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Thread: Open letter from a chronic pain patient

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    Default Open letter from a chronic pain patient

    I came across this letter in the comments of a story related to of course "the opioid crisis" and thought it really covered a lot of great points that some may want to bring up with their doctors OR tomjust copy and send to every politician who is affecting your life with misguided legislation. Also note (I've mentioned this guy before because he started this group to ban ALL opioids even for serious surgery - Kolodny - he's got his grubby fingers in everything).

    https://medium.com/@heatherzamm/an-o...WFeSx7hDLR2Xro

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    Quote Originally Posted by Bawston View Post
    I came across this letter in the comments of a story related to of course "the opioid crisis" and thought it really covered a lot of great points that some may want to bring up with their doctors OR tomjust copy and send to every politician who is affecting your life with misguided legislation. Also note (I've mentioned this guy before because he started this group to ban ALL opioids even for serious surgery - Kolodny - he's got his grubby fingers in everything).

    https://medium.com/@heatherzamm/an-o...WFeSx7hDLR2Xro
    @Bawston: Thanks for this post.

    I copied and pasted the letter and sent it to my Senators. I have one senator who is VERY progressive, and probably not so rabid, but the other one has sent out "bills" for my support that involved more "crackdowns" regarding opiates. Also my state is one that is considering not allowing Medicaid to cover ANY longterm prescriptions of opiates. It is rabbit-ass CRAZINESS!!! We can only hope that there begins to be enough pushback to swing the damn pendulum back towards the center at least...
    The cause of all suffering is attachment...

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    @jaders...ive been reading about states that are trying to not cover long term opiates for Medicare patients - same thing is going on at the VA for veterans with horrendous injuries. I have no idea why certain groups of people are deemed unworthy of very specific, proven, effective treatment, just as I'm also angered by the push to force urine testing on people receiving assistance benefits.

    I'm glad the letter got passed along because despite many promises, we've been left behind in all the madness.
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  5. #4
    Narxcare?!? F-ing Narxcare?!? That was a new one on me and I had to Google it, but it is not something I will ever forget now that I know!
    I'm so mad right now- I better post this link and log off or I'm liable to cuss a blue streak and get myself banned!

    https://www.painnewsnetwork.org/stor...about-narxcare

    And in case folks with depression or anxiety think, "Oh, this is just for pain patients, it won't affect me..."
    Oh, no no no, my friend- it says:
    "But NarxCare doesn’t just analyze opioid prescriptions. It also tracks other controlled substances, such as antidepressants, sedatives and stimulants. If a patient is on any combination of those drugs, their risk scores and their chances of being red flagged will be higher – even if they’ve been safely taking the medications for years."
    Nolite te bastardes carborundorum, b_tches!

  6. #5
    Wow, there are just so many issues with that Narxcare I don't even know where to start... Basing it ONLY on prescriptions without consideration of health conditions? Holy crap, you have to be ****ing me. Yes, dependence can develop very quickly and there is a need for caution with starting long-term on stuff for opioid-naïve patients (those are the ones more caution should be taken with, especially young people, not people with well-documented health problems!), ideally see if other avenues may provide relief first, but for some cases opioids, and sometimes high doses of them, are best practice and the only thing we have that works, and dependence is a SIDE-EFFECT, and can be managed.

    And this statement from the one article almost makes me laugh if it weren't so ****ed up - "According to Appriss, a patient is much more willing to discuss their substance abuse issues once they are red flagged as a possible abuser." I'd love to see the background info on that claim. Most likely they are conning people who are following the rules and just managing their pain into thinking they have a problem. The ones that have a real problem and especially the ones diverting it for cash (very rare but it does happen) will basically never discuss it. Those few problem cases, yes I feel bad for them, but compassion and human decency mandate that the needs of those in pain must take priority. And in any case, harm-reduction practices are far more effective with those people than crackdowns and punishments; they'll still get their drugs, it is the people who obey the law that will suffer. Me, most of us here, well, we just realize the law isn't always on the side of what is ethical and aren't going to just suffer and die for it when we aren't harming anybody else by our actions.
    Last edited by Anne Onomis; 12-01-2018 at 05:19 PM.
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    @ Mrs Parker - go ahead and let 'ER rip...you wouldn't be saying anything we haven't all already said! You're right that this does cover a LOT of medications, not just opioids. The quote that really REALLY gets me is...

