Hi everybody! I hope you are able to enjoy beautiful spring in your areas... here, by me no end to rain and miserable weather...
I had my app today with my PM at HSS in NYC. He is also anesthesiologist (I just found out today) and has years and years of experience in this field. I am very happy with him that is why I am under his care for more than 2 years by now.
He wants to run more tests on me (MRI of the brain and Thorasic levels) and may take me off narco meds. Right now I am on LA every 8 hours of Oxy (20mg), BT Oxy 22 up to 6-8 times a day (he just increased it for me today from 3-4) or 20/650 Percocet as BT. He also increased Lurica for me.
The reason why he thinks to try taking me off narco meds because he has small % of patients who leave in severe pain without noticeable reason. He says that just pain may be caused by many reasons in my situation (I had 2 multi- level lumbar fusions and much more done during last 2 years) but severe pain i go through may be caused by something else.
I am almost fused by now (last surgery was 5 month ago), my hardware is in place so all this pain may be caused by taking opiates/opioids. He says that on some hyper sensetive individuals pain can be as bad as 10 on scale from 1-10. Can you imagine??
That is why he will try and see how will I do without it. If i still experience same pain and non-narco pain medication not helping, he will put me on them right back; for some reason he feels it may be the case. Too much muscle pain; some narco meds may cause severe muscle pain.
I learned today something new and I would like to hear from you what do you think and if anyone experienced something like this...
Your doc is referring to hyperalgesia. The theory is that over time the opioid meds may actually cause one's system to become over-sensitized to pain signals. It's almost as if the opioids turn against you.
I don't know if I believe this theory or not - but many docs are using this as a reason to avoid prescribing narcotics, or to stop prescribing them to patients already on them.
One reason I find it hard to believe is that it seems awfully close to the definition of CP itself. The disease of CP is supposed to be the result of an original injury or condition remaining painful beyond the healing process - something that should have stopped hurting but has not - causing the body to become over-sensitized to pain - and then in need of strong pain killers, like opioids.
So here we have two causes for over-sensitivity to pain. One is from injury or surgery that never stops hurting, and the other is from taking opioids so long that they cause the same condition. In one case you start taking opioids for the over-sensitivity and in the other case you stop taking them (because they are causing the pain)?
Seems like a catch 22 to me. Especially since the full agonist opioids have no theoretical ceiling. One s/b able to continue taking increasing doses of opioids unless side effects become prohibitive - with no real limit. To me, that speaks against hyperalgesia.
What is Narco medication. I have never heard of this. Do you mean Norco, a hydro medication as I am confused if not please fill me in on what Narco is, as I have seen other people mention it before and I always assumed they meant Norco but now I am thinking I have been wrong all this time.
I hope your new Dr can help you and is correct but it's really hard for me to understand this theory, especially when one has had the serious surgeries as you have had.... a fusion is big time surgery... Please keep us posted and let us know how you are doing and how your pain levels are w/o this med. it would wonderful if this Dr can help you as I know you have been suffering and really deserve to find a caring compasionate Dr that can do something for you. I will keep the faith coming for you.
Steve, thank you for your post.
I don't know much about this condition, never heard of it; that is why this new to me and scary as well. I don't know what to expect from be taking off narco meds. I know this is too early to talk about it : i have to go through tests and than who knows what he decides to do.
My dream is to be able to leave without any opiates/opioids, but if I still be in same pain -obviosly taking them is not the cause of my pain; it means I will have to go back on them.
I think he is puzzled (as well as my Neurologist) what causing so much pain for me. You know how they think? If you fused, your hardware is in place - you should be OK. Even though a lots of nerve damage all overy my body and Arachnoidities and RA on a top of all. Therefore he wants to try everything to help me without doing any harm first. He has no problem prescribing any meds for me, adjusting higher doses - all these years I have no complains about this matter.
