Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Opioids in the treatment of ME/CFS patients

Discussion in 'General ME/CFS Discussion' started by Sushi, Jun 27, 2016.

  1. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,327
    Likes:
    21,473
    Albuquerque
    I'm starting this thread as a place to continue a discussion that came up in one of the In Memory Of threads. Here we can discuss this question without diverting from the focus from remembering specific individuals we have lost.

    Apparently the "medical climate" on pain control is changing and that could have implications for us as patients. Here is a link to the Clinical Protocol: Opioid Taper & Discontinuation used by a clinic in Vancouver.
     
    belize44, MEMum, Effi and 1 other person like this.
  2. Groggy Doggy

    Groggy Doggy Senior Member

    Messages:
    1,127
    Likes:
    4,132
    Following the many years we were told opioids were safe and non-addictive, we are now facing a swing in the other direction.

    With the recent push to get patients off of opiods, I am wondering if there is a numerical target to reach...like....

    'x% of reduction of opiod use' = 'someone gets a big bonus'​
     
  3. Mary

    Mary Senior Member

    Messages:
    2,729
    Likes:
    6,101
    Southern California
    I recently read a book called Dreamland, by L.A. Times reporter Sam Quinones, about the opiate/heroin addiction epidemic in the U.S. It was pretty harrowing but a fascinating read too. It reads like a crime novel, but it's nonfiction of course. A large part (I don't know the percentage) of the opiate/heroin addiction epidemic stems from oxycontin. It can be very addicting, though doctors were told otherwise. In combination with the sudden availability of cheap, very potent black tar heroin from Mexico, it was a perfect storm. People who got hooked on oxy, when they could no longer get it, were ripe for heroin.

    And politicians who were formerly very strong "law and order" people, against spending money on rehab, just lock the addicts up, suddenly are talking about rehab and other things because their wives and children and friends are becoming heroin addicts. It is really too bad that humans seem to be wired that way, to not care unless something happens directly to them.

    In any event - I'm digressing. I can't weigh in on the issue of pain meds per se because I don't deal with pain. But I highly recommend this book.
     
    jeff_w and MEMum like this.
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,378
    Likes:
    24,193
    USA
    I wanted to start a thread on this, or add to an existing thread, in which people were talking about how opiates helped them significantly with neurological symptoms or even made them feel normal. The thread is this one:

    http://forums.phoenixrising.me/inde...ome-of-my-neurological-me-cfs-symptoms.22751/

    In my own case, I take small amount of pain pill each month for severe period cramps or as needed for severe neck and arm pain from a prior injury. I've always had severe cramps which I now know is very common in MCAS (and suspect I've had subclinical MCAS all my life.)

    What I noticed is that even 1/2 pill dramatically improves my dyspnea (shortness of breath) which is my #1 issue which stops me from having any kind of QOL. It does not improve it to the level where I can walk without my wheelchair but it makes it easier to transfer from chair to bed, table, toilet, etc, and makes it easier to eat, talk, shower, etc, without becoming completely breathless with chest pain.

    I thought I had discovered something new and unknown to science LOL until I Googled it and quickly found links to the American Thoracic Society and even the Mayo Clinic which explain the mechanism of how opiods help with breathing problems even in the absence of pain. It was fascinating to read although I didn't quite understand if someone falls into the group in which it helps with breathing if that sheds any light re: diagnosis vs. could they help anyone with breathing problems of any cause? Am still trying to gather more info on this and have been discussing it with others via PM.

    I know this can be a controversial topic and was hesitant to post anything but for someone like me who does better with small doses of meds and no history of addiction, it is a relief to know there is something that can improve my breathing, similar to knowing I have allergy/rescue meds for an MCAS crisis or God forbid in anaphylaxis to know I have an EpiPen.

    For me there is no judgement re: opiods, but I would like to learn more about them and understand them better. Having worked very early in my career for a hospice, patients were dying and in intractable pain, yet doctors were hesitant to prescribe for fear of "addiction" and sometimes the patient died a few days later but continued to suffer unnecessarily until their death without any pain relief which was criminal IMO.

