I've been taking just Tylenol #3 for 13 years. I take it in halves to avoid side effects that I find unpleasant, but apparently some people enjoy them. I have a nurse practitioner who says they will stop prescribing them to me and send me to pain management. Since relatively speaking I don't take all that much, and I recently started some new meds for my autoimmune disease, I think I'm going to see what happens if I just quit. In New York they passed a law that says for an acute condition they can only prescribe 7 days of opiates. It also says they can be prescribed for chronic conditions. They are bringing out the kitchen sink with all these studies that saying every bad thing they can about opiates, as if other drugs don't have bad side effects. I have take the top dose of Meloxicam and for an slightly elevated A1C, metformin, and I just read today they can cause heart failure, which I seem to be in the very early stages of. NSAIDs wreck your stomach. I've had an antibody that causes autoimmune hepatitis which I don't have yet, but if I start upping my dose of Tylenol what is that going to do to my liver? I really think this is going to just have terrible repercussions to society to just leave people in severe pain, but the only thing that they are seeing is the addiction side of opiates, and forgetting how it makes life a lot more endurable for people in chronic pain. They seem to want to push invasive procedures like spinal injections. I spent a lot of years in pain, and I think I'll be able to survive, although not so sure I will be able to endure grocery shopping. You're not alone with these changes. I hope they will be able to give you sufficient pain relief so that you will be able to have a decent quality of life.

The CDC Gudelines mention 90 mg Morphine/90 mg Morphine Equivalent Daily Dose. The FDA Gudelines mentioned 120 mgs, but that was several yrs ago.

Drs can't continue to increase doses with them going higher and higher. The number of deaths among chronic pain patients has been linked to very high doses of opiates among other things like the presence of other prescription drugs like Valium, Soma, ect.

I never, ever asked for an increase. I was titrated 19 years ago and get along on that. And we are talking about Pain Management Doctors! They KNOW what to do. If there was a cure for RSD, I'd be 1st in line. But I'd love to see these people at the CDC, a government agency who are getting pressure bc celebs are dying from taking illegally obtained meds or pressured docs to prescribe for them. I see my PM doc EVERY 30 days. I take my meds exactly as prescribed. I have a 7 year old son and I can NOT be trying new drugs that will make me sick or woozy. We tried everything but the kitchen sink 19 years ago, with re-evaluations every few years. Nothing works but the morphine. I had to go to a pain psychiatrist to get into this doc, jump through hoops a lot of people didn't get through. I work, and I raise my little boy. So, the CDC thinks that I'll just start overdosing after 19 YEARS? I GET the point that addicts are looking for highs. But at my doctor they weed them out before they can even see the doc. I have RSD in my leg and foot, and NOW as age hits, arthritis in my knees and my spine. I read in the CDC's recommendations that Palliative Care is not included in this. The definition of that is "A general term that includes treatment given to relieve pain and control symptoms when there is no reasonable expectation of a cure." Isn't that what RSD is? There IS no cure. I've had it 19 years. It gets worse as I age. So if this is allowed, WHY do my meds need to be changed? I should not have to worry about how I will live day to day, or end up like I was 19 years ago, in so much pain that I wanted to die, or on so much medicine that I couldn't move. There HAS to be a happy medium. Not every person is the same, although the CDC seems to think we are all liars. I'm infuriated that people will be losing quality of life because of a few bad apples. NO ONE can ever tell I take ANY meds. No one would ever guess. I just want the pain managed, I don't want to take stronger meds and end up back in bed all day. I have a child to raise. I can't believe that these people are judging every pain patient in one fell swoop.

The same Rules will apply to everyone, they're Federal Rules which tend to override State Rules. There is still some "arguing" between whether the CDC or FDA will have the final say so on the limits. And they're not saying that everyone has to take Morphine, they use a Morphine equivalent, i.e. patients are allowed to take the same equivalent of Oxycodone that would equal 100mg or Morphine.

Based on what you said they cut you to, you were on 360mg of Long Acting Morphine, plus a Break Thru Narcotic....that's a very large amount of Narcotics to be taking each day. It's not that they're worried that people will "all of a sudden start overdosing and abusing their meds", the problem is people are accidentally overdosing on these large amounts of Narcotics. We're talking alot of people, from 1999 - 2014, over 165,000 people died from overdoses on prescribed narcotic medications. That's a problem.

And you can think that your Dr.'s office "catches" all the addicts before they get to the Dr. but believe me some get through, they're that good.

