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Posted 2/10/2009 10:59 PM (GMT 0)
hi all; i just joined this chat group today and it is the first i have ever done; hope i'm doing it right.  i am a 52 year old married woman with one child.  in my early 20's i was in an accident that changed my life.  i actually had the same injury as chris reeve, but they were able to put me back together again and despite my broken neck thank the lord i came a pin head away from paralization.  well, i have had to live w chronic pain from this, and at this point am worried about not being able to find any relief at all.  i have been on many kinds or narcotics but the problem is i think from having the doc switch me to methadone (160) two years ago, i have become immune to all other opiates.  has anyone had this happen to them.  just last week, after my telling doc i was so much in pain, i wanted to die, he switched me to 90mg of methadone a day plus dilaudid 8mg 4x a day.  the dilaudid did absolutely nothing for me.  doc said i could increase it to two at a time and still nothing.  i even went higher than that on my own to try to find relief.  what is going on?  i don't know why this is happening.  also, i think i am addicted to the methadone cause when i don't take it, i feel really sick.  i need some answers..........can anyone help? i am of normal height and weight so that's not the issue. 
Posted 2/11/2009 1:01 AM (GMT 0)
Hi, pjs1,
I'm glad you started your own thread, but I'll say welcome again. As you will read from many of us here, achieving good pain management is a challenge. I do believe that methadone does block the effectiveness of other opiates, but I'm not completely sure. We're not doctors here, but can only share experiences.

I'm not sure what to say. For one thing, please don't increase the meds on your own. That could be dangerou. I would call your pain management doctor (I'm assuming he/she is a pm specialist) and tell them you aren't getting relief and ask about other options. It seems like you've been dealing with chronic pain for many, many years and I'm guessing you've tried other things like physical therapy, etc. but have you ever discussed things like a pain pump or stimulator with your doctor. I don't have either, and all I know about them is from what I read here, but you can learn a lot from reading older threads on this site.

The other thing I would suggest is perhaps a consult with another pain management specialist - perhaps at a major teaching hospital, even if you have to drive a bit.

As far as being addicted, we all become dependent on these medications as that's just part of the physiology of the drug in our body. Addiction is not the same as dependence. Your body will have withdrawal symptoms if you stop taking a medication and feeling sick would likely be part of it. It sounds like you're experimenting a bit too much on your own, and like I said that can be dangerou. Please call your doctor and/or get another opinion and see what might be available for you to try.

Don't know if this helps, but maybe others will have some suggestions.

Again, welcome. And by the way this is a forum, so you may not get immediate responses, but you posted just fine! There is a chat room, which you can enter by clicking on it and following the instructions. Sometimes there's no one in there, although I think there's another thread and some people are trying to organize a time to chat.

PaLady
Posted 2/11/2009 1:04 AM (GMT 0)
Hi pjs1 and welcome!

Welcome to our Chronic Pain family. This is a great place to find information and support. Let me first comment on your concern about being "addicted" to the methadone. You are NOT addicted...your body is dependent on it. What that sick feeling is is withdrawal from the medication. Your body is used to getting it and when it doesn't you feel awful!

Addiction is when you are taking drugs you are not supposed to take by either getting them illegally, taking more than you should or otherwise not doing it legally. I'm pretty sure that's not what you meant.

As far as the problem of getting no help from the medications...I'm just not sure why that would happen. I'm no doc, none of us here is, but the one thing that I thought about is that methadone may be "weaker" than many other medications so maybe they can't be traded 1:1. My doc tried me on morphine. Coming from oxycontin I had to up the amount I took by about 1/3 to make it the same pain relieving power. You should ask your doc if this might be happening with your medications.

I sure am glad you dodged paralysis, but am very sorry you have to live with such pain.
Chutzie
Posted 2/11/2009 2:09 AM (GMT 0)
hi, paladay and my other chutz who wrote me back.  what a great feeling to finally be able to talk to someone about what's happening to me.  i am not sure i am getting back to you correctly or how i use this.  if i want to respond to each individual is that what u do or do u do just what i am doing now by cliking the respond button...........looking very forward to talking to all of u.  i was so happy to hear a response, you made my day!  also, palady, i am n ot sure what it means when u said that i started my own thread.  please don't think i'm dumb, i just haven't done this ever before.