    The policy of that Canadian Clinic scares me b/c it seems to be a "One size fits all" policy with no account of the individual patients history or needs.
     
    Izola, MEMum, AndyPandy and 5 others like this.
  5. alex3619

    alex3619 Senior Member

    Messages:
    12,480
    Likes:
    35,011
    Logan, Queensland, Australia
    Fun fact. Heroin was marketed in the 19th century as a safe and non-addictive alternative to morphine.
     
  6. alex3619

    alex3619 Senior Member

    Messages:
    12,480
    Likes:
    35,011
    Logan, Queensland, Australia
    What will happen with severe pain syndromes, improperly treated, is that more and more will turn to alcohol and street drugs, and even suicide.

    Yet there is no doubt that opiates are inadequate for long term pain management, for many reasons. Yet without viable alternatives what other choice is there? It does not escape me that the most effective fibro drug yet is medical marijuana, according to patient surveys. Its better than the approved drugs.

    Chronic opiate use is not good. Neither is chronic pain. We need the science to come first before we have altenratives to offer.

    One of the reasons we have an addiction culture, in my view, is that we are in a nearly century long failed experiment to try to ban a lot of these things, rather than regulate them. The problem has only gotten worse, and drug cartels now rival national governments in some countries. Or, as in Afghanistan, its the primary cash crop (opium poppies).
     
    RYO, belize44, Justin30 and 5 others like this.
  7. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,089
    This is a predicament. There are truly no good alternatives. To judge by newspapers reporting it would seem that the opioid addiction is from people who take too much for too long for an acute pain episode then just don't stop taking them.

    I just live with a certain amount of pain--if I get a flare I take tramadol. This is problematic because my Dr can only prescribe one month at a time and I can't see him often so I get a 75mg Rx and split them--and use very judiciously.

    Often I have trouble sleeping from pain and I've gotten creative about OTC drugs. I'll use a mix and match approach with muscle relaxants, ativan, aleve even antihistamines seem to help both itching and as sleep aid. But I don't do all at once of course.

    I do wish there would be some more/better research into this area of pain etiology and relief. I'd really prefer something that is less addictive and abusive of the body to use in the long term. I can barely remember even what it's like not to feel pain. I'm sure I have plenty of company.

    Lacking any better choices right now I really wish there was more latitude in using them. This would require a more sensitive and specific approach that takes all types of use into account.
     
    MEMum likes this.
  8. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,465
    If an adult wants access to a legal opiod for her use and strictly her use, she should have it. The ramifications of that action will have to be assumed by the user, but that's part of life's decisions that holds true for all her choices and decisions.

    Obviously, this is more straightforward than the issue of abx stewardship.
     
    Last edited: Jun 27, 2016
  9. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,280
    For the shear degree of suffering this patient community experiences.

    With so little research so much pain why is choice left at the hands of Drs that will not in ways neccessary try to help us?

    This misuse of pain medication is due do to the sheer amount of opiod pain medication that has made its way onto the streets.

    I just dont know what to say anymore.
     
    bspg, belize44 and MEMum like this.
  10. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,136
    Likes:
    3,404
    Vancouver, British Columbia
    There was something on the news last month about narcotics actually increasing pain over time. For short term use they worked well, but over the long term they increased pain and no longer functioned at reducing pain levels. I'll see if I can find the story.
     
    RYO likes this.
  11. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,280
    I believe like any drug tolerance can be built.
     
    alex3619 likes this.
  12. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,280
    This comes from CFS a Second Addition book by Verillo who cites most of the well known researchers and doctors dealing with the disease.

    If you have ME Utram is toughted ad similar to Effexor/Venafalaxin and SSRI. Several clinicians point out how these can have very bad effects on ME patients.

    Venefalaxin was the worst drug a ever put in my body and this drug I honestly thought I was going to die from taking. This just my personal experience but if it so similar to Tramadol this poses a risk in my eyes although I am not a Dr.

