12-17-2004, 07:51 PM
Join Date: Dec 2004
| | Questions about Heavy Duty Meds and Doctors
I am new here but I have been reading the boards here for awhile. I have been so impressed by the information here. I am hoping that someone can help me out with some practical advice.
I have been in severe pain for almost a year now and the quality of my life has declined to the point that something has to be done. I have decided over the last few months that it is ok for me to be on heavy narcotics because I need them and I don't deserve to hurt all the time. I am finding that there are some really great doctors out here and sadly some pathetic ones.
A few weeks ago, my GP sent me to a Rheumatologist who diagnosed me with Fibromyalgia and he put on a med called ultracet which didnt do anything at all for the pain. He finally put me on Oxycodone 5mg tablets which helped for about an hour or so. I told my Gp that this helped but only for an hour or so and she put me on Oxycontin 10mg to be taken once every 12 hours which did seem to help more but not nearly long enough.
She sent me to a pain specialist who last Monday has put me on the duragesic patch 25mg and gave me lortab 10/500 for breakthrough pain. The first day I felt so much better but by the third day I was back to unbearable pain.
My Pain doc went on vacation for the holidays and the doctor who is covering for him is not nearly as compassionate. He scheduled me for a steroid injection with sedation not even knowing me or anything about me except I complained that my pain was severe again. I did not let him do the procedure on me as my gut instinct was not to do it. I hurt all over and it did not make sense to me. He may have been ticked at me for declining but I am not sure.
He did tell me to double up on the patches and I have done that tonight but I am still not getting pain relief.
Am I going crazy? I know these are strong meds but they are not helping me and I am scared to tell them this again as they will think this is all in my head.
My question to anyone who would be kind enough to answer is how do you ask doctors to increase or change your pain meds without them thinking that you only want drugs? I am truly hurting but I feel like everyone is so careful about prescribing which is totally understandable. My GP gave me Oxy because I brought in all the bottles of pain meds that I had been given since August and I showed her that I still had several left and that I only take them when I need them. My feelings are if you need it and you are responsible with it, you should be able to take it. I just don't know what to do when the heavy guns don't help at all or not for very long. I know that pain will never be 100% relieved but I know that I could have a quality of life much better than I have now if I could communicate with my doctor effectively. I tend to freeze up and forget what I want to say when I am in front of the doctor. After almost a year of pain, I have learned to speak up for myself a lot more, but I am a long way from what I need to be. Are there certain things I should say or not say? I don't want to be manipulative I just want to communicate to the doctor what I feel I really need. I have left the doctors office so many times mad at myself because I didnt get my true condition explained the way I needed it to be.
Also, I am scheduled for several expensive EMG's and MRIs in the next few weeks and I know that they will show something because there has to be a logical explanation for this level of pain but what if they don't show anything what will happen?
My doctor will be back on the 28th and I will probably spend most of the next few days in bed unable to move. If it werent for laptop computers I wouldnt be able to type this tonight.
Do you find pain doctors are more or less compassionate overall? I have seen so many horror stories I am scared to death. I don't want to hurt all the time. I really want the duragesic to work as the idea of a patch really appeals to me. Is the patch stronger than oxycontin? Does anyone know if by the fact that the first time my pain specialist saw me he took me off of oxy 10 and put me on duragesic with lortab 3-4 times a day for breakthrough pain mean that he is a compassionate doctor that isn't scared to prescribe what is needed to help me? Or did he downgrade my meds without my knowledge and that is why it does not seem to be working as well as the oxy? (The oxy worked better just didnt last very long)
I guess this is a huge hodgepodge of questions but I really would appreciate any feedback you could give me.
Thanks for taking time to read this mini novel. Happy Holidays. Ouchies
12-18-2004, 02:04 AM
Senior Member (female)
Join Date: Sep 2003
Re: Questions about Heavy Duty Meds and Doctors
Both the patch and the pills come in different strengths. It takes time and also trial and error, and a good doctor to get pain control. That's why they call it pain management. It took me three years to get stable.
Yes, it sounds like you are not on enough medication, But let the doctor come to that conclusion after you give him a picture of what is happening. Don't do the doctor's job: your job is to explain how it is for you. In other words, describe your life, don't tell him what to do. Then when he says he will increase your meds, you can look grateful. His job is to prescribe the meds. Your job is to tell him about the pain in as many different ways as possible so he understands.
