This will be our last chance to be heard prior to election, 2016.  If you are unable to make it, send a caregiver, relative, friends, neighbors, or anyone else who is affected by your lack of adequate pain control.  Even those who aren’t affected should attend in order to preserve our rights and the rights of generations to come.  Please RSVP asap.

Register Now

In order to finalize arrangements, we need to start a head count.  With the election coming up and everyone being discontinued or functioning on a decreased amount of their effective pain medicine, less and less people will be able to attend.  Make your Voices Heard Now, before losing the ability to do so.  We are losing more and more rights every day.  The needless suffering and loss of functioning must stop now.  If you’re unable to make the Rally, but want your voice heard, please send a letter to be read at the Rally.  RALLY AGAINST PAIN – 10/22/16 – The Ellipse, WASHINGTON, D.C.  LET’S MAKE OUR VOICES HEARD!!!

391 thoughts on “CALLING ALL CHRONIC PAIN PATIENTS – Need RSVP’s for Rally in DC 10/22/16 – 10 am-5 pm @ The Ellipse (new venue). We need to make our Voices Heard! Have you had enough of this yet?

  1. We are the parents of a 45 yr old dtr who has suffer from the effects of RA, ankylosiing spondalystis and abd pain. She has tried many treatment modalities, injections, multiple medications and many other treatments. She cannot take NASAIDS due to gastric bleeding and when she was started on a fentanyl patch 5 yrs ago, she began to have her life back again. As many others have shared, the CDC has turned around the lives of thousands of people who suffer with chronic pain. Our dtr has been on the same dose, has never had a negative urine test and follows thr Dr guidelines. Her medication was decreased and her attempt to find a new Dr, has been turned away by 5 dr’s. ” Her case is too complicated”, most won’t even look at her charts. This complete disregard of human suffering is against the Hippocratic oath physicians take to “do no harm”. To watch our dtr suffer and be helpless is excruciating. Please read this if you can.

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    1. Eileen &steve I just got done reading your post with tears in my eyes im also a chronic pain patient I have over -150 pcs of hardware in my back long story
      I’m sitting here just thinking why why why and how could a doctor say to a family that we can not help you it is to confusing???? Are you shitting me!!!!!!!!!!!! I’m so mad rate now , I feel like coming to where you live and going to meet the doctor that said that
      Lana has to read this letter to the CDC/dea this is sooooooo
      Sad Eileen & steve I could never go through something like that

      I want to wish you all the luck and prayers I just hope that these people understand what
      Us animals go through every day I call us animals because that’s how they treat us

      I hope things work out for both of you and sibling

      Johnny

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  2. I have suffered from chronic pain for greater than 5 years. I have severe spinal stenosis and severe SI joint pain. Was told by a neurosurgeon that in order to relieve some of my pain, fusion of 13 vertebrae would be required. Naturally this is not feasible.

    I have taken increasingly high doses of opiates ( finally stopped increasing the dose, although my pain is not controlled).

    Recently my pain management physician has told me of the constraints the federal government is intending to place on opiate prescribing.
    My only wish is that those “people” who are recommending the constraints on opiate prescribing have to suffer from chronic pain. Maybe if they walked in the shoes of the chronic pain sufferer, they would change their mind.

    During my last appt. my pain management physician stated that the federal govt. was planning on increasing mental health services so that the patient in physical pain could “learn to live with their pain”. This is the most obsurd statement I have ever heard.

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    1. I happen to be told that today by my pain management dr. I was flabbergasted. .. I’m not “crazy” if I could “deal with it”, I wouldn’t be there…. I have chronic pain and have numerous medical documents to prove this, but I’m being punished for having chronic pain and cut off my pain meds. Ridiculous

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  3. The majority of patients relying on these medicines, ok a sweeping statement, but none the less I believe to be true, will be overweight (I’m in too much pain to exercise, should have addressed the issue sooner), eat rubbish (if it doesn’t come in a packet, it’s too much aggravation), use pain management as a crutch to dodge these issues, without taking responsibility when it’s a viable choice.

    Are 18000 deaths a year, if it was your family member acceptable?

