I am concerned about your doctors statement that the goal is to get you 100% pain free. While the first step is to get your pain under control unfortunately you will not find 100% pain control. Anyone who suffers from chronic pain will tell you their pain is not controlled 100% but to a level that is acceptable to deal with.
If your doctor is striving for complete pain relief then your going to be disappointed. Also you do not want to start out on a huge dose of medications because of tolerance issues you will need to have dosage increases and if you star out on a really high dose trying to completely control your pain then your going to be left with no where to turn very soon. There is a limit to how much you can take and it is best to begin as low as possible and go from there. You will need to find the right combination as your doctor said but start at a reasonable dose instead of trying to completely control the pain you need to just get it to a level where you can function.
I hope this helps you understand the steps that you have to take and if you have anymore questions please let us know.
Also keep us updated on how your doing:)
Hello and Welcome to the Pain Mangement Forum. I am glad that you found us.
I apologize that I don't know a lot about your disease without doing some research. Sandee has provided you with some good information. I'd just like to reiterate what she has said.
Your PCP (primary care physician) most likely just doesn't know a lot about pain management. We would all jump for joy if our pain was even 90% controlled.
One of the goals of PM is to control your pain to a level that you can function. For some ppl that may be at a 2 or 3 (on a scale of 1-10 with 10 being the highest) or for others that may be a 5 or 6. It is unrealistic to beleive that one can be 100% pain free.
The good news is that you are on a very small narcotic dose. 5/325 mg of Norco leaves much room for increases if needed in the future. Your concerns are normal for those of us with chronic pain(cp).
Keep in mind that addiction and dependency are two very different things. Any chronic pain patient that has been on narcotics for an extended period of time will develop a physical dependence, meaning if you abruptly stop taking them you will experience withdrawal. You need narcotics to control your pain and function, just as some diabetics require insulin. That does not mean you are an addict. Addicts have drug seeking behavior and do not take the narcotics as prescribed. They are seeking a high more often than pain releif. That's not to say that someone with CP cannot become an addict, but that is not the norm.
I hoped the information you found here has helped you understand Pain Management a bit better. Please feel free to ask additional questions. I hope you will keep in touch and let us know how you are doing. Best of luck to you.
Thank you both very much for your replies, it is nice to know I have people I can talk to that are experienced with what I am going through, and that in itself helps greatly.
Sandee thank you for letting me know that what my Geneticist had said was unrealistic as far as the level of management goes, at least now I will not get my hopes up TOO high just to be let down like I would have been. I also completely agree with you on high dosages, I started taking these Norco's, the doctor said take as needed for pain which turned out to be 6-8 per day which seemed ridiculous to me and started making me worry I was going to end up addicted because now I don't even get out of bed in the morning before they have a chance to start working as the pain usually ***** REALLY bad first thing in the morning. I told my doctor this and he said there was nothing to worry about so I just continued to do it and still do. I have not yet had a chance to see my pain management doctor ( I see him on the 22nd of next month ).
Also thank you Tuck, and yes Ehlers-Danlos is still new I was told, and my PCP ( thank you for the acronyms :D ) knew next to nothing about it, he wasn't even the one that made the diagnosis. I will put the entire story in my "About me" section which you were kind enough to let me know about as I do very much wish to get involved with this community. You made me feel MUCH better by explaining the difference between Dependency and Addiction as my newly formed medication taking habits lean very hard in the direction of dependency ( I stick to a very strict time schedule with my medication, which was actually advice from my mother ).
Thank you both again and I will definitely keep you informed of my progress.
Interesting, I think about that a lot. As I.. am physically dependent on pills, but not in a bad way I believe, because you need them for a serious issue, and not being a drug seeker, seeking a "fix". Some people like us, need them "pills" to function in everyday life. I mean, even if you come dependent on them, it's not like your doctor will just "cut you off one day and leave you stranded, in pain", no GOOD doctor would do that, they would at least taper you down if needed. But, if you need 'em, you need 'em, it's nothing to be ashamed of at all. Like you said, you have joint problems, and you need them to function. I don't know what joint pain really feels like, but it must hurt a LOT. So therefore you need "narcs" to kill the pain, which narcotics get a lot of stigma. Mentioning the word oxycodone or "oxys", will get you flagged most likely in a bad doctor office, anywhere. It's that stigma that's messed it all up, and ruined it for people like you.
It's like a cancer patient, they are going to *die*. A doctors means is to comfort a patient, especially in a cancer patient. And the goal of making cancer patients comfortable, is making them "happy", and pain free as much as possible. So what if you might have to have morphine IV in your arm every 3 hours, if it makes you "wanna live the best time of your life", until you die, then let it be.
Just leave it as it is. Nothing to be embarrassed about, nothing to be ashamed of.