    "NarxCare aids care teams in clinical decision making, provides support to help prevent or manage substance use disorder, and empowers states with the comprehensive platform they need to take to the next step in the battle against prescription drug addiction."

    Please tell me with all the hoops we're already jumping through what NEXT STEPS could states possibly take against us? I still say that it's much easier for them to go after patients and doctors rather than street dealers and gangs. Far as I know, my doctor doesn't carry a gun.
    Last edited by Bawston; 12-03-2018 at 11:12 AM.

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    I was thinking of this Narxcare and having a background in software, although many years old, I began thinking of other computer applications that we'll probably be seeing in the near future, if they aren't there now in some form or other.

    As doctors are pushed to see more patients and hospitals to make more profit for stockholders, I can see artificial intelligence becoming a big part of healthcare. Humans won't be making as many decisions and will rely on computer programs to tell them how to treat patients, determine diagnosis, and specify treatment. I see it now where human doctors have so little face time with patients that they don't even know them and they aren't picking up on critical changes in their conditions.

    In just the area of organ donation, there are specific guidelines to determine who gets an organ - lifestyle, overall health, age of course, and now whether or not you can afford the medications necessary after that stops organ rejection. There's a woman who was told that she didn't meet the criteria because she didn't have funds for the medications for after & they suggested she start a Go Fund Me to raise the money before they'd perform the lifesaving organ donation.

    Of course the final step will be a computer program that determines who lives and who dies. If you are a certain age and if you don't have the money I can see a computer telling the doctors to just stop bothering with you.

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    Hi!

    My God, no, I can't imagine....or rather I can but clumping all the reasons & deductions as to whether or not a person gets the appropriate treatment is sickening as no 2 situations are exactly alike as no 2 people are a like....

    That poor woman....a Go Fund Me should be started to shut these arseholse down, make some noise to stop people who have no clue to live w/a debilitating health issue or disease who shouldn't be making decisions whether or not we suffer, live or die...This is horribly sickening.

    What an eye opener this thread is...not that most of us don't already know most of what has been talked about but having to read it, be reminded of how crappy disabled people, how we get treated is always like getting hurt again for the 1st time all over again. Fckr's.





    Quote Originally Posted by Bawston View Post
    I was thinking of this Narxcare and having a background in software, although many years old, I began thinking of other computer applications that we'll probably be seeing in the near future, if they aren't there now in some form or other.

    As doctors are pushed to see more patients and hospitals to make more profit for stockholders, I can see artificial intelligence becoming a big part of healthcare. Humans won't be making as many decisions and will rely on computer programs to tell them how to treat patients, determine diagnosis, and specify treatment. I see it now where human doctors have so little face time with patients that they don't even know them and they aren't picking up on critical changes in their conditions.

    In just the area of organ donation, there are specific guidelines to determine who gets an organ - lifestyle, overall health, age of course, and now whether or not you can afford the medications necessary after that stops organ rejection. There's a woman who was told that she didn't meet the criteria because she didn't have funds for the medications for after & they suggested she start a Go Fund Me to raise the money before they'd perform the lifesaving organ donation.

    Of course the final step will be a computer program that determines who lives and who dies. If you are a certain age and if you don't have the money I can see a computer telling the doctors to just stop bothering with you.