If I were you, I would spend some time this weekend getting ready for your appointment. Type or write up a description of the hours in a day in your life, and list when and where and how it hurts. Write up a diary for the past week, and put in what you can remember. What you did, did not do, could do, could not do because of the pain. In other words, get prepared to explain your pain, with visual aids. Make a list of what meds you have taken and another list of what things you have done to try to stop the pain. Write a list of questions. Keep it all rather short and succinct. But have something to show him, so that you are able to see that he understands.
Being a good patient takes work. That is hard, but if you are ready for your appointment, you will be better able to evualuate the doctor and the job he is doing for you. And hopefully, you will get better pain control.
Last edited by pain research; 12-18-2004 at 02:05 AM.
12-18-2004, 07:52 AM
Senior Veteran (male)
Join Date: Jun 2003
Re: Questions about Heavy Duty Meds and Doctors
Hi Ouchie, There is alot to coment on, , The patches are marketed for "up to" 72 hours of relief. Not gaurenteed 72 hours relief. A friend participated in the clinical trials for non malignant use of duragesic and at the conclusion of the trial only 6% of the participants reported getting 72 hours relief, the bulk of the rest got between 48 and 60 hours of relief from each patch. But 6% was enough to claim up to 72 hoursof relief.
The pain coming back the third day or even withdrawal starting on the third day isn't uncommon with the patch. A higher dose isn't gong to make them last longer, even if you were on the 100ugh patch it's not going to make them last longer.
Same thing with oral meds. If a 5mg percs lasts 3&1/2 hours then a 10 mg perc is going to last 3&1/2 hours. A higher dose doesn't make it last longer.
Moving from 5mgs of fast acting oxy to OxyC 10mg every 8 hours delivers the same amount of oxy ovewr an 8 hoour perriod. Each MG dose delivers half it's strength over the 8-12 hour perriod. a 10mg oxyC sustains 5 mgs in your system for 8-12 hours, a 20mg oxyC sustains 10 mgs in your system, a 40 mg oxyC sustains 20 mgs in your sytem. The way the release system is designed on LA meds is they don't sustain the mg strength of the pills, that mg strenght is what is contained in each pilll and half is delivered at about 1 hour and the second release of oxyC is at about 6 hours. It's called a dual phasic release.
Jumping from OxyC 10mg not being effective to duragisic without trying to adjust the dose of oxy didn't give oxycontin a very fair trial. It may have been a wonder drug at a higher dose. 10mg is the weakest and easily replaced by short acting 5mg oxy tablets.
As far as the MRI, IF you have fibro or any condition, MRI's don't show pain. They could take 10 MRI of people over 40 and they could all have same degree of degenerative disc disease. Discs dehydrate and flatten over time. The person with what apears to be the worst case of DDD may not complain of any discomfort. What appears to be the mildest case of DDD may complain of the worst pain they have experienced. MRI's don't show or gage pain.
If a doc sees a major nerve compression, they may assume the patient feels pain or has pain that should run down his leg called radiculopothy, But the patient may not complain at all. We all have different thresholds to pain, we will all report different pain scores for the same condition.
An MRI is not a diagnostic tool for Fibro. The basic way to DX Fibro is to press on 11 different tender points and check your reaction. If they get a positive pain reaction, whether the patient is being truthful or just drug seeking is how the DX is made.
There is one common abnormality with fibro but this isn't used as a diagnostic method. The took spinal fulid samples from several hundred fibro patients and what they found was an increased amount of an enzyme called substance P with is a potent neuro inflamatory agent. Created by long ongoing chronic pain and carried by NK-1 which is only created bi chronic pain patients in amounts enough to make substance P a problem. When pain shifts from short term/ acute to chronic many different changes occur, A different part of your brain recieves CP neurotransmitters where with acute pain an entirely different part of your brain activates under pain.
The cascade of natural biochemicals like endorphins, enkephlins, neuro transmitters, calciulm channel blocker NK -1 and substance P are physiological changes between acute pain and chronic pain.
Here are some articles that exlain the difference so you have a better understandng of acute versus chronic.
Danial Brookoff MD University of Tenn, Memphis
Just cut and paste these into your browser
Fibro is a little different and a little more contreversial to treat with opiates. Some folks have horriable flair ups that leave them bedriddden and some folks have perriods of relief that may last weeks or months. So with a pain source or generator that's unstable, as in your not dealing with a fixed level of pain 24/7, it makes finding the right dose of meds even harder.
