Advice from Doc was to "just deal with it"
I have been seeing a PM doc since December for two herniated discs in my neck. The pain is pretty intense.
Well he has had me on percocets and flecotr patches. Every now and then when the pain flares up, I will take one and a half instead of just the one I'm supposed to take. In which case I will have to skip a dose somewhere to make it up.
On my last visit, I explained that my tolerance keeping me less and less pain free. It used to be a good one to two hours of mild pain with a percocet then two hours of bad pain, back and forth, UP AND DOWN, every four hours. Now it is just barely an hour of mild relief.
Now he is a good doctor and I trust him, but I just can't stand hearing "Well, you're never going to be completely pain free unless you try surgery"
No one, including many second opinions from doctors has convinced me surgery will help at all. and because of being new on the job I cannot take two months off for surgery because I am not covered under FMLA until being there for one year, lose my family needs the income.I would get fired, it already happened when I got hurt the first time and need a few weeks off.
I am doing everything, Physical therapy, holistic, pain meds.
So I finally work up the nerve to say (After 7 months) "Can't I try the extended release painkillers with a regular percocet for breakthrough pain?" this way I'm not in constant paranoia about when to take the meds, and I might actually sleep at night.
Up until now we've had a good relationship, now I am getting the junkie stare.
I get the "yeah, sure I could medicate you all day, but that won’t help do anything except make you dependent on more painkillers"
Uh, excuse me, aren't I already dependent on them?
"Yeah, but if keep increasing them, if you need surgery or you have to come off the painkillers it will take months to wean you off. I'm just not going to do that. You can go to another doctor if you want try that, but I can do that here, it’s not like you have cancer, you’re already taking a lot"
I take 6 10/325 percocets a day. A couple of times in the past I’ve had to get a temporary script from my family doc, not because I used too many but because his scheduling practices leave a lot to be desired and my appointments don’t always come soon enough he is only there once a week and the girls who do the scheduling never take into account how much meds I have and when I am going to need more.
And when I bring up the point that "well I if come on such and such a date, I will be out of meds by then" they look at me a and say "well call us if that happens (which I have only to be told there is nothing they can do until I see the doc in person) or, the famous "Well, try and make them last longer"?????
If I could do that, I wouldn’t need them in the first place. I am already under medicated if you ask me. I have extreme pain in my back from herniated c5/c6 and c6/c7 which over the course of 7 months, 5 (FIVE) MRIs and 6 (SIX) epidurals prove to me and, seemingly, to the doctor because hasn't really ever questioned my pain.
God forbid I would bring up the word "under medicated" because after 7 months of just trying everything, the first time I work up the nerve to ask for more, or better "management" of my pain, not only do I get the whole "No way, we're not dealing with cancer here, you can try another doc, blah, blah, blah" routine, but he also breaks out he famous "Narcotics Agreement" (after 7 months all of a sudden I’m a risk?) which I sign with absolutely no problem. I am confident I am not doing anything wrong.
I’m frustrated. I thought about it for a while. Maybe he has a point; maybe I expect to be completely "pain-free" all the time.
But I don't think so. I think, because of the natural progression of tolerance, my six a day percocet regimen is not even coming close to managing my pain like it did 7 months ago. Since the first day I’ve even become anything close to 100% pain-free. Never asked to be, never expected it. And the last epidural I got made things worse, not better.
A doctor once told me that I need to 'increase my pain threshold' which is pretty much the same as saying 'just deal with it'. It's the last thing someone in pain wants to hear and it can come across as incredibly insensitive to someone in pain (I resented the doctor that told me this and wished he would come back in his next life as a pain sufferer so he could appreciate how insensitive he was). I dealt with it by trying different doctors and I discovered that doctors vary in their philosophies and approaches to dealing with issues like pain.
One doctor I saw readily prescribed me painkillers to rid me of my pain while others prescribed pain medication for a time and then gave me hints that I should look elsewhere for more medication. This was despite scans showing that I had extensive spurring and osteophytes on my spine as well as compressed discs and that my pain was genuine. One doctor told me I should take fish oil and grin and bear my pain.
