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655875 tn?1295695107

Unmangable pain...WWYD?

What do you do when you are in unmanagable pain?  Would you call your PM, go to the ER or suck up the pain for a few days?

There are days where I can't handle the pain and I'm literally going out of my mind and I'm at a breaking point.  I herniated 3 discs in my neck and unfortunatly I have spinal cord compression on my C5-C6.  I'm currently taking percocet(one 4x's a day) and zanaflex(one 2x's a day), but at times the percocet doesn't even help with the pain, especially if it at the unmanagable level.  I want to ask if it's alright to call my PM in between appointments.  I have done this twice.  I try and explain the pain I'm in during the appointments, but I don't know if I'm being clear enough to him.  It's when I call him and then he makes adjustments to my medication.  I really would rather have quicker appointments and get the procedures done quicker.  He is so busy, only see him every 2-3 weeks at a time.  So far I've had an ESI and a nerve block at two levels.  They need to do more more nerve block on the other side to prove I need surgery.  I'm fine with that, but these nerve blocks hurt so bad and I do not look foward for these shots knowing that it is not going to help.  Also, the pain keeps on getting worse as time goes on.  I'm assuming its because of the spinal cord compression.  I wish this nightmare would be over and get on with my life.  
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712802 tn?1274645485
I'm sorry you have so much pain; like everyone else I can relate. You have been given a lot of good information and advice from a lot of people who know way more than I. Some of them have also helped me. So, I really don't have any advice to add - sorry; but I did want to comment on an experience I had. When my pcp referred  me to my current PM doc I signed the contract that I would only get Rx from the PM. I called my new doc - the PM and said I can't bare the pain; they told me to go to the ER! I spent Thanksgiving night in the ER and missed visiting with my youngest daughter and her family. I was really upset with my PM doc and when I went back for a follow-up appt I told him I felt like ditching him. He said because I was a new patient and he didn't know me well I was told to go to the ER. He called my pcp and talked to him. Now I have a better relationship with the PM and he trust me and gives me the meds I need. I agree with everyone else - you are under medicated. I think, at least in my case, it was a matter of building trust with the PM to gett the meds I need. Hope that helps - good luck.
Helpful - 0
441382 tn?1452810569
It sounds to me like you are terribly undermedicated.  For the severity of your pain, one 5mg Percocet every 6 hours is a very minimal dosage.  Is your current doctor an actual pain management physician?  Or is he more or less just a GP who is maintaining your chronic pain?  The reason I ask is because the dosage you are at is the typical dosage that general practitioners feel safe prescribing to chronic pain patients, and some won't even prescribe that high a dosage.  They want to help, but they are afraid of getting in trouble with the FDA, so they prescribe what sounds like a lot to the average person, but in reality, doesn't even scratch the surface for someone who truly suffers from chronic pain.  

With spinal cord compression you are dealing with nerve pain, which is one of the most severe forms of chronic pain.  Sometimes, when it comes to nerve pain, even the average pain management physician isn't equipped to deal with it.  When I was first diagnosed with adhesive arachnoiditis, I was recommended to our local pain management physician.  Everyone in our town who deals with chronic pain goes to him, he has the reputation of being a miracle worker who keeps people going despite debilitating chronic pain.  With my MRI films tucked under my arm and hope in my heart, off I went to his office to consult with him.  I was sure he would look at my films and whip out his trusty prescription pad and tell me to sign his contract, he'd hand me my prescription, and I would have a wonderful relationship with the magical pain control physician that everyone in town thinks walks on water.  It didn't quite go that way.  He took one look at my MRI films and said "I have never seen anyone with the extent of nerve damage you have.  I sincerely don't know how you are walking as well as you are.  I am very sorry, I will not be able to help you.  You are beyond the scope of my abilities."  I was devastated!  As happy as I was that he was honest with me  (brutally so, in fact) about the extent of my damage, my next thought was NOW what am I going to do???  Fortunately, I live near Houston, and there are some world-class hospitals a little more than an hour's drive from me.  So my wonderful DH got on the telephone with the Houston phone book in his lap and he made phone calls until he found a doctor who was not only accepting new patients, but would take Medicare, which is my only form of insurance.  That was THE luckiest day of my life!