I have the same perfect patient status with my doc, just like you see her every 30 days, never take a pill out of place, i'm a major rule follower, and I have roughly 7 different diseases that cause me daily pain. But Agencies can't pick and choose who gets to use more narcotics and who doesn't. They did that once, it was called Cancer Care and Terminal Care. Now we have Chronic Pain Care, and they've let it get out of control and are having to scale it back to save lives. People are going to have to figure it out because with the amount of deaths and pill mills and Dr.'s who followed no Regulations, this is going to happen. Perhaps they'll come to their senses and realize that a 100mg equivalent is a bit on the low side....but if you think about it, a normal person taking 100mg of morphine every day would be wasted out of their minds.

Good luck with your new med schedule.

It justsme, Actually the risk of a chronic pain patient dying of an overdose is very low. It's the addicts who are combining pain meds with other med like you listed and alcohol who are dying . The statistics spewed in the media are very inaccurate and misleading.

Jenthalia I had an issue recently regarding my pain meds and the CDC guidelines. I asked my doctor if she could increase the longacting, fentanyl, and reduce the shortacting, percocet, as my pain was all over the place . She got on her computer and started checking on the guidelines and morphine dose equivalents and decided to just change my shortacting to another med. I think doctors are afraid if they don't follow the guidelines the big bad DEA is going to raid their office.

And how the guidelines came about and who weighed in is a bunch of BS. Five committee members were from PROP ( physicians for responsible opioid prescribing). Some articles I have read said it was pretty one sided and pain patients were not represented. I also read that the guidelines were going to be rewritten after they had a more balanced committe together and include those involved in pain management. I hope that's true.

A lot of patients are not only having their doses reduced but some are being cut off completely. People who have had their pain managed for years on steady does are now being told sorry, we're not prescribing meds anymore, take some Tylenol. There sadly is a lot of suffering going on.

I get daily Emails from the National Pain Report. Just checked it today and there is an article and survey to take on this very same issue with problems with getting meds because of CDC guidelines.

Please anyone who has been affected by this head on over to that site and take the survey. I don't know that it will do any good, but it's worth a shot if someone hears our concerns and problems.

I have only seen a few posts from this group since the new format started so not sure how many people will see this post, but we all need to band together!

It is criminal that our government is now getting so involved in our healthcare. There is no excuse for this behavior. In New York, the elected official who passed laws about opiates did so because his son is an addict. So everyone has to suffer because his son turned out to have a disease.

I guess it is better if we all just die from tylenol poisoning or NSAID side effects.

I never once broke my contract. IN decades I never needed an increase. I never failed a UA. I never missed an appointment - even when my mother was dying from cancer (last week of her life!) I use acupuncture, massage, exercise, and nutritional treatments to battle pain. But one day the doc walks in and claims that tylenol #3 is "turned into morphine by the body". That was the end for me.

I know the pain will kill me one day. I have such severe back pain that I can't differentiate it from heart problems. And I've reached the point where I pray each time it is bad that this time will be the end.

Doctors really ignore these guidelines and studies at their own peril. If something goes wrong with one of their patients in this atmosphere they can get sued. I was seeing a neurologist who dealt with many painful conditions, and I felt like he was just living in fear. (Although I suspect some of these studies are being pulled out doctor's trash bins." Good luck to everyone.

I think doctors are using these guidelines as a way justify cutting their patients off of their pain medication. My pain doctor is kind of doing the same. I guess it's a good thing I'm only on 50-60 mgs of morphine equivalent per day. I can't go too much more higher due to breathing issues. I really hope my pain behaves. I'm so sorry they're cutting you down to a sub-therapeutic dose. That is just barbaric. I don't care what anyone else has to say. I will admit though in my case that there are days when no amount of meds help. They just make me feel good enough to not want to kill myself. There is no easy way to lie the chronic pain life. I just limit my amount of activity. I know that is not really an option though for those of you who have work and families to take care of. I am just one man living pretty much on my own. I don't have anyone who depends on me for physical or monetary support. I hope you can get through this with as little discomfort as possible, but if you have already been through this before, that will be easier said than done. There has got to be an exception to the current rules. There is no one size fits all to pain management. Some people naturally have higher tolerances to meds than others. Hell, some people even have higher tolerances to pain than other people. We are all as individual as a snowflake. I hope they re-tweak these regulations. RSD is a very painful condition. There is absolutely no question about that when you read about it online. You are in my thoughts and prayers Jen. Hang in there. Hugs!

