Opioid Pain Meds don't work for me. HELP PLEASE!

September 21, 2003

I am 'yelling' for help with this problem because my surgery is in 10

days and I still do not have resolution to my problem of being non-

responsive to Opioid medication. Opioids relieve pain by interacting

with brain or spinal cord receptors, but repeated exposure can cause

the drug to become ineffective due to tolerance. This is NOT why I

cannot respond to Opioids. It may be my learning disabilities (ADD)

or enzymes that block receptors . We do not know why yet.

I have had little need for pain meds during my life, and can recall

thinking that percocet, or codeine with aspirin, or darvocet and the

like were like taking absolutely nothing at all. Mostly I just use

the typical non-0pioid meds like aspirin, Tylenol, Aleve, and Motrin--

and then progressing to NSADS like Bextra, 20mg daily --with 2

Tylenol extra strength , three times per day. I have also gone to out

patient pain specialists when my `other hip' became really painful

and got things like neurontin (not helpful) and muscle relaxants

which my doctor feels is helpful, and just put me back on it, along

with Tramadol (Ultram.)

I generally used self-hypnosis or acupuncture (for chronic back pain

at one point.) Once when I had severe pain following a double tooth

extraction, the dentist finally replaced a useless codeine drug with

Darvon which he gave me in high doses until it worked. (My new pain

MD says it is too weak for orthopedic pain..) Most of my pain

treatment was through dental treatment. I also have responded well to

the Nitrous Oxide they sometimes provide. I vividly recall saying

that although I could still feel the pain, it did not matter when on

NO2.

The pain problem evidenced itself in 2002 when I had 3 major

surgeries in 4 months, and really thought I wanted to die because the

pain was so terrible after each surgery. The pain lasted for 4-5 days

like that and I really did ask God to take me at one point. I

understood why prisoners of war gave up secrets when tortured. I was

no longer a person---just a blob of agony crying and begging for

help. My dignity did not sustain me.

I was given the usual Morphine self-admin. pump which worked to knock

me out I guess (that is fine with me) but quickly I felt agitated

from it--like running up the halls-- and also at times I hallucinated

(I did not mind that either, but my husband and the doctors were

concerned.)The doctors tried many drugs after that. I always had the

pain team come in, and they never listened to me when I told them how

I already tried Oxy-this and Dylant-that. Then they acted surprised

when they saw that it did not work.

The doctors tried various combinations and I have the hospital

records that show how they gave atavan or valium along with two

different Opioids. These were a little helpful, in that they are CNS

depressant class and do work on me, but are not for pain. They

lowered my anxiety which became very high from fear that I would not

find relief, but they were unable to give me anything that did much

more than take the edge off the pain. I just do not know how I can go

through this again.

I use Yoga and meditation and I work out as best as I can. But I am

looking for something that will help with the really unbearable post-

operative pain, when I have not got the mental control to meditate

etc. My resurfacing doctor, Feldman, is most anxious to help me

and really understands. He has asked several anesthesiasts to call

me, and one set up an appointment with their pain specialist, a Dr.

Florence in Englewood hospital. He was very knowledgeable, and fun,

but a bit glib about his confidence that everything would be fine. I

have heard that before at hospitals as grand as s Hopkins--but

without results. He did allow me to test try a novel drug that is

best known for keeping addicts from craving Heroin! Well, I have

taken it today and must say that I did not crave Heroin at all. I

will stick with it, but so far I am in my usual pain. --and, this is

the usual pain which I can mostly ignore--and you guys already know

what comes next: I cannot ignore it when I try to sleep. It gets

worse each week and at lease this reassures me that surgery is the

only option left, and the right option.

I just do not want to be that whimpering, crying, begging for help

crazy person that I became after the last 3 surgeries. Also, I am

convinced, as a former nurse, that some of the staff do not believe

me, or they think I must have been an addict. (I am 59 now and if I

were an addict I think I would have wasted away. It would show up in

not so subtle ways! I look pretty healthy and even young. Bad

narcotic addiction ravages people. But not everyone takes the time to

figure that out before making judgments.)