If you medicated yourself daily to to the point that you wouldn't have complaints during your worst flair, you would be over medicated any time your not in the middle of a horriable flair. The solution if you have pain that never goes away and pain that spikes beyond control is beter suited to using a lower base med and having break through meds available, short acting meds to use only for increases in pain that can't be managed in any other way.
Just because a doc doesn't prescribe opiates to fibro patients doesn't mean he may not have any tool to help you. If it took you a year to move from one doc to another to find one that prescribes meds and didn't try anything else along the way, it was your loss not to take advantage of those docs knowledge of fibro and treating CP. Ultram does work for some people, if it works why go to something like duragesic or Oxycontin. If botox or trigger point injections or accupuncture help, why subject yourself to becomeing physically dependnet on large quantities of opiates. Even when a PM docs main method or phylosophy dosn't help, there may still be something that you can take away and save for another day. Some method that helped but didn't solve or relieve your pain to your satisfaction may be usefull down the road to manage increases in pain. Particular stretches, Bio feedback, guided imagry. I always try to take something positive away even when I leave adoc that wasn't able to help.
There will always be someone willing to write scripts for the price of an office visit but that doesn't make them a good PM doc. Prescribing what someone asks for doesn't make them a good doc. Idealy your going to a pain specialist and if you blow docs out one after the other because they don' t use opiates, How can the present doc justify prescribing these meds if you haven't tried alternative means like an ESI or TP injections or Robaxin infusions or learning self hypnsosis, bio feedback, guided imagary and yoga.
These are all things documanted in my chart so my doc can show anyone that might ask why I'm on the meds I am , every other method and 3 surgerries tried in 9 years before any long acting opiate was ever used.
A far as your case, aside from the opiates, you do need some other tools in your bag of tricks to try when your pain spikes. No doc in his right mind is going to adjust meds to the point where they manage your worst pain from the worst flair up and leave you there 30 days a month, 12 months a year. When you actually have a flair up once your used to that dose, then what do you do, increase again?
If they can bring you average level of pain down, just your daily average, not includng a flair that may be going on, and if he can reduce your pain just 50% he's doing a good job and treating you agressively with the most potent opiates available. There is a price to pay for being on these meds but it's something differen for everyone.
But your doc can't adjust a long acting med during a falir up to make you comfy when you have a condition that ebbs and flows as far as pain leveles. The days you really wouldn't need more than advil, you have to take that dose high enough to manage your worst pain or exeperience withdrawal. So accepting there are limits on how much opiates can do for you, regardless of what your dose is.
You may be able to say I know people that take 5 times the meds I do for fibro, but you don't knowe the entire story and how they got to that point, how many other other methods were tried and failed and how many meds and months or years it took someone to reach any specifc dose. There is no such thing as the apropriate dose for a fibro patient, there is common sense when treating a probelm that doesn't normally remain constant.
In an opposite situation, where the patients pain generator is easily identified and now stable, finding the right dose of meds is easier to find, Once you reach 50% relief, that may be the best they can ever do and if the patient understands this they can go for years on the same dose of meds without a concern about tolerance. Beak through meds, short acting meds can be prescribed to handle a flair up, that might normally drive someone to the ER. Which is the last plave a CP patient wants to be.
Break through meds are short acting meds to help you get through a spike in pain, this way, your base dose isn't cranked up high enough to manage that unusually high level of pain and then leaves you over sedated when your level of pain decreases.
An unstable level of pain is very difficult to treat and exceptng that you do have to live with some pain is part of our lives now. I had a morphne pump impanted for 3 failed back surgerries, broken hardware and failed fusions. The trial of the pump consist of injecting or placing a cath into the IT space of your spine and delivering an opiate. If 50% of your pain can be reduced it's considered succesful.
There are alot of people that have a hard time exceptng they have to live with only 50% reduced when they see doses of meds 10 times higher than your own. But that person taking 10 times your dose may only be getting a 30% reduction in pain, so don't compare what you take to what others will take, otherwise you set yourself up to be disaponted and angry at your doc because he won't increase your meds to the level of someone else you met with the same DX. What works for one will not definitely work for another, and what;'s safe for someone on a high dose that apraoached their dose safely and acommadated to the side effects could be lethal to you.
