Last post Sun, Jul 06 2008 1:58 PM by mainethang207. 86 replies.
Miss Pamm,
Thanks for the kind words. It sounds like you sort of answered your own questions. First it's admirable that you just stopped. That is great. You said it was for recreation and that says you smoed it to just smoke it. If you are in so much pain, and the Norco isn't working allow yourself just once to find out what it would be like. Pain meds are not all cracked up there to be. To me it's gotten to where I take them just to take them and know they aren't fully going to do it's job. You have a good reason to make responsible choices about the pot. It's for pain, your not going to want to waste it. Save it for those days that it's unbearable. Have you ever talked to your doctor about the possibilty of getting on script for it. Make a stink, your doctor can't ignore giving you something to help. Yeah it does help. More then I thought. I was so freaked when I first started using it because I did listen to that stigma about it. It comes down to what is best for you. I can tell your daughter really cares and knows the pain your in to suggest it and give her blessing on it. Using pot is not saying you'll be back where you were years go. The first time I ever did pot, I made my friends join in. I tell you though in minutes this awwwwwwwwww relief feeling came over me. Then a few more minutes I realised more of the affects, then the guilt went away. It's 4:45pm Calif time right now. I hope you did get some rest.
Your welcome to email me any time shellgvchick@yahoo.com
Good Luck
Maggie thanks so much! I love reading your posts.
There is a difference between addiction and dependency. With addiction comes addict behavior, overuse, abuse and med seeking. Some of us take the smallest amount necessary of a narcotic or controlled substance to relieve some of the pain and personally I suffer far more than I must because I do not take as much as is prescribed of Oxycodone. I am dependent on the drug for pain relief or really just taking the edge off for a couple hours.
Sherry
My very understanding doctor explained to me that there was a difference between being "addicted" and being "physically habituated." In the first case, the need for increased armounts is ever growing, and an individual may go around legit sources to meet that need. "Physically habituated," from a medical point of view, is to prescribe a level of medication that is determined through trial with the patient, and maintain that level for appropriate pain management.
That said, I was prescribed oxycontin for over 10 years at a very high dosage, had a pain patch and used Vicodin for breakthrough pain. It definitely worked, and some people in my family actually stopped our relationship because they thought I was just a drugged out addict, but they did not have the incredible pain. I also used pot, which was not prescribed, because it is not legal where I live, but my doctor was aware of this, and knew that for me it helped me to feel my body, hence relase the muscle spasms I experienced, and reduce my pain.
However, even though testing showed no liver damage, my acupuncturist said I was "cooking my liver" with this, and I also felt that I was living in a state of slurred reality. At that point in my life, being totally present was more important than blocking the pain, which I worked very hard to find other methods to do. I used massage, meditation, the new brain machines that produce alpha waves, hours of yoga to stretch, exercise in a heated pool, and visual imagry, among many other modalities.
For example, one good image was to concentrate on my third eye (between the other two), imagine a bowl of water above my head (clear or blue water) and try to move while keeping the water still. If you pinch your leg before and after this, having worked with it for a time, you may find that the imagry helps the mind free itself from the pain recognition, although the pain is still there.
In 2006 I decided that I did not want to use the narcotics as I felt there was a potential life threat involving my liver if I continued to use them, based on my multiple year use. I did not enter a treatment facility. I reduced my dosage by 10 mg of oxycontin every two weeks for a long time, and after some months I was narcotic free. I also stopped using pot as it too was having an effect, in this case on my COPD.
I do not advise anyone about their pain medication choices, because living in pain is hell. I share my experiences to say that I used them for a long time, they worked, I lost family who disapproved, and removed myself when I decided that the meds could become part of my problem, not part of my solution I now live with extreme pain, even with the above mentioned coping methods, but for me it is a better choice..
it's possible you are right, but equally possible you are wrong.
i have been on pain killers for over 10 years, and not just vi or oxy.you can not tell whether your loved one is abusing meds or not, no one can answer this for you, the only person who can answer that question is the one who is taking the meds.
there is a wonderful letter for people with out chronic pain i am not sure who wrote it, but read it if you wish to understand, and it will help you understand that you can not understand chronic pain with out having it.
chronic pain is not black and white.
Thanks so much, Sad, for that link to "Life in Pain". What a great letter to be able to provide to those in our lives who just don't understand. It will be a valuable tool for me with certain people in my life who just don't "get it" no matter how I try to explain it to them.
Hope you are having a not-so-bad-day.
Gentle Hugs,
Maggie
I have to agree that the letter covers the whole story. I am very grateful to have such an articulate docvument to use to help me explain my situation to those who just don't get it. Thank you very much. Warm regards.
Just my two cents. Pain tolerance and sensitivity to the pain relieving drugs are very individual, althought for most short term situations a blanket Rx works just fine.