His theory is to try to help me with less damage as possible; he says instead of increasing my meds higher and higher why not to try to go less dangerous way: to try and see if I am one of the small % of people who may benefit from going off meds all together except Lurica (nerve pain meds).
DR his caliber proved many times to me that his decisions were right; no wonder why Dr Camissa works with him only (as PM) and sends his patients to him only.
I think it's nice to have confidence in your DR and his decisions, but I value everybody's opinion on this board too and see, Steve, you brought something to my attention in your post that I have to give a thought about.
Sleepyslop and Livfreeordie - thank you all for your posts. I posted this thread because I want to learn more from people here since I don't much about it. I use this PM Dr for a little more than 2 years now. Like I said I trust him a lot, but I keep my eyes and heart open to other opinions too. More I think about it, less sence it makes to me. Narco meds are narcotics.
Thank you so much for your opinions, really appreciated!
This gem of an idea is very popular with neurologists when confronted with chronic headache patients... they now have decided that chronic headache is caused by daily use of aspirin, ibuprofen etc.... rather than daily use of aspirin being caused by chronic headache!
Actually the headache theory has been around here in the U.S. for a long time, they're called "rebound" headaches and are thought to be caused by overuse of OTC meds. I suffer from Cluster Migraines, so unfortunately I have alot of experience with headaches.
Moldova, you have arachnoiditis and RA. It was you being diagnosed with arachnoiditis that led to me finding out that I had it too, and I finally had an answer to my ever-growing pain and disability. My arachnoidiitis pain is so severe that it drives my BP to dangerous levels. Currently, I have sufficient pain control through opioid meds, along with a cocktail of other meds, that my BP is at normal or even very good levels for a 52 y.o. guy.
You have two great reasons to be in severe pain, besides the fusion pain. Arachnoiditis does NOT get better-we can only realistically hope to plateau at a level where we are. In many, it gets worse and the pain gets worse. I wouldn't tell you what to do, but I never would voluntarily go off meds. I'd be back under the covers, moaning and miserable. My BP might kill me.
Please think long and hard about this. Most docs don't know much or even anything about arachnoiditis. Please don't do yourself harm.
Moldova, I don't know much about this hyper-algesia, but it doesn't make sense to me. All I can do is gauge from my experience and from time to time I was getting so sick of the hoops we cper's had to jump through that I did what a lot of us has done and said I'm coming off these it's just not worth it. And each time I was reminded after about 5 days why I needed meds in the first place. My pain came back and then some. For me I will stay grateful for my meds.
For you, the only reason I would hesitate was if there was a chance your pain could come back worse. If not, then I guess you could try it since he said he'd put you back on the meds.
The way my ENT surgeon explained it to me one time was this:
When you have pain, your brain sends out signals to your appropriate body part nerves that it's in pain and to let you know you are hurting. When you take a pain med (any pain med, not just Norco), it's silences the signal. This works very well in the short run. Then over time, the brain catches on and says "hey....You are in pain....But you aren't feeling it." Thus, it sends out more signals and then eventually more powerful signals. You then take more meds and more powerful meds. The cycle repeats itself over and over and eventually becomes the chicken and the egg theory.
Docs who believe in this theory think that when one is on pain meds long term, that you become more sensitive to pain overall....Your receptors are overloaded and the brain is firing all sorts of signals about being in pain. Therefore, any pain becomes tough to handle...Not just your original pain. I agree with this theory as I feel all sorts of minor pain that I didn't @ one time....But, everyone is different.
Backing off your meds probably won't help to be honest. The only way to "re-set" this mechanism is to get off all your meds and allow the body to re-heal itself from a receptor and nerve standpoint. However, unless the original source of pain is resolved, life could be miserable (during this phase).
Moldova, I am sorry if I sound pushy or bossy. I care very much about you and I just don't want you to do something you might regret. I noticed in a recent post you made to someone's thread, that you didn't understand why they took pain meds for Fibro. I believe you have been diagnosed with Fibro, from past posts. I didn't say anything at the time, but I was a little shocked that you felt fibro did not warrant pain meds.