J

Thank you. It seems that most of you understand. In 19 years I've only had one change, and that was just between LA and short acting drugs. I'm awake, in pain, because of the change, but now more terrified because I think they're actually going to make us go down to 100mg of morphine a day. I now have arthritis in my knees and spine, spongey kidney disease (I produce a lot of kidney stones; it's genetic) and the RSD. So whereas I could maybe handle a lower dose 10 years ago but not be able to properly function or do much, it's just impossible now. My doc was always great, telling me if the pain got too bad he could change my meds to something stronger. Stronger scares me. My last doc, who passed away, suggested a morphine pump. I have severe needle phobia and could imagine too many scary things happening so I didn't do it. I am not a doctor but I have had RSD for almost 20 years. I know meds. I know that if I feel it or get constipated, it's too much. Maybe 360mg a day of oral morphine sounds like a lot to someone without RSD for that long of a period, but it works for me. I can travel for work, I have a clear head for writing, and most of all I've raised a great son. He's only 7, and I SO don't want to miss out on raising him. But today, after just a day's change, I'm crying, I'm hurting, and I'm terrified. THIS is what is wrong with America. We are NOT all created or afflicted equally. What works for one, may not work for another. And why are they attacking Chronic Pain? If it wasn't "chronic" it wouldn't be such an issue to be treated correctly. I know a few things. One, I'm an intelligent, educated person who happened to be afflicted with RSD and now, additional pain problems. Two, the meds I was taking worked for me. Yes, I'd have bad days, especially in Winter, but I refused any stronger meds or higher doses. Three, this CDC crap is looking to ruin my life and ruin the lives of many others. I don't even see where it is their business. And what the hell do they mean by "guidelines" anyway? As I read it, it was guidelines to treating patients from the start. What about patients who have been treated successfully for almost 2 decades with NO problems? Why do I, why do WE have to pay for some ignorant people looking to get high? AS a former Political Science minor, I always go to, HOW do we help ourselves? Whom do we call? Because these medications are for people who need them. There's no "cookie-cutter" answer to CP. We are each individual. What sounds like a high dose to others might be seem low to another person. The pain of RSD might be worse than a chronic pulled muscle. Or might not. But we are human beings and entitled to proper treatment. I'm down only 70mg today and I am awake at 1:22pm. Is this the end of my normal life? I'm just sick over this. It affects not only me, but my husband and son and family. Some idiot doctor decided that he or she could choose which med and which dose would work for me, without KNOWING me or my story. That is not proper medical treatment. That said, we should keep a list of everyone who is dealing with this problem now. We need to think of a way to fight for our right to live productive lives. This is SO wrong.

I know how you feel Jen. I am kind of in a different boat than most of you guys though, because my pain is circulation related. I can be hopped up on 5000 milligrams of morphine and it will not make my leg work after I have used it for too long. My leg has just a certain amount of spoons for the day; sometimes for the week. I am on meds now and struggling to just stand up and cook some pork chops. I haven't cooked a meal in over two month. My leg has deteriorated that much. I can't fight my leg no matter how hard I try. I really hope they don't cut you back too much more Jen. If you are unable to sleep, that is a real quality of life issue. Do you take any sleep meds? I actually could not sleep the other night even on the pain meds, so I popped an Ambien and it knocked me put. It seems like I do not feel the pain when I am knocked out, but "bam" it's right there waiting for me when the Ambien wears off. It's like a bully that you punch in the face over and over again, and he never learns his lesson. Pain is like a retarded bully. :-(

What I fear more than the pain though are the muscle cramps. I was starting to get those again last week. There isn't any amount of pain meds that can even touch muscle cramps. They come in contractions every 30-60 seconds non-stop all night long when they hit. I pray to God the potassium continues to work for this issue. Hugs.

@msmarie:

Actually it's not that rare for a person taking high doses of narcotics to overdose. When psych drugs like anti-depressants and anti-anxiety meds are added by a different Dr. the danger lever goes up. When you forget to tell your main prescribing Dr. that you've had an increase of another med, the danger level goes up. Mixing alcohol or marijuana with prescribed narcotic and/or benzo's the danger goes up. And all of these scenario's are from people who legally take their meds for Chronic Pain. When someone has taken multiple meds for years, they tend to get a false sense of security, the "I know what I'm doing with my meds," There are so many scenario's where CNS Depression can occur with people on Narcotics. Then you have the "newbies" to CP and all those meds, they can be very dangerous to themselves if they don't read the literature and make sure they take their meds on time and only with other meds that have been allowed by their prescribing Dr.

People like to blame all this on the addicts who are overdosing, but there are actual patients dieing due to lack of informing themselves and mixing meds with the wrong things.

