If you lie about any of this, it WILL come back on you, and will only reinforce the opinions of some docs that you're an addict, drug-seeker, etc. He may form that opinion anyway; if so though, at least you've been honest, and you can't help it if he prejudges you.

3). Regarding tolerance, once the proper med and dosage is found, the per dose amount doesn't change for a CPP patient. Mine hasn't in almost three years, though ON MY OWN I've significantly cut the monthly amount that I take. It took almost two years, though, before I had the pain enough under control and had enough emotional stability to find a useful kind of physical therapy, which is what helped me do that.

Also, if you know this information, be clear about how much of what you want, and why. Different systems in the body are involved with transmitting pain and using narcotics in a CPP than in acute pain patients who can expect the pain to go away, like, say, with a broken arm. CPP's react differently to narcotics than acute pain patients or addicts. A dosage that will handle acute pain will not necessarily
help chronic pain. Also, CPP's don't get sleepy, "buzzed" and so on; the drug and the pain seem to cancel each other (though there's always some pain left) with few or no side-effects. In fact, a CPP's energy levels and alertness increase, presumably because the patient is no longer spending so much of himself fighting the pain; also, he/she's able to rest better.

Anyway, if 7.5 milligrams of hydrocodone works for you, and 50 pills last you a week, then it's not unreasonable to ask for 200 pills per month. Also, as the human animal is NOT a steady-state, unvarying machine, and life also is not unvarying in it's demands on us, there will be times when the pain is so bad that the regular medication doesn't work; this is called breakthrough pain. For this, I get 30 tabs of 30 milligram morphine sulfate, NOT Contin, as Contin releases too little morphine into the system at a time to be useful for anything except extending a fast-acting narcotic. My doctor has written as many as two such scripts in a month, though I average one refill every three months.  When the pain subsides to something the weaker drug can handle, a CPP can go back to his original dose; the morphine DOESN'T raise the tolerance to where the weaker drug no longer works. I take the same amount per dose now that I did to begin with, though how much I take over a month varies.

4). Offer a contract, with the understanding that it will take a little time to find the right dose, and so every little detail of this contact can't be graven in stone. You may need a little more than you started out with, or it may turn out that you need less. Make sure there is some flexibility there. And make sure that you DON'T ask for less than what you need because you're scared of frightening the doctor off; this will only insure that you're back in the same boat - not enough meds.

5). The pain meds don't always help with being able to get to sleep, either. For me, I've found that Soma helps a lot. It works quickly, wears off quickly, I can be awakened easily at any time - the stuff doesn't knock me out, it just ALLOWS me to sleep - and there's no "drug-dragged" feeling the next morning. Sometimes even that doesn't help due to muscle spasms though, so I have a small monthly script of diazepam available, though I use it as little as possible as I hate the side-effects.

6). Ask for this stuff, or whatever works for you, up front. Make it clear that you expect to have to make adjustments until you find what works. Make sure the doc understands that this has to be a team effort, with all communication lines open.  If he doesn't appreciate your honesty, if he feels threatened because you know exactly what to ask for, try pointing out that you've been living in this body with this condition for a long time. Show him in your records what's been tried.  Show him in the PDR what it says about morphine and chronic pain: that this is what it's FOR, and that addiction isn't considered a problem.

7). Be up front about what's already been done and failed. Be clear that you don't care to repeat these failures. You can't afford it in money or in continued or even increased suffering.  If a doctor insists on trying something that you know doesn't work, REFUSE IT.

If a doctor can't handle your being so informed, if he won't listen to you or believe you, if he refuses to update his own knowledge, if he tells you that this drug can't possibly fail to work, if he discounts your statements of your own feelings, if he does anything of the sort, LEAVE!   This doctor is useless to you.

8). If a doctor wants to try a chancy procedure, make sure you get ALL of the info on possible results, side-effects, etc IN WRITING. You are NOT obligated to accept a treatment that may leave you worse off than you already are. especially as there are treatments for pain that are well-researched, have few side-effects, and are MUCH cheaper than expensive, painful and possibly irreversible procedures and operations.  Often, doctors will want to do something that has already failed or made things worse because it's all he knows to do, he's afraid of prescribing narcotics, and it makes him feel like he's doing something. You are NOT there to make HIM feel better; it's supposed to be the other way around.

Keep in mind though that it IS reasonable for him to want test results.  He has to have as much hardcopy documentation as he can get to protect himself AND you.