Your current doctor is basically saying he is willing to do no more than he is currently doing. You are the one that needs to be flexible and either try other doctors to see if you can find one that is more sympathetic and willing to prescribe painkillers that will relieve your pain or you need to investigate whether surgery is likely to provide relief. I’ve got spurs and osteophytes up and down my spine and my neck is the worst and there is always some pain in my neck. Initially I relied totally on painkillers and then found that exercising and being more active helped a lot but everyone is different. Your doctor doesn’t sound too flexible so you are going to have to be flexible and either try other doctors or get a few opinions as to whether surgery could help.
I live in a country (Australia) where doctors don’t seem to be as obsessed with ‘covering themselves’ or worrying about having their prescribing habits being investigated if they prescribe a lot of painkillers as doctors in the US but the way I see it trying different doctors until you find one you are comfortable with is your right so you shouldn’t feel anxious about trying different doctors to see if you can find one that is more sympathetic. You have rights and should not feel helpless and you should explore as many avenues as possible in finding relief for your pain rather than allowing yourself to feel helpless and trapped.
One thing missing from your list of treatments is psycho therapy. Yeah, I know it sounds scary and a like a useless waste of time, but don't knock it til you've tried it. I'm not talking about sitting in a shrink's office and crying in your tea about how awful your life has become and how unfair the medical system can be.
Therapy with a pain psychologist can be more beneficial than you think. (Make sure it's a psychologist who specializes in pain issues or you're just going to hear lectures about addiction.) Frankly, therapy has done me more good than all the meds I've shoved down my throat. A good therapist can help teach you some relaxation and meditation techniques that will help you survive those times when no pain drug will help. It can also help you keep your medication dosages down to prescribed levels or less.
The sad trap that most chronic pain patients fall into is thinking our pain will be cured. It's not going to happen. Note that pain docs are called pain "management" specialists, not pain "cure" specialists. Dealing with chronic pain is all about management. Sure, you can take meds and the docs can do their procedures, but there is a certain amount of mental work that has to be done too. And it's work. Until you've tried therapy, you haven't done everything possible to make your life better.
I have added my pain "woes" to twice-daily meditation routine. I've seen therapists in the past but now my main form of therapy is meditation. I practice a Dogen-Soto form of meditation in my daily life and it helps with acceptance, motivation, and just laughing at the silly things I do. And meditating on my pain has really helped.
just not enough. The pain is overwhelming sometimes, both off and on meds. I realize the doc is not a "cure" specialist but feel he thinks I am seeking more than I need. I honestly do not believe that to be the case.
Maybe I can offer you a look at what your DR may be thinking.
Yes to look at you like a junkie is ****. Afterall, you are taking narcotica aleady.
But in the world of PM, people on extended release medications have gone down every possible avenue and it is a last resort to take something like oxycontin. Kind of a we have nothing left to try with you, we give up for now. And that is a terrible feeling.
Your DR is basically saying, we have something else for you to try. Wouldnt you want that kind of DR instead of one cramming narcotics down your throat when there are other ways that may desrease your pain? That would make a terrible DR.
You cannot do the surgery for one reason or another. In your DR's eyes, there is still another option left for you to trya and you wont. Putting you on a extended release medication to them is like giving you narcotics when something else can be done.
It's not nessesarily right but it's not wrong either.
From having an incurable disease and having to be on oxycontin, I can tell you that you should take adantage of the surgery when you can. I do understand the job situation, but you also said no DR has convinced you it will work. You cant know that unless you try.
It could work and then you wouldnt need narcotics. Dont you want to know you tried everything possible for your pain.
Dont get me wrong, i feel for what your going through. I am in constant 24 hour pain. But you also have to do everything you can to try and fix it. If that means waiting out the time until your covered at work. I would love another option.
Believe me, you dont want to cross the oxycontin or Fentyl patch bridge until you have no other choice and have hit a brick wall. And if your DR still says no after you try surgery, get another opinion. But no Doc is going to prescrible extended release until you have tried all the options. And if they do, there not very good DR's.
I'm sorry for being so blunt with you. I dont mean to sound harsh if I have.
I just hate to see you miss an oppertunity to try something and chose to go on heavier narcotics instead. Extended release isnt always what its cracked up to be.
I do hope you find some relief however that may be. But my advice is to try the surgery when work allows.
