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As a physician, I find the evolution of this problem fascinating. It wasn't very long ago that we were encouraged to treat the pain score as the "fifth vital sign," and to be certain that pain was addressed and managed aggressively.
Times and viewpoints have changed, for the better from my perspective. While there are certainly legitimate reasons to use narcotics for pain, providers have been far too lax for too long. As with most things, the right approach lies between the extremes.
It still should be for legit patients.
It's outrageous that it is not. People with serious issues won't go to the ER for fear of being treated like a criminal, left alone to beg for help and/or prove they are legit. Patients will be forced to end their suffering on their own. That's just disgusting.
I have one of the worst genetic diseases known to man. It involves the immune system. I currently have Common Variable Immune Deficiency, Lupus, Multiple Sclerosis, Rheumatoid Arthritis, Ankylosing Spondylosis not to mention symptoms no one has been able to figure out yet.
Honestly, the only reason I have not committed suicide is because I was unfortunate enough to pass the disease to my kids, which all of them acquired. I am hopeful that possibly as a test subject for either bone marrow transplant or stem cell or targeted gene therapy such as CRISPR/Cas9. I'll know in a month or two if I qualify for the test.
Anyway, I live in more pain and agony 24/7 than it is possible to relay to people. The closest thing I can say is to break a major bone, now imagine that feeling in every single joint, along every single tendon and ligament connection and it would be about what I feel. I take enormous amounts of opiates. Over 600 mg of Oxycontin a day. Some people including many physicians will say that it is tolerance... which is true, but after my disease became active (due to septic gangrene infecting my lungs, liver, pancreas, intestines, brain, etc.) It took nearly 480 mg a day by the end of the first month to get me to stop screaming in the hospital.
There are all these studies that say Opiates do not work after X-days. False. At least in my case. They definitely are less effective. But I know if I accidentally miss a dose. A few hours after I am supposed to have taken them I will start to feel like I'm being hit with a hammer when I move. It's a very obvious feeling. (and different from withdrawal symptoms) If you read the studies, there is a large percentage of people that it does appear to be the case that long term opiates lose their effectiveness. But it isn't in all cases, and often they don't lose all their effectiveness, but enough that the people will stop taking them (or attempt opiate rotation).
The same thing about using hypnosis or meditation is better than opiates for long term therapy. Clearly there are people that have been able to do this. My own belief is that these people were not in as much pain as they believed. There are only 5 people alive with my disease. All of us use some sort of meditation concurrently with our opiate therapy. It's just something we found was necessary. Some people as their opiates then to produce less relief may indeed be able to use meditation as their only means of pain relief. We cannot.
Here are some policies that many of you may not know. Sometimes these are state laws, sometime hospital policies, sometime pharmacy policies, but I have encountered all of them when trying to refill my prescription which I have been on for over 8 years.
A doctor (even a pain management doctor is only authorized to prescribe XXX amount of morphine equivalent opiates each month. It doesn't matter if he has a patient like me, or 500 patients taking 5 mg percocet. I have had a Dr tell me I was being dropped because the practice could not maintain enough opiate patients at the pain management clinic because I was taking up so much of the opiate prescriptions. They would rather fill 50 patients prescriptions than mine.
Same thing with pharmacies. I have been with Walgreens and CVS. A pharmacy is only authorized XXX amount of opiates a month. It doesn't matter how many patients come to see them. I have been denied the fill of my prescription maybe 25 times. I had to go to specialty mail order pharmacy in which I would have to lower my own dose because of the time for the processing and mail to arrive of the Physical prescription slip (For years Opiates could not be ordered electronically... the paper prescription was required). Thank goodness this is no longer the case.
I have been hospitalized maybe a dozen or so times in the last 9 years due to immune system issues. I have died on the table twice (Once I was clinically dead via heartbeat and still conscious... that was interesting) I have had a hospital think that I made a mistake filling out my entry prescriptions and give me 10% of my dose causing withdrawal symptoms while trying to repair a small bowl obstruction at the same time. Try throwing up when you have an NG tube and haven't eaten or drank anything in 4 days...