    Leave these choices too late, your going to hurt. (I don’t want anyone hurting, but lets help ourselves)

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      1. Why do most of the people in our government believe that people suffering with addiction, are so much more important than people suffering from chronic debilitating pain!?!
        For people in suicidal amounts of pain, we can only wish that addiction was all we had to worry about.
        Not to make light of addiction, only in attempt to describe the extreme weight that comes with the hopeless burden of life long chronic pain that can’t just be detoxed out of a person’s life.
        Addiction is a real issue that I’m sure is extremely difficult to overcome…
        But at least addiction CAN be overcome!…
        For so many disabled people that suffer from constant chronic pain, there is no cure!…
        Our only hope is medication to help us cope with the pain and enable us to live as normal a life as possible.
        The answer is giving addicts more treatment options, not taking away pain patients only treatment options!!!

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      2. The definition of disability is not always a clean one. Your pint is entirely reasonable. It is active versus palliative care. In cancer care a lot of the medications given are not to treat the cancer but to relieve the side effects. We need to always keep what you say in how we deal with pain issues.

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      3. Amen to that ..don’t punish patients….treat addicts and pushers. I had an incident last year when I went to the ER with one of my gallstones incidents. I repeatedly and speciifically told them I did NOT want any pain medication ( knowing already what the perception is and the climate . I truly didn’t want pain meds I just needed radiology. So after ultrasound what does the nurse trot in with ????? A syringe of morphine ! I refused it but I should have watched her pour it down the drain or return it to pharmacy. For all I know she or another staffer had a good evening 🙂 The irony of it all…..when you ask you don’t get …when youdon’t want it you get it.
        And they tried to bill me which I successfully contested and made no bones pointing out their idiotic past actions concerning pain patients.

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      4. Hi Lana this is Johnny I’m
        Hoping every thing went
        Good today I no you are very very busy I was just wondering if you could email me and tell me how the rally went I’m so mad I couldn’t make it just to much pain

        You are a great women I appreciate you doing all this work
        Johnny

        Liked by 1 person

    1. You are assuming that the pain came after the increase in weight and thereby increase in pain.
      You say that pain control is a crutch. There is no correlation to any of your claims which makes you just another fear monger and scuttlebutt junkie spreading rumors with no care for who your words hurt.

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    2. I was a health nut, heart healthy diet and daily exercise. Only one day I fell, rolled over something on the trail with my bike tire. Results were insidious , none the less, AVN , necrosis of the hip bone, needed replaced. First surgeon placed wrong size, result metalosis, needed second hip replacement, found Lung cancer the day of discharge from second hip replacement. Had double lung resection and chemotherapy. After two hip surgeries, ended with leg length difference of 1 inch or less that caused a collapse of 3 discs on LS spine, requiring a 3 level spinal fusion, failed, fusion incomplete and bilateral wobbling SI screws. Now I am preparing for a second back surgery to make screws longer and reinforce the rods. I take class medication, least Amt effective to control pain for my lifestyle which is none. I have no life, I cannot walk, must use a wheelchair for any distance. So be careful who you talk to like that. All I was doing was getting exercise and I am young, this started in 2012. I am unable to work because I cannot walk. I need pain medication to get thru a day. Because of my circumstances, I am unable to exercise. But do not lump me as an addict. You take care of yourself because ALL CASES OF PAIN ARE DIFFERENT, and because the government wants control, those in pain possibly unable to access pain relief turn to the street and heroin because it is cheap and accessible, so, way to go Obama, CDC. FDA, DEA, but just can’t control those drugs from coming across the boarders. Because I take narcotics does not mean I need help to get off them. Let’s take away the pain, then I will get off them.

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      1. What is really going on here fir someone like me, who has been in the field for a kin time, is guys like Andrew Kolodny from Physicians for Responsible Prescribing (a poster boy for medical criminal). Go and read his site. They want to get the armies of Drs to treat the legions of alleged drug addicts they say are out there. So what do they do? They want to switch you to black box psych meds. That means they use anti depressants in pain management when there is no evidence they work either. Everyone needs to go to the Prop website. Truly disturbing.

