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Why does CDC say no narcotics for pain?

Discussion in 'General Treatment' started by CJB, Aug 10, 2012.

  1. MishMash

    MishMash *****

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    The CDC is full of baloney. Ignore them. I had a doc who would always refer to the "physician's desk reference" when I asked for benzodiazopines. He was an idiot. But even he didn't care what the CDC said about CFS. They are completely irrelevant to everbody, except for maybe to other useless medical bureaucrats.

    Find a doc who believes in you. Establish a good relationship. Use your personal charms and wit. Stay with him a couple of years. Try all the useless junk he is going to push at you at first. Later ask him "as a last resort" that you need to try pain meds or whatever controlled substance. If he knows you, and thinks he can trust you, most docs will give you what you need. Good luck. Some day hopefully, the research will progress, and we won't have to play stupid games to get treatment.
     
  2. Hope123

    Hope123 Senior Member

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    The Primer lists narcotics under pain medications to consider but mentioned they "should be avoided if possible." That's fine by me - if there are other more effective pain meds with less side effects, those should be tried first. But sometimes, narcotics are safer and more effective than other options depending on the person and their other medical issues. I don't think the CDC really grasps the different types and severity of pain people might have and thus that's why they write what they write. I have actually written them about this in the past and would encourage others to bring it up to them as well.

    I think that the US "war on drugs" is not entirely scientifically directed and very much politically influenced. While there are issues with prescription pain med abuse that do need to be addressed, the majority of people with pain issues are not abusing their meds -- they need them to have some semblance of function. Such type actions by gov't could exacerbate undertreatment of pain.
     
  3. CJB

    CJB Senior Member

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    If I recall correctly, and that's a big if, it was explained at the last CFSAC meeting that material on the website had to be generated or vetted by the government. I think that was one of the problems with just adopting the Primer. I have been watching the vids of the last meeting and I'll try to pay attention to that discussion.

    I'm not advocating for or against narcotics, it just looked very odd that narcotics were specifically recommended against and I wondered what information or research they relied on to make that recommendation. It seems utterly arbitrary and subtly suggesting, as WillowJ said, that this isn't really a serious illness. Even the recommendation,"it is not beneficial to buy trendy, expensive vitamins that have no effect on fatigue or pain." is weird.
     
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  4. taniaaust1

    taniaaust1

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    I dont know their rationale of it but I agree "partly" with what they've said as I think Narcotics should be avoided in this illness if at all possible (of cause some who have this illness may need them due to nothing else helping their pain).

    The reasons why I believe they should be avoided if possible is due to the chronic nature of our pain hence high risk of tollerance. .. and secondly.. often there is other things which can be tried which could help (eg FM drugs if the pain is FM) or even cutting back on activities may lessen the need for full time Narcotic use.

    Ive seen a few who take Narcotics with ME/CFS.. they just then do more and their whole health suffers more and things just end up getting to the level, in which they have severe pain even with the Narcotic and are far worst then they were before as now they have a ton more symptoms then they did before.

    I think that sentence on narcotics should be worded better so not like a blanket ban on Narcotics to all with ME/CFS as a few do need them.
    I have no issues to that part on sleep and think that is good advice.. as they say "do not ROUTINELY use sleep medications" . I'd take that to mean that its just saying that sleep medicines are not something which anyone who has ME/CFS and sleep issues should be put onto. They always should only be used (due to the possibility of addiction) after everything else has been tried. The above statement didnt at all dismiss them for all and is supportive for them if the history calls for them.

    Half of this part, really should be removed as I dont think there has been any research at all showing that doing puzzles, word games helps with our focus so why are they sprouting off that crap.
    Those who have ME/CFS.. focus tends to WORSEN with any excertion and doing puzzles and working the mind.. can be very tiring and may even trigger off other ME/CFS symptoms.
     
    Calathea likes this.
  5. urbantravels

    urbantravels disjecta membra

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    As my biochemist relative likes to say, pain is a disease in its own right.

    It's morally indefensible that chronic pain should be so significantly undertreated in comparison to acute pain. Get a tooth pulled, get a scrip for a couple of days of the good stuff, and you'll probably have a couple left over when you stop needing it.