It turns out that the doctor he found gave me an appointment just two days from then, and the only reason I got in that quickly was because not ten minutes before DH called, they had had a cancellation.  That day began my now six-year-old relationship with my neurologist/neurological oncologist, who was absolutely APPALLED that I was being maintained on a mere 120 tablets a month of 10mg Vicodin.  He told me that I was so badly undermedicated it was a wonder I was able to get out of bed in the morning!  He also told me that no drug that contains tylenol is suitable for long term treatment of chronic pain, because tylenol is extremely toxic to the liver, so the first thing he did was take me off the Vicodin and put me on 10mg of oxycodone every 4 hours.  As the months and years passed, we have adjusted my dosage quite a few times, and we even tried switching to Dilaudid at one point but it just didn't work for me, so as soon as it was apparent that it wasn't working, I DID have to go see him even though I had just seen him two weeks before, but he switched me back to the oxycodone at a higher dosage with a liquid form to be taken every four hours in between the pill dosages for breakthrough pain.  We have developed an excellent relationship over the years, and because I can be honest with him and tell him that I'm getting used to the current dosage and need to increase it, I never, ever run out early and need to call to get more before I am due for them.  He never gives me a hard time about it because he knows I follow his instructions to the letter.  I just saw him yesterday afternoon and he increased my dosage because the one I had been on for the last 10 months was now just taking me right to the day, without so much as one extra pill of wiggle room.  So he increased the dosage of my pills by 30%, so now I have about a four day cushion.  I thought he would just add a bottle or two of the liquid, but he fooled me and increased the number of the 15mg tablets I take instead.

My point in telling you this is that with nerve pain, it is best to seek out a doctor who deals either strictly with neurology, or better yet, with neurological oncology.  First of all, they have the knowledge to treat the pain aggressively, but because they are neurologists/neurological oncologists, they also have the ability to prescribe the big guns without everyone going "wow!  that guy prescribes a lot of pain meds!"  That's their JOB.  And they won't prescribe anything that isn't necessary, but at the same time, they won't allow you to live in pain just so that they can say that they only prescribe X amount of pain meds per month.  Chronic pain is ruining the lives of tens of thousands of people in this country, and just because there are addicts who will do or say just about anything in order to get their fix, there ARE doctors who are skilled enough to discern who is being truthful with them and who isn't, and they WILL help those who are truly in need.  Tests don't lie.  As long as you have the films and electromyelogram tests to prove your pain, they will help you.  So find yourself a neurologist/neurological oncologist and let him help you.

Ghilly
Helpful - 0
441382 tn?1452810569
You might be relieved to know that with regards to toxicity, Percocet is one of the least toxic meds you can take for pain relief.  It is the drug most often prescribed by doctors to organ transplant patients for pain, especially kidney transplant patients, because it is well tolerated and doesn't damage the transplanted organs.  Pure oxycodone (Percocet without the "cet" part, which is tylenol) is even better, because the tylenol is far more toxic to the body than the narcotic part.

Ghilly
Helpful - 0
547368 tn?1440541785
Just for the record, I meant to say that even those with no medical background can offer good advice and support equally as well and/or sometimes better than those who do have the background.  And visa versa, I was not trying to be disrespectful to any one. We are all equals here. So before someone misunderstands what I was trying to say I thought I'd try to clear up what I meant to say.

And now I'll shut up and up and end with Happy Holidays to All,
Tuck
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547368 tn?1440541785
Stuckinopanalaind, I did not think you gave poor advice. If you read my post it said the same thing. Check the contract, call the PMP. We all try to give the best support and suggestions that you know how to give. We are not physicians, some have more medical background than others but even those with no background can give better support and suggestions than one who does. We all care about one another and are trying to help. I very rarely see a "bad" suggestion by anyone. And usually the "bad" ones are not meant to be anything but helpful.

RunningMom, You are doing the correct thing by calling your PMP. It is important that he understands how severe your pain is. Describing it as you did was very good.I hope you will call him again today.