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      2. Absoltuely true…..The ludicrous situation of it all they are willing to doll out psychotrophics like M&Ms thinking that they will be the answer to pain. I’ve heard that soemtimes they do help some people and thats great if they do..for me it helped my headaches a little but that was it.
        The rest of my bodt was a mess, my mind was mush, sure as hell wasn’t an antidepressive…just makes it harder for you to think and feel, generally adds weight which in turn spirals your body down more into an unhealthy situation. T was prescribed an antipsychotic at one time and when i was thinking really drastic thoughts I stopped it immediately. The doctor’s don’t know that damage they do prescribing these class of meds. Ask any one of them to offer the literature and third party tests that it helps pain…ah the infamous serotinin cover all mantra. Serotonin my ass ! Let me say that in my escapades of self treatment since the drs know shit…. I have found some things that have help augment or substitute for painkillers. California poppy tincture is a whopper! I have always found that methionine can augement opiods and heklp them work better or ratehr methionine fills in the epmty pain receptors that opiods usually inhabit. Don’t take too much or it can send you into withdrawl..but when you get that sweet spot it’s heaven.
        Gaba can help for anxiety , spastic muscles and sleep aid. It feels liker benzos but it’s not bad like benzos. Great for detoxing from a substance as well. I also do rife. Electrotherapy I feel has been greatly ignored. It helps some pains as well. DLPA is said to help with pain….works by assisting the brain to retain longer the endorhins it makes or gets. I never did try this one…but I may since I’m having some trouble upping my levels with cannabis. when going to app0ointments with a doctor the first time save your money and have yopur 1st appt. 15 minute consult. Do not let them take blood pressure, weigh you or anything else or they can legally charge you as an examination ! That about a $200.00 dollar difference. You are there to TALK to the dr period….for no longer than 15 minutes. It can really expensive trying to find a doctor that can fit your needs and personality. Be a smart consumer and patient. Don’t cower in your chair…chin high and speaking intelligently and informed is your best weapon.

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      3. Hey Hanni

        I’m not into herbals and other things. Not that I speak against…only it’s not much for me. I am simply amazed how Drs can prescribe anti depressants off label for pain but can’t prescribe on label for opiates. Just do not get.

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      4. If we pointed out the offlabel use of psychotropics for non FDA approved uses..then that might prompt the doctor to come up with another plane. Just becasue something is commonly done doesn’t make it legal. Their sword swings both ways.

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      5. I am not sure. Here in California they really push them. The amilytryptine is really messed up. My thought is that we need to point out the hypocrisy of prescribing off label when the regular meds work.

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      6. I agree completely. But the fact that doctors push the same things for the same illnesses doesn’t make it “legal”.

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    3. When I was reading this, I kept looking for the punch line…… That’s not sarcasm, I really was waiting for a line saying something about this being written by yet another uninformed person who doesn’t live with chronic pain, and how this is an example of the attitudes that need changing. I’m dead serious, those were my actual thoughts, but when I realized this was no joke and was actually someone’s opinion, I didn’t (and still don’t) know what to think. You have basically painted an entire legitimate community as nothing more than fat lazy junkies……. How absolutely cruel. Please note I’m using the term junkies in the vernacular, they are people with addiction issues and should still be treated with respect.
      Do you or anyone you know or love suffer with chronic pain? Are you an advocate? Do you feel that chronic pain sufferers need access to life saving medication? If no, there why are you posting here? Do you think you are helping people by making them feel bad and “med shaming” them? Please respond, I really want to know. Are your words being taken wrong or are they accurate? Say your piece please, help us understand you.

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    4. I was NEVER overweight until I was inhumanly taken off my pain meds COLD TURKEY months ago! I was a sheriff’s deputy, volunteer at the shelter, had a clean house and never stank a day in my life!! Now I can barely walk let alone stand at a stove now. Easy food of choice now, LOTS of cereal & lunchables, which doesn’t force me on my feet for more than 5 minutes.
      Just once, I’d luv to exchange my daily life at present, with any of you anti-opiate do gooders. You’d never make it!

