First time seeing a pain management doctor, some advice needed.

Hi and welcome to the Chronic Pain Forum, and sorry that you find a need to be here.

The first thing I would do is sit down and write up some kind of summary of all that you have been through. Try to make it as accurate as possible and go in chronological order. It doesn't have to be an essay. A simple "log" of what you have been diagnosed with, medications given, their effects, etc. Then at the same time you should start a current pain log. Write down your pain levels, date and time, when they change and any relevant info like what you did, ate, medication taken, etc and the effect. This can help you and/or your doctor detect patterns, triggers, etc and allow for better customization to your treatment. (When doing your summary as well as current log be sure to include any vitamins, herbs, and other natural or OTC meds you have tried)

While it is important to be honest, I would avoid talking about taking old pain meds or using medications in any way that was not prescribed by a doctor. I would avoid asking for any pain medication by name but by all means ask any and all questions, talk about your concerns with medications, etc.

As far as your issue with developing a tolerance to pain meds there could be a psychological component to this. I am not saying that there is not a physical issue too or that it is not completely physical only suggesting that you do not totally rule out a psychological complication. What I am talking about is that when you go on a new drug therapy, regardless if it is a new med or a new dose of a med, people tend to get a bit upbeat and hopeful but because of everything they have gone through and are going through skepticism tends to assert or re-assert itself and can sabotage things.

The battle with chronic pain is really an all out war. To "successfully" fight it requires using every weapon in the arsenal. Medication, mind, spirit, and so forth. It is not easy and often times victories have be measured in small wins or even in stalemates.

I'm going to be very blunt here. I hope it doesn't put me at odds with any forum policies -- mods, let me know and feel free to edit/delete my post if need be. I'm a forum administrator for many sites myself, and totally understand that you've got to do what you've got to do....though I hope I can put this in such a delicate way that it doesn't run afoul of any such policies.

So: here's my simple message to you.

DO NOT TELL YOUR DOCTOR ANYTHING THAT YOU DON'T ABSOLUTELY HAVE TO.

"Being honest" with your doctor is highly overrated. Even the best docs, and the best patients who haven't abused a darn thing in their lives and want nothing except to function and be a productive member of society, take care of their families, etc....couldn't give a rats rear about "getting high".....run into trouble with the current political environment, and the pressures that doctors are under these days. Financial and peer pressures chief among them.

Remember, docs sell compassion but for even the best of them, this is their JOB. They have their own families to think about, and their own massive school debts, staggering costs to run even a small medical office, etc.....they'd like to help you, but they have limited time and limited patience for even the slightest perception of you being a "problem patient" in any way, shape or form.

So.....I don't see what either you or the doctor gains from you getting into detail about how many "extra" pills you took on certain days, even with your doctor's say-so. Your doctor may have said that, but he also may feel nervous admitting that to the pain doctors. These words will bring you nothing but trouble....the word "extra" or anything similar is like literally wearing a big red flag on your forehead.

In private, docs know that we do what we have to do to cope with the horrors of our illnesses, and that sometimes entails following the spirit of a prescription or doctor's order rather than necessarily the exact letter. We each find ourselves facing those decisions on a daily basis, and the vast majority of us do our best to do right by all concerned, to take proper care of ourselves and do nothing wrong. But once you are the sort of person who goes around talking about every such detail during doctor's appointments, we become "problem patients."

You can summarize the information that the pain clinic doc(s) will really use down to this: "the current prescription is not even close to enough, particularly on the bad days.

I've been in your shoes, though you're many years behind me on the curve it sounds like. It's easy to be tempted to obsess over every word that you could say to a perfectly compassionate, selfless doctor with a heart of gold in order to get the closest possible thing to the full help you need and deserve. But after a few years of over-sharing with your doctors, giving them information that either confused them, they simply ignored, or was downright counterproductive.....you learn to keep it as dead simple as possible.

They will ask questions if they really want to know things. Give them the absolute SHORTEST possible monologue updating them on your history and current situation, which even for an insanely complicated case can usually be stripped down to a few sentences or paragraphs at most. The barest possible minimum, be brutal in your self-editing. You'll be glad you did.