Last edited by Shoreline; 12-19-2004 at 07:48 AM.
12-18-2004, 07:54 AM
Senior Veteran (male)
Join Date: Jun 2003
Re: Questions about Heavy Duty Meds and Doctors
With all pain meds, that warm fuzzy feeling can occur at the beginning of a new drug trial. Particularly when you went a year withut it being treated at all. You have a short lived honeymoon because what you are taking now is better than nothing. But if your in the middle of a flair up, trying to adjust a dose then isn't wise or safe. Flair ups can be handled with short acting meds and the constant every day pain can be controlled, not eliminated with long acting meds.
IF your only having problems on the third day of the patch, that's important info to relay to your doc. It's not that the patch isn't working, it's just not lasting 72 hours just like the 94% of the folks that were involved in the trial. A higher dose doesn't make it last longer so the answer would be to shorten the interval between changing patches down to every 60 hours or every 48 hours. If the patch manages 50% of your everyday pain other than a flair up, your on the right dose and just need to find a way to manage the flairs and rebuild your strength and endurance.
With the added relief you get from opiates, you don't want to over do things, but you loose muscle tone fast, if you have been sedentary the last year as not to create a flair up. Once you find a way to manage the pain that improves function rather than hindering it with side effects then you need to increase your activity level and stengthen your body. Perhaps get back into PT and take adavantage of the relief your presently getting, But you can't call the doc evrytime you pain increases a couple notches. It doesn't make for happy docs, It doesn't show the doc you have realistic expectations because your pain didn't vanish after the first dose change or increase.
It's all trial and error and is important to get it right from the get go, but that needs to be done at apts. Calling a PM doc and complaining your in more pain should get you an apt, not an OK to increase over the phone or an epidural from a doc that doesn't know you or your history.
Quality of life has become the catch word for chronic pain, but what does quality of life mean? You have to make sure your doc undertsands what you mean. What is the pain preventing you from doing, how have you had to addapt, what are your goals from Pain management. Saying you want to resume playing rugby every weekend isn't a realistic goal. Being able to sit through a dinner or a movie without leaving is a realistic goal. You want to be sure you and the doc are on he same page, he understands this is a quality of life issue for every patient but it's easier to understand about lost ability to function and how the pain effects you on a daily basis and what it prevents you from doing , what increases and what decreases your pain makes it easier for anyone to understand.
I really wouldn't expect much from an MRI unless you think you also have disc problems or spine problems concurent with Fibro.
Fibro can be diagnosed corectly with time or can be the catch all for when they can't explain another source of pain.
Try to hang in there untill your doc gets back and try to realize that chronic pain means living with pain, They could quadrouple my dose and it wouldn't increase my ability to function. When the meds start to hinder function from side effects or drowsiness, the negatives start to outweigh the positive benefits of opiates and the doc should really reconsider the effectiveness of his treatment.
The goal isn't to make you a comfy potatoe. It's to increase you ability to function and provide relief while you try other modailities like more PT, acupuncture, trigger,point injections, or whatever else helps in addition to opiates.
It would be like going to a shrink and saying I want an antidepressant but don't want counsling to help overcome my problems. You can mask a problem for a while but eventually the cause shows it's head again and the meds can only do so much without addressing the cause.
Good luck, Dave
Last edited by Shoreline; 12-19-2004 at 08:01 AM.
12-18-2004, 07:39 PM
Join Date: Dec 2004
Re: Questions about Heavy Duty Meds and Doctors
Shoreline has a lot of very good advice. It's very important to try to communicate exactly what happens when you take XX medicine. I try to describe it in terms of how my day started, what I did, what effect that had, how that went on. For you on a long acting medicine that delivers over several days, you are going to need to walk him through those several days. Basically what you described to me is that the Duragesic didn't last a full 72 hours, just as others have noted. What your doctor needs to know is, when exactly did it quit working for you in that cycle? Perhaps he can shorten the cycle to where you change the patch every 60 hours, or every 55-50-48 hours and get it right for you. You'll still probably need those breakthrough drugs for days when it gets bad. How are those working for you when you get a pain flare? How are they working for you on an average day? How many times are you having to use them? What kind of problems are you having? Those are the things you need to talk about with your doctor for him to really be able to help you.
I'll tell you a story to illustrate my point.
