Genuine Mystery:

you'll find if you read any of my other posts on these type subjects, that I tend to irk people on this Board because I"m in favor of many of the new regulations. Many of them are just common sense designed to keep people safe and accountable and I have no problem with that. I've had to take these damn drugs daily for a little over 10 years, plus the other 18 or so that make my body work. When you have no removable organs left and you rely on medications to do the jobs of those missing organs and your in constant, never stopping, scream at the top of your lungs pain 24/7 the medications are a necessity that makes sense.

I look back at that now and see how naive I was. But just because I am a CP'er doesn't mean I agree that every change or proposed change is bad....it's not. These drugs have serious side effects, things that people just kind of ignore because they make the pain better. But our bodies don't forget and when things start going wrong, we seemed shocked.

I could throw a dart and randomly choose what caused my Liver Disease and the tumor on my left kidney, or why they both develop stones routinely....Lithium....or....Narcotics..take your pick. At the time it didn't matter because I had to have both to function and live.

But when I hear from and see people now talk about how they stash a few pills here and there for emergencies, or they take them in some random way that is not the way they were prescribed....or they share with a family member or try someone else meds to see if it works, so they'll know what to ask for.....

Well when those practices seem normal to CP'ers, there's a problem and people are not following their Dr.'s orders, and their doing things that can get them fired from their Dr. and considered an addict vs. a dependence issue.

The new Rules and Regs are designed to:

Make sure the Patients actually need the heavy narcotics that are prescribed.

Make sure the Dr. prescribing them actually knows what Pain Management is. Because it's not just a plain family Dr., it's a Specialty just like Surgery.

Make sure the Dr. is on the up and up.

Make sure the patients are using the medications as they should be and not selling them or taking too many.

See....there's nothing in that list, that should make a CP'er who's following the Rules and doing as their supposed to, to be upset or nervous. And there is a need for Rules and Contracts to keep people in check. The name of the game is "Pain Management". and when you have so many pills in your hands it can be all to easy to try and find Pain Cure.....which doesn't exist, just by taking extra meds.

Do Chronic Pain Patients need to be treated like Drug Addicts, NO. Are most long term Chronic Pain Patients dependent on their Narcotic meds, YES. It doesn't mean they'll OD on them and die, it just means their brain has become used to a chemical that it needs to work each day.

Fighting the Government Agencies on all of the new Regs and Rules is a very broad spectrum problem, and I doubt much will come of it. Condensing the fight into a smaller issue that can be fought easier such as "mandatory help for those who are above the mg. limit titrate down successfully with their Dr.'s help", might be a more attainable goal.

It just makes more sense to me to go after things you have a chance at getting, instead of trying to kill the Giant!

this topic really makes me nervous. I agree with alot of the comments. real chronic pain pts wont go to the street for drugs unless a dr. has labled them as an addict. I've read some research that a pt who's pain is not being controlled maybe perceived as drug seeking behavior. I KNOW that I have been perceived as that and have heard many many stories of good ppl who have gone to the er or new dr and have had those comments been made to them; they just want more drugs and you're not gonna get them here. I've also seen ppl who have clearly been overprescribed medications, One person in particular comes to mind; I went to her dr. because he was so liberal with medications to her because no other dr. would even give me anything, not because I wanted to be overmedicated but to have some sort of pain control. she was still seeing the same dr, with the same exhorbinant medications and I had to beg him for two regular norco a day and that was all the treatment he gave me! It made me feel like I was a druggie!

This whole thing makes me sad, pissed and scared to death. I heard of one story of a dr. treating pt's honorably and the DEA just tried every tactic to nail him to the wall and all of his pt's were now tainted and treated like druggies. after your file is flagged You dont have any hope of pain control.

I've seen ppl take more than they should, and then run out and go cold turkey for the last few days of the month. Honestly, if you can go days without anything, I'm sorry but you dont need any meds then. I can't even think of not taking my meds.