I have been released out of the hospital 1 day after coming out of an induced coma in ICU for kidney failure because the attending doctor was scared I would die and he would be held responsible for too many opiates in my system. He actually said "Do you know what will happen to me if you die with your currently prescribed Oxycontin?" I replied " Do you know what will happen to me if I die with my currently prescribed Oxycontin level?" He refused to treat me but would allow me to go home, have home nurse availability and all the machines I was currently hooked up to.... amazing.
So I would ask.. beg... plead for people to vote to get rid of the current DEA and its policies. Addicts need treatment not jail. Making blanket rules on opiates at the patient, doctor, and pharmacy level are cruel and inhumane to those of us that do require them.
I have one of the worst genetic diseases known to man. It involves the immune system. I currently have Common Variable Immune Deficiency, Lupus, Multiple Sclerosis, Rheumatoid Arthritis, Ankylosing Spondylosis not to mention symptoms no one has been able to figure out yet.
Honestly, the only reason I have not committed suicide is because I was unfortunate enough to pass the disease to my kids, which all of them acquired. I am hopeful that possibly as a test subject for either bone marrow transplant or stem cell or targeted gene therapy such as CRISPR/Cas9. I'll know in a month or two if I qualify for the test.
Anyway, I live in more pain and agony 24/7 than it is possible to relay to people. The closest thing I can say is to break a major bone, now imagine that feeling in every single joint, along every single tendon and ligament connection and it would be about what I feel. I take enormous amounts of opiates. Over 600 mg of Oxycontin a day. Some people including many physicians will say that it is tolerance... which is true, but after my disease became active (due to septic gangrene infecting my lungs, liver, pancreas, intestines, brain, etc.) It took nearly 480 mg a day by the end of the first month to get me to stop screaming in the hospital.
There are all these studies that say Opiates do not work after X-days. False. At least in my case. They definitely are less effective. But I know if I accidentally miss a dose. A few hours after I am supposed to have taken them I will start to feel like I'm being hit with a hammer when I move. It's a very obvious feeling. (and different from withdrawal symptoms) If you read the studies, there is a large percentage of people that it does appear to be the case that long term opiates lose their effectiveness. But it isn't in all cases, and often they don't lose all their effectiveness, but enough that the people will stop taking them (or attempt opiate rotation).
The same thing about using hypnosis or meditation is better than opiates for long term therapy. Clearly there are people that have been able to do this. My own belief is that these people were not in as much pain as they believed. There are only 5 people alive with my disease. All of us use some sort of meditation concurrently with our opiate therapy. It's just something we found was necessary. Some people as their opiates then to produce less relief may indeed be able to use meditation as their only means of pain relief. We cannot.
Here are some policies that many of you may not know. Sometimes these are state laws, sometime hospital policies, sometime pharmacy policies, but I have encountered all of them when trying to refill my prescription which I have been on for over 8 years.
A doctor (even a pain management doctor is only authorized to prescribe XXX amount of morphine equivalent opiates each month. It doesn't matter if he has a patient like me, or 500 patients taking 5 mg percocet. I have had a Dr tell me I was being dropped because the practice could not maintain enough opiate patients at the pain management clinic because I was taking up so much of the opiate prescriptions. They would rather fill 50 patients prescriptions than mine.
Same thing with pharmacies. I have been with Walgreens and CVS. A pharmacy is only authorized XXX amount of opiates a month. It doesn't matter how many patients come to see them. I have been denied the fill of my prescription maybe 25 times. I had to go to specialty mail order pharmacy in which I would have to lower my own dose because of the time for the processing and mail to arrive of the Physical prescription slip (For years Opiates could not be ordered electronically... the paper prescription was required). Thank goodness this is no longer the case.
I have been hospitalized maybe a dozen or so times in the last 9 years due to immune system issues. I have died on the table twice (Once I was clinically dead via heartbeat and still conscious... that was interesting) I have had a hospital think that I made a mistake filling out my entry prescriptions and give me 10% of my dose causing withdrawal symptoms while trying to repair a small bowl obstruction at the same time. Try throwing up when you have an NG tube and haven't eaten or drank anything in 4 days...