Posted 2/11/2009 3:28 AM (GMT 0)
Hello pj. I too would like to welcome you to the HW forum. It saddens me to see you here alongside all of us CPers but the fact that you are reaching out for help and answers to your questions shows me that you are a strong woman that can handle quite a lot and the fact that you went through all of this and are still trying to fight for the pain relief that you want really touches my heart. I felt so badly for Mr. Reeves as he dealt with his illness over the years and wondered what it was like for him to be in so much pain and have so much money and still have to jump through all the hoops and deal with all of the problems that we normal CPers do on a daily basis.

Anyway...I would write more but my pain meds have now started to kick in and I am mega tired so I am going to go to sleep for now. Again welcome to the group and please feel free to write any time.

Hugs

Scarred
Posted 2/11/2009 3:31 AM (GMT 0)
Pjs1,
You're definitely not dumb! I'm 59, so it takes me awhile to get the hang of all this technology, too! One thing that's great here is if you just ask, someone can usually help you. There is a "help" button you can click on which answers a lot of questions. Also, you'll notice Chutz is one of our moderators. Moderators are volunteers who also suffer from the same problems we do, so they participate, as well as give us guidance when needed. Chutz and Lindaloo are the moderators for the Chronic Pain forum. If you have a questions, you can click on their name and that gets you to their e-mail address and you can ask them directly, or just ask herer like you did.

A "thread" is just another way of saying a new topic. Like all the titles you see on the left hand side. And you can read anyone, and at the bottom you can just type a replay in the empty box (like I'm doing now and like I think you did above), or you can click on where it says "post reply" and that let's you add the little characters (emoticons of faces of different emotions). I don't know if I'm answering your questions or not! But we all stumble around here. Feel free to respond to anyone's post, and sometimes you'll see us getting a little silly (some of us are "flying" around in virtual corvettes with wings when we can't sleep at night - kind of the most recent game to distract us from pain and insomnia).

Did I answer your questions? If not, just keep asking!

And welcome....join in anywhere, or start a new "thread" if you have a specific question or topic you want to discuss.

PaLady
Posted 2/11/2009 12:44 PM (GMT 0)
it was great to get up this morning and see that so many have responded to me.  i haave become like a recluse because being like this hinders your social life.  you are either in so much pain or too medicated to care.  i have decided to go back to my doc tomorrow and tell him if he doesn't increase or change my protocol i will have to go to another pain clinic.  he is giving me 40mg or methadone 4 times a day which i have been on for three years and it has stopped having any effect on me.  last week we tried lowering the meth to 30mg 3x and adding dilaudid 8mg 4x, but i had no effect from the dilaudid  .  i think the methadone has made me immune to it or something maybe, i don't know,.  he did push up my meth a  month or so ago to 50mg 4x but then said it was too much and he would maybe be squeezed by the authorities!  i can't deal with that.  i need relief or i can't function. no work, nothing.have to try to work today, or i am getting no money.  i work 2 days a week in a jewelry store, but i can't see that i will be able to continue.  i just applied for disability and have a phone intervie w on feb 19.  anyway, everyione have a good day.............pjsboca

Posted 2/11/2009 1:09 PM (GMT 0)
Hi Pjs1,

I have been told over and over again by my PMD that CP people can NEVER be addicted.  My biggest fear when I entered the Pain med world was that I would be addicted.  I worked in the medical field all of my career and the last 21 years in the alternative medical world.  After attending many seminars, giving in to actual pain meds went against everything I had learned and believed.  BUT....it changes your world when you are on the correct meds and dosage, does the pain go away completely? NO but it becomes bearable. 

Make frequent appointments with your PMD until you find the correct medication and dosage.

You WILL find it!  If your PMD is good, he will work with you until you DO find it.  If he isn't willing then find another Dr. there are MANY caring PMD out there!

Keep believing!

edt

Posted 2/11/2009 3:36 PM (GMT 0)
Hi PJS,

I too want to welcome you to Healing Well. As you can see so far we are a pretty unique group of people that have one thing in common "pain". We always welcome new mwmbers but hate having to see someone else stricken with this awful disease.

You are so right when you say we are isolated. We lose friends left and right, they quit calling and inquiring because we generally turn this down on an invite out. Its nearly impossible to plan anything because we have no clue what the next day may hold for us. In short order we do become a near recluse.