In true pain management for LONG TERM pain they have found that managed properly two-three vicodins a day are equal to seven or eight. But one must be managed by a professional and weaned down with some of the additional non-narcotic drugs listed in earlier posts.
YES, recreational use is easy to get involved with, because it serves so many purposes - not only pain relief, but escape from your condition or depression. And to family members, you do get goofy and this may seem like recreational use. I myself found that I could not take Flexaril and do any meaningful task or work, but percocet and other similar drugs were OK. The patient needs to manage this with her doctor and relay concerns of addiction.
BTW, There wer LOTS of great comments on this thread, IMHO. This is a problem for most on this site.
Bonnie, you have some good points except for one totally illogical one. Your liver tests were normal but you got yourself off narcotics just in case? Let me just throw this out for you to ponder - you are obviously very in tune with the mind-body connection. That being said, do you consider what long term effect the stress of being in constant pain is vs the occasional or continued use of narcotics? Many drugs are excreted through the liver, but even with out of whack liver function tests your liver has a remarkable ability to heal itself in many circumstances. for example, a severe undiagnosed diabetic will have all sorts of abnormal liver function tests (as well as other values). But once the diabeties is under control, those values usually come back to normal. If you are really concerned about your liver, why not see a board certified endocrinologist - they can help determine if you are at risk or not. YES, most of these drugs are toxic as hell !!! But it is a risk vs benefit thing.
I admire that you have spent much time in meditation and visualization techniques. most people can't concentrate that much on such things. And if they help you, great. They don't really cost anything and there certainly is some evidence of mental ability to attenuate pain in some cases. A positive attitude is no old wives tale!
Best regards
Bob
To Ortho Surg: I did not work with an endocrinologist, but my primary physician (MD) who prescribed the medication (in consultation with a neurological pain specialist) was certainly very pleased that I was able to withdraw from the narcotics. In his opinion, I am doing far better. So I am going with that. I was also seeing a psychologist for pain management, and she has terminated the therapy as she feels that the self-hypnosis and other techniques she has taught me allow me to handle the pain within tolerable emotional limits.
[Also, I did not fully explain the diagnostic situation, in that x-ray, along with the non traditional view, did show some liver issues. I simply did not pursue further traditional testing; I understood the x-ray to be an iinconclusive final testing method, but all things considered, I wanted to be free of the drugs]. I think that was the bottom line--I wanted to be drug free at the time, for myself.
I am concerned about the long term stress of pain, which is why I said that I could not make any statements about pain medication regarding other people's choices. I do take the point, however, of another writer, that those who abuse meds (for example by chewing oxycontin) are the ones who know if they are abusing them or not.
Thank you for your concern. After over a decade, it seemed to be the right choice for me. (Also, now that I am swimming for 1-2 hours daily in a therapeutic pool, the scleroderma pain is reduced), although I do not deny that I still have significant pain issues. Again, thank you for your concern, and your information for others who need to make these difficult choices. Bonnie
Bonnie, I didn't see the part about the x-rays - sorry. here is all I read:
>>However, even though testing showed no liver damage, my acupuncturist said I was "cooking my liver" with this, and I also felt that I was living in a state of slurred reality. <<
The final conclusion, though, is that you were able to get off narcotics, which few can do. Although this is causing you increased pain, all these drugs are poison to some extent. It is an individual issue, and you have made your choices based on your research and outlook. But just for fun yu should have your doc (any doc) get a liver function panel next time you need lab work. It would be interesting to you if any of the values are out of reference range. Then perhaps you would feel better tking something for breakthrough pain when it just gets to be too much. You are the ideal patient for this, you have a healthy respect for the drugs and take the dangers of addiction and dependence seriously, with and educated eye.
I wish more people had access to pool therapy, it helps in al sorts of conditions. The sceroderma must be maddening.
I am on a mission to do more research on Low Dose Naltrexone for autoimmune diseases. This seems to be a new wonder drug for Chrone's, MS, Fibromyalgia, and other diseaes. I'll have to see if it has any effect on scleroderma. I'm not sure what the cause is, but i had an employee with this, and it is a long slow progressive problem. It apparently is passed geneticaly. I wish you luck in your search for a somewhat normal and pain limited life!
I had to jump in here after reading all the posts. As a chronic pain patient and a member of the American Pain Foundation, I sometimes just want to shriek after reading pain forums. I just don't understand where people get their information. Sometimes, when you read something, it is just an opinion, not a fact. It is not based on facts available through the various pain foundations and university websites, nor any research studies that I have read, nor any information from the pain management doctors that is available (e.g. Dr. Scott Fishman, Chief of the Division of Pain Medicine and Professor of Anesthesiology at the University of California, Davis.). By the way, many doctors have begun using the term opioids instead of narcotics. Probably because of the stigma associated with the term narcotic.