    OTOH, suffer from grinding, debilitating, torturous pain for years on end, and you're lucky to get anything that looks even a little bit like knowledgeable pain management. You're lucky not to get the side-eye because maybe you're a drug-seeker, or have your pain undertreated, inappropriately treated, or not treated at all because many providers have the mindset that pain is a symptom of something else that is the REAL problem.

    Moralizing attitudes about certain drugs are certainly part of the problem, but they aren't the whole story.

    The Institutes of Medicine had this to say last year when they issued a major report, "Relieving Pain in America":

    http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=13172


     
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  6. alex3619

    alex3619 Senior Member

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    On issues of non-approval of drugs, psychobabble etc., I posted a new blog: Here we go round the Merry-go-round. This is about the Helicobacter pylori story and how history is repeating itself, repeating itself, repeating ...

    I put a copy of this notice in a Rituximab thread as well.
     
  7. Firestormm

    Firestormm Guest

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    Of course the other thing to consider here is simply that they do not feel enough or any research has clearly indicated that the wholesale use of narcotics is clinically beneficial for people with CFS/ME.

    And that they can't I suppose provide guidance on every class of drug. Rather - if it's anything like in the UK - such prescription decisions are left to the examining doctor.

    My own prescription of 'narcotics' came after 12 or so years of suffering without and following a major relapse that included experiencing a large increase in general pain. The Neurontin was for more specific pain. Both were things that have been helped by their prescribing, but I went through one hell of a lot of alternate prescriptions and non-prescriptive 'trendy and expensive' well marketed 'stuff' to get there ;)
     
  8. liquid sky

    liquid sky Senior Member

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    Treatment of pain has gone backwards in the last century. One used to be able to get Laudanum over the counter at any pharmacy. It contained all the opiate alkaloids making it a potent pain reliever. Most people had it in their medicine cabinet.

    I read a book called The White Castle once and the plantation ladies in it would frequently use Laudanun for pain or sleep issues. That is where I first came across it.

    I do not believe in making plants illegal, any of them. I think they have many beneficial uses. The war on drugs is just a ruse to give all profits to the drug companies and restrict people's freedom to make their own choices.

    It makes no sense to treat acute pain that resolves and refuse to treat chronic pain that tortures for decades. I absolutely believe any person/doctor has the right to refuse/accept pain control for themselves only.

    http://en.wikipedia.org/wiki/Laudanum
     
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  9. WillowJ

    WillowJ Senior Member

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    OTC use isn't safe, as there can be severe consequences to incorrect dosing.
     
  10. Hope123

    Hope123 Senior Member

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    I'm not picking on you Tania, just trying to educate people who may come across this thread!

    With the first part, taking a pain medication (opioids included) chronically does not result in addiction in the majority of people, especially if they have no history of substance abuse. People develop tolerance/ dependence, which is a biological phenomena, not addiction, which is not only biological but psychological, social, etc.. When I used to treat people, I would have to explain this over and over again because of these fears from them, their family members, and physicians not familiar with pain meds. This is a quick Google but you can read about the difference here as well as about "psuedoaddiction":

    http://www.healthcentral.com/chronic-pain/coping-279488-5.html

    In terms of sleep meds, the various materials put out by ME/CFS specialists recognize that many of us will require sleep meds regularly to sleep. People can try and continue behavioral measures (which have no harm to them) but for many CFS patients, their sleep issues are not behaviorally related and some (like me) had no issues with sleep prior to getting hit with CFS. Also, the issues regarding tolerance vs. addiction apply here as well to sleep medications. Benzos are no longer the first line sleep med suggested and haven''t been for at least the last 15 years. This is not only because of the high dependence potential but also because they cause rebound insomnia and change sleep architecture. Other sleep meds were developed instead to replace benzos and do not have the same or same degree of problems. The issue with sleep meds is that some have not been studied long-term so there is always a concern if people are using them daily for years. [But this should be tempered with the fact that many of the meds used in medicine don't have long-term/ decades of safety data either.]

    [For sleep, I use trazodone which is relatively effective/ safe for me and has the benefit of being around for decades; I used it in my patients and my doc independently suggested it to me since we both agree treating sleep is important. It's an old drug that you won't see advertised since it's dirt cheap; however, it doesn't work for everyone.]

    Same as the pain issue, this is something the CDC can improve on because the statements they make do not have these subtleties although it doesn't take so many more sentences to explain to people the rationale.
     
