This is an excellent question and I hope we get a discussion here. What does it mean to have your pain "under control"?

I am in constant pain- 24/7. But most of the time it is not severe. I am able to work most week days. I can still take care of most of my responsibilities, but the pain keeps me from enjoying anything... but I CAN do the stuff when I force myself. And I can force myself to do a lot through the pain for my wife and kids.

Is the goal of controlling pain to be able to DO the things you need to or is it more about your quality of life? I believe it is about quality of life, but maybe I am expecting too much. I want to be able to enjoy work again. I want to be able to camp without my kids with being miserable and grumpy. Thins like that...that is "under control" for me.

What do others think? Am I living in fantasyland here?

I really think the only person who can give you the answer to your question, is you. Pain is such an individual thing, how much we can tolerate, what activities we are able to do, what sacrifices we choose to make, those are all on each of us individually.

One thing I have experienced and heard many others here mention as well, is the fact that over time our attitude towards how much and what type of pain is tolerable to us each day, eventually changes.

The docs, the medications, the treatments ... it's all about finding a manageable state. Pain management is just that, do what it takes to make our personal pain levels manageable for ourselves.

When wondering if the daily tasks you do is considered a decent measure for quality of life, well once again it is an individual assessment. Unless I read things wrong, you say that you can get a good night's sleep ... there are so many of us who would celebrate if we were able to get a decent night of sleep. So something one person may take for granted, others may consider it the elusive golden egg.

One of the tools I use in my pain management plan, is just getting up and showing up for life each day. As long as I can do that, then I will have one of the most powerful tools available ... life.

"C"

I agree with hagland C on a lot of points. I would give my left leg for a good nights rest!
I have to take my oxycontin at night so I don't wake up in unbearable pain every morning so I can put on my socks. I knew that if I didn't get this under control I would never be able to work again.....(I was laid off a couple months ago and trying to get back in the workforce.)

"Pain under control" I believe is up to the individual as well. I realize that I am very sensitive to pain now that I have been on pain medication for so long. I used to have such a high threshold for pain and now it seems every back pain comes back for a vengeance, when it does. My pain is taken from a lion's roar to cat's meow, if you know what I mean...it's never, ever truly gone.

I don't ever expect to be pain free. But I believe it should be manageable to a point where I can work, drive a car (anyone else find themselves holding on for dear life when they go around a bend? lol), do SOME yard work....I don't expect to go out riding roller coasters and going sled riding!! But this is me. I know simple chores would probably be a Godsend to some. I realize I won't enjoy a lot of things in life that some people get to do, but so be it. This is my life, I accept it!

Decide what you want your quality of life to be and go from there.
If you are still in unbearable pain, I would definitely bring it up to your doctor. There are still many avenues of medications out there that could be discussed and you may just need to up your dosage. We build tolerances to these medications, unfortunately.

Good Luck!
Have a pain free day,
Jackie

My Thanks To All ♥

Yes I do realize I am extremely blessed to have the correct meds to give me a good nights sleep. I have a night cocktail of sleeping meds that work well for me. I do feel the pain in my sleep - but it usually is just for a few moments and then Iam able to return to sleep again. My heart goes out to those how do not get good sleep

Hold on for dear life going around the curves while in a car are also past tense - I use to do that.

So where as my pain meds do not allow me to exercise or do take full control of my life - ( I plan EVERYTHING around my bt meds )I do think I am better off then many are.

I don't want to sound greedy but to have even less pain would be wonderful

this is my 4th attempt to answer this !! as i keep going off on one !! so i will make it a quick answer .we are all different and no one can say that a certain amount fits all {drug wise} its a case of what's right for you may not suit me .i would say that if you can sleep and get yourself dressed and showered and do basic household chores without too much pain then that for me would be a result ..at the moment my pain is not controlled and has not been for some weeks { i see the consultant soon} .Beth if you are in pain then go back to your doctor and tell him/her how you are feeling and adjust your meds to suit ..but remember that medication will never take all your pain away
tony x

Because of your relatively young age and the fact that your doctors say surgeries won't help you, have they considered giving you a spinal cord stimulator or a pain pump? This type of thing, especially for your spine, where they could deliver the meds straight to your painful areas instead of loading you up with a lot of drugs might be more preferable. I know you'd need to take things for your knees and hips, but I'll bet if the pain in your spine were under control, those areas would seem like peanuts by comparison. [Everyone please understand that I am in no means saying that knee and hip degeneration is not extremely painful -- I'm just comparing it to the root of all pain - the spine]. I had been told I was inoperable because I had three levels of my spine that needed fusing. I found a surgeon and went ahead with it anyway and I'm stiff and sore, but better off. You, however, have many levels to deal with and I'm thinking the spinal cord stimulator they originally offered me should be something they offer you.