Chronic pain is not something we can see or something anyone can see. Because of this its very hard for others to understand. It takes alot for us to understand and try to come to terms with it. This is why HW is so important to many of us, this is where we get our support, a shoulder to whine on, vent, lean on someone else, get tips & info and share our stories. I also belong to other forums here like the crohns disease forum.

I had tolarance issues with medications too. If that didn't get me the side effects or allergic reaction did. So, in June of 05 I had one of Medtronics IntraThecal Pain Pumps implanted. It gave me some relief and I felt it was a success. Was I functioning alot-no, if I did something one day I spent the next 3-4 days down. The past year I have had more pain and more pain and my pain mgt dr told me I was on the strongest drug there was end of story. He decided in Nov of 08 to close down his pain mgt practice and go back into anesthesiology. I was devastated to say the least. But, he did get a new dr to take over all of his pump patients. I learned from him once you have a pump its next to impossible to get another dr take you on as a patient. Thats one of the important things they forget to tell patients when implanting these pumps.

I met with my new dr a couple of weeks ago and all I can say is I am so glad my former dr is no longer involved with my care. She said that my pain had been under treated badly, my pump is not being utilized to its fullest capacity as it was designed to be. She went on to say even though my dr was a good dr, he was under educated in taking care of pump paitents and under education in the pain medication dept. She refilled my pump a week ago and increased it by 50% and gave me oral Dilaudid 4mg 1-2 tabs every 6 hours. Former dr had me on 2mg every 6 hrs that did nothing so I stopped getting scripts and wasting money.

I have heard the same thing you have about Methadone and other medication added to it not helping. Have you tried reading up on Methadone to check any of this out? You might go to Drugs.com and see what you can find out.

Getting a decent pain dr is a real hit and miss until you land in the office of the right one. Just about all of us on here have kissed a few toads before finding our prince. We have to advocatefor ourselves for sure. If your dr is not willing to work with you on finding something to give you relief, then start looking for a new one, One word of caution when looking for a new pain dr-be sure to ask if he writes scripts for pain meds. Some don't, all they wanted tp do is diagnostic blocks and injections. Some of these work temporarily and some don't, we are all indviidual when it comes to pain issues.

As the others here have said we do not become "addicted" to our medications because we do not take them for a high or for recreational use. Our bodies can become tolerant to a medication. And like you said if it gets time for your meds and you go over the time frame you begin to feel withdrawal type symptoms. Thats because your body is use to that amount in your system. I have become tolerant to my blood pressure medications in the past and they have become uneffective but thats noit addiction either. There is a great misunderstanding of the definition of the word addiction. In most of the chronic pain studies that have been done they state that pain patients do not become addicted to their meds instead they become tolerant.

You did a great job by posting and introducing yourself so others would see the post and chime in. I hope you will hang out with us here as this is a good group of caring people....Susie

                                                                                       

Posted 2/11/2009 5:46 PM (GMT 0)
Welcome!!! I have tried a lot of different things as well, have you considered asking for a liquid morphine? I too had dilaudid for a trial and it did nothing. though the IV version is a miracle! i know how hard it is to be in pain all the time. i myself am finally approved for a pain pump! you just have to be honest with your dr, its not working. i went back to oxycodone just cause it is the only thing that gives me relief. though it dies in 2 hours. :( what can you do? just talk to your dr...... be honest! maybe consider an antidepressant as well. they can help. i am on 3 of them to help with pain due to my back & fibromyalgia. we will always be here to vent to....... welcome again!!
Posted 2/11/2009 11:08 PM (GMT 0)
i am so totally moved that there are others out there who take the time to write back and tell me their story.  i have decided to take myself to my doc tomorrow and tel him to increase my meds or i will have to find another doc.  i am sure now after hearing others speak the same thing that i am not crazy in that methadone is not working in amazing amounts for me anymore and that the dilauded i bought last week was another 65 dollars in the pail.  what i am summizing from everyone is that one persons bum drug is anothers heaven.  i just need to find the right drug and right dosage.  i am afraid if i don't i may try taking too much and some day just may not wake up.  i will see what the doc says.  i should ask for just a couple of days of each new try to see if it works.  the last great idea was for me to ttry liquid methadone.  i could only find one pharmacy to order it, it cost me 100 and it was crap.  i think my doc doesn't believe me that i am immune.  i just feel in such a quandry.  i just want to have some relief, just getting so tired of spending so much money and time finding the right thing and will i ever?          pjs