    The book states Tramadol/Ultram as being an addictive substance.

    ULTRAM DESCRIPTION. Ultram (tramadol) is a centrally acting synthetic opioid analgesic used for severe pain.

    BACKGROUND. Tramadol was developed in the 1970s by the German company Grunenthal GmbH. Somewhat like narcotics, it is an opioid agonist, releasing serotonin and inhibiting the uptake of norepinephrine. Because tramadol is structurally similar to Effexor, it has been proposed as a treatment for mood disorders, phobias and anxiety, although physicians have not endorsed it for these uses.

    USES IN CFS/ ME. Ultram has been prescribed to treat muscle and fibromyalgia-type pain that has been resistant to other medications.

    PROS. Some patients report that Ultram is the most effective medication for pain and that it also helps relieve insomnia and fatigue. Ultram acts quickly and does not seem to produce as many side effects as other pain medications.

    CONS. Ultram is addictive. Withdrawal symptoms from extended use are more severe than for other opioids, and last for a longer period of time. This drug is contraindicated in patients with seizure disorders and those taking monoamine oxidase inhibitors (MAOIs) or other antidepressants.

    CONS make this just as serious as opiods as "Withdrawal symptoms from extended use are more severe than for other opioids."

    I have never used this drug and will never use this drug.

    I am not a Doctor just sharing what research I found.
     
    belize44 likes this.
  13. kangaSue

    kangaSue Senior Member

    Messages:
    838
    Likes:
    912
    Brisbane, Australia
    I waited 8 months to get an appointment in one of our public hospital Pain Clinics. The "pain specialist" I saw obviously came from a psyche background as he was more intent on analysing my social situation than my medical condition but when I asked about dextroamphetamine as a means of pain relief (which other specialists had advised me was the domain of the Pain Clinic to decide on) I was rather stunned with his answer, "We don't do pain relief meds here, we are about pain management", at which point he offered to sign me up to their mindfullness program.
    I've never swore at a doctor before, now I've gone and blotted my record.

    http://www.ncbi.nlm.nih.gov/pubmed/21835553
    Hypofunction of the sympathetic nervous system is an etiologic factor for a wide variety of chronic treatment-refractory pathologic disorders which all respond to therapy with sympathomimetic amines.
     
    pattismith, belize44 and Izola like this.
  14. beaker

    beaker ME/cfs 1986

    Messages:
    773
    Likes:
    1,839
    USA
    There is a huge difference between addiction and habituation. I think it is important to make sure that is understood in any discussion of any long term medication use.

    As for myself, I couldn't do anything w/o pain meds. Even then, what I take, only takes the edge off and makes it so I am not just curled in fetal position moaning. I keep same dose for many years. I work closely with my rheumy.

    I worry with the backlash, that people who really need relief will be denied.
     
    bspg, belize44, Izola and 5 others like this.
  15. panckage

    panckage Senior Member

    Messages:
    627
    Likes:
    740
    Vancouver, BC
    This stinks of overreaction. Give everyone opiates, tell them they aren't addictive (like what happened to tramadol), have people suffer from withdrawal and addiction, things they were told wouldn't happen and were never counseled how to deal with.

    Now anyone who uses opiates is evil and must stop their use. It's all the reefer madness crap again.

    HARM REDUCTION. Fuck you DEA and all the harm you have caused. I don't understand how an organization can lie and literally destroy countries and it be legal. It's sickening

    OK rant over :rofl:

    Overall I didn't find the article too bad. Opiods aren't a good choice for daily long term use. It would be nice if they mentioned the alternative though. They never mention a better alternative atove

    There was some strange things though like this:
    For me tramadol makes positive change for every one of the things listed including constipation. With IBS-D the constipation is welcome and actually makes bowel movements closer to normal

    I have found taking an opioid every 3 days is the best compromise for me. And since tramadol 100mg ER works best for me it looks like they would begrudgingly accept it

    What really bothers me about this clinic is that they only seem to care about 'evidence based' medicine, problem is there isnt any so its like the whole purpose is to take away the littl treatments we have then just throw us back in the ocean...
     
    bspg, belize44, Izola and 2 others like this.
  16. Michelle

    Michelle Decennial ME/CFS patient

    Messages:
    172
    Likes:
    393
    Portland, OR
    @Gingergrrl beat me to linking to the lengthy thread on opioids and their effectiveness for many PWME — it's well worth a read, though I've always been surprised at how little discussion there is in that thread on the role of vasodilation.