Linda

Hi Beth,
I don't think that you are asking or expecting too much to want to be able to "do" things again. I agree that whether our pain is under control is a matter of opinion for each of us, but I also think that it is not too much to ask to enjoy things in life again. Don't be afraid to be honest with your doctor about your pain levels. I'll tell you something that really helped me was to keep a pain journal. I don't know if your doctor has you doing this already or not, but it was a great tool for me. I keep a pain journal from day to day. I take a few minutes each day to log my pain levels. sometimes i do it periodically throughout the day if I have a really bad day, sometimes I wait until before I go to bed and log the day then. It is a great tool to be able to bring to your doctor so that you and he/she can pinpoint when your pain is better or worse. Maybe if you have a day where you hit a 10 at some point, write down what you were doing that led up to that. On the other end of the spectrum, if you have a day where it stayed below a 2 or 3 all day, write down what you did different that may have relieved your pain for a while. This way, you may find that there are specific times of day that you need more coverage that you are not getting from what you take now. It has definitely helped me get better coverage with the meds I take. For example, we switched one of the meds i was taking to 3 x a day instead of 2 because I was losing coverage toward the end of my 12 hours like clockwork. This has helped me change my life from being in unbearable pain, to being in a tolerable amount of pain most of the time. I'm not saying that I don't still have days that are a 10 when I "flare" up, but for the most part, I am starting to lead more of a normal life now with my meds to help me through. I can even say that with what I take now, even though it is a lot, I do even ENJOY things again, like fishing. We do have to live with pain unfortunately, it is just the hand we were dealt, but we don't have to live with it at it's worst. As I said before this whole book I wrote, LOL, don't be afraid to tell your doctor the truth. If you are hurting, tell him. Some people, even my own family, give me crap about what the meds may do to me in the future but you know what? I'd rather have 20 good years where I do have quality of life and actually enjoy the good things, than 50 years spent wishing each day away just to get through. Lauren.

My Thanks ♥

Yes maybe I do need to mention this to my Dr. Like I said I just did not want to seem ungrateful or greedy.

I am finding my pain control times are getting shorter & shorter and the meds for the bt lasting shorter and shorter amounts of time.

The pain journal is a good idea. Mine would read the same thing every day pretty much - was ok until I reached up to scratch my nose - and I am serious! There are times that is all it takes

My pain levels are never from over doing it - I physically can not over do it, as in I don't have the ability to do things that would be over doing it.

Once I hit the 10 I am done and down for the count. The ONLY thing that helps is going to bed for at least 3 hrs.

A pain pump has been mentioned to me before - something I need to look into more on my own, but my Dr is wide open to the idea.

Again my thanks to all ♥

This is indeed a very good question. To me, controlled pain is when it is bearable and you can get up and around to do a few things. I wish there was such a thing as pain elimination clinics. Those don't exist unfortunately so all that can be done is managing it. There isn't a magic drug, procedure, or implant that will take it all away or else we'd be the happiest people on this planet.

Anyway, I've been on 100mcg of Fentanyl patches every 2 days before and Percocet 10/325mg for BT pain. The patches stopped being efficient because my body got too used to them and my doctor switched me to something else. I think that I metabolized it too quickly.

Well, I'm doing the pain pump thing right now but it will take a few months to get me to an optimal dose. If this is something you are considering, make sure you research and learn everything about it, especially how life will be like afterwards as well as the risks involved. Take care

meydey I know about ZERO info on the pain pump - lots of research needs done on my end...

first of all, pain meds don't take away the pain, they manage it. even with meds, you still have pain and upping your dose does not mean pain will be better. second, your body gets used to pain meds. i have been taking oxycontin for 7-8 years along with fenatyl suckers and it is like taking an aspirin. i have no effect at all. changing meds does not mean pain will get better or worse. work with pain doctor and by all means, DO NOT UP YOUR DOSAGE WITHOUT YOUR DOCTORS APPROVAL. a lot of people will up dose and not let doctors know. you can o.d. yourself if you do this and also present problems with your pain doctor. if you want a change, go to pain doctor and tell them that meds are not working. a lot of pain doctors will get a red flag in their heads when patients request an upage of their dose of narcotics. you can ask for different meds if you want to. i used to use the fenatyl patches but every time i did something, i would sweat and they would fall off. they would not stay on with tape either so i stayed with the oxy and suckers. remember, pain meds do not get rid of pain, they will manage pain. you will always have pain. i don't think about it and i don't let it control my life. i don not complain to others about pain. what i do is work 5 days a week, 40-50 hours a week. i go home and i do things with my family like boy scouts and robotics classes. i don't do this to show off, i just do it so pain will not control me.
jon