Anyway, I am beginning to wonder who on earth will have the time to

read this extremely long post. It has to be long, though, so if there

is someone with help to offer, they also know what I have tried

(most everything ?) already. Yet, I always HOPE that someone will

know, especially from their own experience, what will work.

With much gratitude (and a special prize for anyone who actually read

this whole thing)

September 21, 2003

> I am 'yelling' for help with this problem because my surgery is in

10

> days and I still do not have resolution to my problem of being non-

> responsive to Opioid medication. Opioids relieve pain by

interacting

> with brain or spinal cord receptors, but repeated exposure can

cause

> the drug to become ineffective due to tolerance. This is NOT why I

> cannot respond to Opioids. It may be my learning disabilities (ADD)

> or enzymes that block receptors . We do not know why yet.

> I have had little need for pain meds during my life, and can recall

> thinking that percocet, or codeine with aspirin, or darvocet and

the

> like were like taking absolutely nothing at all. Mostly I just use

> the typical non-0pioid meds like aspirin, Tylenol, Aleve, and

Motrin--

> and then progressing to NSADS like Bextra, 20mg daily --with 2

> Tylenol extra strength , three times per day. I have also gone to

out

> patient pain specialists when my `other hip' became really painful

> and got things like neurontin (not helpful) and muscle relaxants

> which my doctor feels is helpful, and just put me back on it, along

> with Tramadol (Ultram.)

>

> I generally used self-hypnosis or acupuncture (for chronic back

pain

> at one point.) Once when I had severe pain following a double tooth

> extraction, the dentist finally replaced a useless codeine drug

with

> Darvon which he gave me in high doses until it worked. (My new pain

> MD says it is too weak for orthopedic pain..) Most of my pain

> treatment was through dental treatment. I also have responded well

to

> the Nitrous Oxide they sometimes provide. I vividly recall saying

> that although I could still feel the pain, it did not matter when

on

> NO2.

> The pain problem evidenced itself in 2002 when I had 3 major

> surgeries in 4 months, and really thought I wanted to die because

the

> pain was so terrible after each surgery. The pain lasted for 4-5

days

> like that and I really did ask God to take me at one point. I

> understood why prisoners of war gave up secrets when tortured. I

was

> no longer a person---just a blob of agony crying and begging for

> help. My dignity did not sustain me.

> I was given the usual Morphine self-admin. pump which worked to

knock

> me out I guess (that is fine with me) but quickly I felt agitated

> from it--like running up the halls-- and also at times I

hallucinated

> (I did not mind that either, but my husband and the doctors were

> concerned.)The doctors tried many drugs after that. I always had

the

> pain team come in, and they never listened to me when I told them

how

> I already tried Oxy-this and Dylant-that. Then they acted surprised

> when they saw that it did not work.

> The doctors tried various combinations and I have the hospital

> records that show how they gave atavan or valium along with two

> different Opioids. These were a little helpful, in that they are

CNS

> depressant class and do work on me, but are not for pain. They

> lowered my anxiety which became very high from fear that I would

not

> find relief, but they were unable to give me anything that did much

> more than take the edge off the pain. I just do not know how I can

go

> through this again.

> I use Yoga and meditation and I work out as best as I can. But I

am

> looking for something that will help with the really unbearable

post-

> operative pain, when I have not got the mental control to meditate

> etc. My resurfacing doctor, Feldman, is most anxious to help

me

> and really understands. He has asked several anesthesiasts to call

> me, and one set up an appointment with their pain specialist, a Dr.

> Florence in Englewood hospital. He was very knowledgeable, and fun,

> but a bit glib about his confidence that everything would be fine.

