I visited my primary Dr this week and we discussed the state of my pain level from the full body neuropathy I acquired 18 months ago. He said he attended a pain management seminar recently. The thrust of the seminar was that patients should be treated to achieve an acceptable level of function, NOT to relieve their pain. In other words, once the patient becomes functional any remaining pain is acceptable. He jokingly said that pain lets you know you are alive. This is in line with what Dr Smith said above.

What amasses me about this philosophy is the idea that a doctor gets to decide the level of pain a patient is to endure. They frequently have the means to relieve pain but choose not to do so. Being functional is not the same as having a decent quality of life.

My Dr and I have a 25 year good relationship so I was able to unload on him. This is the mindset of every Dr who has treated me for pain. Less is better. It is BS. Do not depend on most Drs to be sympathic to pain. I have found that they are not. Sometimes you have to be resourceful to get pain relief.

I have been keeping a journal, but just on my calender which I bring to my pain specialist. I tried to download the site that has the journal in a format you mentioned, but I was unable to do so. My computer blocked it and I am not good enough to figure out how to get the file. Is there another way to send it on through to us. this sounds like a better way of keeping track than just on a calender, Peace and less pain for the holidays, ginnie

Hi Ginny-

I just so happened to answer tech support emails for a website, where I explain to folks how to get past exactly these sorts of issues!

A couple of things- first make sure that you have the very latest Adobe Reader software, which you can download and install from the Adobe site at:

get.adobe.com/reader


Next, it sounds like your computer's security settings are preventing you from being able to download a file from the internet.The way to resolve this so you can download this file without risking or changing the rest of your computer's security settings is:

1. From your Internet Explorer browser window, go to the Internet Options menu. (There should be a little gear icon representing the Tools menu in the upper right corner of the window, and Internet Options is at the bottom of the drop down menu)

2. Click the Security tab of internet options, and then click the green checkmark for 'Trusted Sites'. There will be a button to the right which says "Sites" - click it. A box will appear for you to add a site to your list of sites that you trust to open and download such files. Type in "http://www.painfoundation.org" (without the quotes) and click 'Add'. Then close that box.

3. Click the "Privacy" tab in the Internet Options box (where you were to begin with), and click to turn off the pop up blocker. After you download this file, you can go back in and turn it back on! Click Apply to save these changes and then close the Internet Options box.

Once this is done, go back to the Pain Foundation site to download the notebook:

http://www.painfoundation.org/learn/...-notebook.html


Your Internet Explorer may still try to block the download, in which case there will be a yellow/gold bar across the top of the browser window. Clicking that bar will display a drop down menu with the option to allow this particular download. Click yes.

When you download the notebook in Adobe Reader PDF file, it may open in your browser window, and then you can click the little floppy disc icon to save it to your computer. I have it saved to mine so I can reprint pages when I need them, but the link above has links to print additional specific pages rather than the whole notebook all over again.

IF for some reason the steps above still don't allow you to download the file
through Internet Explorer, please try a different web browser. I personally prefer and recommend the Google Chrome browser, which is great for downloads and multimedia viewing, plus you can sync your bookmarks across multiple computers or devices, including Android phones and tablets.

If you need any more help with this, or any other computer issues, don't hesitate to ask- just PM me here! If necessary, I can send the file to you personally as an email attachment! GOOD LUCK!

[Very glad to meet you. thank you for the directions to do this on the PC. I copied the directions and will give it a whirl. There wasn't evena PC in my college, so my generations isn't so hot on the PC. If I have trouble my son will come over and have me tap through it so I can learn. I appreciate those that have this ability. Hope your holidays are peaceful and have less pain. ginnie

I do agree with you. The pain doctors get to decide for us how much pain we are to be in. I am with you and shoot for the best possible quailiy of life I can have. I got lucky with finding a pain specialist. He happens to be the kind that has great empathy, and allows the patient some control. I wish everyone were so blessed to have a doctor of this nature. So often I hear of patients on this site forced into no activity because of their pain levels. I pray their doctors have mercy. Someday it may be their turn to be on the receiving end of things. Have a peaceful and less painful holiday. If there are any patients in Florida, I have the name of a good one. ginnie