It is really really scarey to think that we who really need these meds would have to do without and/or be scrutinzed like I am an addict really pisses me off.
On the deaths from overdose, It is either that people are under medicated so they take more than prescribed, mix it with other meds that cause a decrease in heartrate, (I've been there almost over dosing because of a certain muscle relaxer and hypertension medicine), or addicts being addicts, or suicide because no one has given a crap enough to find out where the pain is really coming from. I for one, have alot of findings but feel that because there are so many no one wants to take the time with blocks and other injections to find the cause and then treat. Several drs have told me that I have arthritis and I'll have to live wtih it. I told them that they can not do this to patients. You will never see them again, they will have committed suicide because they think there is no help and yet they can't handle the pain, and you will never know.

I really need to be healed some because I think that the world really needs to "hear" what I just said. I was terrified to tell that dr. what I just said but made sure that I said it in a way that did not sound like I had a plan because then they could call the men in white to lock me up in a mental ward. Well, apparently, they did not give a shit because I have now been told to follow up with another physician. Please, if you are in a similar position, go and find a new dr because i honestly think that there is a way to isolate what is causing the pain. I had a pm dr try an injection into the spinous/interspinous ligaments and 90% of the pain I had for 23 years was gone!! unfortunately, it only lasted a day. But, the search continues for my partner in my recover to health. Bless you all.

OCP, are you also prepared to titrate down to the 90 Mg per day Morphine equivalent limit? I know you are also on higher limits than the guidelines suggest. My pain management doctor is now lowering patients meds because of all of this. They want to lower my Norco to 90 a month when I barely make due with 100 as it is. I guess I will be lowered down then. I'm not going to fight with the doctors. They have all of the control. There are a lot of people who are having to file for disability because their pain meds are being cut in half. I don't agree with the 90 Mg limit for all pain patients. That is the problem with making generalized rules. There is no one size fits all for chronic pain patients. Some people need more meds and some people can get by with a very minimal amount of meds. I can get by with minimal meds because I do not work. Yesterday I worked in the house for 2 hours and could barely do it with the amount of meds I am allotted now. If I were to even get a full time office job (which can't happen because I have no college education) I would need more meds. I am going to have to get some sort of fast food job soon and it is going to be near impossible to work 4-6 hours a day with 3 - 4 Norco a day. They already want to cut be back to just 3 Norco a day. I guess I will just be bed bound. They should allow people to file for and win SSDI when their doctor lowers their pain medication. If a person can't function on a lower dose of pain meds, and their doctor will not raise the dose, then that person should be placed on disability. I was not trying to call you out OCP. I'm just saying that you are over the guidelines, but you are functional. Every pain patient has different needs. Hugs everyone!

God, I don't agree with you about being able to go for a few days without meds means that you don't need them. I can go a week without meds before I cry uncle. It gets to the point where I can't even sleep at night without the meds. It is not a fun week. I just do it to prove to myself that I am not an addict/not physically dependent on the medication. Some people are forced to go without their meds because they have trouble getting their scripts filled by the pharmacy. I had that for a few months and was going into withdrawals all of the time because of it. They were always out of meds and not getting them till the next week. They never once offered to fill part of my script or even locate another store that has them in stock. So I saved up a few extra pills just in case. Now it does not happen to me anymore because I snapped on the pharmacist and they leave me alone. I also don't think there is anything wrong with having a few extra pills stashed away for if you ever go on a trip, or if your pharmacy ever runs out of stock. A true drig addict can't keep an extra portion of meds because they consume everything in sight. Hugs!

Genuine, right now people are doing all they can to try and prevent Louisiana Medicaid from cutting certain services to disabled children that allows them to live at home and not be put in a nursing home or institution. Pain mangement isn't in anyone thoughts, except those that are directly affected because they don't have access to it. When someone complains about it, the complaints are ignored.

Jeremy, the CDC Recommended Guidelines states that PCP's aren't to exceed 90 mg Morphine/90 mg Morphine Equivalent Daily Dose. It has nothing to do with how many tablets you are prescribed. If your dr said he has to reduce the number of tablets he prescribes, that has nothing to do with these guidelines. You might want to check to see if Medi-Cal and/or your health plan have changed the number of tablets they will pay for. In Louisiana, Medicaid will only pay for 720 Hydrocodone/Acetaminophen tablets in a rollling 365 days. That is 2 tablets a day for 360 days or the equivalent. Anything over that Louisiana Medicaid won't pay for until the 365 days are up, unless it has to diagnosis code of cancer or sickle cell.