9). If you start getting lectures about addiction, dependence, tolerance buildup and so on, your new doctor IS NOT UP ON CURRENT PAIN MANAGEMENT PROTOCOLS, GUIDELINES AND LAWS. In other words,  he doesn't know what he's talking about. Offer him this information (I'll be including some articles at the end of this with references and bibliographies that he can check for himself) calmly. If he refuses it, he doesn't care about you or your suffering and/or his ego is such that he feels threatened. Either way, you'll need to go elsewhere, as this guy will never do you any good. If he contacts other doctors without your permission to inform them that he feels you're an addict or drug-seeker, or places in your chart (a permanent part of your medical record) such an evaluation, contact and complain to a medical board immediately. This is, unless he can PROVE it, libel, slander and interference in your diagnosis and treatment, as well as being a violation of privacy laws and doctor-patient confidence.  You don't have to tolerate this.

In the Hendler article, I believe, Dr. Hendler points out that something like LESS THAN 1 % OF CPP's HAVE A PROBLEM WITH ADDICTION, AND EVEN THIS IS EASILY HANDLED.  Again, CPP's process narcotics completely differently from "recreational" users. Aside from which, even addicts deserve pain relief.

10). If he offers you an inadequate prescription, if you can, refuse it. If you desperately need the relief, tell him that this is inadequate, and that you intend to use what functionality it provides you to find another, better informed doctor. Don't give him the ammunition to say you are doctor/drug shopping behind his back.

The old bit about waiting until you're ready to scream before you take a pain pill is 'way out of date; it will actually make you hurt worse, as well as destroy your rest cycle (what there is of it) and your emotional equilibrium. This, and the old "Learn to live with it" phrase we've all heard so often is callous, uninformed, cruel BS. You CAN'T live with it.  Your brain is hardwired (see the Hendler article) such that the pain goes through your emotional centers (hence the depression), changes your brain chemistry, signals are re-routed, ANYTHING so that the pain message gets through and takes up almost ALL of your mind and resources until it's dealt with. It is a top priority survival mechanism, and your body is designed to make it impossible to ignore.

11). If this doctor belittles you, mocks you, makes you feel "dirty", worthless, tries to tell you you're an addict, you have a drug problem, THIS IS HIS IGNORANCE. He's blaming your pain and all the symptoms it causes on you, and IT'S NOT YOUR FAULT!!! DON'T BUY INTO IT, AND DON'T ACCEPT THIS KIND OF ABUSE! What he's doing is no different than berating a diabetic for wanting insulin every day. A diabetic is a diabetic all the time, and you are in pain all the time; both need to be treated ALL THE TIME. Leave this doctor; he'll never help you.

12). If this doctor points out apparent emotional instability on your part, point out what chronic pain does. It ALWAYS causes a Post Traumatic Stress Disorder-like problem. It EXACTLY parallels "brainwashing" techniques: irregular, interrupted, inadequate rest, CONSTANT "irritation" (this is the official term; it can include the most painful physical and mental torture), constant attacks on self-esteem (lack of understanding by and isolation from family and friends; inability to earn a living, pay bills, meet social, marital, parental and other obligations; denial of what you KNOW you feel by these same family and friends, co-workers, medical professionals, social agencies and workers, etc ad nauseam); inadequate diet due to nausea caused by pain and/or poor finances - this list could go on forever. One of the worst things about it is that someone being brainwashed can break and "convert" to the enemy's belief system or give up the information he's being tortured for and END the torture; we can't.


Anyway, it took me some counselling and almost two years to get my head straightened out, my self-esteem back (I'm still working on that), to MOSTLY get over having panic attacks when my meds were late - It takes TIME to recover from years of pain and abuse. Personally, I'm STILL scared that something might happen to this treasure of a doctor, that I'll lose my meds and be right back where I was. This is a normal, reasonable reaction. Make sure a new doc knows this, knows what to expect and will hang in there with you. You don't need to get almost there, and then have him panic and drop you, leaving you worse off than before. This is the kind of treatment that leads to suicide. In fact, if you can, get you doctor's help in finding a backup physician (DON'T do it behind his back, which to most docs means not telling them) just in case he moves, retires, gets run over by a beer truck or something.

Once more, and perhaps most important: don't let anyone convince you that you're less of a person, of less value or worse just because you need a medication that's been demonized by fools, self-serving or otherwise. Your pain and your reactions to it, their ignorance and your need for medication to live ISN'T YOUR FAULT!!! If it's a fault at all.  You've done nothing wrong!!

I'm going to send two more posts with articles your physician (and you!) should. I'll be sending this to both groups, so if you're in both, sorry 'bout the duplication.

Beloved Friends and Family in Pain, May the Creator Always Walk By Your Side!
(But have a good lawyer and carry a big stick anyhow - remember Rule #!)

(c) March 15, 1999