I have had back/leg pain for many years and have actually had a spinal fusion and am still on some heavy pain meds. However, I do injections which help me a lot. They don't help everybody, but help a lot of people and have helped me. I am what is called C2 pain meds. which is Dilaudid, and Morphine. Those help me very much and don't leave me loopy but I am also on a lot of seizure meds. and I have had a spinal fusion. There is an anti-inflammtory called Lodine, and GOSH does it work wonders without side effects!
Just a quick input for you, hope it helped:-)

[I] do understand the pain you are in. Keep the pain journal, and do seek a pain specialist. Hydrocodone didn't do anything for me eithor except make my stomach upset. After two cervial fusions, I am on a low dose of Morphine. This drug does not make you loopy, but it is to be respected. Herniated disks are no fun. If your quality of life is becoming non-existant, or highly restrictive, do tell your doctor and ask for more help. I also have had Katamine infusions, which some have had success with, and others fear. I had good results with mine before my spinal surgery and after. The preceedure did not hurt very much, and I got about two months of good pain control. Consider your quality of life first and seriously dicuss that issue with your pain doctor. As I said in my other post, I was lucky with my chosen physician as he has a great deal of empathy. I hope that you find that place where pain is alot less. ginnie

I also has spine fusion (rods & screws) as well as a laminectomy. Eventually developed PN. The spine pain, as well as the PN, at times is pretty bad. My Pain specialist has given me all the usual injections (under ansthesia); trial stiim. Nothing worked. He has continually upped my pain meds; Oxycotin, Percocet, Vallium, Ambien Cr for sleep. Without these, I don't know how I would get thru a day.

You obviously are not on enough meds to help with this terrible pain. The Oxycotin and Percocet have not made me feel loopy at all. Yes, I am dependent on them, but different than addicition. Hopefully, you can get you Pain Doctor to understand that your quality of life is very limited.

Hey Big D,

I agree with the first half of this statement. However, pain usually must be relieved to some extent in order to achieve an acceptable level of function.

IME, I've not heard it expressed quite as above, and since there are so many opportunities for mis-communication/interpretation (seminar to doctor, doctor to patient, patient to group....) it may be worth discussion.

My understanding, and what I have always heard (and read online in articles on PM & talking to doctors about pain) is that patients should be treated to achieve an acceptable level of function, not to be pain-free. (And that's a significant difference). Yes, a certain amount of pain is acceptable, but how much pain is "acceptable" is relative and subject to evaluation and interpretation between each doctor and patient on an individual basis. What's "acceptable" to one patient may not be to another, and there are too many variables to be able to establish, let alone apply, a single standard to all cases. This is one reason most PM doctors and ERs use that 0 to 10 scale without any objective benchmarks/comparisons.

The duty of, and responsibility for, prescribing powerful analgesics must lie someplace. It's been established over a long period of time that these duties & responsibilities lie with physician rather than patient, but that doesn't mean that the patient has no input. The relationship is one based on knowledge, experience, communication, and trust, and except in some rare cases (abuse, diversion, incapacity, etc.), works that way. That said, not all doctors are suited for PM, yet at times that role is foisted upon them. Applying the same "do no harm" standard, they can be torn between the harm of pain and the harm of prescribing potentially lethal substances. Sometimes the dilemma is an ethical/moral one, but more often I think it's political, and that's the reason for doctors "choosing" not to treat pain. Treatment of pain is, and should be, a medical issue - not a political one.
http://www.aapsonline.org/painman/pbmaterials.htm

I wouldn't know how to define (let alone equating) either of those for anyone else, and I think most (if not all) doctors have a difficult time with it as well. I think many people would, and do, equate them, but I can also see why some would not. What it often/usually comes down to is how pain effects a person in their day-to-day lives. That's why I usually recommend the articles that can be found googling: talk doctor pain

In a general way, I think less IS better, if/when we're talking about the least amount of medication being used to achieve the desired result, and in a Big Pharma determined environment of "one dose fits all" prescribing. Prescribing too much of any medication can result in problems.

When there is a problem of inadequately addressed pain, (re-)evaluation, titration, and monitoring are still appropriate.

Doc

Hi. For the ice treatments mrs. D mentioned, there are back belts sold in any medical supply store that have a space where you can slip a cold pack (or for those who need it, a hot pack). Then you can move around and do your activities while wearing this belt with the ice pack. I have used it and found it useful when I was in the U.S., but now I am not there anymore, but my back belt is.