I

> have heard that before at hospitals as grand as s Hopkins--but

> without results. He did allow me to test try a novel drug that is

> best known for keeping addicts from craving Heroin! Well, I have

> taken it today and must say that I did not crave Heroin at all. I

> will stick with it, but so far I am in my usual pain. --and, this

is

> the usual pain which I can mostly ignore--and you guys already know

> what comes next: I cannot ignore it when I try to sleep. It gets

> worse each week and at lease this reassures me that surgery is the

> only option left, and the right option.

> I just do not want to be that whimpering, crying, begging for help

> crazy person that I became after the last 3 surgeries. Also, I am

> convinced, as a former nurse, that some of the staff do not believe

> me, or they think I must have been an addict. (I am 59 now and if I

> were an addict I think I would have wasted away. It would show up

in

> not so subtle ways! I look pretty healthy and even young. Bad

> narcotic addiction ravages people. But not everyone takes the time

to

> figure that out before making judgments.)

>

> Anyway, I am beginning to wonder who on earth will have the time to

> read this extremely long post. It has to be long, though, so if

there

> is someone with help to offer, they also know what I have tried

> (most everything ?) already. Yet, I always HOPE that someone will

> know, especially from their own experience, what will work.

>

> With much gratitude (and a special prize for anyone who actually

read

> this whole thing)

>

,

l have a problem similar to yours but not for the same

reasons. The anesthesis told me that l would woke up in accute pain.

They told me that there trying to combine drugs together to releif

me. l pleaded with them to carry me over to my room that my wife was

waiting for me with cold therapy unit to relief me. 30 minutes later,

l was relief. A cold therapy unit is like a lunch box fill of ice and

water, with an internal pump and 2 hoses that circulate the water.

Yuo fill it once a day no more. There is an termometer of the water

and with a nob you control the debit of water. more you open the

debit, more the water gets cold. l requested the presence of the

``ombudsman`` and l ask him to press the doctor to prescribe morphine

to allow me to sleep. Such a little amount of morphine to relief the

patient so he can sleep. l finally received, one full dosage with

seringue at 11.00 pm and l slept a good five hours. l understand your

husband seeing you allucinathing. Doctors have the obligation to

relief pain specially to allow the patient to sleep.

Allow me to share one situation. A friend received a surgery for

cancer. They cut 3 ribs, and they stopped there. That man suffered

martyr. He lived near the hospital l work. l was with him each supper

for over a year. l spoke with about pain relief with appropriate

dosage of morphine. he beg me to stop which l did. About one month

later l was there in the morning, the nurse was there, l ask her why

this man was not relief. l asked to show me one study where pain was

not to be relief at the expense of having possible allucinations and

a few days of life expectation cut back. l had a copy of an article l

handed it to her, and ask her to explain to that man that there is

two major opinions. The patient, him, not his wife, not his doctor,

the patient has the right to choose to be relief by morphine or not.

You will see an ad and look for the message *18876* for New cold

therapy unit for for $70.00. We discussed about cold therapy

and many shared the benefit but most Doctor or pain cliniques heard

about cold therapy, when you ask them how does it work they will not

answer. Some hospital rent units, some other they do not know what it

is. l have to buy a new pad. As l had half of my stitches removed, l

ask the doctor to give me a prescription and that would save me the

sale taxes, she answerded l do not know what you talk about.

l wish you will receive all appropriate care for your condition.

If cold therapy becomes a part of treatment good, you choose not good

too. l hope other hippys may come up with something but you seem to

be an expert already. Listen, but never let wordy people decide for

you. Good luck !

September 22, 2003

,

Yes I did read your message. As a dentist, (I know, you had a bad

experience with dental care in the past) I have some experience with pain

control. Unfortunately my ministrations have always been with local

anesthetics and post operative dental pain, not the major surgery you are

facing. This means that my advice will have to be general and not

specific. I hope you will find it helpful anyway.

There are really two areas that I would like to address. These are fear

and physical idiosyncrasies.