"Fighting the Government Agencies on all of the new Regs and Rules is a very broad spectrum problem, and I doubt much will come of it. Condensing the fight into a smaller issue that can be fought easier such as "mandatory help for those who are above the mg. limit titrate down successfully with their Dr.'s help", might be a more attainable goal."

Amen. I generally support the government's changes, but there will be areas where that isn't done well and needs feedback from people like us.

And, to this:
"A true drig addict can't keep an extra portion of meds because they consume everything in sight"

Not true at all, except maybe for very young people. Many addicts have some discipline. If that weren't true, overdose deaths would be much more common.

I think pushing for public education on what substance abuse is and isn't (dependency, for example) would be more productive than complaining vaguely about increasing restrictions on opioids. If people understood addiction and other misuse better, the stigma on responsible users would lessen.

Lastly, Jeremy, while much about your situation goes over my head, I think you should get a PT eval. Maybe if you can increase your strength and stamina, your pain will go down slightly and then so can your pain med dosage.

Geniune, Jeremy is on Medi-Cal which is California Medicaid. I don't see them paying for a PT evaluation or anything else to help him with his stamina or ability to function.

If drug addicts had discipline, they wouldn't be addicts. They are only concerned with one thing and that is getting high when they want to get high. Thinking ahead is not something that driug addicts do.

I don't see that public education concerning addiction vs dependency or teaching about the use and abuse of drugs will make any difference. They are already public education programs like this and have been for years.

I do agree that complaining about tightening the laws and guidelines will do no good. Frankly,not a lot of chronic pain patients comment on things like this las it is. When the CDC Proposed Guidelines were open for public comment, the chronic pain patients that commented were a small percentage compared to those that were in favor of the guidelines.. Most chronic pain patients don't keep up with proposed changes BEFORE they are made, but they want to start petitions and write politicians after they go into effect. They also don't take the time to learn exactly what the current federal and state laws and guidelines are along with statements of position for their state medical boards and specialists associations. They base what they believe and say on things that they have heard from others and the media. It makes them look uneducated and uninformed.

I think every American health plan pays for PT in some cases. There's no harm in pursuing that. There is harm to most chronic pain patients in being chronically sedentary; increased pain is what happens.

Re drug addiction, again, wrong. People who often get wrongly lumped in with substance abusers need to know what their figurative cousins look like (and also how to spot pain patients who are getting in trouble). Getting high is mostly for recreational substance abusers (e.g., snorting Coke at a party a few times a month). Regardless of whether they first tried it to get high, many long-term addicts are self-medicating for serious mental illness and occasionally for chronic pain. For example, self-medication for OCD.
http://www.dualdiagnosis.org/ocd-addiction/
People with OCD are arguably very disciplined in a way. Some of those people fall off the wagon, so to speak, but in the long run heavy use of most substances can't be maintained, so the ones who stay alive for long while still using tend to be practicing some discipline and make adjustments here and there to not die (unless they want to). Drug addicts often die by middle age, but that's not necessarily from OD and generally comes after many years of substance abuse.
http://www.dailymail.co.uk/health/article-2788399/how-years-drinking-drug-smoking-habits-shaving-life-terrifying-graphic-reveals-one-cigarette-cuts-14-minutes-alcoholic-drink-cost-7-hours.html

I'm just going to get more annoyed if people try to dispute facts. This should be a place of spreading useful knowledge.

Also, I've never seen much on TV distinguishing legit usage from addiction and abuse. Dr. Drew has mentioned it for a few minutes on multiple episodes of his show. At length or on primetime network TV by someone - I don't know of that happening.

The high-seeking addict is listed as a myth on some sites.
https://harborvillageflorida.com/self-help/16-myths-about-addiction/
Addicts just want to get high.