I'm not sure if your doctors do not believe that it is painful or why you have this impression, but I know if you were to ask many people who have fibro, they would tell you that it can be extremely painful.
So, I guess I am confused. Did your doctor tell you that your pain could not be caused by the fibro you were diagnosed with? If so, then I can't say I agree with this doctor in any way at all.
I would just hate to see you suffer needlessly, by going off the medication that has helped your pain. I, like some of the others, do not believe in hyperalgesia. I think it is a way for docs who don't like narcotics, to get their patients off of them.
Please consider this carefully and maybe do a little research before agreeing to this. Whatever you decide, I want you to know that I support your right to do so. I just want you to be cautious. Hugs, CMP/MM
I would just hate to see you suffer needlessly, by going off the medication that has helped your pain. I, like some of the others, do not believe in hyperalgesia. I think it is a way for docs who don't like narcotics, to get their patients off of them.
We have to be careful to not confuse the issue or compare apples to oranges. I believe in hyperalgesia....The concept I outlined in my post. However, I do not think stopping pain meds is warranted under most circumstances as a result.
Just because one's body becomes more sensitive in pain in general doesn't mean the meds aren't working. For me, I am more sensitive to all sorts of pain as a result of my long term use of meds. However, I could NEVER get by without taking them. The overall sensitivity is a side effect or related issue of taking the meds.
I will go as far to say that if one stops pain meds and finds they can get by without them, then they probably shouldn't have been on them to start with. Unless of course, you've made some incredible recovery via surgery or some other procedure in the meantime.
Quote:
Please consider this carefully and maybe do a little research before agreeing to this.
I strongly agree. Personally, I think the outcome won't be pleasant, but that's JMO. Maybe I should just keep my mouth shut sometimes.
One of the many reasons I do not accept the theory of hyperalgesia is that science does not truly understand how opioids relieve pain. This is stated in every drug monograph (prescribing information). Still lacking full understanding of how they relieve pain, how in the world do we hypothesize that they also cause pain?
We have learned much about pain, pain signals, opium alkaloids, opioids, receptor theory, etc, but we still do not fully understand how these meds work. What we do know is that they do work. Now we are to belive that these meds that we are certain do relieve pain - that they cause pain. I fail to see the logic here.
We also know that after a time people who regularly take opioids develop tolerance. It takes higher doses to relieve the pain that once responded to lower doses. But now I'm to believe that the pain med is what's responsible for the pain. However, if I take a higher dose, the pain is once again relieved. How can this be? How can it be that my pain med is causing me pain, but if I take more the pain is relieved? I may not be the world's brightest bulb, but I can still spot a conflict in logic as glaring as this one.
We know that opioids relieve pain. We know that, ultimately, tolerance develops. We know that dosage adjustments overcome tolerance for awhile. We also know that opioid rotation is another useful tool against tolerance. We do not know if opioids cause pain (increasing sensitivity). Hyperalgesia is a theory. In my opinion a hairbrained theory at that.
Whether true or false, I, like Ex, would not go off the meds anyway. I know I could not function or enjoy a meaningful life without the meds. The pain would cripple me.
You've already been given great advice, the only thing I can say is that you aren't on an exteme amount of narcs now, so it's not as if your only option is to discontinue the oxy...Why not think about changing to another narc, like methadone or something else before stopping all together?
You have to do what you think is best for you, however think long and hard about it...I, like many others, don't agree with the theory that pain meds cause more pain...If this were true, nobody on pain meds could endure surgery because the pain would be impossible to treat...Many pts have been forced to wean off pain meds prior to surgery, because their docs believe in this theoery, however many, many others have surgery while on pain meds and their pain is very well controlled by a slight increase in meds. I have had surgeries, pneumonia, kidney/gall stones while being on pain meds and my pain was easily treated by increasing meds temporarily.
