Jman, I didn't know (and I took a CLASS about taking these meds) that classes of meds had bad reactions. I had a back problem before my RSD (it's still there but the RSD just trumped it all) and I was taking percocet with diazepam with no problem. Then when I was injured and developed RSD, none of my 3 doctors had a problem with WHEN I took the muscle-relaxant. So now, 19 years later, I have always taken them together. I only take the diazepam at night as laying still seems to disturb the muscles after a full day) but the morphine is still in my system. Even when I was in the hospital getting lithotripsy surgery on a stone that was stuck in my ureter, they gave me valium with pain killers. I'm very glad that I've never had a problem with my meds. I wish I could feel enough of the side-effect ONLY at bedtime bc I've had insomnia since I was 8 years old and it sure would help me rest my body! But overall, I am SO glad I don't feel any of the side-effects. When I began titration, I was sure I would be missing my life because I WAS out of it. But 19 years and 40 pounds later, I honestly don't feel a thing. When I had a kidney stone after giving birth in 2003, they had me on demerol in an IV. I despise needles and IVS and begged to be allowed to take my pills. It was weird and I still had the IV to flush out my system, but I HATE that feeling when medication goes into the IV and it burns. My biggest fear in life since I was a child has always been needles. I saw a tv show as a kid where a man killed someone by injecting air into a patient's IV. That lead to a severe problem with needles. I can't even watch TV when people do Botox! As for your changes regarding Methadone, all I can say is that I hope it works for your pain. I had friends in an RSD group who told me it is one of the worst RSD drugs but works for other types of pain. I think these doctors need to look at the guidelines and follow when possible, but there ARE people for whom 100mg or equivalent of morphine will NOT work. I am literally the worst person on earth today because the pain has me helpless. I'm SO not used to that! I honestly and naively thought that if I told the truth, followed the rules and took my meds on schedule, I would never need worry. But this CDC thing has me shaking in my slippers. I can't plan my work schedule for fall because I don't see my doc until August to discuss HIS thoughts. I talked to the PM and she was trying to get me not to worry, and explaining that the doctor will find something to help me. He's a good guy, but he just moved his practice and now has to deal with this crap? He could be earning WAY more money working anesthesia at a hospital, but he cares about real CP patients. I wonder if he'll be able to stay in practice after this. But regarding your methadone versus morphine. I don't know much, but isn't that what they use to wean people off opioids? I KNOW it is used for pain too, but I'm wondering if, since it might work, it's a good idea? Because isn't it easier to stop taking or something? I started on hydrocodone and oxycodone and ended up on morphine. I was terrified bc of the name of the medication! I mean, I watched MASH as a kid and I knew it was a strong drug. So I wanted to try anything else. But morphine worked. And after awhile, no side effects. That's my big worry. (Besides the pain, of course!) I don't ever want my son to see me looking or acting crazy. For some odd, inexplicable reason, morphine worked very well for me, and I didn't have to increase my dose. Now, I'm terrified. I'm keeping my meds written down as usual but am adding the pain levels as my 2nd doc had me do. Maybe it'll help my doc know what to do? But only taking one long-acting a day has already disrupted my life. If the meds lasted 12 hours, I'd be fine. But for me, right at the 8 hour mark, I start feeling the pain again. And now it's not just my RSD pain but all the old-age or add-on crap I've developed. I'm very glad I don't have to deal with diabetes on top of all this, and wow, you sure have my sympathy! I can say that I am truly scared, beyond anything I could imagine. My entire way of life might be going. I might end up back in bed for life, crying my life away because some CDC docs decided to see us all as one. I'm infuriated that we have no way to speak up, no one to care. It's just not right. I love my son more than life itself. But what kind of mom will I be? I'm already unable to roughhouse, and now to my knees and spine involved, it's harder to find things to do together. But if I end up like I was before proper treatment, that's it. No kid should see that. He's already seen me taken in an ambulance with a kidney stone (thought I was dying) and in the ER with stones. He knows I have had surgeries, etc. But OMG, he's a little boy. Why would a thinking, feeling doctor do this to a woman with a little boy? I deserve better, as does my son. There HAS to be a way to get our stories out. There HAS to be.

Jer, your Dr. gets frustrated with you because your "fear of dependence on the "done"" is silly when you say in the same sentence that you want to try Morphine. It would be in a LA form and you'd have to take it every day, every 12 hours, no taking it when you feel like it or don't, etc. And you will become dependent on it. Any LA Narcotic that you take 24/7 is going to cause dependence...that's just a fact.