I worked in health care and pretty much knew where I needed to go, I knew what the next step would be and I asked to go there, but my doctor never understood why I was asking to go there, so he did the same thing he did the month before that wasn't working for me. I got very frustrated, angry, and upset. But what I realized was he just didn't understand that I didn't want more oxycodone, but that I was unhappy with how oxycodone was working for me and why I was unhappy about the way it was working for me.
When I explained to him the next month...I wake up every day in severe crisis pain, I take 2 - it takes an hour and a half to do anything and it barely knocks it down at all, I wait in bed for at least an hour because of the pain before I get up to fix something to eat to take my NSAIDS and other meds, 4 hours after the first dose I take 2 more, this is the first bit of relief I get and it isn't fantastic relief, it's better than total agony, but it's not enough to allow me to be very functional, I get 3 hours of out this before even that ends, 4 hours after that I take it again and I actually get about 3 1/2 hours out of this which is the only bit of the day that is really usable to me if I need to get something done, and if I'm willing to cut into tomorrows meds I take 2 more and try to sleep. Otherwise I lay down pretty near immediately and try to lay as still as possible as it pays to lay in bed otherwise the pain gets so excruciating I can't stand it. I don't sleep well, I toss & turn, and if I'm lucky I stay in bed 12-13 hours before I get up and do it again. After hearing that he didn't have a problem with taking the next step and putting me on long acting pain killers, and we adjusted the dose up along this line of communication till we got it to where we were both happy. He was happy because I wasn't in there @^%@$ and moaning every single month at him, I was happy because I got the pain under control and was able to live my life again.
Now when I go to my doc every month we don't have a lot to talk about unless I've got a cold or something and I can ask him how he is. :-)
12-19-2004, 08:19 PM
Join Date: Dec 2004
| | Re: Questions about Heavy Duty Meds and Doctors
Thank you for your replies everyone.
In reference to quality of life issue I have to say that I have gone from a very productive 60 hours per week of work down to about 2 or 3 hours of work per week from my bed. I can no longer drive or do anything social with my husband and kids, and for the last few months things have gone from bad to horrible. I make myself walk around every day and I must take about 4 baths a day to deal with the pain.
The doctor has diagnosed me with fibromyalgia, and Rheumatoid arthritis. I have nerve pain in my hands and feet that is a severe type of burn with numbness and I also have severe pain all over my body. Sometimes my clothing hurts me.
In regards to the duragesic patch when I did double the dosage last Friday night I felt alot better the next day. I agree with Shoreline that it will probably have to be changed more frequently if the doctor decides to keep me on it.
I appreciate your telling me that 50% pain reduction is considered successful by PM' doctors. I guess my expectations were a little too high as to what level of pain relief could be achieved.
I am hoping that the doctor will increase the oxycontin dosage for me but I don't know how to ask without making the doctor feel like I am trying to run the show. I also don't want to come off as someone who doesn't speak up for themselves either. One poster said not to do the doctor's job and I agree. I don't know this doctor very well yet.
Overall, I am dealing with my general doctor, a rheumatologist and now a pain doctor. This is what I was told had to happen. I was suprised at the amount of medicine the PM gave me on the first visit too. He had my records from the rheumatologist and my general doc and had no reason to not believe me. Anyone who sees me can tell I am in pain and a general mess right now. I am pleased that he believed me and treated me with some dignity. I want to have an honest open relationship with my pain doctor so that I can have my life back to close to where it was a year ago. That would be wonderful. I am realistic. I have a painful disease and I am going to do whatever I can to deal with it.
I did not mention that I am on 2400 mg of Neurontin for several years and I also take Zoloft, Ibuprofen 800mg day, Ambien for sleep as well as a muscle relaxant and Xanax which I take only as needed and I doubt I take 2 tablets a month of it. So if it sounded like the narcs where the only meds I was given I am sorry about that. I have tried other meds and other methods of pain management too. I am trying to maintain my privacy here on the boards and didnt want to give away all my personal info
Thank; you for all of the feedback and I certainly welcome anymore that you have. One thing I do know is that this is not an easy situation for anyone of us. Only people in severe pain day after day really know what it is like to feel at a doctor's mercy. I like the idea of a support network for this issue. I hope one day I can be helpful to someone else. God Bless
Have a wonderful Holiday! Ouchies
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