It all depends on what you expect to acheive from pain meds ...Some people think meds should relieve their pain completely, and that is not realistic. If meds help 50% of your pain, your getting good results, IMHO.
You have two great reasons to be in severe pain, besides the fusion pain. Arachnoiditis does NOT get better-we can only realistically hope to plateau at a level where we are. In many, it gets worse and the pain gets worse. I wouldn't tell you what to do, but I never would voluntarily go off meds. I'd be back under the covers, moaning and miserable. My BP might kill me.
Please think long and hard about this. Most docs don't know much or even anything about arachnoiditis. Please don't do yourself harm.
Amen! Moldova, I know we are good friends and you mean the world to me. I have been researching this thru the night actually and I am very worried about this. One he is going to have to taper you very slowly. If he begins the taper and you scream is he going to up your meds right back up or is he going to insist you taper completely first and make you stay off of meds for a set time before letting you go back on them?
Also, Exec, Steve and Brain can probably answer this but I believe you would experience worse symptoms tapering down just by itself because your body is looking for the meds because it is dependent on them.
Anyway, please know that I care and I will support you in whatever decision you make.
...Also, Exec, Steve and Brain can probably answer this but I believe you would experience worse symptoms tapering down just by itself because your body is looking for the meds because it is dependent on them...
Absolutely.
First, there's the immediate issue of stopping the dependence. And there's only one way to do that, and it means going completely off of the meds and for a long enough time that one's endorphins can begin again to play their rightful role. During this detox period, not only will the pain increase significantly, but there will also be the discomfort of withdrawal, slow or fast.
Then, how long will one need to be "off of" the opioids to determine that whatever pain does exist is due to the detox period or pain from the various medical conditions?
Moldova, I am afraid that you may misinterpret these posts as being hostile towards your doc. I don't believe that's the case in those trying to help, and I know it's not my intention. I am thrilled you have such a good relationship with your doc. I believe he is genuine in his concern for you and in whatever treatment he wishes to try. What I fear is that you will suffer needlessly. It has been pointed out that the dose you are on is not that high. I wanted to address that earlier but it would have confused what I was trying to communicate. What I don't understand is why your doc has come to the conclusion regarding hyperalgesia when there hasn't even been a genuine attempt to aggressively raise your dose, using a med you can tolerate, to fight your pain. In reality, compared to so many on opioids for CP, your dose is extremely low. To assume the med isn't working because your pain remains, is IMHO poor PM. I could possibly see it if your dose was up in the 500-600mg range, but not at its current level. My doc, whom I respect, wouldn't hesitate to raise your dose as a trial. It's just a fact of CP life that, from time to time, doses require adjustment due to tolerance. Again, IMHO, it's tolerance you are fighting, not hyperalgesia. And I get this from proven science, not theories.
Moldova, I once bought into the hyperalgesia notion. I don't often discuss it. But I was on very high doses of fentanyl for LA and SA meds and my pain was not letting up. One of the reasons my dose was so high was that I had been using, without anyones knowledge, defective patches that were dumping their contents into my bloodstream at an incredible rate. So, there I was, in the hospital, with all kinds of docs trying to understand my situation and how to keep me alive. Then one doc comes in by invitation from my GP, a shrink (and also an addictionologist, which I didn't learn until much later). He tells me that over time opioids can turn on us and begin to produce the very pain we are trying to treat. Given my delicate situation and mindset I bought it. I was immediately detoxed and sent through a 30 day rehab program. They tried for a month to tell me I was an addict, and that the meds had actually caused my pain. I was off of opioids for months. Did the pain stop? NO! Within 3-4 months I had to return to PM for treatment. They put me on methadone and the results were wonderful. The opioids had never been causing my pain. If they had I would not have needed to return to them. That's my story and I'm sticking to it.