You've heard stories of Methadone withdrawal that scare you. Most folks who have a hard time with Methadone withdrawal, have used it as a 2nd step down drug from a previous Narcotic and yes when you use the meds in that way the detoxes tend to be rough, multiple detoxes in a short time is tough......but then again detoxing from Tramadol is worse than Meth, Heroin or any Narcotic.

Its a crap shoot. You're on a pretty low dose of Methadone, and you'll be started on a pretty low dose of Morphine. Eventually you have to decide if you want to make life better or if your fine just sitting on the couch being in pain. Its not a miracle drug, it won't make life all perky and fun, but if the pain is less, that's a big deal.

Jen:

I think I know the answer to this, because we know your intense fear of pain....but, having been on narcotics for so long, have you ever taken a med holiday? Given your brain a time to reset and re-evaluate what your true pain is and what might be rebound pain? Like you I've been doing this since I was 17, so throughout the years with the help and support of my Dr. I take a medication holiday, to get a reading on the real pain and let the brain and pain receptors reset.

Just curious if you've ever done that.

Yes, older CPer, I took 2 self-imposed med holidays. Both times it was hell. It's really not the point. I have additional medical problems now, as if the RSD wasn't enough. I think we all know our own bodies. I'm a 47 year old college graduate but I feel like I have a PHD in Pain & pain management. I am a voracious reader & keep up on treatments. I'm also the mother of a 7 year old. My post is about the pitfalls of the CDC's new guidelines & how it affects us as pain patients. I don't have time to do more med holidays. It's hard enough cutting my meds by 100mg. I'm now experiencing high pain levels again and 8 hours of the day are murder, so no sleep. I can't go for a walk with my family, or swimming with my son. I'm happy if you are getting your pain controlled. I am not. For 19 years I had this under control. Now a drop of a pill a day is excruciating. All this proves is that my CP doctor had it all under control. Now an outside agency is ruining a lot of lives. They don't know me or any other CP patient. Yet they're messing with our treatments. I find that disgusting and an abuse of power.

OCP, I will never be functional again. I can barely stand up today. I can take the entire pill bottle of meds and I will not be able to walk. My foot is swollen and I can barely put pressure on it. I couldn't run away from a rabid dog even if there was one in the room here trying to maul me. My leg does not function no matter how many times I try and force it to work. PTS is a very disabling condition. It is mostly relieved by laying down and resting the leg. That is it. I had to have moms clean the cats litter boxes today because I don't even feel like sitting in a chair and doing it. I am giving in to the leg as I do not want to take more pain meds than prescribed. Maybe I need a higher dose of meds, but then I will run into the same problems Jen is in and get cut down one day. I'll just stay less functional on lower doses of meds and get by like this. I don't know if any of you guys have ever had circulation problems, but they are made worse by using the limb. My veins are scarred up and they cannot expand in order to accommodate the extra load/demand when they are being used. This happens when I stand or walk. Nothing can fix this other than bed rest. I have tried to push and then the leg gives out and I can't walk. Pain meds do not fix circulation issues.

Jen, you would not like being diabetic. I have to use needles and prick my fingers up to 7 times a day to check my blood sugar. I also have to get weekly blood tests for Warfarin. I am a straight up pin cushion. I hate it, but I'd rather have a needle jab me once a day than uncontrolled high blood sugar. I love having my 14 day average blood sugar of 96. That is an A1C of 5.0 I believe. I can most definitely live with that. I might have pain that I can't control, mobility issues that I can't control, but my blood sugar is within my control, and it is the one thing I can manage! Hugs everyone.

J

I agree- I could not deal with that. With my last kidney stone I had to have three IVs started because the nurse messed up. The 2nd nurse was a pro, but I lost it & was SO embarrassed! It's my biggest personal fear. I can't watch it on tv and I hyperventilate or pass out or both, when getting blood tests. The idea of having to endure needles is almost as painful as the pain, itself! God bless you, and many prayers headed your way!

It will take time, but the pain should become less. Losing weight should help, seeing a pain psychologist should also help. We have to adjust out life style to our health conditions. Diabetics have to change the way they eat, chronic pain patients have to give up doing some of the things they want and like to do. Life is not fair.

If you were being prescribed as much Morphine as OldCPer suggested, I'm shocked that you have been able to take as long as you have, plus being prescribed the valium.

