hard to believe Web site about our pain also banned medications

[Diandra]

Hi Mark, I do understand how this mis-information is upsetting but there are so many websites out there spewing similar misinformation, that is one huge problem with the internet....people often wrongly assume, if it is on the internet, it must be fact. I do have to say, I think I am with Steve in that acetominaphen(sp?) damage needs to be more closely monitored. I think lots of people don't know how much they are taking and are just pummeling their livers. I also think people drink alcohol, take over the counter meds like cold medicines on top of taking hydrocodone and further tax their livers. Taking it off the market is a bit much but it is causing consumer awareness which I think is necessary. I take hydrocodone daily and have asked my doc to give me the one lowest in aceto which
is 10mg hydrocodone and 325mg acetominaphen. I know there are many hydrocodone combos where the dose of aceto is much higher.

I do want to re-iterate, at the risk of sounding like a broken record but, we ALL need to take milk thistle(silymarin) to help cleanse our livers if if we take drugs that affect our livers. Here is a website that explains it. Only registered and activated users can see links., Click Here To Register...
My brother, who has an alcohol problem, was told to stop drinking or he would kill himself because his liver was damaged. I got him taking milk thistle and his liver is almost back to normal(unfortunately he feels this now gives him the green light to drink again!? ) I take it daily and if I forget it or run out of it for days, I feel it.

Maybe medical MJ is the answer. Eva, you are lucky it is so available in CA but I do understand how irksome it is to have those who use it recreationally abuse the system.

Diandra

[Jo6]

I dare say not one of the people that do these studies have chronic pain. I would be happy to not have to take any meds., especially med. for pain.

I expect to take these the rest of my life and I am not happy about that, but can't do a thing about it. I take as little as I can get by with, but as we get older our meds. don't help the same as they did 20 years ago. I've had to increase several times the last few years. My PM Dr. has been very kind about it and it helps to have the Dr. in your corner.
Mark, MS Contin is one of the several that I take. I too would be in a world of hurt if it suddenly went away!! I spent 10 days in a hospital I had never been a patient at and none of my reg. Drs. were consulted. Mr. jo gave them all Drs. Names, tele #'s, how much I took and how I took them. They had all the info at their finger tips, but for whatever reason they chose to ignore all of that. info. I was taken to this hospital because it was closest to me and my BP was enough to give one a stroke.

My whole system was shutting down, I was totally at their mercy. I don't know how many days went by before I had a seizure that just about sent me on out of this world. My hubby kept telling them I did not need to go without some of the meds,but it fell on deaf ears. I have no idea what happened when I had the seizure or how many I had.

I just know I had a heart monitor on the whole 10 days and had IV's every where.It's been over a year now and I am just remembering many things I have known all my life.

Needless to say I started getting my reg. meds again. Ever since then I have been very concerned about suddenly not having some of the meds. They can call it what they want, addiction or dependence or whatever, all I know is I almost died.
I noticed one of the meds. that was mentioned in one of the article's had several "side effects", but it did not mention seizures & death. It was talking about not going off the meds. cold turkey, to do it under a Drs. care!! I asked myself WHY did they not have those 2 things FIRST!!?

Sorry, I still get very angry when I think of this. I read in the newspaper that many of the Drs. in and around that town were trying to cut out all long term pain meds. altogether.

Long story, but we have to be our own advacate, even so we may not be able to count on much. I do not oppose the MMJ, but in my state is not approved. I've wondered if my state did approve it, but I traveled to another state that didn't, what would happen to us?

old angry Jo

[Mark N]

Jo, what that hospital and those doctors did to you was barbaric and they should have to suffer the same way. Stories like your experience make me very thankful for the good doctors and hospital I have used. I believe you are right about these sites are written by people that aren't CPers. If they were they would show more understanding and knowledge about pain and medications. Like you and most of us, I would quit my meds right now if possible as I take as little as possible and deal with more pain than I should. I figure I will have to take them the rest of my life too.

Diandra, I disagree about controlling Tylenol and NSAIDs more but I can see better labeling and more education for the public to understand the dangers of OTC meds. I just believe in personal responsibility and I was always careful about how much I took before becoming a CPer. I think the danger is more about mixing the medications without people realizing how much they are taking IE you take 1200mg for a headache and then some cold medication that has another 600mg.