Posted 2/11/2009 11:42 PM (GMT 0)
Yes you are so right we all metabolize these drugs differently and react differently. Sometimes I think the doctors seem to forget this because they are bad about lumping us all in one category if we will allow them. I am in agreement that somewhere ou there is the right combination for people its just getting thse drs to sit still long enough and think about it. One thing I found out with my new pain dr, she says so many of these drs are not educated enough in medications. I believe this with all my heart. You stop & think about it most pain drs start out as anethesiologist and then branch out into pain mgt. They just don't have the knowledge they need when it comes to medication. Or else they are so darn intimidated by the DEA. My new dr writes more narcotic scripts in the state of Texas than any dr. They pay her regular visits and she is no more intimidated by them than the man in moon. They know this too. So many others run like chicken little, then its the patients that sufffer due to their ignorance.

I applaud you for working in the condition you are in. But most on here will tell you we would rather be pain free and working every day over where we are at now. Please, please be very careful with your meds and not take more than prescribed, its just too scarey. We need you here at Healing Well too much. Hugs, Susie
Posted 2/11/2009 11:42 PM (GMT 0)
don't feel that way, my dr when i first began said it may take a year or two to find the right combo, not to give up. that was 3 years ago. consider an ER pill like kadian (morphine) or oxycontin.... they work well because they are 12 hour release pills. be nice to your dr, remember you definitely don't want to be fiired or lose your dr. they are there to help, most anyways. good luck tomorrow!
Posted 2/11/2009 11:59 PM (GMT 0)
Hi PJ,
So sorry to hear you are in so much pain. I can't even begin to imagine. I do want to echo others' caution about not taking it upon yourself to up your meds. Just because you're not getting pain relief doesn't mean they won't still affect your breathing rate. You really are playing with fire and risking your life, not to mention that if your doc decides to do a random U/A you could get kicked out of the clinic, labeled an "addict" and, lose all your pain meds for good.

I think it's a good idea you have about switching to a different PM doc. My last PM was really limited in what he would write for. He was only comfortable with a few medications & refused to write for anything else regardless of how serious the underlying condition. My current one is a million times better. Have you ever talked to your doc about whether you could qualify for a Spinal Cord Stimulator? I got one 3 years ago & it has been a god-send. I know they don't work for everybody, but I went from being on 15 different medications and barely functional to being now on pretty low doses of 2 medications. I myself have an ultra low tolerance to just about any drugs, but I know others who have an SCS with a very high tolerance who were finally able to combine the SCS with a moderate amount of medication & get pretty good relief.

Also, there is a free on-line booklet put out by the American Chronic Pain Association that describes in detail different medications, treatments, surgeries, natural remedies, etc. that can be used to treat chronic pain. It also describes the difference between addiction, abuse & dependence. I think it can be very helpful b/c it is written in plain English and is quite thorough.

Here's the link in case you're interested. It's called the "APCA Consumer Guide to Pain Medication and Treatments":
http://www.theacpa.org/news.asp

Also, have you checked into prescription assistance programs? $65 is about what I pay for full price for Dilaudid so I'm guessing you don't have insurance. For name brand meds, you can go to: http://www.pparx.org. For generics, talk to your local pharmacy. I know many of the major chains offer assistance programs for generic medications - Walgreens, CVS, Duane Reade, Jewel-Osco, Target, Wal-Mart ... I'm sure there are more. The amount they save you varies by store, but any savings at all helps, right?

It does take time so just hang in there. Things are bound to get better. wink

peace,
frances
Posted 2/12/2009 1:11 AM (GMT 0)
The first thing I would caution is about threatening to "fire" your Dr. before finding another who is accepting new patients. It's a bad bad feeling to be out there with no doctor and no prospect of finding one. I've had doctors move and others retire on me. I even had one replacement doctor tell me that HE thought that I was just an addict and there was no way he was supplying me with my fix. (I offered to give him a neck like mine and he gave me a one month's supply and showed me the door.) The other thing I have to offer is that no two pain drugs are the same. I always felt that when my Doctors wanted to try methadone it was because it was in some way more "palatable" to the Drug Enforcement types. How true that is I don't know...

