I am trying to figure out if I am expecting too much or if I need to see a new pain mgmt doctor.
What is the average pain on a scale of 1-10? I range around 6 with an occasional bounce up to 8. Sleep pretty well after tossing and turning for 2 hours.
I have told my doctor time and time again that I am at a six but I don't receive any response. Just get that look like I am asking for drugs. I don't do anything asside from picking up my son 3-4 times a day at most. I have limited my ride into work and no longer spend time with my friends because if I stand for more than 5 minutes...It goes to an eight.
Should I keep a journal in order to help communicate to my doctor what I am feeling?
How do I get my doctor to understand that I am not after the high but would like to be able to do minor things...go to a movie, go out to eat actually go to a party!!! Am I expecting too much???
I would like to be down to a 2 or 3 (a slight ache that can be resolved with a rub or a stretch) with an occasional jump to 4 on a bad day. Is this too much? Responses from everyone is appreciated...the newbies and the experienced
Hi Onyx,
I would have to say yes and no...I hear that you arent satisfied with your current quality of life and would like to have the doctor be willing to tweak that some to see if you can do better. I don't think that is at all unreasonable. I do know that most PM docs would never up your pain meds so you could go to a party, though! I know its hard that we have to give up so much in PM, but finding that balance of pain control and quality of life, IE not being sedated constantly, Is so vital to the big picture. If youre going to be in pain management for the rest of your life, your doctor is looking at keeping you as active and comfortable as possible for years and maybe decades to come. If he throws the big guns at you right away, He may feel you will hit an opiate 'ceiling' of tolerance, which we know doesnt exist, however he would not be wrong to want to avoid having you on high doses of narcotics which could cause trouble with managing future post op pain, among other things. If I were you, I would open a discussion with my doctor by focusing on what you said about not sleeping, lack of rest from pain can make you go downhill physically and mentally very quickly. I don't think you will find anyone whos meds bring them down to what you described as an ache that can be rubbed away, If there are people who respond that well to meds, God bless 'em, they are truly the lucky ones. I would write down what you want out of pain management, and then share those ideas with your doctor, that way everyones expectations are out in the open and hopefully you can meet somewhere in the middle. I'm sure others will have better advice for you, I will wait and see what everyone says, and please let us know what happens! I will be sending good thoughts your way.
Your Friend, Fabby
Hi Onyx: I have always been of the opinion since I've had CP, that if you are able to obtain a 50% reduction in your pain that's doing pretty good. I, like you, range about 4-6 on an average day, and that of course, is when I'm medicated. I take Methadone, 60 mg TID, but without it, I would be up to an eight on the scale, I'm sure. I think you are probably doing as well as your doctor expects. I know my doctor (almost 20 years) well enough to tell him that something isn't working like it should and I'm hurtin". I don't know if you could be outright honest with your doctor and tell him how you feel or not. Some are responsive to that and others are not.
As far as sleeping, I have my nightly cocktail I take which includes Ambien or Ambien CR, Elavil, and Klonopin. I also usually have taken a part of a dose of Methadone in the evening, so I sleep quite well most nights.
A journal might help you in getting your points through to the doctor. He may or may not be receptive to them, but it sure couldn't hurt. Early on, when I was first having pain problems and going through a million different tests, my doc asked me to keep a log or journal on my pain and activities that might be associated with an increase of pain levels. So, you might give that a try.
Good luck to you and I hope you're able to get some communication going with your doctor, so he knows how you feel and your level of pain.
Hey Onyx-
I agree with the others suggestions/information. My pain before pain management stayed steady at anywhere from a 7 1/2 to about a 9, and since being in pain management, I usually hover more around 4-5 daily. I do still have times when the pain goes up to 7 and even really bad peaks at about 9.
I know that I will never be pain free and have accepted that fact because trying to work around it and not accept it only caused me to slip into depression and feeling sorry for myself and that was NOT a pretty sight. Once I was able to accept that I will never do some of the things I love to do again, I was able to really get a grip in this thing and work with my situation instead of trying to work against it.
The pain journal is a great idea. Write in it daily, and even add to it during the day when your pain levels shoot upward. Make any notes that might help your doctor understand what you go through on a day to day basis. You can note also the things you were able to do and the things you weren't able to do, and how you are feeling about how your day went. My PM doctor has all of his patients fill out a form at each visit which states the things we have been able to do easily, with some difficulty, with much difficulty, and things we weren't able to do at all. It's almost like a summary of how things have gone between visits. It also has "range" scales for us to note what our average pain has been during the past couple of weeks and how we feel mentally.
Be faithful in filling out a daily journal each day and then take it with you to your next appointment. Ask your doctor to read it and hopefully he will get the picture.
I didn't see you mention this, so I'll ask. What type of medications, if any are your currently taking and at what dose, and also, what other modalities is your doctor having you employ in treating, dealing and coping with your pain? Are you using any kind of electrical stim units, stretching exercises, or anything else?
More information might help us to understand and be able to give you more suggestions. Like the others said, the goal of pain management isn't to make us totally pain free, but if we can get a reduction of at least 50% or so, then our ability to resume some of our daily activities can be restored so we can be more productive. Unfortunately for most of us, there will always be things that we just will never be able to do again.
Hi Onyx, Even with an implanted pump, 50% reductionis what they shoot for. You could equate 50% to a 5 or call it 4-6 but it's not so much the docs unwillingness to adjust the pump but I'm not willing to feel messed up to maintain an unreralistic level of pain control. Even if my pain is a 5 on good days, there are days where it spikes up to an 8 and that's what BTmeds are for. Sometimes even with BT meds you have tolearn to live with some degree of pain.
A journal will help if you describe what your feeling, how it effects you and what eases the pain. A simple chart that places a random number on the scale every 4 hours isn't realy what docs are looking for from a diary.Personally I think diarys keep you constantly focused on your level of pain. I'm at my least level of pain when I'm most distracted by something else. If a doc can provide 50% reduction and this allows you to excercise or be more active and use other methods of pain management, your pain is being succesfully managed. I's not being obliterated, it's simply being managed.
Once you come to the realization that the problem can't be fixed, if that's even the case, it's up to you to decide if your going to let pain run your life and dictate every days action or if your going to make the best of the raw deal you have been delt.
If your avoiding surgery by being on high doses of meds and still not happy with the relief you get, a diary isn't going to make a bit of difference. If surgery could relieve half or more of your pain why would somone choose to be dependent on opiates and deal with all the negative side efects and aspects of dependency and allow the chance for succesful surgery to slip away. When your the one making that decision, it's not realistic to expect more from you PM doc. The communication problem doesn't sound like it's on the eocs end, you just don't like the answers your being given. Meds have their limit. They can only mask so much pain and so many problems for so long.
In your other post you said you pain was a 6 but the doc wants to operate, What exactly do you mean by that? He shouldn't be thinking of surgery if your pain is so high or so low, when do you think they should consider fixing a problem that may resolve most of your pain isssues? When your ready and when you feel like it? That's not realistic.
If you shop enough PM docs you can find a doc to agree with whatever you want, is that really what's best for you? Do you have the education to make that decision or do you want a doc with 8-12 years of education plus years of clinical experience to sugest the best course of action?
Those things you want aren't unrealistic, but if surgeons are telling you that you need a fusion, it is unrealistic to expect a doc to keep increasing your dose if your not willing to fix the problem or at least try to stabalize it so it doesn't continue to worsen.
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