[alex44]

Hi All - Seems like everyone just wants to dance around this issue - Well, Lets all put our two cents in. We have people who A. Follow the law B. People that break the law by smoking. C. People who are lucky to live in an enlightened state where it is legel. Medical M, in my opinion, is here to stay. and Eva, just because something does not help you, would you deny another? Thank our government for the current mess on scrips - read the studies, do the research. Would you deny heart medicine if it was illegal? I do agree that it should be tightly controlled, but that is the governments fault. Here in AZ, it took a fight, but the votors WON - BUT - there are very tight regs in place about who can get it and your doc has to be ok with it. It is time this board has an honest discussion on this, It does relate to chronic pain, Even my shrink says it is good for it in SOME cases, it is not for everyone, but, Give us the votors the choice. let the board know your feelings, wheateher you smoke or not - i would not post wheather I am smoking, Big Goverment has a long nose. Bring on the discussion - this is not about politics - it wheather or not it helps, IYO, with pain.

[Diandra]

Hi Mark,
I understand your point and do agree about personal responsibility but I consider myself a fairly educated person. Yet, on my script, initially when I took it I had NO idea that APAP with my hydrocodone meant tylenol and when very ill with a flu once I shot down quite a bit of Nyquil and Alka Seltzer plus for days and days...having no idea what all that was doing to my liver. I was so sick I was not reading labels, just seeking relief. Honestly, I think a very difficult situation for chronic pain patients like us is getting a horrid flu where you are vomiting and ill....you don't know if the daily pain pill you took 10 minutes ago stayed down, you have tons of pain on top of the pain you already have and you have to calculate the tylenol in your daily pain meds and the OTC stuff you are taking to try and feel better. It is really an awful situation that think is very hard to manage and folks are going to make mistakes, some that could be deadly

There is a TV show, the name escapes me now, about a woman pathologist in Florida who figures out why folks died. Any alarming amount is from people like you and me who took an extra pill here or there, to control pain or anxiety or heart issues and died. She stated that people who take 5 or more medications daily were way more likely to die from an interaction or accidental overdose. I have to tell you that is very frightening to me. I am now scrupulously careful now with the meds I take. And like I said, I take Milk Thistle daily to help my liver.
Diandra

[Eva 14]

Hi Alex,
No, I wouldn't deny anyone any medicine that works for them. That's why I said that I believe that people should take whatever works for them. I am totally against the "War on Drugs", etc. I wouldn't deny anyone their meds, whether it's marijauna or whatever.

Take Care,
Eva

[SandraM]

Hi everyone, I believe that we all have to do what we feel we must to control our pain.

These are my issues: 1. Major Depression Disorder in which in the last few years I am having more symptoms of Bi-Polar, Anxiety , and Panic (since I was 5yrs old) 2 Scoliosis (now know this started when about 8yrs old)3 Degenerate Disk Disease 4. Osteoarthritis especially in the Spine from C1 to the very end. 5 Thoracic Fractures and Ruptured Disk 6 Arota Aneurysm 7 Chronic Fatigue 8 Hypercholestrerolemia. And I have had Cancer 2x.

Also a Daughter of US Army Vet (Deceased) - Atomic Bomb Testing Victim at Desert Rock by US Government

MMJ=I live in a state that does not allow MMJ. I had a doctor, outside of the medical environment, said that he wish his patients had the option of using MMJ. I am overweight and when I tried it all I could do was eat and eat. If someone could give me the answer to how not to get the munchies I would use MMJ as much as I needed.

It seems my doctors are no longer up to the challenge of helping me. I have tried to get into 2 pain doctors but there is such a long waiting list. So, in the last year, I just can't go to the doctors. I know it is useless. Nothing is done. It is like I speak to the air. I hope you all have found better care than I have.

[Mark N]

Sandra, it is so disheartening to hear stories like your story as there are doctors out there that will help those of us with CP. I have been very fortunate to have doctors that have all been willing to help me but my current doctor is in his 70s so I will have to find another doctor in the near future and I am concerned about finding one that will take the same approach my current doctor does. I already know of a couple of doctors that won't prescribe my medications to me so I hope the others in town are more willing to continue the care I have had the past 11 years.

I would encourage you to keep looking for a doctor that will treat your diseases but understand you may not have too many options in your area. I hope you find a doctor because no one should deal with pain without some control over it.

[Eva 14]

Sandra,

Please don't give up the search for a good pain doctor, even if you have to put your name on a waiting list. NO ONE should have to suffer. I also have a lot of health prolems, but it wasn't until I FINALLY saw a pain management doctor that my pain was adequately treated. I saw several neuros, etc. None of them wanted to take the "risk" to help me, even though my long-time neuro TOLD me, "Well, you've tried everything else and opiates are the only thing that helps you". So he admitted that ONLY opiates help me, but still never once referred me to a pain doctor.