Yes, unfortunately surgery is out of the question. I am taking care of my father who is going thru chemo and would probably lose my really good, government job (how about that, a gov employee who dosn't want to miss work!)
I figure unless I can't walk, I'm not getting surgery right now. My PM doc says he understands but that it is the only other option.
What I don't understand is instead of oxys or fenatyl, how about just increasing the dosage of the percs to a level that would work, say 8 a day instead of six? he said that was out of the question.
Maybe one of a few reasons(in his mind)
could be because he is worried about how much apap you would be ingesting on a daily basis for who would know how long
He could also be thinking your pain must not be that bad if you arent willing to do and try everything possible to end the pain but bad enough to take short acting meds when needed.
but really those are just guesses because DR's always have about 10 ereasons they throw at you for anything...some that make no sense. But still they call the shots when it comes to narcotics.
Sucks I know.
But at least he thnks your pain is bad enough or real enough to script you with them at all. That means that he listens to at least some extent.
I'm not nessesarily saying...just take what you get and be happy.
You of course are free to get a second opinion if the DR will allow it without faulting you
(I say that because when it comes toa PM DR patient relationship and narcotics, patient rights do not exist in the way they do for a normal DR. Sad...but true) Its hard to get treated with narcotics these days if your illness or condition isnt malignant and of course we all say, we'll just find someone else who's willing to treat us with the medication we need. But in alot of cases you leave that DR and cant find someone even willing to give you short acting meds, then you try to go back to the origional DR but they in more cases than not deny you treatment because you left to get more pain meds somewhere else.(I'm talking narcotics not other techniques PM's use)
I'm just saying think hard about it before you get a second opinion if your DR is the type who will block you out and chalk it up to "addict behavior" and red Flag you. He may see it as you just wanting narcotics if you leave you find them.
It's a catch 22 and it's far from fair. But PM is a game for the patient..what to say, how to act...we just dont know all the rules.
I'm sorry to be so glim, just want you to know some of the game rules before you look else where. But your DR might be okay with another second opinion about medication. Who knows.
If you signed a contract, thats a whole other topic. Especially if you said you wouldnt look elsewhere for narcotic pain meds...your then locked into there rules and its basically signing away all your patient rights. Hence my above explination.
I'm really sorry your in this position. I know it is awful.
Maybe you could talk to your DR about any non-narcotic options that you havent tried yet along with your meds now. There are tons out there. Ant-saizues, anti-depressants, anti-anxiety.
I'm sure you've tried some, but you could always give more a shot and see what happens.
Which I could say something different:(
No, You're right. And you do have to play the game sometimes, i figured that out years ago when I was pill-head just for the sake of it.
When he said "you could see another PM" I just said "No, I trust you. I have no reason to do that, you know what you are doing and have been taking good care of me so far"
In the beginning when I was so stressed out about my injury he even gave me xanax. After a while tho, he said I would have to shee a shrink for that, which I did. The the psych looks at the list of meds from my insurance company (who were so kind to send on to every doc I've been to) and got a little suspicious. i explained to him "look, I've only got the xanax, once a month, from the same guy" and he was alright then.
he does believe me or wouldn't script me. He sees the MRIs and tells me "boy you must be hurting". but not like "cancer" hurting", but to the uninitiated (me) I always feel like I'm dying with the serious pain. I'm just gonna relax and be glad he's treating it at all. he did say "Ok, perhaps we'll limp you along until december" (when can get covered for surgery)
I know it's frustrating for you, but the thing is, seven months is not really a long enough time to have built up enough of a tolerance to a dosage to need an increase, so that could be where the doctor's hesitation to increase your meds is coming from. No matter what medication you take, you will never completely negate your pain, and to try to do so by increasing your dosage by yourself is only going to result in you developing a much greater tolerance, and therefore dependency, on the meds than you normally would.
If your pain is at, say, an 8 on the pain scale when you first go to the doctor, expect the meds he gives you to bring it down to maybe a 5. To look for anything more than that is to expect miracles, and then when it doesn't happen, it only increases your frustration which, in turn, increases your pain because tension just naturally does that.