It's easy to second-guess yourself after a relatively successful appointment, thinking maybe you could have gotten more help, stronger pain meds, mentioned something you left out....but usually, with the tiny amount of time they are really willing to dedicate to your care.....your doctor wouldn't even remember most of that stuff five minutes after you left the office. They're looking for the headlines and the low-hanging fruit of things that they can help with, without giving out a single "abusable" or otherwise politically unattractive medication that they don't have to, or in a dose higher than they absolutely have to.

Focus on the important things in your life that your pain is robbing you of....the ability to get exercise, to keep a decent home, to take care of people you love, to be productive at work (or work at all), to have a tolerable quality of life in general. Talk about how much the pain meds helped after the many years you suffered without them not realizing how much they would help.....it helps show that even in pain, your mind wasn't "focused on drugs."

Most clinics will do everything they can to discourage you from using pain meds at all because in the long run, there are issues with sustainability. If you never get better, or at least not better enough to not need help with the pain.....eventually the opiates will become a problem unto themselves, because your need will exceed the doses any doctor you can find will prescribe. I've been there. Theoretically I could have safely escalated to considerably higher doses, but no doctor I have found was willing to be responsible for that or to take the scrutiny from the pharmacists, the DEA, their peers, office staff, etc.

So, express interest right away in cutting-edge methods for managing opiate tolerance. Express an interest in Low Dose Naltrexone, which actually uses a fine-tuned dose of opiate antagonist ("blocker") to convince your own system to make more of its natural endorphins/endomorphins/enkephalins which not only work as well or better than exogenous opioids for pain....they also can have the benefit of modulating the immune system to reduce symptoms of a vast range of diseases. There is also *Ultra* Low Dose Naltrexone (ULDN), which employs microgram doses of antagonist rather than the 1-5mg of LDN, and can be administered alongside an opiate agonist painkiller medication to help prevent or even reverse tolerance, make the opiate last longer, as well as reduce side effects like constipation.

I myself currently use 100-500mcg (micrograms) of Naltrexone per day, diluting 50mg tablets in large bottles of water under my doctor's direction, to keep my tolerance far lower than it was years ago without the benefit of ULDN. It's not perfect, and I wish that I had started using ULDN from the first day when I went back on opiates rather than waiting 6+ months to start, when my tolerance was already back up to 60mg+ of morphine (or equivalent) per day.

Expressing this interest in ULDN and perhaps down the road, LDN alone, has helped my doctor recognize that I really don't care about the opiates themselves or getting as much of them as I can; I'd be much happier to preserve my "naive" tolerance and to be free of dependency entirely, to be able to start and stop taking opiates at will. Dependency really is a big issue, and it can make your burden quite a bit worse than just with the pain alone.

There are other avenues of managing tolerance that you should look into either way, but you may also want to mention to your new pain doctor as things you're interested in. An emphasis on some kind of long-term plan other than just "more and more of the same" is also very important for helping your doctor feel confident in you as a "good patient."

Even if your new doc isn't interested in any of these things, such as NDMA Antagonists (dextromethorphan, the main ingredient in OTC cough medication, is one of these and can prevent/reverse opiate tolerance; magnesium is also a little-known NDMA Antagonist. Low levels of magnesium have been implicated in people's tolerance to opiates rising faster than in other people with normal Mg levels), do look into them on your own. The time to start using them is now, while your tolerance is still quite close to zero.

Your brain will become more and more prone to rapidly forming a heavy tolerance, the longer you use opiates even if you never abuse them. Your neurons will attempt to compensate by amping up their activity levels, boosting the pain "signal" and also making it harder to sleep, among other things. This can make you prone to being more anxious or just feeling things more intensely in general. The sooner you add other tools to your arsenal that will prevent these changes in your neurons from ever happening, the better of you will be. If you can find docs that will help, so much the better, but you can do many of these things on your own if need be.