I have been released out of the hospital 1 day after coming out of an induced coma in ICU for kidney failure because the attending doctor was scared I would die and he would be held responsible for too many opiates in my system. He actually said "Do you know what will happen to me if you die with your currently prescribed Oxycontin?" I replied " Do you know what will happen to me if I die with my currently prescribed Oxycontin level?" He refused to treat me but would allow me to go home, have home nurse availability and all the machines I was currently hooked up to.... amazing.
So I would ask.. beg... plead for people to vote to get rid of the current DEA and its policies. Addicts need treatment not jail. Making blanket rules on opiates at the patient, doctor, and pharmacy level are cruel and inhumane to those of us that do require them.
Thanks for listening.
God Bless you and I will continue this fight , this war on making people suffer. I won't let you & others down. Others will say you shouldn't be allowed to relieve this kind of pain and I don't understand that mentality. I've seen people posting stating things to others that basically say "you just need to buck up, roll with it" ; because they "say" they could. ~ SMDH~
So sorry you and your children suffer. Prayers for you as -well as all the emails I continue to send various people and organizations, letter writing, marching in the no to pain protest.
I have one of the worst genetic diseases known to man. It involves the immune system. I currently have Common Variable Immune Deficiency, Lupus, Multiple Sclerosis, Rheumatoid Arthritis, Ankylosing Spondylosis not to mention symptoms no one has been able to figure out yet.
Honestly, the only reason I have not committed suicide is because I was unfortunate enough to pass the disease to my kids, which all of them acquired. I am hopeful that possibly as a test subject for either bone marrow transplant or stem cell or targeted gene therapy such as CRISPR/Cas9. I'll know in a month or two if I qualify for the test.
Anyway, I live in more pain and agony 24/7 than it is possible to relay to people. The closest thing I can say is to break a major bone, now imagine that feeling in every single joint, along every single tendon and ligament connection and it would be about what I feel. I take enormous amounts of opiates. Over 600 mg of Oxycontin a day. Some people including many physicians will say that it is tolerance... which is true, but after my disease became active (due to septic gangrene infecting my lungs, liver, pancreas, intestines, brain, etc.) It took nearly 480 mg a day by the end of the first month to get me to stop screaming in the hospital.
There are all these studies that say Opiates do not work after X-days. False. At least in my case. They definitely are less effective. But I know if I accidentally miss a dose. A few hours after I am supposed to have taken them I will start to feel like I'm being hit with a hammer when I move. It's a very obvious feeling. (and different from withdrawal symptoms) If you read the studies, there is a large percentage of people that it does appear to be the case that long term opiates lose their effectiveness. But it isn't in all cases, and often they don't lose all their effectiveness, but enough that the people will stop taking them (or attempt opiate rotation).
The same thing about using hypnosis or meditation is better than opiates for long term therapy. Clearly there are people that have been able to do this. My own belief is that these people were not in as much pain as they believed. There are only 5 people alive with my disease. All of us use some sort of meditation concurrently with our opiate therapy. It's just something we found was necessary. Some people as their opiates then to produce less relief may indeed be able to use meditation as their only means of pain relief. We cannot.
Here are some policies that many of you may not know. Sometimes these are state laws, sometime hospital policies, sometime pharmacy policies, but I have encountered all of them when trying to refill my prescription which I have been on for over 8 years.
A doctor (even a pain management doctor is only authorized to prescribe XXX amount of morphine equivalent opiates each month. It doesn't matter if he has a patient like me, or 500 patients taking 5 mg percocet. I have had a Dr tell me I was being dropped because the practice could not maintain enough opiate patients at the pain management clinic because I was taking up so much of the opiate prescriptions. They would rather fill 50 patients prescriptions than mine.