This couldnt be further from the truth. Many people with untreated substance use disorders want to get sober, but lack the resources to do so. After time users dont get high, they need their drug to function normally- because their bodies have become dependent.

Which is somewhat like chronic pain patients physiologically needing their pain meds, and some here have been accused of wanting to get high.

@Jeremy,

Yes I've already had that discussion with my Dr. and we've worked out a new daily dosage and schedule for the long acting morphine and a different dosage/scheduling for the break thru Oxycodone.

I've done Pain Management for more years than some of the people on this Board have been alive....and I have a true understanding of the fact that it's "managment". I've also increased my Pool Physical Therapy time to help keep the joints and bones active and loose. My pain never goes lower than a 5 and I'm used to that, so I can move things around re-arrange a few meds and therapies and still keep the pain management in the same area I need it to be. I'm not worried about it.

That is good OCP because you have an office job. Some people are not educated and have to work in physical jobs like I do. I will have a harder time if they cut my meds down any lower than they already are. But I am still under 90 Mgs per day. I just don't think everyone should be made to follow one single guideline. Everyone has different needs. I exercise by walking up and down the stairs a few times a day and walking and it has done nothing to improve my pain. The more I move around the more I pay for it afterwards. If I had a college degree and some more work options, I would not need as many meds. I already know what a few full days of work is going to do to my pain levels. Its going to make me need more meds, or just have to stop. I really hope your doc doesn't cut your meds down. I hope no one has their meds cut down. I also understand the tolerance thing. That is precisely why I allowed myself to be cut from 160 pills a month to 100 and I make due with that. You can get more temporary relief by taking more pills, but that is just a slippery slope. I also realize like you do OCP that it is pain management, not pain cure. It took me a few years to accept that. I remember that one time I kept popping pills until my pain was a 1 lol. I could do without any meds at all if I just sat on the couch all day and had Ambien to knock me out at night. Ambien is powerful enough to knock me out at night even when my pain is keeping me awake. I hope I never have to live like that though.

Also, as far as saving some extra meds. You know that the recreational users of Norco use at least 30 Mgs at a time to get high. They would not even be ale to get high for long on 100 pills a day. Some users are taking 30 Norco's a day. My god, I would not even want to take more than 5 a day. I have a 5 day stash of meds for an emergency. Even my pain doc knows I have some extra pills. He knows I do not use them all of the time. He knows I am sparring with them and actually hate to use them. I just told his PA that I went for a week without meds again because I wanted to see if I could get by without them. I made it for 7 days because I had some left over Ambien from my sleep study. I can't go without the meds, but I can manage on what I have now. Some days the pain is more, some days it is less. Some days I can wait 4 ours before I need meds, other days I need meds right away. At least I know that I can go for seven days without meds even though the pills are right in front of me. I only pop them when the pain keeps me awake all night. If you're not sleeping because of the pain, you're not going to have any sort of a life. That is where I draw the line. Quality of life. Any how, I didn't mean to single anyone out. I'm glad this thread is staying positive. I know some of us have gotten into some trouble over these kinds of topics in the past, Hugs..

J

Walking generally isn't part of physical therapy unless someone's leg or maybe hip muscles have atrophied. Walking actually makes things worse for me. Some physical therapy modalities hardly involve moving around. E.g., stretching, massage, and isometric exercise. Have you ever tried PT? I won't say it's fun, but if done right, it can help. Most of us have already found that pain meds don't do much good in the long run and shouldn't rely mostly on them.

Thats typical of congress acting after the facts

@Genuine Mystery: Hi! Walking has always been part of my PT since there is very little that I can do with my legs. My left knee is made out of cadaver bone, pins and screws, and the left is bone on bone post 7 surgeries. I have a Degenerative Cartilage Disease that, "eats away" the Cartilage in my Joints. I've always pictured it like the Pac-Man guy munching away on the Cartilage in my Joints. LOL I also have advance Osteoarthritis in all of my joints...soooo...sometimes the only PT I can manage from the waist down is just to walk. I try to do it all in the Pool so I can take advantage of the weightless atmosphere, but some nights I just am too dang lazy or tired to deal with having to shower and wash my hair, etc. for work the next day.