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  11. taniaaust1

    taniaaust1

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    Thanks. I'll add the word "tollerance" in my post as that was more so what I meant .. a need to increase the drugs more and more due to the biological phenomena. Hence due to drug tollerance etc.. all these things should be very carefully prescribed and only being taken where necessarily.

    Please can you tell me the drugs you are refering to here? I ended up having to take Temazepam at times for sleep.. doctors didnt seem to have all that many different options. So Im curious what drugs you are refering to which were developed to replace benzos for sleep issues?

    Me having to take Temazepam for sleep wasnt something which was done "routinely". It was done very cautiously only after trying everything else and with the specialist putting much thought into my sleep issues. A specialist who is handing drugs like this out like lollies to everyone.. probably would be best to be avoided.
     
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  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    z-drugs like zolpidem or zopiclone,also known as stilnox and imovane in australia.
     
  13. taniaaust1

    taniaaust1

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    thanks heapsreal. I really wonder why no doctors suggested those to me..
     
  14. Calathea

    Calathea Darkness therapy

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    Z-drugs also cause massive problems with dependence/tolerance, that's probably why. I think they also have a higher risk of alarming side effects. Google the side-effects of Ambien (Zolpidem/Stilnoct), for instance, which include hallucinations as well as various types of behaviour while asleep (e.g. eating, driving). Anti-epileptics such as gabapentin/Neurontin may help with sleep, but their side-effect profile is pretty hefty and they can be absolutely hellish to come off even with a taper, as I discovered this year. I think first-generation antihistamines are relatively safe in this respect, they're sometimes used for sleep. Anecdotally, I'm being tried on various antihistamines at the moment, and while I feel weird on some of them, it's not at really bad levels, and I don't seem to have trouble when I stop them.

    Urbantravels - I've known people have far more trouble getting pain meds for acute use than I have for repeated medium-term use, actually. My mother had eye surgery a few years ago. The eye specialist had refused to discuss the horrendous eye pain she was in, he just kept on telling her that his surgery would fix it. When he operated on the first eye, he told her a very complicated drug regime orally, shortly after the surgery when she was woozy and in no fit state to take it in. It turned out that he'd undermedicated her for pain. Eye pain, I should mention, can be one of the worst types of pain. So when the time came for him to operate on the other eye, she very sensibly asked whether he could give her the medication regime in writing this time, at a more sensible point where she could look at it clearly, and also mentioned that she'd been in a lot of pain despite the meds for the previous op. He promptly threw a hissyfit, threatened not to do the operation, and wrote to her GP accusing her of drug-seeking. I can't remember how she sorted this out, but she did have the op in the end. After a while, we realised that her eye pain was still pretty bad. The eye hospital did not want to know. So I think some of the problem may be that certain departments absolutely do not want to admit that their patients have serious pain issues, let alone to deal with them.

    Similarly, when I had acute calcific tendinitis, which even doctors call "excruciating" (and you know how they underplay pain), I spent two days ringing NHS Direct and being told, "Ooh, you probably shouldn't take that much co-codamol, dear, that's quite a strong drug," before I finally got someone who had the sense to realise that the pain I was reporting was extreme, and told me to go straight to hospital. And even then I was very lucky to be given pain meds while I was waiting (I'd originally gone to the out-of-hours service and ended up in A&E for 8.5 hours), got a diagnosis, didn't get the treatment they recommended due to miscommunications, did at least get some pain meds (co-codamol and tramadol - I was stoned off my face for a month, which was better than being in that horrendous pain), and had fairly lousy handling of the side-effects.

    I didn't get dependency problems that time when I was on the stuff for a month, but the next time I had a bout of calcific tendinitis and was on co-codamol for a month, I had about a week of withdrawal when I came off it. Not too bad as such things go, jittery and insomnia. The GP I spoke to told me that co-codamol doesn't cause dependency, which is utter nonsense, it's an opioid for heaven's sake. Either they're handing the potentially dependency-causing drugs out like candy, or they won't let anyone at all near them. Good management of risky drugs like this is far too rare.