Same thing with pharmacies. I have been with Walgreens and CVS. A pharmacy is only authorized XXX amount of opiates a month. It doesn't matter how many patients come to see them. I have been denied the fill of my prescription maybe 25 times. I had to go to specialty mail order pharmacy in which I would have to lower my own dose because of the time for the processing and mail to arrive of the Physical prescription slip (For years Opiates could not be ordered electronically... the paper prescription was required). Thank goodness this is no longer the case.
I have been hospitalized maybe a dozen or so times in the last 9 years due to immune system issues. I have died on the table twice (Once I was clinically dead via heartbeat and still conscious... that was interesting) I have had a hospital think that I made a mistake filling out my entry prescriptions and give me 10% of my dose causing withdrawal symptoms while trying to repair a small bowl obstruction at the same time. Try throwing up when you have an NG tube and haven't eaten or drank anything in 4 days...
I have been released out of the hospital 1 day after coming out of an induced coma in ICU for kidney failure because the attending doctor was scared I would die and he would be held responsible for too many opiates in my system. He actually said "Do you know what will happen to me if you die with your currently prescribed Oxycontin?" I replied " Do you know what will happen to me if I die with my currently prescribed Oxycontin level?" He refused to treat me but would allow me to go home, have home nurse availability and all the machines I was currently hooked up to.... amazing.
So I would ask.. beg... plead for people to vote to get rid of the current DEA and its policies. Addicts need treatment not jail. Making blanket rules on opiates at the patient, doctor, and pharmacy level are cruel and inhumane to those of us that do require them.
Thanks for listening.
This is a very sad story. As you said, there are only five people alive in this world with your disease, and I thank God for that, because what you are describing is horrific.
It is also definitely the exception to just about every rule known.
As you stated, you are able to get the pain meds you so desperately need, and in absolutely massive doses. I hope that will continue - it probably will, since already what you are taking is so incredibly out of the range of what just about any pharmacy would fill or doctors would prescribe.
I haven't read every law in every state but the links I posted regarding state and federal law should be helpful to anyone in any state. What I did read (for about fifteen of the most restrictive states) allowed a system between doctors and pharmacies and patients, to address such unusually high levels of pain as you are describing.
Since you are clearly under the care of several specialists, and yours is such a unique case, it does sound like you are able to get the 600 mg a day of opiates that your condition requires. I wish that wasn't occasionally so difficult but yours is truly a very unusual case.
Quote:
“A rule without exceptions is an instrument capable of doing mischief to the innocent and bringing grief -- as well as injustice -- to those who should gain exemptions from the rule's functioning.”
― Derrick Bell
“By the deficits we may know the talents, by the exceptions we may know the rules, by studying pathology we may construct a model of health.”
― Laurence Miller
Because it is a very common - and effective - drug combination - often more effective than an opiate alone, which is one reason why it's such a commonly prescribed drug.
Vicodin is one of the most commonly prescribed - and abused - drugs in this country. Percocet is also commonly prescribed. Both of these very common and available drugs contain acetaminophen.
All you have to do is tell the doc you're allergic to tylenol.
There are many good opiates that you can get that DO NOT contain tylenol.
I refuse to have any drug that also contains tylenol because of the known fact that it is extremely damaging to the liver over time.
Instead of tramacet...doc gives me tramadol...same thing minus the tylenol.
Well, the good news is that since you're seen every three months, you should have no problem getting necessary prescriptions filled for 90 days at a time per federal law.
Good luck - I do sincerely hope you enjoy a full life.
Yep and now, if you drive around to other pharmacies, it can be called "drug shopping" and a new pharmacy doesn't have to take it. Especially if the first pharmacy wrote your info on the script.
Most docs now make you sign a contract & allow you to use one and only one pharmacy. If you fill it at a different pharmacy, even because the original pharmacy is "out of stock" you are done and they will drop you.
Insanity.
What many people don't realize is ALL narcotic and/or Schedule 2 drugs are logged into a State and Federal database. Both the Doctor AND the Pharmacist log it in. Every time a Doctor thinks of writing one they look at the database to see when the last one was written and for what, same with the Pharmacist.
