Not sure what to think...

[bluespence]

I had a Dr appt on Monday with my pain mgmt dr and I asked him what were his long term goals for me and he said he wanted to make sure I continue to function with the least amt of pain and he wants to get me in a daily routine of exercising to help with my pain. I then asked him about people being on pain meds long term and asked if people stay on them for long periods of time or even forever. His response was as follows, typically if people stay on pain meds for more than six months they typically do not get off of them. I said well I have been on pain meds for two years, are you saying I will most likely be on them forever and he said yes. I wasn't expecting that response. I figured he would say he wanted to make a plan to wean me off the meds once the pain was under control or something to that effect. If I am honest with myself, I know I am not ready to get off of them now, but I figured I would get off of them at some point. Now I know I can get off of them on my own, but there is a little part of me that was kinda happy he said what he did. It gives me an excuse to stay on the meds for a long time. However, the other part of me really doesn't know how I feel being on the meds forever. My question is, has anyone else been told this same info from their Dr? Also, what is your response to my post...I would like to hear others insight.

Thank you!!

[tanglewood]

Sorry you have pain and have to take pain meds! I know how you feel. I have quit taking the pain meds several times because I worry about what they are doing to my heart, liver, kidneys, etc. Withdrawl is difficult with many of the meds we take, but you can get off of them even if you've been taking them for several years - I have and I've done it. But, every time I get off of the meds the pain creeps back up and gets worse and worse until I can't stand it and start back taking something. I am scheduled to have a neuro-stimulator test on the 15th; I am hoping that it will work and I will be able to stop (or at least cut way back) taking the pain meds.
To answer your question: yes, several of my doctors have told me that I will probably be on pain medication the rest of my life (I'm 55 years old). That is depressing news, and I'm still in the "denial" stage but beginning to realize that the reality of my situation is that I will be on pain meds until I die. I have been taking pain meds for five years.
IF you want to get off of them you can; but what will your pain be like? Good luck - I hope you work things out.

[Tuckamore]

Hi Bluespense,

I am sorry that you suffer from CP. We know how pain can disrupt our lives. Often narcotics are the only thing that return us back to some kind of normal.

I have been told the same. I will be on narcotics for the rest of my life. We CP sufferers experience different "grief" stages of our condition. I'm sure you heard of the bargaining, denial, and so on. It is normal to vacillate between those stages. Some of us have a difficult time staying out of the denial stage, like me. We hold on to the hope that we'll wake up some day and the pain will be gone and narcotics will be a thing of the past.

You don't have to give up the hope that you will one day not need narcotics. I often think, in the back of my mind, that I will prove the physicians wrong too. It's ok and it's ok to feel a bit down about your physicians statement. Just try to be thankful that they understand you have pain and that you do need medications to control it. If you are like many of us it took a long time to get to that point. I am very glad that your physician recognizes your pain. And nothing is written that says you cannot try to go off narcotics in the future. So keep that in mind.

Feel free to post your concerns or questions. We are here to support you. Best of luck to you and take care, Tuck      

[bluespence]

Thanks you guys for responding and being so supportive!!

[jollyman069]

i came to MH last may because i was  afaird i was addicted to my pain meds. I have been going to a pain med dr for 3 yrs at that time. But thatnks to all these greta ppl here at MH i figured out that i am not addicted to pain meds.. i am depenedent on them because with out my pain medss i wouldnt have much of a life.. so i have resigned my self to the fact that being a cp patient i am going to need pain meds to function.. and the meds i am on would knock a regular person out.. so i come here quit often to chat vent and hey sometimes looking for a shouloder to lean on cause cp ucks and at times get real bad. thank god for the great pplm here at MH and thenk god for [pain meds so i can live a half way normal life

[exbull1]