    I'm among those who have found a curious improvement in my global ME/CFS symptoms 2-4 days after opioid use, in addition to pain relief. At the moment, thanks to the current media hysteria and typical CDC mismanagement of it, my doctor and I have felt compelled to begin tapering my dose in advance of my health insurance potentially forcing us to do so on a much more abrupt time-table, with far more potential suffering. I've been surprised to find that my pain level has not especially increased as it did when I requested a decline in my dose 3 years ago, but my ME/CFS symptoms (sensory sensitivities, profound weakness, muscle twitching/jerking, "lead legs," flu-like feeling) sky-rocketed 3 days after reducing my dose. I have a supplement called "Nitric Balance" which is mostly herbal vasodilators (niacin, vinpocetine, huperzine) and has a similar effect on me as the opioid (in my case, morphine), though not quite as potent (and of which I am imbibing at a greater rate since decreasing my opioid dose). While the way opioids interact with the vascular system is not especially well understood (at least from my admittedly superficial examination of the literature), it does appear to include interacting with nitric oxide (as well as histamine), which I've found of particular interest given Fluge and Mella's work with nitric oxide donors ME/CFS treatment. (Actually, couldn't see how your experiment with nitric oxide donors worked for you @alex3619 ?)

    As for the Vancouver Clinic's policy along with the current nearly mendacious national discourse on opioids, the BPS folks are doing to chronic pain patients what they've been doing to ME/CFS patients for the last 30 years: tell patients that what they're feeling is real but isn't, using CBT and GET. But for chronic pain, they've got the added ally of organizations like the DEA, a group of modern-day teetotalers which exists to make people suffer for having the disease of addiction. I'm guessing that since cannabis is being increasingly legalized, DEA is looking around for a new whipping boy to take its place and have found it in prescription opioids. While there are so many things wrong with the media discussion of this so-called "opioid epidemic," what I find most troubling with regard to the Vancouver Clinic's guidelines is the way it — and many FMS researchers — ignore what fibromyalgia patients have long been saying: opioids work in treating FMS pain. It's the same sort of thing as ME/CFS and GET. Patients overwhelming say one thing while researchers insist the "evidence" says patients are "mis-interpreting" what their bodies are telling them.

    The primary answer to the "opioid crisis" is straightforward: provide adequate treatment for substance abuse. But that costs money, and it's far easier and preferable to blame overworked doctors who prescribe opioids (seriously, the head of CDC said "this is a doctor-driven epidemic") and pain patients who persist in believing that the pain relief they receive from such drugs is not really real. To say nothing of how happy insurance companies are to remove or reduce a whole class of drugs from their formularies while being under no obligation to increase access to other treatments for pain (as if most of us haven't already tried them anyway!). And I'm sure companies like Pfizer are not unhappy to have their ineffectual anti-depressants and anti-seizure drugs forced on patients either. Most importantly, the "mind-body" folks think that meditation and CBT will work just as well as Vicodin. And it's not that meditation and CBT don't help — they very much do. But they are ADJUNCTIVE treatments, gawddamnit, not primary treatment.