  10. #9
    My mother, God rest her soul, was an organ donor. She made it very clear that was her wish. I am sickened to know that a patient may have been a match for her precious gift and their financial ability was a factor. That truly breaks my heart, It was an extremely painful day and we were comforted knowing that she in death would saving another persons life. We know that someone who was blind now has sight and another was given a new liver. I could never imagine telling somebody “no, you can’t afford the maintenance drugs”. To be honest, words fail me. I don’t know how anyone could. It would not have changed the decision, but I sincerely hope that was not a factor with her and it was a blessing for the recipient. We really only know that the organs went to 2 different men and I pray they are doing well.
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  11. funny how those death panels were just projection, isn't it @Bawston? at the risk of being political, i do hope that the new progressive movement will ensure that all americans have healthcare. yesterday i read of a poll that found 30% of americans won't go to the doctor because of costs.

    stockholders should not be part of healthcare. healthcare should not be run as a business because then we get decisions not based on saving lives but on making profits. and i stay this even though i have medicare. my son pays $10,000 a year before his insurance kicks in. it's disgraceful that going to the doctor is not how ill one is but whether one has the cash.

    it's always been clear that the group bemoaning the so-called opioid crisis is also the group who owns multiple rehab facilities. now all americans get to be in pain thanks to their heavily massaged "facts." people should not run government agencies they have an interest in. this is called regulatory capture, and it's taking over government.
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    Quote Originally Posted by notcharlotte View Post
    funny how those death panels were just projection, isn't it @Bawston? at the risk of being political, i do hope that the new progressive movement will ensure that all americans have healthcare. yesterday i read of a poll that found 30% of americans won't go to the doctor because of costs.

    stockholders should not be part of healthcare. healthcare should not be run as a business because then we get decisions not based on saving lives but on making profits. and i stay this even though i have medicare. my son pays $10,000 a year before his insurance kicks in. it's disgraceful that going to the doctor is not how ill one is but whether one has the cash.

    it's always been clear that the group bemoaning the so-called opioid crisis is also the group who owns multiple rehab facilities. now all americans get to be in pain thanks to their heavily massaged "facts." people should not run government agencies they have an interest in. this is called regulatory capture, and it's taking over government.
    @notcharlotte...I have a feeling the judge who just ruled that the ACA was illegal may have helped get us to universal healthcare. I hope we do since we're already paying for it, companies are already paying for it, and yet we have way too many people without healthcare or with deductible & copays somhigh that theynlet littlemthings go until they're big problems. I'm on Medicare too and can see the benefit of one system that's the same for everyone. Just having the reduction in paperwork of sending bills to multiple insurers, getting rejections, having to resubmit, figuring out which insurance is primary, etc adds a huge amount onto the cost.

    I've never understood why someone who works for a small company should have less insurance coverage than someone working for a huge corporation just because the big ones can negotiate.

    I say let everyone have single payer, Medicare for all,type coverage with ONE prescription plan and let those insurance companies find other markets. They can cover homeowners, cars, liability for companies...heck have gun owners take out insurance and that'll pick up the loss for them in medical insurance...ohoh, I'm sure I just opened up a can of worms there!
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    Kolodny is also parading around Nan Goldin. Here's her link begging for cash. What a surprise!
    https://www.change.org/p/hold-the-sa...-opioid-crisis

    Goldin was into herion and made garbage "art" when it was all the rage. She's the perfect companion to Kolodny. Both are snake oil salesmen.

    1:08:58 of pure lies: https://www.youtube.com/watch?v=kfEwPufW5Mc
    Last edited by SWAT; 12-19-2018 at 05:18 PM.
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    The War on Drugs™ is a TOTAL farce.

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    Quote Originally Posted by cat person View Post
    Kolodny is also parading around Nan Goldin. Here's her link begging for cash. What a surprise!
    https://www.change.org/p/hold-the-sa...-opioid-crisis

    Goldin was into herion and made garbage "art" when it was all the rage. She's the perfect companion to Kolodny. Both are snake oil salesmen.

    1:08:58 of pure lies: https://www.youtube.com/watch?v=kfEwPufW5Mc
    @cat person...well, I just read her letter - my my! "We demand". "We demand". "We demand".

    So somehow someone forced her to take this particular medication although we're not clear why she took it but have to assume that she was probably in pain and a doctor tried to help her but somehow forced her to swallow these particular pills that are so highly addictive that many people take them without problems.