I have been to almost every Pain management Center on the West coast, including several ran by anesthesiologists, the VA Hospital in Palo Alto CA , Oak Knoll USN Hospital, David Grant USAF Med. CTR. and UCSF. I tried catheters down the spine, ganglion block injections in the throat, bio-feedback, all the Psycho-pain control drugs, everything, methadone, morphine, my medical record (Vols 1,2 and now 3) are each two inches thick. I never gave up and haven't yet. The only thing that has ever given me relief has been oxycodone. For some reason the other medications just bounce off. I was up to 4 X 40mg Oxycontin and 5 X 5mg OxyIR for breakover per day . The problem was that the Oxycontin would run out in less than the time they were supposed to and I would use the IRs to make up the difference, then when they ran out, feeling as though you're on fire can be hell on Earth... Then a bit of luck... The best thing that ever happened was a Doctor suggesting Fentanyl Patches with 5mg OXYIR for breakover. These really took the stress out of my pain meds. For me they were a very balanced and stable "base" level. Since I don't know anyone else with chronic Pain other than you nice folks, (since they closed down my local USAF Base and Pain management group,) so I can't say how they work for others, but changing to the patches stopped the ramping up of my opiate dosage, ( like you others, I don't get any "high" out of my pain meds so it wasn't any of that,) and I have been stable for about 5 years. And believe me, before that it was savage!

Thanks for listening. I'm aware that I've been rambling, but I know that many of you also feel the isolation that comes with turning down invitation after invitation because you just CAN'T do it, and the blank stares when you try to explain the uncomprehendable. My only salvation was meeting a nice girl, (believe it or not,) AFTER I was hurt, who has stuck with me for 24 years and counting. I know that without her and my two sons I would never have made it. And I know that YOU know that it is an on-going battle isn't it. Now I think I'll go have a good cry from the shock of knowing that, for once, someone knows what I'm talking about. Sorry or thanks as is appropriate. Jerry
Posted 2/12/2009 1:34 AM (GMT 0)
Hi Everyone I have been taking 120mg of oxycontin and 20 mg oxy ir 5mg for about 3 years. Can anyone tell me is 1 90 mg of oral moprhine stronger than what I take. I have heard yes and no. I am going to ask my doc about adjusting my dosage to control pain better or just stay with what I have. I have read everywhere that 90mg morphine oral is for opiod tolerant patients. Is this stronger than what I take? Thanks for any responses.   John  
Posted 2/12/2009 1:57 AM (GMT 0)
JerryBoy & Crohns13 - -
I want to welcome you both to the chronic pain forum. It's always sad to see more people in pain - 3 "new" people on this thread alone - but great to find eachother, isn't it? For me, this site has been a godsend, a lot due to the isolation that Jerry and many others have mentioned and know well. This is a wonderfully supportive group, although not doctors.

Crohns - I really can't answer your question as I don't have that kind of knowledge, and there are so many individual variations. I would suggest asking your doctor and your pharmacist. I have found my pharmacists to be exremely helpful over time, except the ones I was forced to switch to now because of my insurance (another story!).

Psj1 - so glad you found us. And for everone, remember you can start you own threads as well as join in on any one's we've already got going. Please be forewarned we get a little wacky at times (within the confines of the rules - it's got to be family friendly) and make things up about flying corvettes, turning into vampires, M&M's and grape juice. This will make sense only if you stumble into our other threads. Just wanted to let you know you're not crazy - we are - and you're welcome to join in on the craziness anytime you feel the urge!

PaLady
Posted 2/12/2009 2:14 AM (GMT 0)
Hi JerryBoy and welcome to Healing Well.

You have found a very friendly forum to hang out with and we all have the one common denominator chronic pain. We understand all so well the roller coaster ride that comes with it. No wonder I never cared for those things,lol. From what you have posted I would have to say you are quite a veteran with chronic pain. I am sorry to hear they closed down your base where you were involved with a group. That had to have been great actually meeting people and it not being totally cyber like here.