One of the major determining factors of how much pain a patient

experiences is fear. Call it anticipation, lack of confidence,

conditioning, past history, excitability, lack of control, a vivid

imagination, sensitization, dramatization, memory of past failure,

distrust, of any other name, I still call it fear. You are really in a

tough spot here . I would guess you have nearly every fear producing

" issue " I've named and more.

There are two things that I use for my fearful dental patients that seem

to work. First of course is chemical sedation. Just taking the " edge " off

helps as you have described. To that end, I would suggest a thorough

consultation with your pain management team so they are very aware of the

importance of anxiety control. I would hope that they can explain to you

what medicines they intend to use, and more importantly, what their plan

of action will be if your response is refractory.

Different drugs work in different ways for different patients. One drug

may reduce your anxiety but cause you to become confused, even

hallucinatory. Another may just plain work better in your situation. It

may be possible for you to have some trial runs with a couple different

types of sedatives or anxiolytic drugs so the pain team knows more about

how you respond. Of course, there probably won't be a medical procedure

code for " pre operative drug efficacy testing " so I don't know how the

administrative end would work. I guess you're just a square peg trying to

fit in a round hole don't you know!

Advance trials of different drugs fits in to the second area of fear

reduction which is " desensitization " . This is best facilitated by a

psychologist trained in anxiety control working with the clinical staff.

The procedure is really based on familiarization by gradual exposure to

the clinical setting and the environment you will be in during and after

the surgery. The important thing here is for the psychologist to identify

the fear factors that trigger your heightened pain responses and then

address them to remove the impediments that fear places in the way of

pain control.

To revue:

1. Find out which drugs are most effective for you in particular and

develop a plan for their use.

2. Discover what " fear factors " exist that tend to block drug

effectiveness and desensitize those issues with the help of a pain and

anxiety control specialist.

, don't get me wrong. I'm not saying it's all in your head! I'm just

saying there has to be a big fear component after the experiences you've

had in the past and that fear has to be a factor in your pain control

efforts that shouldn't be ignored.

The other area that I do not know so much about, particularly as to what

drugs are used and the dosages involved, is the pharmacology in your

individual body. Generally, the idea in direct pain control is to

increase the dosage until the pain recedes. Opioid overdose can of course

result in loss of consciousness and even cessation of breathing.

Obviously your doctors have to determine what drug or combination of

drugs give you the most relief from pain with the least danger of

overdose.

In dentistry, I've seen some interesting idiosyncrasies in patient

responses to local anesthetics. For example, I had a patient who wouldn't

stay numb. I could give him a normal dose of lidocaine that would usually

last an hour or so and it would wear off in five minutes. I had to use a

long acting anesthetic (Marcaine) which would usually last several hours.

For him, it lasted about as long as lidocaine in a " normal " patient.

Eventually as I got to know the patient better, I found out that he

habitually drank a huge amount of coffee every morning shortly before his

dental appointments. I suggested he cut back on the coffee or at least

waited until after his appointments to drink it and guess what? Now, he

can have the more typical lidocaine injection and does just fine with it!

I don't know the pharmacology behind these interactions, but caffeine,

nicotine, certain herbals, and of course other prescription meds can

effect the sedatives and pain meds you will need to be able to rely on

for relief. In addition, there are some individuals whose bodies really

do metabolize Opioid and other meds quickly. I would think that some pre

op blood studies could determine if you are one of these people.

Finally, the same kind of pre op trials may be useful if you can convince

a doctor to do it. There are different classes and types of drugs

available for pain control. Just because one does not work well for you,

doesn't mean another will not. It would be nice to know ahead of time

what works best for you.

I sense in your messages, great fear. Fear of pain, but also fear of the

unknown. Not that you may not know lots about hospitals, having been a

nurse and all, but more a fear of loss of control and fear that your

physicians won't know what to do for you to control your pain.

You need to KNOW what is physiological and what is psychological in your

makeup that hinders normal pain control methods. Then you need to KNOW

how to overcome the factors you can control and compensate for the ones

you can't. Your pain control team should be able to establish these

facts. Once you've got these factors nailed down you can approach your

surgery with more confidence and with the proper weapons to fight for

survival and recovery.