    Why they must go after this one company and ignore all the others - like mfg of fentynal I'm not sure. But one thing I do know is that I'd been getting good relief on Percocet but of course you're taking it every 4 hrs or so. When this came out thenidea wasn't to "hook" people on it but to give patients who needed long term relief a steady supply of the medication without the peaks & lows. I'm so tired of their BS stories!

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    One other comment I have to make about OxyContin and going after Purdue. The shift off Oxy and to other drugs, mainly street drugs was primarily because they were the first to come up with a tamper proof pill. The reason people were using Oxy to get high was that one pill had a 12 hour dose & they'd crush it then get the full 12 hour dosage at once...automatic high.

    So even before all these politicians jumped on the bandwagon because people with money had kids overdosing, they had already moved on to other drugs yet boy, didn't they take credit for doing their part to fix the "crisis"!
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  16. Quote Originally Posted by Bawston View Post
    @jaders...ive been reading about states that are trying to not cover long term opiates for Medicare patients - same thing is going on at the VA for veterans with horrendous injuries. I have no idea why certain groups of people are deemed unworthy of very specific, proven, effective treatment, just as I'm also angered by the push to force urine testing on people receiving assistance benefits.

    I'm glad the letter got passed along because despite many promises, we've been left behind in all the madness.

    Good Lord- I am glad my father passed away when he did then. He had a cool Dr. No one would give him surgries he needed- hence the pain pills.....but that is absurd. WHat about a person that has 2 broken hips? ANd no dr will fix them bc "it is too risky" I can think of plenaty l term conditions- i had endo myself- i think it was the worst endometrosis in the world. Cramps-pain EVERY SINGEL DAY. No one would give me a hystertomy. Dr's scripted whimpy pills. It was only my friends mom who was a nurse that suggest a real pai pill that - to my amazement- worked! ANd then luckly i had a Dr ( my father) who at the time could just order the meds himslef for me. Bc what the Dr scripted me was a rediculas amount- like 12 freaking pills. I took them for over 20 yr's and never increasead my dose. Although i was in pain most of the time. THis war will have to stop- maybe a REAL war will take the attn off this FDA B.S. I can't think of anything else to make the FDA stop. oh- did you hear Trump say that he got the CHinese on board with fentynl. A freaking DEATH PENALTY for fentenly! Talk about harsh....


    FOGOT SOMETHING:I forgot to say- all this B.S. and chrobic pain has extened into the vetrinary workd!!!!!
    I treated- and am still treating cat on pallative care with my fahter's old pain meds. !
    Even vets don't want to script anything!
    CRAZY
    Poor animals- our option is to euthanise them when they could live a little longer with adequate pain and anxiety control. I bgought both cats back to life with hydromorphone- found it in my father's old stash from yr's ago. Safe for cats. BUt already had 2 vets say "no you can't git to them"
    Well i did and it was the best 3 weeks of their life since their illnesses began.
    It was a wonderful 3 weeks until il ran out.
    Now cutting up bits of morphine for them ( also complementary of my late father. SO we euthanize the pets but then we keep people alive forever- and it seems a lot are in pain- GOd help me in 10 yr's i willl be about 60!
    Last edited by sweetniko; 12-23-2018 at 08:36 PM. Reason: forgot about my hospice cat

  17. I forgot to say- all this B.S. and chrobic pain has extened into the vetrinary workd!!!!!
    I treated- and am still treating cat on pallative care with my fahter's old pain meds. !
    Even vets don't want to script anything!
    CRAZY
    Poor animals- our option is to euthanise them when they could live a little longer with adequate pain and anxiety control. I bgought both cats back to life with hydromorphone- found it in my father's old stash from yr's ago. Safe for cats. BUt already had 2 vets say "no you can't git to them"
    Well i did and it was the best 3 weeks of their life since their illnesses began.
    It was a wonderful 3 weeks until il ran out.
    Now cutting up bits of morphine for them ( also complementary of my late father. SO we euthanize the pets but then we keep people alive forever- and it seems a lot are in pain- GOd help me in 10 yr's i willl be about 60!