If while at the Pharmacist there's an issue with your fill, either you've been labeled an abuser,forger or whatever a WARNING will pop up and in most cases they are supposed to call LEO's but either way they are NOT to fill it until the warning is removed.
I've told this story before, I had an "issue" a couple of months ago with filling my monthly prescription. We'd gotten some Tramadol for our DOG a week prior so when I went in to get my usual filled eyebrows were raised and the fill was halted until the Pharmacist realized it was a vet that submitted the 1st script. He still had to call and confirm it was for my Shepard...
I know acetaminophen is horrible on the liver, and I know they are combined..... but why blame the opiate for the liver damage, but not the acetaminophen?
It is the offending substance in this case.
It is....but most people don't know which drugs they're prescribed contain tylenol.
A lot of prescribed drugs contain it.
Maybe it makes for a cheaper prescription....i don't know, but it's not hard (or wasn't/isn't for me) to get a good drug without the tylenol.
After one of my surgeries I woke up in the recovery room and a nurse said "hello ##### we have some lovely tylenol 3 for you now"...I looked at her and pointed to my wrist where the plastic bracelet they give you said tylenol allergy.
The nurses were taken back...they were confused...what to do????with this weird patient that is allergic to tylenol......I was finally offered tramadol pill, or morphine shots. I chose the tramadol...5 mins later nurse comes back and says oh, sorry no tramadol, and procedes to give me morphine shots every 5 hrs...after a couple of days they switched to hydromorphine.(what I'd asked for to begin with)..a wonderful pain killer taken orally.
I knew the hospital wouldn't give me tramadol (guess nurses didn't) because of the cost which is 2 and a half times more costly than hydromorphone.
Unbelievably on leaving the hospital I was given a prescription for tramacet....(it contains tylenol)...never got it filled of course, but just proves that you must be very diligent in advocating your own healthcare....even on record and on your wrist some warnings are not heeded.
Prescriptions that contain tylenol are NOT necessary and don't provide for better relief...at all.
Last edited by purehuman; 09-19-2018 at 08:06 AM..
I have one of the worst genetic diseases known to man. It involves the immune system. I currently have Common Variable Immune Deficiency, Lupus, Multiple Sclerosis, Rheumatoid Arthritis, Ankylosing Spondylosis not to mention symptoms no one has been able to figure out yet.
Honestly, the only reason I have not committed suicide is because I was unfortunate enough to pass the disease to my kids, which all of them acquired. I am hopeful that possibly as a test subject for either bone marrow transplant or stem cell or targeted gene therapy such as CRISPR/Cas9. I'll know in a month or two if I qualify for the test.
Anyway, I live in more pain and agony 24/7 than it is possible to relay to people. The closest thing I can say is to break a major bone, now imagine that feeling in every single joint, along every single tendon and ligament connection and it would be about what I feel. I take enormous amounts of opiates. Over 600 mg of Oxycontin a day. Some people including many physicians will say that it is tolerance... which is true, but after my disease became active (due to septic gangrene infecting my lungs, liver, pancreas, intestines, brain, etc.) It took nearly 480 mg a day by the end of the first month to get me to stop screaming in the hospital.
There are all these studies that say Opiates do not work after X-days. False. At least in my case. They definitely are less effective. But I know if I accidentally miss a dose. A few hours after I am supposed to have taken them I will start to feel like I'm being hit with a hammer when I move. It's a very obvious feeling. (and different from withdrawal symptoms) If you read the studies, there is a large percentage of people that it does appear to be the case that long term opiates lose their effectiveness. But it isn't in all cases, and often they don't lose all their effectiveness, but enough that the people will stop taking them (or attempt opiate rotation).
The same thing about using hypnosis or meditation is better than opiates for long term therapy. Clearly there are people that have been able to do this. My own belief is that these people were not in as much pain as they believed. There are only 5 people alive with my disease. All of us use some sort of meditation concurrently with our opiate therapy. It's just something we found was necessary. Some people as their opiates then to produce less relief may indeed be able to use meditation as their only means of pain relief. We cannot.