For anyone concerned about their Vicodin prescription ("cooking my liver"), consuming excessive amounts of acetaminophen, over a long period of time; (or taking 10 to 15 grams of acetaminophen in a period of 24 hours) can result in hepatotoxicity. It is not the semi-synthetic opioid in Vicodin that is the problem. This is the kind of thing that just sends me into orbit. I'm not trying to be mean but really, did your accupuncturist do you any favors by making that statement without qualifying what he/she meant? Yes, anyone taking any high amounts of an opioid mixed with acetaminophen should be having liver function tests being done regularly. Because of the acetaminophen. The way to get around that is to request an opioid without acetaminophen such as oxycodone (percocet without the acetaminophen). And somewhere I saw something about Flexeril - just in case you don't know - Flexeril is not a narcotic, it is a muscle relaxer.
I believe that pain management should be attacked by a team of specialists. I have an ob-gyn chronic pain specialist, an ob-gyn - accupuncturist specialist, a physical therapist, a psychologist, a gasteroenterologist, a psychiatrist/drug-addiction specialist and a psychologist. Two of them I see every ten days and I only go to the gastroenterologist when my stomach is acting up and I have chats with the drug-addiction psychiatrist every six months just to make sure there aren't any problems developing.
From the American Pain Foundation: "The goals of pain treatment are to reduce pain and suffering, enhance quality of life, and increase the ability to function—all while minimizing the risk of adverse effects. These goals are the same for all pain patients regardless of addiction history. Drug treatments include nonopioid medications, such as acetaminophen, aspirin and the nonsteroidal anti-inflammatory drugs (NSAIDs); numerous drugs known collectively as the adjuvant medications (including antidepressants, antiseizure medications, and others); and opioid analgesics. Like the decision to use any other treatment, the decision to try an opioid, or to continue opioid therapy on a long-term basis, should be based on a careful evaluation of the issues specific to this approach.
There also is substantial confusion about the meaning of, and the true risks associated with, drug-related phenomena such as physical dependence, tolerance, and addiction. This confusion can lead to the withholding of opioid medication because of a mistaken belief a patient is addicted when he or she is merely physically dependent. It can lead to inappropriate targeting of practitioners and patients for investigation and prosecution, and to excessive and unfounded fear of opioid use among patients and the public. This confusion must be resolved to settle the important medical questions relating to patient selection, treatment goals, dosing, and monitoring. The answers to these questions should be informed by research.
The controversy also stems from a lack of education about these drugs on the part of clinicians, regulators, law enforcement, policy makers, patients and the public at large. The scientific literature that does exist is often poorly recognized. This literature is generally viewed by pain specialists as having established the effectiveness of opioid therapy in selected patients. It also has helped define the risks and range of benefits that are associated with the approach.
Family and friends, or health care providers who are not directly involved in the therapy, may express concerns about the use of opioids. These concerns may result from a poor understanding of the role of this therapy in pain management or from an unfounded fear of addiction; they may be exacerbated by widespread, sometimes inaccurate, media coverage about abuse of opioid pain medications.
Ideally, the clinician’s decision about how to treat a patient’s pain is based on a full understanding of the likelihood of both benefit and harm from reasonable treatment alternatives. However, there are few data on risks and benefits for many treatments, including the long-term use of opioids. Nevertheless, it is widely agreed that opioids are an option for long-term pain treatment and that a trial may be a reasonable step for patients who have moderate to severe chronic pain. If the patient is referred to a specialist or pain treatment center to receive treatment, the referring physician should understand whether the expertise needed is in fact available. Not all pain specialists are knowledgeable or experienced in opioid therapy, for example, and not all provide access to psychological or rehabilitative treatments.
Pseudoaddiction
Abuse:
Addiction:
Physical Dependence:
Tolerance:
I hope everyone reads through the above-information knowing that my intent is to educate. I believe there is too much hysteria in the public and the media and by the well-meaning but potentially harmful intentions of relatives. I remember when my sister was "just horrified" and making noises about addiction when I told her that I was on 8-10 percocets a day. Sounds like a lot, doesn't it? Nevermind the extreme weight loss, the paralyzing depression and inability to work that I was experiencing from the pain - I was taking too many pills.
Shortly after that, my doctors and I decided that we weren't making the best use of the medications available and we did not have the pain under control. I was switched over to a twelve-hour morphine tablet taken twice a day.
The next time my sister expressed outrage at the number of pills I was taking, I told her, "Oh, you don't have to worry, I'm only taking two pills a day now." And I said it with a smile folks. My sister was "extremely relieved" that I was no longer on so much medication. That is the best example that I can give you about the misunderstanding surrounding pain medication.