Hi Jman, thanks for the hugs. Sending hugs back! I do have ambien, but it rarely works for me. If I go a few months and then try it, it might. I take diazepam for my muscle spasms. In addition to the bone troubles and the RSD and the kidney stone problems, I have spondololothysis. I feel like there's just more and more pain added to my body. But even that doesn't help the muscle spasms in my legs when I lower my dose. I know there are ways around the guidelines like taking stronger meds, but I never wanted stronger meds. I remember the 1st few months after I was titrated. I felt woozy and weird. But after 19 years, I can only tell if I've skipped a dose by the pain starting in my foot and moving to my leg and knees. It feels like a frozen flame. Contradiction? Yes. But so true. I'm terrified of my appointment next month because this won't work. Maybe if they lower my long-acting to 60mg and allow me to take it 3 times a day like I WAS taking the 100mg? I just don't see how I can live a normal life, as I have for 15 years, battling even more pain. But the MSC doesn't last 12 hours. Not for me. I need it every 8. I know it'll be a long time before we figure it all out. Meanwhile, I want to know how the CDC (not even the DEA) can do this to Americans who are suffering. I've been lucky to have no changes and to be smart enough to never break a rule. Actually, I'm terrified to break a rule. I want to live, not die. So I'd never drink (I never did like the taste of alcohol so that was never a problem) and I would never smoke or take an illegal drug. When I had a RSD flare DURING a kidney stone, I was told I could take an extra half MSIR. I was too scared. After lithotripsy, my CP doc said to take an extra one if I needed it. I needed it but was too scared. I made sure I was informed all about my meds, and know the pharmacist. I'm sorry that people are having problems. When I was a newbie, I knew to do exactly what my doctor and pharmacist said. I knew to return or flush all the MSContin pills that had even a scratch on them. Broken ones? Gone. So while I feel for people making mistakes, I don't think it is a reason to ruin the lives of patients who have proven that they're trustworthy with meds. I'm 47 years old and have spent 19 years fighting pain. I've done so well and following instructions. I don't agree with this CDC BS. What am I supposed to do, quit my job? Am I supposed to stop being a mom? Because that killer pain is not controlled by 100mg of morphine. I know people with RSD who take MUCH higher doses. I've always considered myself lucky. Now, I'm scared to death. I can't live the way I was 19 years ago. People prescribed opioids should know what they can and can't mis their meds with. I had to take a class about it- why isn't THAT part of the solution? No, it's easier for the CDC to doom people to be the walking dead. Where is their compassion? Their ARE exceptions to every rule. We need to fight this. There ARE safe ways to take opioids. I've done so for 19 years. Many others have, as well. We shouldn't be punished for the mistakes of others. Not when doing so ruins lives. Can there be safety protocols? Yes! But I'll never, ever believe that the CDC cares about any CPer. Grouping everyone together is a huge mistake. Huge.

I know what you mean Jen. I read everything. I can't take the old Tricyclic antidepressants with Albuterol, or the Stiolto inhalers I have to use now. Also, the Prozac reduces insulin resistance, so I am having more hypo's on it now and have to adjust my diabetes meds. There are so many contraindications to all of time medications we take. I will not take Ambien on the nights I take Methadone. I also will not take my Norco until three-four hours after I have taken my Methadone. If I was on anxiety meds, you have to wait four hours after your last dose of pain meds to safely take them. You have to really pay attention to what you're doing whenever you're on any type of medication. They can all be dangerous. The blood thinners I have to take and the insulin I take every day must also be respected. They can cause all kinds of deadly problems. I carry candy with me in pubic now as I almost had a dangerous low blood sugar attack yesterday, because your body uses insulin better when you are walking around. It almost feels like I'm about to have a stroke when my blood sugar goes low. I start to slur my words and get really light headed. That can be dangerous in certain settings. I also wanted to ask my doctor for more meds on our last visit and he told me to start taking my Methadone again. I don't know what 10 mgs of methadone equals in morphine equivalent, but I think I need more than that for my current pain levels. My doc knows I still have 100 Methadone tablets saved up from not using them before. He wants me to go through those and they he will start prescribing them again. I really wanted to try Morphine, as I'm still scared to become physically dependent on the Done. The doc is so frustrated with me not wanting to take the Done everyday. I might have to just bite the bullet and get hooked on it. I tell you what, if they ever cut me off my meds and treat me like an addict again, that doctor is going to get a mouth full. I hope you're feeling better today Jen. hugs again!