    As for everything you've read or heard about what opioids do to the body — short-term or long-term, it's almost all bullshit. There is very little evidence for or against any such claims. There is very little evidence about anything pertaining to opioids period. See the P2P report on opioids in chronic pain (held just 8 months after our own P2P workshop). At the end of the day, they're playing the same game they've been with ME/CFS using the whole "there is no evidence to suggest X works long-term" when, in fact, there's no evidence to say it does not either.
     
    bspg, belize44, Gingergrrl and 5 others like this.
  17. alex3619

    alex3619 Senior Member

    Messages:
    12,480
    Likes:
    35,011
    Logan, Queensland, Australia
    I felt a little better but not enough to justify continuing. It also failed to control my high blood pressure. Funny enough it was the spray not the tablets that I could feel was helping. It might have been a dosage issue, or something else.
     
  18. valentinelynx

    valentinelynx Senior Member

    Messages:
    640
    Likes:
    1,392
    Tucson
    You hit the nail on the head with this. The "lack of efficacy" claims remind me of a classic article in the Journal of Irreproducible Results (wonderful parody publication lampooning scientific publications) regarding the use of parachutes. You see, there is no evidence in the form of randomized, double-blind, controlled studies demonstrating that parachutes are effective at preventing injury and death after falls from airplanes. The conclusion, I would extrapolate, is that insurance companies would be justified in not paying for parachute use.

    The relevance to opioids is that anyone who has been on either side of this issue: either pain sufferers or pain medicine physicians has observed the unequivocal fact that opioids relieve pain. This has been known for millennia! Of course there are special cases where opioids don't help much, and there are people who cannot tolerate them for various reasons, and there is a subset of people who find the effects of opioids addicting. But to argue that we don't know if opioids work for pain in the long term because of lack of studies is absurd. Just ask a patient that has used them successfully for decades - like me. Or ask a pain medicine doctor (I also am fellowship trained in pain management), who has observed hundreds of patients successfully managed for years with opioids, with little adverse result.

    No substitute for opioids has come close in efficacy or safety. NSAIDs in long term use cause gastritis, and perhaps even more often, as is recently coming to light, severe damage to the small intestine (scarring and ulcerations called "NSAID enteropathy", which cannot be prevented with H2 blockers or proton pump inhibitors). NSAIDs can also increase the risk of heart attack and cause kidney damage. Yet they are now being promoted as "safer" first-line alternatives to opioids for pain lasting more than 5 days! Other pain treating medications such as gabapentin and pregabalin only work for a small subset of patients and can have serious side effects such as drowsiness, dizziness, mood and personality changes, peripheral edema, and severe withdrawal symptoms. Likewise, the antidepressants prescribed for chronic pain: serotonin-norepinephrine reuptake inhibitors (e.g. venlafaxine, duloxetine, milnacipram) and tricyclics (amitriptyline, nortriptyline, etc) can cause severe withdrawal, weight gain, drowsiness and/or anxiety.

    Those who are now pushing for the use of "alternatives" to opioids for pain treatment are largely ignorant of the field. I predict the result of this campaign will be increased morbidity (damage) from use of NSAIDs, antidepressants and other non-opioid alternatives, and, of course, an epidemic of increased untreated pain, leading to loss of ability to work and suicide.
     
  19. Groggy Doggy

    Groggy Doggy Senior Member

    Messages:
    1,127
    Likes:
    4,132
    yes, and also a sharp increase in the purchase of herion as a street drug (continuing to make the drug lords wealthy)
     
    valentinelynx and Michelle like this.
  20. alex3619

    alex3619 Senior Member

    Messages:
    12,480
    Likes:
    35,011
    Logan, Queensland, Australia
    I know of cases of increased use of street drugs, with all their risks, alcohol abuse, and suicidal tendencies, in our community. Without useful alternatives to opioids there is no basis for making changes. Like prohibition, I suspect this is primarily ideologically driven, and indeed is a modern continuation of prohibition thinking.

    Something I think is overlooked is that controlled use of heroin by addicts has had a record of safe use for decades according to what I have read over the years. Heroin often kills when abused, or of unknown strength, or when combined with other substances, or of dubious providence, especially when cut will all sorts of weird substances. Its also easier to quit than smoking for many addicts. When are we going to make tobacco illegal? It probably still kills more people.
     

See more popular forum discussions.

Share This Page