Moldova, my only concern is for your well-being. Going off of opioids will not physically harm you. At your current dose you may have little difficulty stopping the meds IF your doc titrates you down compassionately. If you choose to do this I hope you meet with outstanding results, and that your pain is significantly reduced. Wouldn't that be wonderful? To be off of the meds and be relatively pain free? That's what we all want. And that's my hope for you if you go ahead with the doc's suggestion. I wish you only the very best.
Moldova, I am sorry if I sound pushy or bossy. I care very much about you and I just don't want you to do something you might regret. I noticed in a recent post you made to someone's thread, that you didn't understand why they took pain meds for Fibro. I believe you have been diagnosed with Fibro, from past posts. I didn't say anything at the time, but I was a little shocked that you felt fibro did not warrant pain meds.
I'm not sure if your doctors do not believe that it is painful or why you have this impression, but I know if you were to ask many people who have fibro, they would tell you that it can be extremely painful.
So, I guess I am confused. Did your doctor tell you that your pain could not be caused by the fibro you were diagnosed with? If so, then I can't say I agree with this doctor in any way at all.
I would just hate to see you suffer needlessly, by going off the medication that has helped your pain. I, like some of the others, do not believe in hyperalgesia. I think it is a way for docs who don't like narcotics, to get their patients off of them.
Please consider this carefully and maybe do a little research before agreeing to this. Whatever you decide, I want you to know that I support your right to do so. I just want you to be cautious. Hugs, CMP/MM
Sorry honey, if i said something you got hurt about - i did not mean it. What i meant is: I have fibro for many years and never were offered any narco meds. I was on Celebrex, Viox, low dose of anti-depressant to treat pain (I forgot the name), anti-flammotory.. but never opates/opioids. That is what I meant.
I compare meds I have for RA, ARC and post surgical pain and the above meds are not in same group. And also understand that someone like me, who leaves since childhood with RA which casing me severe pain and other terrible symptoms all my life, now ACR and post-op nerve damages,etc. -Fibromyologa with all the pain it causing, not on top of my list of complains. I leaved with it, worked very hard and long hours with it... you know what I am saying? Please, forgive me again for causing any pain to your dear heart...
Wow! I don't even know what to say and to let you know how much I appreciate every one of your posts...
Diet, Steve, EX, Julet, Girl, Brian, Livfreeordie (I hope i named all of you who came here to help me in my desicion) , I do believe in my Dr but I keep my eyes open. With my life long ordeal with childhood RA, 2 spinal multi-levels fusion with a lots of hardware and much more, Arachnoidities, Fibro, all together 10 major surgeries, I learned that no matter how good is your Doc. never hurts to hear from other people, especially survivors and those leaving in CP; I knew that coming here I will learn from you more about my Dr proposal.
He ordered MRI of the Thorasic and Brain areas. He wants to make sure I don't have Lupus or MS. Sometimes those conditions can add to pain patient has already.
I ABSOLUTELY have no idea how will I leave without any pain meds based on my not curable/not treatable conditions such ARC and a lot of nerve damages all over my body, dropped and very weak foot, severe back, hips, legs pain. I know nothing about condition you are talking about and never heard that patients with such damages I have can be taking off meds.
And it has nothing to do with me being unresponsible: he ordered only once my urine/blood work because he says I am his the most responsible patient. I bring him non-ised meds which for some reason I can't use (like i had left Fentanyl patch, Morphine - i brought it to his office and sign papers about doing it; it may be used for some people who need it and have no insurance).
I even take less BT meds than he lets me because I have fear not to get used to them. Don't laugh, but this is how I feel
This is not 100% yet his decision, but he says he would try it since I am for a pronong time on them. If I would feel worse without them, he would put me on right back.
I agree with all of you and thank you for being so protective over me; I honestly feel about you like my family (only good friends and family can protect each other this much). More I think about it, more I agree that this doesn't make any sence. Not in my sitation. If I would be a patient who is seeking narco meds for something mild, than it would be understandable.