Peace to all, Tuck

Helpful - 0
Avatar universal
Hi all that posted, I hope you all don't think I was advising Running Mom incorrectly? The reason I mentioned to check her contract is that I had a fellow patient from my old pm doctor called me last week and told me that our old dr had left him from 11/22 through 12/11 without meds as he claimed he can only refill 3x without a follow up appt! Well during that time my friend went to the er after calling the doc and pretty much begging him to refill and warning them that he was going to go to the er if they would not help him! They told him to do what he had to do but to keep his contract in mind before he did so and then ended the phone call so on or around the 4th of dec he went over to the er and told them what happened and before they would administer any meds to him they called the pm doc and then returned with a script for 12, 5/325 percocet and told him tofollow up with his pm doc! This is where it gets bad! He went in on the 11th at 7am as told to and my old doc came in the room and gave him 2 scripts one was post dated for january and one for this month of percocet 5/325! Well before all this er room and so on happened he was taking 60mg of Avinza per day and my friend asked him why he was putting him on the percocet and he was told that since he took it upon himself to obtain pain meds from another doc that he was now on his own and that is what the post dated script is for to give him an extra month to find a new doc and that he would recieve a letter in the mail making his discharge official and that he should request his records on his way out so he can begin his search for a new pm asap! I'm telling you all this doctor needs to be disbarred! I thought that 6-7 days was bad when he done that to me but this poor ole guy had to go 17-18 days and this guy has had 4 surgeries and has the cage in his back and the last time they operated on him they had to go in through the stomach instead of the lower back! you all tell me what you think?
Helpful - 0
655875 tn?1295695107
Thank you all for your advice.  I did sign a pain contract, but I do not have a copy of it.  It does state that I can go to the ER, but the ER would cost me 75 dollars to sit there for hours and they don't really help with the pain.  I haven't been to the ER because I'm afraid the ER will send me home and say I have to see my regular doctor.  I've been there once before for gallbladder issues and they did not help me.  I've been to the ER for my daughter, they really didn't help her either(she was 4 years old with a 105 fever and the nurse yelled at me for being there even though she needed an IV and antibiotics).  I don't want to go out of network at a different hospital and have a huge medical bill due to insurance.  I'm not worried at all about following the pain contract.  I do exactly what he says and I do not take or do anything that he is not aware of and that includes over the counter medicine.  I know, I do need to be more assertive.  

As for the Percoct, I take the 5/325.  I take one pill every 6 hours(I just had it increased to this a couple days ago).  It took my body a while to get use to the medicine.  I think its pretty toxic to the body, but it is an okay pain reliever as long as my pain doesn't get out of control.  Once the pain in unmanagable, its like that for a few days straight.  I have not been pain free since the day I've injured myself playing with my girls.  

When I do call the PM, I leave a message with his nurse.  I do not call for an increase of medication.  I call and ask them if there is anything I can do to get this pain under control.  I tell them that my pain is at  9 1/2- 10 and I simply can't handle it anymore.  In fact, it was so bad a couple days ago I was vomiting.  I did let them know I was in tears and that I was sick to my stomach.  They have called always called be back with in a couple of hours.  They do seem very nice in the office and they are always joking around with each other.  It's a nice atmosphere.  I just wish they would let me have the surgery sooner then later, so this would be all done and over with.  Hoping that the surgery will help.  
Helpful - 0
667015 tn?1268595478
Hi, I am very sorry to hear that you have that much pain. I know what its like not knowing what to do. I would always call your PM and let them know that you are in that much pain even if you decide you need to goto the ER, the ER will try and make the pain go away because that is what they need to do for you, but like said above, if you have a contract with your PM about them being the only ones to give you pain meds they might take this as a breach of contract even tho they should not. PM's have been over used by drug seekers for too long and now they have to be cautious, I have even seen reports of Undercover ppl going in to PM's to see if they can get them, if they do and the right steps are not taken by the PM they find themselves going to court over it.

I have had 3 failed back surgeries for disk ruptures at L4-L5 and L5-S1. Now I have a SCS (spinal cord stimulator) installed in my back that at times has given me 70+% pain reduction. But in order to get to the step to even have the trial unit done took almost 5yrs. And it was really my only option left besides fussion of my 4 lowest vert. I had to go with the SCS because im only 34yrs old and have 2 young girls that I want to be able to do things with. Now this might be an option to talk to your PM about, ask about a TENS unit and if they think it might help you. I also still take pain pills I know that I will never be free of pain no matter what now. I take perk 12x/day and Lyrica 2X/day. Now even with the pills and the SCS unit there are times that I am in extream pain, it happened just a few days ago and my wife wanted to take me to the ER for some help, but I was afraid that if they gave me a shot to help with the pain that my PM would find out and drop me, hes a real good PM and hes helped me get back to a sorta normal life. Opps sorry about that I got off track...

