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Old 10-25-2007, 05:18 PM #1
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Default Question about narcotics

I just had an appointment with a new doctor -- an anesthesiologist in a pain clinic. I currently use a fentanyl patch 25 mcg., and have been doing so with good results for 6 years. (Before I had it, I thought about suicide every day because the pain was intolerable.) I added Lyrica when it came out and it has provided additional relief. But I definitely need the fentanyl patch, too. I have tried decreasing the fentanyl patch, but when I do I really suffer. Same for the Lyrica. The two together seem to work great. Well, this new doc is totally against any narcotic use for chronic pain, including the fentanyl. I respectfully asked her why this was, since it has been good to me for 6 years, and I am obvioulsy not addicted, have not had to advance the dosage, etc. She gave two reasons: one is that the body accomodates to it and dosages have to be increased, so it is not good for long term use. I am not sure how I feel about this, as Iam 59 years old and have not had to increase the dosage in 6 years, and have a good deal of room to go before I would top out on this drug. How long does she think I will live? Ha. Her second reason is that with prolonged use of a narcotic, a person will develop a condition where they will become increasingly sensitized to their pain and will be worse off. I am not sure what medical term she used for this. I have never heard this before. Does anyone know anything about this or have an opinion on what she said? She wants me to get a spinal cord stimulator and quit the fentanyl. I am happy to try this, and nothing would make me happier than to get off it --IF I can get pain relief without it. But it seems crazy to me to stop it and just sit around an suffer for the rest of my life if the stimulator doesn't work. This doctor makes me nervous, as she doesn't seem to have any negotiating room on the question of the fentanyl at all. She wants me off of it no matter what or how I feel pain wise. I really want to be responsible about medications, and not do anything to harm myself. But I know how severe my pain can be and that it can be intolerable, literally. It frightens me to think about it. I appreciate any input. Thanks, all.
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Old 10-25-2007, 05:39 PM #2
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Lightbulb my take is this:

If it works for you, and you are not increasing, then what the hay?

It looks to me like your doctor wants $$$ that she will make inserting the
stimulator. These do work, but...the leads come out and shift, and they require maintenance.

I would get another opinion. All of the states are moving toward better pain control for patients. If you are stable on your meds, there really is no indication for an invasive procedure, IMO.
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Old 10-25-2007, 07:39 PM #3
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Default

Sounds like a very common sense approach. Have you ever heard of this increased sensitivity thing? How come doctors don't seem to have the common sense that people on this forum do????? Thanks so much for your input.
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Old 10-26-2007, 03:20 AM #4
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Default Susan

About 6 years ago I had this older GP. He was about 70ish, and a wealth of knowledge. I could discuss anything with him,and he knew every specialist in the city by first name,and could get you in to see anyone you needed to within days. He also knew all top doctors in their area of expertise, and had an open mind to everything.With my back issues,he would insist that I not live in pain because I was raising a young child, and he would give me samples so I didn't have to pay. He also got me in to see the best ortho surgeon in town within 2 days. He never denied me anything and I knew that I could trust him and tell him what was going on.

One day he disappeared from the practice and I was handed over to one of the other GP's at the practice. When I first came down with PN, he did a mini clinical test on me and said I was fine,and sent me home. I then went into hospital.When I was released after 2 weeks I was given oxycontine,and this new GP was suppose to see me and refill my Rx. The neurologist at the hospital wrote him a letter recommending that I stay on oxycontine as the pain team has determined that I am in severe pain, and they are convinced it's the best thing for me at this time until my condition is established and another treatment is prescribed.

The GP refused to refill my Rx,even under the advice of a specialised pain team of 6 individual people who all agreed that I was having extreme pain. I asked him what he hought was wrong with me. He said, "I thought you probably have MS." I said," if you thought I had MS,then why the bloody heck did you send me home without a referal to a neurologist?"

He could not answer.I asked him why I can't have the Rx, and he also could not answer either. I then asked what has happened to my original GP,and he wouldn't tell me. I then said I wanted the reception to give me all my medical records, as I don't feel he knew enough about medicine to look after me.
I'll never forget that guy.What a bloody joke he was! I'd write his name down in this psot so everyone knows what a complete %@#hole he was when I was really ill. But he deserves no more mention.

I also told him that pain medicine is not just for people who are dying,but so people who can live their lives. What a bloody ego some of these guys have on them.

That's my opinion. My opinion is that some of these doctors know nothing about pain, and the psychology of pain. And it's always people who know nothing about what it actually feels like to have an illness like this that make the decisions for the rest of us!!

The problem is that the Aussie doctor is a dying breed.Maybe in country Victoria or New South Wales and such, you could find a real good old fashion GP that actually cared about your well being. But here in the city they are so desperate for doctors that anyone with a thermometer is setting up practice. Also from what I read our standards for doctors are way below America.