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    I’ve written off my GP as a pain management option, as has my wife, who, as I’ve mentioned previously, suffers near 24/7, chronic pain often to the point of sheer agony. I pulled something in my back AGAIN and was in so much pain for 3 weeks and the doctor prescribed gabapentin and advised otc co-codamol or plain old paracetamol despite knowing full well when this happened before this combination just wasn’t working, the gabapentin actually made me feel ill. This is how it went down in my GP’s office,
    Me:“I actually need effective relief to be able to get on with my job. As you know, gabapentin doesn’t agree with me and provides little pain relief
    GP: “Yes but, if I was to prescribe codeine or tramadol, you’d be unable to drive to work”
    Me: “I’m in the fortunate position of having a job where I can work from my bed if needs be, a long as I’m not in this agony. That way, I’ll be paid rather than not or claiming SSP”
    GP: “But you wouldn’t be able to concentrate on your work if I prescribed an opiate pain relief”
    Me: “I’ve been prescribed them before and managed my work, pain and life just fine as you’ll see in my notes.”
    GP (like a mother that doesn’t hear you - a bit like mine lol): “Take two Gabapentin, three times a day with a combination of either paracetamol or co-codamol and ibuprofen. Oh, and if you can swim, use your nearest pool, that’ll help. It works for me. Good day Mr.XXX”
    Me: “Well it won’t be cos I’ll be in pain and chucking up two gabapentin instead of one. I’ll deal with it without your help.”
    GP: “Very well then. Goodbye.”

    Un-f***ing-believable! She was like a well-mannered, pre-programmed, over-weight, Mrs. Doubtfire-looking robot. Cold as ice. No wonder my wife has quit her appointments. Her health problems have been thoroughly investigated (which I am grateful for) and they are non-life threatening but highly painful chronic conditions which our surgery refuses to manage effectively. It really winds me up!
    God Bless PR and it’s members! [calmed down now]

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    @sweetniko...it actually makes me feel ill to say this but the reason some vets aren't prescribing pain meds for pets is because they've seen an increase in people actually hurting their pets to get the meds to use for themselves. I've used the same vet for over 20 years for my animals and they've been great but I'd guess if someone New showed up with an animal with a broken bone it's possible they'd be worried.
    @Dusk1983...codeine or tramadol aren't even major pain meds! It's interesting that you mention the gabapentin because my own doctor hurt her back & although she used to try to push that on me after it's documented that I've tried it and had bad reactions, she finally figured it out first hand herself. I asked her what had helped her with her back pain & she casually mentioned that she'd tried gabapentin & she had terrible memory loss. Oh really! Funny, when I told YOU that I had severe confusion you told me to increase the dose!
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    Oh my god @Bawston, I sure appreciated the info in your post but I wish there was an option beyond "like"; I can understand lying to the vet about your pet's pain but that people would actually hurt their pets to procure PKs makes me sick... but it's all too believable, I'm afraid. Another horrifying facet of prohibition.
    Likes snowy, jaders, songsiren liked this post
    Like a Bolt from the Blue!

  21. #20
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    Bawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond reputeBawston has a reputation beyond repute

    Quote Originally Posted by blueroan17 View Post
    Oh my god @Bawston, I sure appreciated the info in your post but I wish there was an option beyond "like"; I can understand lying to the vet about your pet's pain but that people would actually hurt their pets to procure PKs makes me sick... but it's all too believable, I'm afraid. Another horrifying facet of prohibition.
    @blueroan17...I agree with you - it makes my stomach churn to think about a beloved pet in any kind of pain, never mind something that an order would inflict on a pet who relies on you and trusts you.

    I got a strange call from my vet's office a year after my dog died of cancer. They were questioning a verification they got from some mail order pet med supplier for pain meds ... listed them as the vet who was quick to call me because they know me well and knew that my dog had died! I was so shocked & confused because I said, well you were with me when we had to put her to sleep so how can you even ask that question.

    The only thing I can figure is some employee went into their computer & got owner's info from deceased pets thinking no one would know & maybe hoping that if the company called the vet, that they'd intercept the call or something. I can't figure out any other way or why they were do this - can you? So weird!

  22. Open letter from a chronic pain patient
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