  You should never have to be in that much pain, you should call your PM and just ask if its ok for you to goto the ER when you are in pain if you can (if its too late at nite and you are in that much pain please goto the ER if you can) so they will know that is what you have to do to get rid of the pain. Also your kinda lucky in the fact that your PM will make adj over the phone with you about your meds. Mine will not I have to see him first (due to ppl just looking for a fix i guess) and I only get to see him about 1/month. If you do talk to you PM and let him know that you are in more pain than you can handle and that you are hoping for a diff pills to try and help ( DO NOT ASK FOR A CERTIAN TYPE ) let him make the call, if you ask for a specific type that might send a signal of you being a drug seeker. So please make sure that you talk to your PM and he understands whats going on with you.
Helpful - 0
547368 tn?1440541785
Hi Running Mom,

Your story is familar. I am so very sorry you are experiencing so much pain. You are obviously under medicated, or better put your pain is not controlled. Percocet is a good narcotic for short term use for moderate pain. I do not know the dose you are on but at the very least is sounds as if your dosage should be increased.

As Sandee said you have to be cautious and follow your contract. Take it out and read it so you know what you can and cannot do. Based on that I would first call your PM and explain the amount of pain you are in. If he cannot see you or will not make an increase or change over the phone than ask what you can do until he can see you. He may well advise you to go to ER. If he does not offer you pain relief and your contract allows for you to go to ER than by all means I would go to ER. I would be certain to pick up the phone again and inform the PM Clinic that you are going to ER because you cannot stand the pain.

Life is too short to suffer needlessly with uncontroled pain. I encourage you to act and be assertive. Only you know your body and how if feels, explain your pain to your PMP. So don't hold back when you are able to talk to him. Tell hime what you have told us, only in more detail.  

Please keep in touch and let us now how you are doing. I am hopeful you will soon have better pain control and your "nightmare" will soon be over too. I will look forward to your next update.

Take Care and Peace, Tuck
Helpful - 0
356518 tn?1322263642
I would advise you to make sure your PM Dr knows that your having this kind of out of control pain to begin with. Your on a low dose of medication for the kind of pain you have. Maybe you should ask your Dr to explore other options available to you.
If your in pain as you describe by all means go to the ER or your Dr. You do not have to explain this as we all know how it gets sometimes when our meds don't seem to work. That is why we pay our Dr , to be there when were in pain and need them and the ER can help too. I reserve the ER for extreme pain myself though and usually go through my PM Dr for uncontrollable pain when possible.
When your in extrme pain that your meds are not controlling you should always seek help from where ever you can.
I hope things get much better for you and I wish the Happy Holidays!
Helpful - 0
Avatar universal
Sorry you have experianced this level of pain! I am too a chronic pain sufferer! I have herniated disc's from L-3-L-5 I have stenosis of the spine I have 8 bone spurs between the vertebre area and degenerative disc deterioration! I take oxymorphone (opana er) 10mg 2x day and percocet 10/325 3x a day and I have had three sessions of ESI treatments I have also had facet injections and oral steriods (pill form) Nothing has helped! You are very lucky that your pm will have anything to do with changes and or refills in the middle of the month! I am between pm docs right now if you read my post here in pm you will know why it's a long story it is easier for you to read it than me to write it again!lol. My old pm would do nothing for me over the phone as far as upping my meds refilling my meds unless it was time for the last script to run out! and I had better not be a day early either! As far as him understanding your pain level,some people have to end up going to the er to get thier pm to realize that you are not just trying to pump pills and are in unbearable pain to the point that you are willing to let the hospital do whatever to stop the pain! Then it gets them off thier behinds and do something as it makes them look bad cause the er thinks why aren't you handleing your patients pain correctly! Listen carefully though! This is a last option advice! As some pm docs have in thier opiate contracts that you cannot obtain meds from any other source other than them or you will be discharged that is if you are under contract! In my opinion if you are hurting that bad he should prescribe you oxycontin and some high gain ir oxycodone for acute pain that was the only thing that helped me at first until I trained myself to handle the pain! A lot of docs do not like to give oxycontin as it is one of the most abused script drugs on the market and if people find out that he will write that script then he has people coming in that does not need it and then his job is harder trying to filter out the ones who need it from the one who don't at least that is what my doc told me about my area! It is a shame that kids and addicts have messed things up so bad that people like us that just want to have a normal life can't because doctors always have a chip on thier shoulder when it comes to pain relief! Another thing that helped me was my doc put me on cymbalta for a while to help with the depression I had develpoed from the pain until he found a mixture of meds that would let me have at least 40% of my normal life back then he took me off of them and hopefully this new pm I am going to see on the 29th may have other options for me! I wish you all the luck and feel free to pm me at any time if you have any questions that you don't want the whole world to see and I will ansewr them as best that I can! Take care and Merry Christmas!!!!
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