My pain management started with meds but now injection and cortisone epidurals are being introduced with with plans to reduce the meds and to eliminate them all together. I have back and neck pain due to old back injuries, pinched nerve, arthritis and more. My PM Doc says I have an old neck. I understood pain management to be a stepping stone to no meds. Maybe Im wrong as far as a general statement to all PM patients and this applies may only to to orthopedic PM. I also suffer from Crohns Disease, even though during a flare the pain is worse than  contractions while giving birth naturally, (with no 2 min break between contractions) and lasts hours even days. Because Pain meds can mask a serious Crohns issue. I get nothing for the pain. I went years not understanding I could perforate and die and that I need to be hospitalized ASAP whenever I had a flare. I am surprised I am alive, now that understand and was diagnosed with Crohns. I now know I have to go to the hospital and there I get morphine which bearly takes the edge off. Breathing hurts. Everything hurts. And you can not move an iota without bloodcurdling pain.  Anyway I went 10 years undiagnosed and was accused constantly of seeking Pain meds as an addict. My pain management those days was a heating pad. not much relief. CRAZY!! because of my crohns, even my ortho Drs didnt want to give me pain meds for my neck and back. Now I see a new PM DR for my ortho issues and I do get 90 vicodine and 90 Soma/month. I just promise not to use it for intestinal pain (the Crohns). and agreed to the shots and epidurals and to eventually reduce my meds slowly. But I too like many I read above start running out of my meds early. So i spend the week b4 my PM appt taking bites off of a vic10/325  and soma 350 or crush them together and suck some thro a straw to make it last. Obsessed with being sure I make it to my appt with one of each that I do not take until i fill me new scripts. This month I blew it big time and will no way make it to my appt . But I do feel the weaning as i run low  helps with the discomfort of withdrawal/dependancy. But I bet when Monday comes I will be calling for an earlier in the week appointment. to get my meds. I want to believe I take my meds responsibly but I love my 1st week with full bottles! I really am not takin my meds responsible until I start running low. JUST SHARING. Not sure what I read above that got me typing.

[sandee1818]

Do you feel your under medicated? Also how long have you been on the same dose?
I am one that feels that dealing with pain w/o the help of pain medications is a waste as you have no quality of life when you live each day in pain. When chronic pain is treated correctly you have a much better quality of life. I have two girls 6 and 7and years old and also a 21 year old son  (he lives on his own now) and if I had no help as far as pain medications then I would be utterly useless. I could not go to dance class with them or to the park or have tea parties. I could not even be a proper Mom as the pain would absolutely rule my life. I was forutnate enough to always have compassionate professional PM doctors that do understand that living in pain is no way to live.
Imagine not being able to do things with your children as you suffer so much pain it is impossible and this goes on for years while your pain is not treated ot under treated and then you find a doctor that is compassionate and professional and he begins to treat your pain and you then are able to do the things you have so much wanted to do. With your pain treated your able to do so much that you could not before and now since your able to do things with your children and have a somewhat normal life you look back on the wasted time that you could have been having that somewhat normal life. All the missed tea parties and missed dance recitals and just being able to play with the kids. All that time has gone by and you can never get it back. I often wonder what my life would be like if I had to deal with my pain day in day out with no help. It scares me to think about it.
So remember that you can have your pain treated to the point that you can function more normally and do the things with the children and family. Just because this doctor is not really controlling your pain does not mean another doctor will under treat it as well. I would get a second opinion. Or talk with your doctor and tell him that your pain is just not being treated and you need some help. Do not miss more of your families get togethers and your children's life because your pain is under treated. That precious time is short enough. There are many different things people miss out on because they are in pain. It could be doing things with your children or fmilies or a loved hobby you enjoy what ever it may be don't miss out on it any longer. Get the PM that you needs o that you do not miss out on life.

[tresa47]

Just a quick note on my experience..I have been on avinza ( morphine extended release) for a few months. I don't like being on it...Well a month and a half ago I didn't think it was helping at all with my rsd pain. So my pm dr says let's wean you off it. I had no problems with withdrawls..only as soon as my dose was lowered and gradually tapered off it totally..my pain level skyrocketed....ouch..so I am back on it again.  I have realized I will probably be on it for a long time unless my rsd goes into remission. Which at this point it time..I've had it for almost 3 years.. isn't likely. While my quality of life isn't very high right now. With my pain medications..there are more than the avinza ..I can at least live. Take care  Tresa