Pain patients that are on high doses of pain meds have a difficult time trying to find a new dr to treat their pain when something happends to their current dr, if they can find a dr at all. You never know what the future might hold. It is better to have some pain management than none at all.

It's been 19 years. Same dose. No problems with doctor. I'm not looking for a new doctor. And honestly, because my RSD pain was treated correctly, I've lived my life. That dose might sound high to you but I know people with RSD who are on much stronger meds & higher doses. Let's not turn this into a finger-pointing session. I've had no trouble having surgery, undergoing anesthesia, or controlling my pain until this CDC change.

And the Valium is the best muscle relaxer there is, as confirmed by my original doc, who retired & my 2nd doc, who passed away. My doctor now also agrees. I would never judge a CP patient on their dose or meds. You're shocked that I've been able to take meds as long as I have? Well, I'm delighted that it has worked out. I met a man, got married, lived a great life, and have a beautiful son. Thank God it DID work! At least my son will know he had a mom for 7 years! He'll have memories that don't involve me laying in bed & being terrified to be touched.

If you haven't walked in my shoes, please don't judge me. I've had 19 years of proper Pain Management. I'm upset that the guidelines, set up by people who don't know CP patients, are hurting so many people. 19 years is a long time. I'm not quitting my doctor. And my dose was fine before the CDC got involved. I'm supposed to give up things because they want to change this to a cookie-cutter rule? That's crazy! I can't quit my 7 year old! And I'm not independently wealthy!

What is with this judgement? I'm not climbing Mount Everest! I'd already stopped a regular job to freelance, but I still have to be able to live & travel. This new board is nothing like the old one, where we lifted up each other and supported each other. I'm shocked that this is even a support group. People are hesitant to post now because of the judgment. Again, there is NO set dose of any med that works for everyone. What's high for some is low for others.

I'm really shocked at the level of judgment here.

Jen, nobody is judging you. Your upset and I think your hearing things differently than people mean them. The question I asked you about the med holiday was just a question, because you and I have many of the same conditions in common and we've both been on narcotic pain meds for a long time, 27 yrs for me, since I was 17. I do understand your frustration, fear and anger..I get it. I'm not judging you. The only reason I brought up the med holiday question is because through research, clinical trials and education and experimentation its been proven that our brains start producing "rebound pain", pain that has nothing to with the diseases/illnesses that caused the original pain, the longer your on Narcotics and the Higher your dose goes. At a certain dose your brain doesn't even recognize the extra narcotic.

I know these things because I do have a Ph.D and I have spent a ton of time researching and continuing education. It doesn't mean its the same for every person, but for many, around 72% it works.

I'm not judging you, and I've known "itsjustme" to know that she's not judging you. We're all in the same boat here, we'll all have to follow the same laws. I had to sit down last night and work out my new Narcotic prescription plan to take to my Dr. at the end of the month, to accommodate the cut. Like you I raised 2 boys, my youngest is 17 and I still work, I can only do part time now, but I still have to be able to function in my life.

The Tides of Chronic Pain care are changing and new CP'ers won't be able to get narcotics easily and they won't be able to get them for long term easily, they'll be started out on very low doses, because they can only be titrated up to a 100 mg equivalent. There are going to be some rebound issues to all this, ER's are going to become very, very busy with pain patients needed treatment, Urgent Care Centers will be understaffed to treat the influx of CP Patients; eventually 1 of 2 things are going to happen, 1. Marijuana use is going to go through the roof, causing it's own set of problems; or 2. There will not be enough emergency med or Famly Care Dr.'s to handle of the Pain Patients who don't fit into the knew Chronic Pain care model. Then the CDC and/or FDA will be forced to re-evaluate the plans they've set up. Unfortunately I think that Suicide rates will also go up, although pain itself won't kill you, severe pain can make people very unstable, esp. if they already have a mental issue, and eventually it will get to much to take.

I am sorry that I upset you, I really wasn't judging you, just trying to get information and see if there's something else that might help you in the meantime.

Take care.

I appreciate the post. But what I'm trying to do is get people informed regarding these new guidelines, and hopefully angry enough to take action. Being told my dose was high when I've continually turned down stronger meds & increases over 19 years was insulting. I get you didn't mean it that way. I know people who take 200mg MSC at a time. And one Valium a day for severe muscle spasms has never posed a problem. I think that many of us already have a handle on our care. To hear that my doseage is high confuses me, when like you, I've had CP for many years. Adding all the new injuries/illness to the RSD scares me to death. Cutting one 100mg pull has put me in major pain for 8 hours of my day. I'm not sleeping, not eating, and trying to live a normal life.