My advice would be to find another doc and start fresh with him or her, and whatever he or she gives you to take, follow those prescription instructions to the letter. Keep a pain journal and when you go for your follow up visits, take your medications with you so that the doctor can see how much of everything you have left at whatever point in the month it is. When the doctor then sees that you are following their directions to the letter, they will be more willing to change your prescription if necessary. If they think you are changing the dosage on your own, they're going to shy away from giving you anything else because they are going to see you as a risk to get into trouble with it, and they'd be right.
Hhmmn, I have a different opinion. Most docs would rather have you on a long acting med than just increasing the short acting. With the SA you are getting the ups and downs of pain control and that can seem to raise your tolerance where if you are given the LA you can get a good period of time where your blood levels are consistant. You also tend not to get the "high" or euphoria with LA (if used as directed and not snorted and such), so you do not need to increase as much once you find the therapeutic level.
Hearing doc say things like "you don't have cancer" infuriate me. There are conditions that can be more painful than cancer and as I have had both, I can speak from experience.
feel for you. going through much the same thing right now (two years along in this mess). even gone as far as surgery and it has not helped. currently looking for a doctor who will provide me options. that's all i ask for. if a new kind of med doesn't help, then what is next? three primary care physicians just stare at me blankly. nothing. i should add that i was seeing a spine specialist for over a year and after epidurals and then surgery, the same blank look came from him. no options. i have to work a lot on my own to research options, and those are refused by my doctors. and i'm not talking about narcotics here. just would like to see a pain management specialist or try a different neuropathic pain medication. the answer is no. and each time i DO fill my narcotics, there are weeks of waiting, and reviews by the doctor, the hospital he is associated with and often my insurance. in the end, at least with my current dose, they always agree. or they agree after i pay my $20 for a new visit to my doctor (which has to be scheduled months in advance) where i am asked the same questions and receive no new options.
as for surgery, i think a lot of people answering this question aren't quite listening to your problem. currently, you CAN'T have surgery, do to numerous life complications, most of them which can and will be resolved soon and hopefully you will be able to have surgery. i suggest you try it. though, i do have to add to the dim research you have already done. it didn't help me.
the climate of fear around narcotics and the frankly ignorant way most physicians deal with the issue of pain create a very difficult obstical. you shouldn't have to overcome this on top of everything else, but you will have to just keep fighting it. good luck.
I have had the neck surgery, except mine was c4/c5 c5/c6. Its been 2 years & im absolutely GLAD i had it done . I also have had l4/l5 l5/S1 fused twice first time l5/S1 didnt heal & had to do over again. IF you decide to do the surgery when your insurance takes affect Try to get into a teaching facility Like Duke university & others around the country. They use different techniques & recovery is absolutly amazing compared to some butcher just going in & doing god knows what. Not that all docs do that but sometimes people just let the wrong one do the surgery. Trust your gut feeling on the Doctor, if your just not sure ask for a second opinion from another Neurological staff . Good luck on the pain till you can have something done . Also try a chiropractor, some may laugh but they do make some difference too.
Oh & by the way my nic is oxyidiot because i let them take over my life & didnt really need them after i had my surgery & everthing was corrected . Now im totally off the pain meds all together . So the surgerey does work , like i said TRY to get into a teaching facility & things will go better .
Thank you. I've been an oxyidiot myself before, know wha you mean. I am not sold on the surgery because:
a) it was offered too quickly by two docs (the orthopedist and the PM doc) as the ONLY viable solution which immediately had me suspicious.(And they work together in some sort of business arrangement...hmmmm)
b) I've spoke with about nine people who have had neck surgery for my issue, in meatspace, not online, who have worse pain than before
c) as I mentioned before, I can't take the time off work to be covered insurance wise until December when i will have a year at which time my insurance company and job will consider me a "real" human being in need of treatment, i guess
Your advice to find the best doctors is great, hadn't thought about the "quality" of the surgery since my docs made it sound so routine. My ortho even said he had it done himself, so he could, you know, continue to operate. Which convinced my that I wasn't ever going to let HIM do the surgery!
How do you go about finding teaching facilities in your area? I'm in central jersey.