I called me GP today to hear his opinion, he agrees with all of you: doesn't make sence and sounds reducoulos (sp?).
Definitely I will ask more questions, I will require more explanation on his part - i will not agree just like this, trust me.
I really thank all of you for your help and support. I wouldn't be able to agree on something without you since I never heard about this sitation and did not know I will be the one to talk about this due to all I am going through.
More I read on this board - more I learn. That is why don't hesitate to let me know your honest opinion.
I bet you had no idea that such an innocent post would get such heated replies?
I love it when someone posts like this and so many respond with such energy. There's so much to learn about all of this. I mentioned earlier that science really doesn't understand how opioids work. Well, if the professionals don't understand it, what chance do we have? Yet, look at all the opinions and ideas.
I love the people here. Everyone is looking out for the best interest of the others, all the while bringing so much experience and knowledge to the table. And the level of compassion is almost unbelievable. I don't know for sure, since this is the only medical board where I'm a participant, but I bet the level of care we show here is rare. Please correct me if I'm wrong.
Sorry, to jump into this thread so late. Moldova I just want to say which ever path you choose be very careful not to burn any bridges. If you do decide to wean off your medication then make sure your doc agrees to a certain time frame that if you're still in pain to let you go back to the meds. I, too, have been faced with this alternative. I think it has to do with the med we're taking. I've heard a lot of people talk about how fast tolerance increases with Oxycontin. It seems to be the drug that people have great success with pain control but end up changing to something else because of ever increasing doses that make their doctors uncomfortable.
My doc said at our last visit that if I need to increase my dose again she will be seriously considering hyperalgesia. I'm having a really rough time right now because of stress due to a lot of crazy things going on with family members....restraining orders, therapists, cancer scares, hospital visits....just to skim the surface. I'm taking the max allowed of my bt meds. Last month I was taking half as much...I just hope she's ok with this
.
Sorry, this post was not supposed to be about me.
We are all lucky to have found this board. I've never found the camaraderie that exists here on any other. Whatever you choose to do you know you will have our support. I would just advise you do think long and hard and make sure you have a back up plan if you do go off your meds. I think Shore once said that it can take as long as six months for our bodies and sleep patterns to get back to normal after quiting long term opiods. I don't think you're on that high of a dose. But, every doctor is different.
Good luck,~Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease
The reason you have CP is b/c of your 2 spinal fusions. I am kinda surprised your Dr can't understand why your back would still be hurting even though your fused. SO many people have CP after back surgery, so this isn't uncommon at all. espeically the type of surgery you had. having cages and rods in your spine is the cause of your pain.
I guess all you can do is to stop your pain meds and see how it goes. But I really think your going to be much worse off w/o them and I am just glad to know your DR will put you right back on them as I would hate for you to suffer any more than you already are. You have many CP pain conditions and that is why you have so much pain. I don't agree with your Dr's theory, I think he is just grasping at straws and is thinking its not possible for you to have so much pain, even if you are FUSED!
And he is going on a theory of pain meds causing your pain.
I am actually surprised on how low of a dose of narcotics your on, given your constant pain levels. I think you need a higher dose of pain meds to help your chronic pain but this is just my opinion as I am not a Dr, just a fellow back pain sufferer who has never been the same since my surgery in 2001 for a laminectomy do to cauda equina syndrome. I have major damage from the nerves not being de compressed for 5 days and I still have total numbness in my saddle area, back of legs and one foot, I also have horrible nerve pain and bad low back and sciatic pain daily since my surgery.
I have been on pain meds for7 years now. My pain has increased A LOT since 2004, and has not let up a bit so I feel for you, as your in much more pain than I am and you handle it better than me as I could not function with all of the CP conditions you have. I feel so bad for you.
I hope your Dr's theory does work. So when do you stop all your meds? are you tapering so you don't suffer W/D?
SS
Last edited by slipperyslope; 05-21-2008 at 11:13 AM.