I hope you find the answers you need and can begin to focus on the relief

you'll have after surgery once you've dealt with these concerns! All the

best!

MLTDMD

C2K, Dr. W. Kennedy, 02Sep03

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

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September 22, 2003

I really appreciated reading your informative response to 's

concern. It has helped me to recognise that I need help to face up to

a similar fear that is gripping me, and that has caused me to delay

my second resurfacing.

Much appreciated.

ine

C2K RHS 04/03

- W

> ,

>

> Yes I did read your message. As a dentist, (I know, you had a bad

> experience with dental care in the past) I have some experience

with pain

> control. Unfortunately my ministrations have always been with local

> anesthetics and post operative dental pain, not the major surgery

you are

> facing. This means that my advice will have to be general and not

> specific. I hope you will find it helpful anyway.

>

> There are really two areas that I would like to address. These are

fear

> and physical idiosyncrasies.

>

> One of the major determining factors of how much pain a patient

> experiences is fear. Call it anticipation, lack of confidence,

> conditioning, past history, excitability, lack of control, a vivid

> imagination, sensitization, dramatization, memory of past failure,

> distrust, of any other name, I still call it fear. You are really

in a

> tough spot here . I would guess you have nearly every fear

producing

> " issue " I've named and more.

>

> There are two things that I use for my fearful dental patients that

seem

> to work. First of course is chemical sedation. Just taking

the " edge " off

> helps as you have described. To that end, I would suggest a thorough

> consultation with your pain management team so they are very aware

of the

> importance of anxiety control. I would hope that they can explain

to you

> what medicines they intend to use, and more importantly, what their

plan

> of action will be if your response is refractory.

>

> Different drugs work in different ways for different patients. One

drug

> may reduce your anxiety but cause you to become confused, even

> hallucinatory. Another may just plain work better in your

situation. It

> may be possible for you to have some trial runs with a couple

different

> types of sedatives or anxiolytic drugs so the pain team knows more

about

> how you respond. Of course, there probably won't be a medical

procedure

> code for " pre operative drug efficacy testing " so I don't know how

the

> administrative end would work. I guess you're just a square peg

trying to

> fit in a round hole don't you know!

>

> Advance trials of different drugs fits in to the second area of fear

> reduction which is " desensitization " . This is best facilitated by a

> psychologist trained in anxiety control working with the clinical

staff.

> The procedure is really based on familiarization by gradual

exposure to

> the clinical setting and the environment you will be in during and

after

> the surgery. The important thing here is for the psychologist to

identify

> the fear factors that trigger your heightened pain responses and

then

> address them to remove the impediments that fear places in the way

of

> pain control.

>

> To revue:

> 1. Find out which drugs are most effective for you in particular and

> develop a plan for their use.

> 2. Discover what " fear factors " exist that tend to block drug

> effectiveness and desensitize those issues with the help of a pain

and

> anxiety control specialist.

>

> , don't get me wrong. I'm not saying it's all in your head!

I'm just

> saying there has to be a big fear component after the experiences

you've

> had in the past and that fear has to be a factor in your pain

control

> efforts that shouldn't be ignored.

>

> The other area that I do not know so much about, particularly as to

what

> drugs are used and the dosages involved, is the pharmacology in your

> individual body. Generally, the idea in direct pain control is to

> increase the dosage until the pain recedes. Opioid overdose can of

course

> result in loss of consciousness and even cessation of breathing.

> Obviously your doctors have to determine what drug or combination of

> drugs give you the most relief from pain with the least danger of

> overdose.

>

> In dentistry, I've seen some interesting idiosyncrasies in patient

> responses to local anesthetics. For example, I had a patient who

wouldn't

> stay numb. I could give him a normal dose of lidocaine that would

usually

> last an hour or so and it would wear off in five minutes. I had to

use a

> long acting anesthetic (Marcaine) which would usually last several

hours.