Here are some policies that many of you may not know. Sometimes these are state laws, sometime hospital policies, sometime pharmacy policies, but I have encountered all of them when trying to refill my prescription which I have been on for over 8 years.
A doctor (even a pain management doctor is only authorized to prescribe XXX amount of morphine equivalent opiates each month. It doesn't matter if he has a patient like me, or 500 patients taking 5 mg percocet. I have had a Dr tell me I was being dropped because the practice could not maintain enough opiate patients at the pain management clinic because I was taking up so much of the opiate prescriptions. They would rather fill 50 patients prescriptions than mine.
Same thing with pharmacies. I have been with Walgreens and CVS. A pharmacy is only authorized XXX amount of opiates a month. It doesn't matter how many patients come to see them. I have been denied the fill of my prescription maybe 25 times. I had to go to specialty mail order pharmacy in which I would have to lower my own dose because of the time for the processing and mail to arrive of the Physical prescription slip (For years Opiates could not be ordered electronically... the paper prescription was required). Thank goodness this is no longer the case.
I have been hospitalized maybe a dozen or so times in the last 9 years due to immune system issues. I have died on the table twice (Once I was clinically dead via heartbeat and still conscious... that was interesting) I have had a hospital think that I made a mistake filling out my entry prescriptions and give me 10% of my dose causing withdrawal symptoms while trying to repair a small bowl obstruction at the same time. Try throwing up when you have an NG tube and haven't eaten or drank anything in 4 days...
I have been released out of the hospital 1 day after coming out of an induced coma in ICU for kidney failure because the attending doctor was scared I would die and he would be held responsible for too many opiates in my system. He actually said "Do you know what will happen to me if you die with your currently prescribed Oxycontin?" I replied " Do you know what will happen to me if I die with my currently prescribed Oxycontin level?" He refused to treat me but would allow me to go home, have home nurse availability and all the machines I was currently hooked up to.... amazing.
So I would ask.. beg... plead for people to vote to get rid of the current DEA and its policies. Addicts need treatment not jail. Making blanket rules on opiates at the patient, doctor, and pharmacy level are cruel and inhumane to those of us that do require them.
Thanks for listening.
Actually I have and it SUCKED more than anyone without that experience can ever know. <bold> You highlight several of the "new" issues that have come up with the latest crusade. I wonder if you could get special dispensation from the DEA to get what you need?
It is....but most people don't know which drugs they're prescribed contain tylenol.
A lot of prescribed drugs contain it.
Maybe it makes for a cheaper prescription....i don't know, but it's not hard (or wasn't/isn't for me) to get a good drug without the tylenol.
After one of my surgeries I woke up in the recovery room and a nurse said "hello ##### we have some lovely tylenol 3 for you now"...I looked at her and pointed to my wrist where the plastic bracelet they give you said tylenol allergy.
The nurses were taken back...they were confused...what to do????with this weird patient that is allergic to tylenol......I was finally offered tramadol pill, or morphine shots. I chose the tramadol...5 mins later nurse comes back and says oh, sorry no tramadol, and procedes to give me morphine shots every 5 hrs...after a couple of days they switched to hydromorphine...a wonderful pain killer taken orally.
I knew the hospital wouldn't give me tramadol (guess nurses didn't) because of the cost which is 2 and a half times more costly than hydromorphone.
Unbelievably on leaving the hospital I was given a prescription for tramacet....(it contains tylenol)...never got it filled of course, but just proves that you must be very diligent in advocating your own healthcare....even on record and on your wrist some warnings are not heeded.
Prescriptions that contain tylenol are NOT necessary and don't provide for better relief...at all.
You bring up another interesting issue. Most people INCLUDING Doctors have no idea what a pain med regimen costs. I've been to a couple of pain clinics and the first thing they wanted to do is take me off the cheap opiate that worked and put me on a cocktail of more expensive drugs, one being $50 per 24 hour dose AFTER insurance vs the opiate that cost $8 per MONTH.
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