I also agree with Mrs. D. I would refuse to be tampered with. If you are doing well they should leave you alone.
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Old 10-26-2007, 07:25 AM #5
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Lightbulb Susan...

There is a poster on RSD forum getting a SCS...here is the thread:
http://neurotalk.psychcentral.com/sh...ad.php?t=30810

You might want to connect with her.

Here is a good article with data... 50-60% success rate does not impress me.
You can affect the leads if you fall, or get bumped hard.

http://www.spine-health.com/topics/s...inestim04.html
Pay attention to the fact on that website, that LASTING effects do not
occur for some. 1-2yrs is not a great thing to look forward to, if you are stable and effective on low dose fentanyl. JMO.
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Old 10-26-2007, 08:38 AM #6
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Dakota,

I have heard about the "sensitivity thing" although I would LOVE to know more about it. My Neurologist just changed my original diagnosis of small fiber PN to Central Pain Syndrome and in the same breath told me I had a hypersensitive CNS. So, I do wonder about this since I have been on either Vicodin or Norco for a LONG time although at low doses. I really think there is something to this; opiates being an antagonist or something to that affect. But...what is a person to do really? I know I can't take the AD's or the anti-convulsants so there isn't much choice other than the opiates or a benzo. Anyway, I pretty much agree with Mrs. D. although I don't think your doctor is about money. I have known a few people to go with an SCS but I am not to that point and am not so sure it would be effective. A few folks have had to have them removed. So, I guess I would say...stick with what works unless it became absolutely unbearable.
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Old 10-26-2007, 09:24 AM #7
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Default Spinal Cord Stimulators

I was one of the people who opted not to do this. I read this article and decided against it. Besides lots of people live with the Fentanyl patch.

http://backandneck.about.com/od/neur...stimprocon.htm

Be sure to read the other suggested readings at the bottom.

Billye
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Old 10-26-2007, 10:13 AM #8
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Lightbulb central pain syndrome...

The way it was explained in the pain seminar I attended was that overuse of
opiates leads to more pain for those with Central Pain Syndrome.
These drugs escalate the nerve loop in the brain, leading to needing more
drug..becoming a vicious cycle.

For others, the Dr. Clauw said for example, arthritis pain, inflammatory pain in the periphery, some NSAID or opiate may be used carefully.

Fentanyl itself is not a horrible choice, if you do not need to up the doses regularly. Constipation is the worst side effect to deal with daily. If you are not sedated by it, then that is not a factor.
Long term opioid use can suppress the pituitary axis, but reports on this differ.
Many studies were done on methadone ( and not fentanyl). It appears worse in men. Women past menopause don't have estrogen anyway.

How you broach this subject with your doctor, is 1/2 the battle. If you are not increasing, that would at least be a bargaining chip. As soon as you need to increase, I can see the doctor being resistant. You might be able to buy some time with her.
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Old 10-26-2007, 12:03 PM #9
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Hi. As you know I'm thinking of the spinal cord stimulator as well. I have also had the issue with docs not wanting to do the patch and when I was on vicadin pushed me off. It was explained to me that its cause these can create other problems such as liver and also are addictive. As for the sensitivity I was told this at Cleveland too.That when you use these meds it makes your brain more sensitive to pain and I guess in turn making you turn to more narcotics or the need for it with pain that would otherwise not need it. I may be confused a little too so bare with me. I know when I went to Ucla and he would only do the stimulator or nothing I had wondered if it was to make money. I was hoping not but was in the back of my mind. I'm wondering and I don't know for myself and am looking for more opinions cause my neuro thought this patch may be an option but is there issues like live. That was my concern when I was on vicadin. This pain is horrible but don't want other issues too. Ok good luck on your choice. Too bad if we got the stimulator we couldn't do it together. Like hospital buddies. I'm a little scared well more then a little. Many hugs
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Old 10-26-2007, 02:03 PM #10
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Wow, thanks guys, expecially for the links to other articles which I will read immediately! This is a wealth of information and also educated advice from people who are in my shoes, which is worth more than anything. I am fortunate in that my family doc will continue to give me scripts for fentanyl if I want to continue it. One thing that concerns me with these pain docs is that they don't want to prescribe narcotics, which we know a lot about, but they will load you up with Lyrica in high doses, and I don't think they know the long term effects of that at all. They are a little to eager to use people as guinea pigs, I think. And, of course, the spinal cord stimulator carries with it the risk of infection, as any procedure where something is introduced into the body does. Well, I am off to read those articles. And Daniella, I would LOVE to be your hospital buddy if we should both decide to try the stimulator! We are lucky to have these online buddies, too, aren't we?
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