> For him, it lasted about as long as lidocaine in a " normal "

patient.

>

> Eventually as I got to know the patient better, I found out that he

> habitually drank a huge amount of coffee every morning shortly

before his

> dental appointments. I suggested he cut back on the coffee or at

least

> waited until after his appointments to drink it and guess what?

Now, he

> can have the more typical lidocaine injection and does just fine

with it!

>

> I don't know the pharmacology behind these interactions, but

caffeine,

> nicotine, certain herbals, and of course other prescription meds can

> effect the sedatives and pain meds you will need to be able to rely

on

> for relief. In addition, there are some individuals whose bodies

really

> do metabolize Opioid and other meds quickly. I would think that

some pre

> op blood studies could determine if you are one of these people.

>

> Finally, the same kind of pre op trials may be useful if you can

convince

> a doctor to do it. There are different classes and types of drugs

> available for pain control. Just because one does not work well for

you,

> doesn't mean another will not. It would be nice to know ahead of

time

> what works best for you.

>

> I sense in your messages, great fear. Fear of pain, but also fear

of the

> unknown. Not that you may not know lots about hospitals, having

been a

> nurse and all, but more a fear of loss of control and fear that your

> physicians won't know what to do for you to control your pain.

>

> You need to KNOW what is physiological and what is psychological in

your

> makeup that hinders normal pain control methods. Then you need to

KNOW

> how to overcome the factors you can control and compensate for the

ones

> you can't. Your pain control team should be able to establish these

> facts. Once you've got these factors nailed down you can approach

your

> surgery with more confidence and with the proper weapons to fight

for

> survival and recovery.

>

> I hope you find the answers you need and can begin to focus on the

relief

> you'll have after surgery once you've dealt with these concerns!

All the

> best!

>

> MLTDMD

> C2K, Dr. W. Kennedy, 02Sep03

>

> ________________________________________________________________

> The best thing to hit the internet in years - Juno SpeedBand!

> Surf the web up to FIVE TIMES FASTER!

> Only $14.95/ month - visit www.juno.com to sign up today!

September 23, 2003

I'm glad my message helped. I also think there are lots of good ways to

manage pain that could be explored. The ice machine, massage, and any

number of other number of methods probably have their uses. One little

known or recognized fact about pain has to do with the actual conduction

of pain sensations.

For example, if you bump your crazy bone, what is the first thing you do?

Ok, after the vocal commentary, don't you rub the painful spot? You're

actually doing a natural and very effective method of pain control. By

stimulating secondary nerve fibers you actually block the major pain

transmission fibers to a large extent.

So a spouse or friend rubbing your feet or massaging you calve doesn't

just feel good, it really does block the more serious pain transmissions.

I think that PTs and other therapists could be very helpful when standard

methods come up short.

MLTDMD

C2K, Dr. W. Kennedy, 02Sep03

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

September 23, 2003

This sounds like a really difficult problem, if even the orthopaedic surgeon

is concerned for you. June may be right about this not being as bad as some

operations you have had, but it sounds to me like you have a really high

tolerance for drugs and maybe a low tolerance for pain. I have a friend like

that, she has to take doses of stuff just to get a bit of relief, and that would

kill other people. I know in Belgium, where I went for surgery, they were just

giving us extra strength Tylenol (they call it Paracetemol, same thing) because

when my IV quit, the nurse just switched me over to the oral Paracetemol. They

gave me some to bring back with me too, to use for pain on the flight home. I

also know what you mean about hospital nurses acting like 'it's all in her head'

, she really can't be in any pain after we gave her that shot of Demerol - I've

had that on quite a number of occasions. It's crazy making. Your case sounds

so extreme and unusual that I don't think anyone on this site is qualified to

help, and the anaesthaeiologists need to be really involved. Skip the glib one

and see if you can talk to a different one.

I really am hoping you can find some help.

Sharry

RBHR De Smet 27/08/03