    By the way, there is a huge number of people who are prescribed benzos, Z-drugs, opioids or similar for purely physical issues (pain, sleep etc.) who end up not just physically dependent, which can be horrendous enough, but psychologically addicted too.
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    By the way, there is a huge number of people who are prescribed benzos, Z-drugs, opioids or similar for purely physical issues (pain, sleep etc.) who end up not just physically dependent, which can be horrendous enough, but psychologically addicted too.[/quote]

    i dont understand this paragraph? do we just not treat people because a drug has potential for dependency. Dependency and having reduced symptoms is better then no treatment and having worse symptoms for the rest of ones life??
     
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  16. urbantravels

    urbantravels disjecta membra

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    Pretty much. Patients buy into this too, unfortunately. We have an irrational, excessive fear of addiction, as individuals and as a society, so the society creates laws and policies that make it harder and harder to get pain treated properly.

    We also have a fear of "dependency" that often extends to any drug. Just as the expectation is pushed on us that our chronic illness should be "temporary" and if it isn't, we're somehow refusing to get well...we push the expectation on ourselves that any medication we take for symptom relief should also be "temporary," not something we might need to take indefinitely...and it's somehow our fault if we're not clever enough to fix the problem some other way.
     
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  17. WillowJ

    WillowJ Senior Member

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    by "routinely" they don't mean "to most everyone who walks in the door". They mean, "as a long-term solution" (for any ME or CFS patient whatsoever).

    *to all*

    Whether and what meds to use and whether to use long-term or short-term, is an individual decision to be made with one's own doctor (supposing one has a helpful doctor) on the basis of one's own case. Everyone is different; people have different drug reactions and intolerances (and there are only a few which are common among us, such as bad reaction to SSRIs), and different priorities and preferences for treatment.

    There are risks to not treating pain and sleep, also, which can be very severe. Chronic pain can cause brain damage. A lot of cellular repair, memory solidification, etc. goes on during sleep, so there are consequenses (including shortened life) to not getting good sleep. Medication doesn't necessarily provide the best sleep, but it may well provide an improvement over not having a treatment.

    Of course, treating pain, inflammation, muscle cramps, etc. may improve sleep without using actual sleep meds, but that's where the individual consideration comes in.
     
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  18. Calathea

    Calathea Darkness therapy

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    The problem with dependency is that the drug stops working, so the dose has to be raised, and then it stops working again, the dose gets raised again, rinse and repeat. You end up with a patient who is on a dangerously high dose, is no longer getting any benefit from it, and will go through an absolutely hellish time withdrawing (and also if they don't withdraw). They end up hugely worse off than they were before they started the drug, often in just as much pain while they're still on the drug, and may be in more pain while they're withdrawing. This is a serious problem and absolutely not one to be brushed aside as a myth. It's well-documented and it is precisely why doctors are reluctant to use certain drugs long-term. Sauntering blithely in and saying, "It's not true that these drugs cause addiction, I'll take them every day if I feel I need to!" is dangerous.

    And yes, I'm perfectly aware of the problems caused by pain, insomnia and anxiety. I'm taking that into consideration.
     
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  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think a smart doc or patient could work around tolerence with drug holidays or rotating between different meds etc to avoid just continually pushing up the doses. This is what i have done with sleep meds and have kept the dosing low. I agree with you in that if they keep pushing up the doses then the side effects can sometimes be worse then what they are treating.
     
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  20. WillowJ

    WillowJ Senior Member

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    I agree with heaps.

    I haven't personally tried any of the meds under discussion here. However I do know of people who have successfully used the same dose over long periods of time and it's continued to be effective. But I agree it's smart to use strategies like heaps mentioned to minimize the risks (and then abandon a drug if one has tried these sorts of things and it's not working--I'm not advocating for making people worse here, nor am I trying to minimize the risks of things going wrong; I jsut think a health authority shouldn't make blanket proscriptions rather than having the patient and physician use their heads and think through everything carefully)

    There are other classes of medicines, for instance epilepsy medicine, which can also cause tolerance, and some of those one cannot skip doses and because the doses may have to be titrated up and down, it may more difficult to rotate. Although managing epilepsy can be very difficult, they manage to attempt this without, I believe, deciding the treatments are actually evil in and of themselves.

    I think there is more hype surrounding treating pain and sleep in general and ME/CFS in particular because these conditions are not taken seriously enough. And I think the hype distracts from finding good strategies for treating patients.
     
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