Thank you for your reply. That blank stare or quick brush off with "well you're just going to have to deal with a certain amount of pain" is something that make me want to be violen, very violent. Yes, i know i am going to live with a certain amount of pain. But who decides what that level is the? The doc who thinks you're exaggerating, or me, whose answer will be acceptable to the doc as long as it's "yes, i can now deal with this amount of pain. Because right now, i fee like i can't deal with the constant pain interspersed with about an hour of the meds taking it down a notch or two. That just makes me want to take more or go on a long acting pain medication, which, apparently, means you are a drug seeking addict or just a baby who doesn't under stand what 'real pain" (i.e.: cancer patients) is. And yeah, the insurance company is starting to ***** to me and sending notes to all my docs about the supposedly "high amounts" or meds I am taking
Me: uh doc,. the allergist prescribed the tussionex for chronic sinusitis and bronchitis (at least three times a year i get those fun ailments)
Doc: yeah, well, it's still too much.
As if to say, you need to pick which ailment you'd like to treat because you can't treat both with schedule IIs because the insurance company gets their panties in a bunch when you do.
or my recent experience with my psychiatrist who looked at the insurance companies list and thought i was "abusive because one week it was "endocet' the next it was "oxycodone" the third it was some other generic percocet. After three times of trying to explain that they were all just generic percocet, he refused to budge and just said you are taking too many "different medications" which only happens because sometimes I go to different pharmacies depending on what errands I am running. DOC THEY"RE ALL THE SAME DRUG -he didn't get it.
Then, at the advice of my orthopedist ( to his credit) I went for a second opinion at a neurologist who specializes in the neck and spine.
he looked at my MRIs for about three minutes and says "So, what is it that i can do for you?
I say ; Well an opinion would be nice
Doc: Well my opinion is hat I've seen worse, I would hold off on the surgery and try more PT, here's a guy I know who is aggressive an gets you in shape, none of that"neck stretching, treadmill, heat and pulling rubber bands ********. He said you could do that at home. I agreed. Went to his guy and found out my insurance won't cover it. Oh well, so much for that i idea,Which, i can't do anymore after signing my "narcotics agreement. Which still bugs me. seven months of treatment and now I'm in need of a narcotics agreement because i went to a few different docs to get some in-between coverage.
Which is funny because here was the conversation back in February:
Me: Doc, you schedule me for every two weeks but only write enough for ten days, what do then? (he's only in his office once a week)
Doc: well if you run out, just go to your GP and explain you need a couple of days meds to tide you over. i remember the first time i tried that my GP just laughed in my face. " I don't wrote those kinds of scripts unless it's an extreme emergency. Sorry
Me: yeah, but now I'm going to have to go four days without percocets and I will get sick.
Doc: well, that's what happens when you take those meds
Me: But i have to, I'm in chronic pain
Doc: Well, make what yo have stretch out until then
Me: How do you stretch out two percocets for four days
Doc: Sorry, i just can't help you.
Thanks for nothing, what happened to the Hippocratic oath???
To my PM's credit i explained that I am taking them exactly as directed and still running out before my next appointment) this was like months ago.
he used to say "well, i can't e you a script for 84 percocets because the pharmacy won't fill that many.
????? WTF? I knew for a fact that the phrmacy fille a script for 240 once a month, but kept my mouth shut.
So after the brow beating about going to different docs (which was his ******* suggestion) I said , well can you write the script for 84 which willhold me over till my net appoointment, which he did. Wow, what a novell idea,wrtie enough of a scrpt until your next appointment. I know it says , and the standard excuse is "t ake them "AS NEEDED" which means you shouldn't be taking 6 a days even if it says 'take one every four hours". The pharmacist even had the balls to say to me " so I guess you're getting up in the middle of the nigh to take one of these" to which I replied with a modicum of sarcasm "yes, unless I don't want to sleep and lie there in pain"
As you know, i agree with you. I'm not looking for longer acting meds to abuse, I just want something that will work consistently, not ******* up and down all day like a roller coaster. it's not to get high, which I'm not against as a by-product, but for the best "management" of my pain.
My mother has osteo-arthritis since she was in grade school and has never know a time when she wasn't in pain. over 20 years in percs everyday and they keepo telling her that her liver is fine. i keep telling her "that's great about your liver, but that's not the point"
This is all so frustrating.
Thank you all sincerely for sharing your stories and advice to me.
just email me at agentsmith110111gmailcom if you'd like to chat
. i could use the help and support.
Sincerely, thanks to all who responded, it has really helped to know I'm not crazy.
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