Good luck, keep us updated! Feel free to ask further questions, I'll try to answer them as best I can and I know the whole community is behind you on this as well. You deserve better, and hopefully you are on your way to finding it. Just remember not to over-share! Don't say a single thing or add any details that aren't absolutely necessary! Odds are the doctor will have decided what they are and are not willing to prescribe for you before you even walk in the door. Unfortunately it's like religion with them.....they read a bunch of poorly developed pain science in their medical textbooks, and to them it's like the Holy Word. Almost no amount of real world experience will convince them otherwise, and few have much of that to begin with. Alas.

Exit I did edit one small word out due to the age of our readers we have to watch it. Great post.

Post Edited By Moderator (straydog) : 11/4/2010 2:00:31 PM (GMT-6)

Hi Diluted and I too would like to welcome you to Healing Well's chronic pain forum. I am sorry that you have to be here, but very glad that you have found the forum. I can relate to many things you speak of dealing with UC. I have crohns disease and a few years later had the dx of UC tacked on too, so I do understand what you are talking about. I would not wish either disease on my worst enemy either, I don't care how much I may dislike someone, I would not want then to deal with either.

Jim and Exit both gave you the very best opinions on how to handle this upcoming appt so I have nothing further to offer up or add. Only thing, is never ask for a specific medication and forget about adding you took this or that because it was for something left over from another day. That will get you booted quicker than anything. Having a list of what has been taken in the past and how its worked is the quickest and best way for the dr to see where you have been before and helps avoid getting put back on something you have already tried that didn't work. I have always asked the dr what they can do to help me get the pain down enough to function and have some quality life. No matter what any of us is stricken with, we are always entitled to quality life no matter what. Your biggest obstacle is your age and many drs will not rx anything including PM drs because of you being so young. Their theory is if they start you are strong pain medications now you will become tolerant to them and end up with nothing else to give. Unfortunately, pain does not have an age limit, it strikes at any age. Recent studies show we do not become addicted to our meds we build up tolerances. This is the only problem you may run into with this PM dr, so don't be surprised if this happens. If it does, then try another PM dr that is all you can do.

Again, welcome aboard and please let us know how the appt goes.

Done. Thanks!

spinal soldier said...
with the low dose of opiate your using per day this pain clinic may think is so low they may try to talk you into more without you asking.

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Precisely why my (admittedly verbose, when first posted above in detail) advice boils down to "be minimalist" in what you say to your pain managing doctor whether that's at a clinic, one of your specialists, or your primary physician. Particularly if the first time you meet them. A first impression can be very important. That's not to say you want to artificially look better than you are....live the truth of what you're going through, but don't offer up any details or information that aren't absolutely necessary. What's necessary is often much less than we think....and this goes for me most of all. I often find myself giving a lot of detail at doctor's appointments that end up not even being noted or remembered by anyone at the next visit and which may have actually gotten in the way of me making the most of the current one.

spinal soldier said...
i disagree with exitwound respectively; i believe you should be honest/hounorable and speak to them like a real person.

Well, really, I agree....the last thing I'm trying to suggest is that the original poster or anyone else be dishonest or dishonorable in their dealings with their doctors. Honor is a word and an ideal that I take very seriously, that I consider a vital part of living a good and worthwhile life. I just think that when dealing with the average doctor that many of us are forced to accept because we don't have any better alternative at the present time for whatever role they're playing in our health care....it's wise to be minimalist because in my experience, it's all too easy to get in one's own way by expecting too much from the doctor.

If I could go back 10 years when this all started for me, and give myself one piece of advice about dealing with doctors, it would be to set my expectations a bit lower and to focus on the headlines of what the doc needs to know as well as what you need from them because even the "good" docs rarely have the time or desire to pay attention beyond the "headlines" anyway.

In a perfect world "speaking to them like a real person" would be the right approach, but I've learned the hard way that dealing with doctors is a minefield and the smaller your "footprint," the better. Minimalist doesn't have to be dishonest, it's just cautious and efficient. If you asked a really candid and really great doc for their advice (as I have a few times when I've been lucky enough to know one), it often ends up boiling down to the same thing. Few people are as cynical about dealing with doctors as they often are.