I certainly felt judged by the last post, and though you know this person, it pissed me off. We all have different cases, different tolerance, different meds, etc. The main point of my post was to say, look, this is not good. It's not leading to a good place. It's also incredibly ignorant. If we don't stand together, we have no way of stopping these terrible things. Suicides will be on the rise, heroin use is already showing up in CP patients cut by this CDC ruling, and there's more to come.

I was NOT looking for anyone to ooh and ahh at my meds. I was hoping that more people would care and start writing their congressmen or following the link I posted to fight these guidelines. I see now that posting honestly about my meds was a mistake.

I was on the original DS site & missed the companionship. I missed the boosting of spirits and the helping hands. I missed being one of those helpers. I truly hope that is where this new group is headed. No one here should be judging if a dose is too high or low or if Valium is a safe drug. That's for our doctors and pharmacists to decide.

I agree with you on where this is all headed. I admire you for posting. I'm not above saying that I'm in terrible pain, incredibly frightened, and unsure about my future. That said, I don't think the post I responded to is helpful at all.

Thank you for caring. That's about all I need right now. I feel like I've lived a doctorate in CP. I know about rebound pain, about med holidays, etc. right now I'm just hoping that people get angry or upset enough to try and fight these crazy guidelines. I hope we can agree that this cure one/cure all is crazy.

Thanks again, I appreciate it. I'm praying, for all of our sakes, that these guidelines don't ruin too many lives. They're already hurting so many people.

This is a lil bit comical, but I've passed 4 kidney stones now over the last month and a half...and everytime I think of you! lol hope that doesn't come off stalkerish!

Lol- not at all.Its weird bc earlier today I was sure I was getting one. This dull pain in my lower spine feels like the flank pain a bit. And of course, I'm feeling a lot more pain. But so far, so good. I can't imagine going through that again. My last one was before I left for Greece, so last week of April. Scared me to death. I see the nephrologist in August- praying she can give me hope. But 4 in a month? I'm saying a prayer! That's way too much for one person to handle. I hope they gave you toreadol because it works better for stones than any narcotic out there. I just wish it could be taken longer than 5 days. Hope your stones have passed. That's crazy!

They're very good at the University of North Carolina Hospital ER, I've went there for 17 years now. I've never been treated as a drug seeker or looked down upon, they're really great docs/nurses over there. lol I guess also if you've had 30 Surgeries in 16 yrs. they kinda know your not faking it! I'm in that ER at lease once a month, either for a MRSA Flare, Migraine control if they pass 3 days and Kidney Stones. They give me a very nice Tordal/Dilauded cocktail for the Stones and it usually brings the pain down to bearable. I've passed 7 Stones in the last 8 yrs. and then had to have Surgery a few years ago to get a large one out that was stuck in my ureter tube...that one was nasty and tore some things up, 4 stupid days in the hospital, wasn't fun. You do get to where you can feel them....they kinda have a certain type of pain all their own.

Well, all I know is I would not have been able to walk to my pain doctor appointment today without meds. I had to grit my teeth last night while going up the stairs. Every step hurt like heck and I actually didn't think I was going to be able to make it up there. I fear my INR is low again which I will know sometime tomorrow. I am on my Methadone now and the pain is slightly better, but I am still having a hard time walking. Are you guys saying that if I was on an insane amount of pain meds I would be able to run up and down the stairs like an athlete lol? In my case, I really doubt it. My leg is as hard as a rock today and just done. I was going to add that I think the government wants us off of opiates so that they can push Marijuana on us and taxes on us, or so that we would get on the street drugs? What do you guys think. I personally will never go to heroin, but I might go to Mexico for my prescription drugs as I do not like Marijuana. I will use MJ in a pinch, but I do not like it at all. I will either get my meds from Mexico, or I will end it. I really get unstable when my pain levels are not treated. Sometimes to the point of scaring myself. But then again, I would have a hard time raising hell if I can't walk fast lol. I really didn't mean to call you out OCP about not knowing vascular pain. I know you must know something about vascular pain. It is just a crazy animal compared to RA and other pain. It waxes and wanes all damn day long. One minute it is gone, the next barely there, then bam it cranks up for a few hours. It is lower in the morning and absolutely the worst at night. It drives me crazy. Any how, I hope we can all get along and respect one another. We already face a life of judgment from non-cpp's, we most certainly do not need to judge one another. Hugs!