There is a terrific book written by Dr. Fishman called "The War on Pain." If you are a chronic pain patient or a family member concerned about the chronic pain patient, this book can clear up a lot of questions.
For anyone I may have unintentionally insulted, my apologies.
Lillianna
This was an extremely informative and eloquent post. Everyone should print this out and review. It is difficult enough to manage patients with significant pain issues but to add a layer of complexity via rumor or misinfomation makes it next to impossible.
Great post.
Bob C
Thank you so much for that very informative post, Lilliana.
I have believed all of that to be true for years now, but still cannot get my family dr to budge on anything except Tylenol 3's, and that took a year to get out of her. It makes me so angry to know that these pills are doing so much damage long-term, but I have no other choice.....it's that or suffer. I also have a lot of problem with my stomach since they tried to practically force-feed me Nsaids when I first got diagnosed. Now my stomach can hardly tolerate anything since then, and there are days when I really need to take the T3's, but I know that no matter how much I eat with them, my stomach won't tolerate them.
I am a little disappointed in the Fibromyalgia specialist I saw in April, as he tried me on a drug for Parkinsons's that has been prescribed for Fibromyalgia, but I couldn't tolerate it, so had to stop taking it. He assured me that he would keep trying whatever was covered under my drug plan, but it has been about a month and he has not faxed anything else to my pharmacy yet. I won't be seeing him again until September, as he is a four hour drive from where I live, and I travel with my girlfriend who sees him once every six months. So, here I sit, left to suffer.....again....and getting really sick of this routine!
I just wish doctors would get educated on this whole pain med myth and start actually helping some of their patients with chronic pain. Here in Ontario, Canada, the police are a big part of the problem, too, as doctors have been charged and closed down their practice for prescribing narcotics to their chronic pain patients. It is a sad commentary when the "war on drugs" has to mean the people who need them can't get them.
Anyhow, I will call the specialist back again.....for the third time.....and see if I can get something done. I'm sure not willing to wait until September to try something else, as I have been suffering for four years now and it is getting impossible to live my life some days due to pain. Since I live alone, this can become quite a problem when I need to get out and get groceries or go shopping for anything. I am sick of being "put off" once again and left to suffer. It's not right and we should not have to put up with that.
Maybe if I get the nerve up, I could somehow leave a copy of this post on the dr's counter or something. I doubt it would change anything, though, and may strain our relationship even further if she thinks I'm trying to tell her something she should already know. They really don't like that, I've noticed, and don't take it well.
Ah well, maybe if I live long enough we will actually see this change here in Ontario. LOL
Gentle Hugs,Maggie
Maggie,
I've had fibromyalgia since around 1990 and honestly, I've never found anything that worked that well on the fibromyalgia pain. I have friends that swear by massage therapy and other friends who swear by opioids and other friends who swear by both, along with physical therapy. Personally, the only thing that has ever worked that well on me has been a hot tub and being at sea level. I found the higher the altitude, the worse the pain. Fortunately, after the first five years, the fibromyalgia settled down and only seems to attack when storm fronts are moving down from Canada (sweetie you are in the wrong place - LOL). Interestingly enough, the fibromyalgia even disappeared for a little while a few years ago then reappeared after a car accident. Today with all the other things wrong with me, fibromyalgia can just get in line.
Other than the American Pain Foundation, here are some Canadian websites I dug up for you:
http://www.canadianpaincoalition.ca/index.php/en/
http://www.mountsinai.on.ca/care/pain_management
http://www.canadianapm.com/memberlist.html
http://www.fm-cfs.ca/home.html
I took a pain management course being offered by my health insurer and one of the biggest things I learned was to become your own patient advocate. You have to take care of you because people are so busy, so stressed, so caught up financially that they tend to look for fast and flippant answers to complaints from us - the pain patient. I only have one friend that I discuss the pain with anymore and one relative. I think everyone else has compassion fatigue when it comes to me. My one friend keeps exclaiming that she doesn't know how I "keep from driving my car off a cliff." "Oh," I laugh, "all the pain patients make that threat, it has lost its impact." I complain to my psychologist regularly.
Truly my heart goes out to you. Can you print out information from the various websites, hand them over to your doctor and ask for a referral to a pain clinic (preferably the one at the university)? Or bring all the information to her reception area with a note asking for the referral. Or maybe order a copy of "The War on Pain and have it delivered to her office - they have good used ones at Amazon. I do know what you mean about trying to give some doctors information and they just get pissy. The good ones are usually so busy that they welcome the information - you've done the research for them! The pissy ones, I find a new doctor.
Patience is something that is in short supply in the pain patient.
Oh, and here is a blog that has great info on fibromyalgia: http://fibroresearch.blogspot.com/
Hugz to you,
Lilianna