I agree 100% now that I am informed, though viewing it in the light that this new regiment of pills is here to stay or may yet intensify is still a very unfamiliar territory mentally for me and I found myself very much unprepared when I heard the dangers of addiction and heard nothing of dependency out of legitimate need.
I was lead to believe by my PCP that prescribing narcotics WOULD eventually lead to addiction, he even at one point tried to stop prescribing them to me, my Geneticist was on the phone with him within an hour, as my PCP called me back HIMSELF and said "Your prescription is ready to be picked up". Now... I'm not sure what my Geneticist said to him but I'm guessing it was something along the lines of "How is the doctor that MISSED the diagnosis for this disease, going to tell his patient that he -cant be in that much pain-".
I WAS ashamed of something until I read your post Wheels. I had begun to become afraid my doctor was going to stop my prescription, it would have been like, I finally find something that allows me to NOT have to get out of bed one limb at a time, allows me to go for WALKS, like actual walks... just to have it taken away and have to go back to that pain, it scared me and to be honest it still scares me, I had thought that meant I was becoming addicted which scared me even more. This whole experience has been just mixed emotions about every aspect of the diagnosis.
Though, I will say this, it is very reassuring to hear from other people that have "been there". Thank you all again.
After reading your story, it sounds as if you need a long lasting pain medication instead of taking all the Tylenol along with your current medication. I'm concerned that it will damage your liver. In your case, you should talk with your Doctor and discuss the possibility of prescribing a pain med that has NO Tylenol in it.
And yes, don't be ashamed of taking your pain medication. It's for your comfort...you are the one who has to live with the pain.
I truly hope that things get better for you in the future.
Please take care,
I have heard of your condition, I believe you have the same thing as what one man calls himself, "The Elastic Man". He can stretch his skin and hold a glass on it if he pulls it out from hie stomach, and he pulls his skin out from his cheeks. His skin is what you would call, "elastic." All of his connective tissue is very expandable and his joints are also hyper-mobile. He also has pain due to his joints "popping" out. I am sorry you are going through this. I agree with what Sandee says, you need to start as low as you can and stay there as long as possible. If you go up too fast you will build tolerance really quick and then have no where to turn for pain relief. You should know that the acetaminophen in the products with hydrocodone can be toxic to your liver if taken too much or at too high of a dose at once. The recommended maximum dose for 24 hours is 4 grams or 4000 milligrams. Make sure you don't go over that. I don't think any physician would prescribe you that amount anyway, but just make sure you don't take it upon yourself to exceed that dose. If you find yourself where the norco is not helping much anymore I would suggest that you do find a medicine that is longer acting like an extended release form. It does not have the acetaminophen in it and is not toxic to your liver. However, if you can stay on norco and small doses as long as possible, that will help with the tolerance issue. I would not be so worried about becoming addicted if you only take the meds for pain. You will become dependent, but you can do some research on the difference between dependent and addicted. There is a big difference.
I had the same feelings towards pain meds as you do. I started taking them when I was your age, and still do to this day. Unfortunately I may have to take them for the rest of my life and I have finally accepted that. Although my family does not understand and never will.
Good luch with your pain man. doctor and I do hope you find enough relief to function. There is no such thing as 100% pain free. As long as you can function that is the goal.
Thank you both for your posts, it always cheers me up when I log in to find posts :D.
As a matter of fact, the acetaminophen was the first thing I was going to bring up to my PM doc when I saw him in the 19th of next month. Until then I just have to stick with my schedule 6-8 5/325's per day, I don't go over that no matter what, and I also drink LOTS of water to help my kidneys flush my system. Also after hearing feedback from everyone here I feel much better about taking my pain medication.
lol nurse, yes, we have the exact same disease though I'm not sure he has the vascular involvement as well, my joints work much the same as his though our main difference is he works at keeping himself as flexible as possible where as I am trying the exact opposite, when I was younger, I would LITERALLY do the same things he does, you would not BELIEVE the spaces I could fit into... actually got me into HUGE trouble once lol, I'm writing a journal on here that's several pages long people can read if they are curious, though its more for myself. My skin is the same as his also, though again, I don't work at making myself "stretchy", I'm usually very immobile most of the day as my work is done from my computer, I'm lucky I now work from home. I read your profile to find out what you suffer from and I wish you the best, my mother had very similar surgery where the doctor actually accidentally broke off a piece of the grafting tool in her back... and didn't remove it, and she didn't out until years later, when she brought it up to him the ******* shut down his practice... I have heard nothing but bad things about back surgery, but after seeing my mother go through it I know that can't be fun at all.
I'm hoping this "biofeedback" will help me as much as my Geneticist hopes it will, though I guess we'll see.