The worst part was that even though my neuro knew I suffered excruciating pain for months on end, he only prescribed a very limited amount of pain meds. It my pain lasted longer than the meds, tough luck for me. I would interrmittently go into several months of severe pain. My neuro would prescribe what is generally regarded as a 1 month supply of pain meds and would somehow expect that to last me at least 6 months. When I was in one of my horrible "pain cycles", I would stretch the 1 month supply of pain meds out to 2 months, and ended up suffering terribly. But if I STILL needed meds after the 2nd script? Forget it! My neuro would then threaten to drop me. After I'd been seeing him for 15 YEARS, not to mention.

I'm in enough pain without all of this doctor drama. I truly thank God that I found a wonderful pain doctor who treats me nicely and gives me what I need to function at a basic level. I shudder to think where I'd be if I hadn't found my wonderful PM.

So there ARE some good doctors out there; you just have to search really hard to find them. You could even try searching the Internet for possible doctors. Again, you should NOT have to suffer with untreated pain. Best of luck to you.

Eva

[Kathi49]

Ditto on the pain doc Eva! I love my own spinal pain management doc! :) I didn't have a problem with my Neurosurgeon or my Neurologist at all in regards to medications. In fact, it was the opposite with me. It was my pain doc that eventually referred me to the NS and then later, back to my PM.

Okay, to MM. I don't have a problem with legalizing it nor do I have a moral issue with it. If it helps someone that is between they and their docs. But personally, I probably wouldn't use it unless I was on my way out. I am just really not that much up on it to begin with. But, no, I don't think so, not at this stage of the game. I have a lot of room to go up on what I am already taking so for now, I prefer to keep it that way.

[Mark N]

Diandra, I agree fully that it is important to know what is in our medications and to be careful about the amount we are ingesting. I guess I am leery of the gov't controlling any more of our choices but as you point out it isn't an easy situation for people to deal with. The show you watched is an example of why I don't take as much medication as I could to control my pain and to never take more than is prescribed as I would rather be in pain than have my family find me dead as a result of an extra pill. Maybe people here have a greater respect for our meds as I know I am very careful about my doses and how much I am taking. I don't see it as "candy" where more will make me feel better but as serious medication I have to respect.

[alex44]

Mark, et al: I love the interaction we are getting. Ths subject about MMJ has been n the closet too long. No need to out oneself - ancedotal evidance can be used, as can research from the web. I am not saying it is for everyone, but EVERYONE should have the freedom of choice.
Blessings
Alex44
Skypilot

[Boxerlover]

I know I have brought this up before but we all need to be prepared about the government REM program. It is now called the TERF REM program and it started with the newer trans-mucosal fentanyl, Onsolis, Abstram and one other. Just this month they added the Actiq and Fentora. From what I have read, they want to add all schedule II meds. It works where the doc must get extra training on prescribing these kinds of meds. Then the doc registers the patient and you are given literature on how to take and dispose of yours meds as well as all the risk factors. Then only pharmacies that have registered and had their pharmacists go get extra training on this can dispense the meds.

I was worried at first thinking this was going to be a cluster f***, but in a way I feel better knowing that I am registered. I had some questions and called the number and she found me on the data base and answered my questions. It will definitely stop a lot of addicts from getting the meds and it will stop docs who are not in pain management from improper prescribing. I cannot tell you how many people I know who were prescribed one of these for either post-operative pain(and it says in big bold letter NOT FOR POST OPERATIVE PAIN). And I heard it was prescribed to an opiate naive person who broke their arm, and not a bad break at that. So eventually if they add all schedule II it will help with abuse, not all but a great deal. The only problem is the government involvement with us being in data bases. But most states are going with a data base anyway so what's being on a national one. I don't know how I feel about it to be honest. At first I was totally against it but now I actually think it may be a good idea.

[Mark N]

Melissa, as they say the devil is in the details. This program can be used to educated everyone about these medications we use or they can be used to target us and deny some people medication they need. I hope it continues to be a program to educate people because our medication is nothing to fool around with and too many dr and dentist are prescribing the wrong medication for acute pain that is temporary. The problem with a gov't program is it can change at any time so that regulations work against us instead of helping us.

[alex44]

I cannot remain silent

I am too disgusted with the gov't to answer this right now as I just did my B/P and it s not good,
Blessings to all
Alex44 (skypilot)