You are so right about how we all react differently to pain meds. It can really be a crap shoot on what will work or what does not work, so individualized. I was on the patches for awhile but had trouble getting them to stick. I had the sweats something terrible all the time. I ended up buying Tega Derm and using those to keep the patch clean and dry and in place. I was only able to get up to 50mcg and had to stop. When we tried to increase me to 75 I just could not urinate so on to a different drug we went. I have a wacky system that does not tolerate medications well at all, not just pain meds and ended having a pain pump put in back June of 05. I recently began treating with a new dr as the former dr went back into anesthesiology. My new dr is totally awesome, extremely knowledgeable with pumps and medications. She does her own compounds and in just a short time that I have been her patient, she has made a great difference in my life. I am very excited having her as my dr. She is the number one pump dr in our state and the DEA does not intimidate her in the least. She says she writes more narcotic scripts in the state than any other dr.

Do not be alarmed if you don't get alot of reponses, it would have been better if you had made a new thread introducing yourself that way more people would see it and respond. Again, welcome aboard and hope to see more posts from you......Susie

Posted 2/12/2009 2:19 AM (GMT 0)
Susie, you are really lucky...... glad you have relief. I can't wait until I get my pump. Whats your cocktail, if you don't mind telling?
Posted 2/12/2009 2:52 AM (GMT 0)
I am so sorry to hear of your life-altering accident which causes you constant pain. I had a similar kind of accident but much later in life (59) but it still left me with chronic pain.

Remember, we are not docs or even medical specialists here but we can and do share common experiences. What you describe does not sound like addiction but rather chemical tolerance. There is a HUGE difference and you can talk to your PM doc about that. But over time, the nervous system builds up a tolerance to the drug which requires increasing dosages to maintain adequate pain control. When you stop (which you should not do cold turkey) or back off your dosages, your body responds by withdrawal symptoms.

There seems to be a great deal of disagreement in the pain treatment community about gradually withdrawing from the meds and then restarting the ramp up. Some say that you don't really "reset" your tolerance to the med but rather go right back to the most recent high dosage. My personal experience has been different. I have been stepped down and then gradually ramped up again over time. Again, be sure to talk to your PM doc for your specific case before doing anything on your own.

Unfortunately, when you build but a tolerance to one of the opioids switching to another opioid will not avoid the problem.

It would be wonderful if oneday we had a medication that was really effective, non-tolerance building and non-addictive. It will come just perhaps not in our lifetime.

Hang in there and good luck.
Posted 2/13/2009 4:43 AM (GMT 0)

Hi

I am new and need help too.   Who is a good pain management doctor to see??

Thanks

GEE GEE

Posted 2/13/2009 5:45 AM (GMT 0)
gee gee what area are you in?
Posted 2/14/2009 6:20 PM (GMT 0)
hi everyone, hope u are having a good day. i went to my doc on thurs and asked him if he wanted me to find another doc or if he ws really going to go w me on this journey and help me find the right option for me so i could have some real relief and segment of life back. he opted for oxycodone this time. 30mg 4x and methadone 30mg, 3x. i have gotten relilef from the oxycodone glory be told however, it was short lived. what are the dosages that some of u all out there are taking? i'm happy too cause it's a cheap med. i have no insurance helping me out. would like opinion on this med from others. what is the most mg that this med comes in? i do not want to take the extended release formulas as they are very expensive, so this is the ave i think i'll pursue at this point. thanks.
Posted 2/14/2009 8:39 PM (GMT 0)
pjs1,
I'm glad you're getting some relief. Oxycodone is, as you're noting, a shorter acting med. and it can last varying lengths in each person's body. I can't recall but if you're just starting on the methadone you need to give your body a chance to get used to it. I'd suggest if you feel you're not getting the relief you need then call your doctor's office and say that. Since you just had a "heart to heart" so to speak, your doc should still remember you.

I fear we're asking eachother for too much medication advice of late on the forum, and it's all so individual it just makes things more confusing. So my thought is call your doc back. That's just IMHO.

But glad you asserted yourself and got a change from this doc!

PaLady
Posted 2/15/2009 4:27 PM (GMT 0)
PJS PA is right, What doseage may work for one may not work for another so its really pointless trying to base what you need off of another person's doseage. Again, we all metabolize medication differently. The best thing you can do is call your dr and discuss this with him/her. I do know with Methadone they slowly increase it. Hope your dr can help you....Susie
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