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      1. Lucia- While that may be your story- we ALL have one! There are millions of chronic pain patients across this country who ARE doing what they’re supposed to be doing like chiropractic, streching, yoga maybe injections in certain cases, but without the help of opioid medicines along WITH these other modalities, thier quality of life is GONE! If your ok with not having any quality of life, that’s your choice, but the majority of us, ARE FIGHTING TO KEEP OUR QUALITY OF LIFE…..we don’t want to BE FORCED TO lay in bed crippled in pain & give up….we want to be able to live the one live we’re given!

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      2. To Lucia, Most of us use dietary supplements in hope it will help fight our disease processes plus be healthier. We are also on many restrictive diets for disease processes and try to avoid processed foods, gluten, MSG, dyes etc. Fresh fruits & vegies are high on our list, not only for health reasons but bc they are easy. But being on a limited budget buying a $7-10 loaf of gluten free bread is very hard. Most of us use alternative therapies ie yoga, aquatherapy, plus PT bc not one of us wants to lose our lives, our jobs and live in agony. Pain meds usually only make the agony bearable not gone. Dancing, gardening & scuba diving are my 3 most missed activities. BECAUSE I CAN’T PHYSICALLY DO THEM!! And NO I am not over weight, nor am I on meds like so many others that make one gain weight. Learn The Facts.

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      3. Hi Lisa

        If you don’t mind discussing this would you be willing to give some detail about how you were cut off? I’m trying to get something going legislatively here in California. I’m interested in this and how it works.

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      4. Lisa this made me cry. I’m a big dude and I don’t cry. I cannot do anything I used to do. No drumming. No golf. No basketball.

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    5. Lucia- While that may be your story- we ALL have one! There are millions of chronic pain patients across this country who ARE doing what they’re supposed to be doing like chiropractic, streching, yoga maybe injections in certain cases, but without the help of opioid medicines along WITH these other modalities, thier quality of life is GONE! If your ok with not having any quality of life, that’s your choice, but the majority of us, ARE FIGHTING TO KEEP OUR QUALITY OF LIFE…..we don’t want to BE FORCED TO lay in bed crippled in pain & give up….we want to be able to live the one live we’re given!

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    6. I think you do not understand that most chronic pain patients have auto immune disorders such as Lupus, MS rheumatiod arthritis, neurological disorders such as trigeminal and other cranial neuropathies, peripheral neuropathies. body wide disorders such as CRPS (chronic regional pain syndrome) and other disorders/diseases that do not respond to simply “taking care of ourselves”.
      It is tis type of ignorance about chronic pain and the disorders that cause it that has led to the simplistic notion that all someone in chronic pain needs to do is eat better, exercise, lose weight.

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      1. Hi Lee

        I do not believe that any literature that I have seen clearly correlates chronic pain patients with higher levels of autoimmune disease. I am not saying that there is no way that could happen. I would need to see something to could prove that. I am keeping an open mind. Yet is that even something that helps our case? Lee it is important to understand two things: The prevailing medical theory in reference to chronic pain is that it is mostly in your head, and, chronic pain patients need to learn to accept a certain level of pain. Dr Gupta, CNN’s resident hack, is a proponent of this.

        In my opinion, it is not productive to attach our needs and issues to the needs of autoimmune patients. We need to change the narrative to have our patients to be believed. We also need to show that opiates, properly used and followed can be an important part in quality of life

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      2. Thank you for replying. You misunderstood my point. The sentence was to point out that chronic pain disorders can be found in autoimmune diseases, neuro disorders etc not to say that there is a correlation between chronic pain and auto immune but that it is not merely low back pain etc that too many think it is and can be conquered with PT aspirin, etc.

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    7. Who are you to pass judgment on those of us in severe debilitating incurable pain!? Do you think we just sit back and do nothing for ourselves!?!? Walk in my shoes for a few days and see how i do nothing , smdh, its not my fault nor the faukt of nearly all chronic pain pts that there are those who CHOOSE TO ABUSE whatever they want, i dont see drug addicts taking accountability for their actions unless they get caught breaking the law, Ive been on opiods for ten years i am far from overweight, i look forward to the day karma knocks on your door, and your body is taken iver by severe pain, pain so bad u beg god to take u like i do every day.

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    8. Where do you get off acusing people in pain of being lazy and fat? What a presumptuous statement! How ignorant can you get? I can guarantee that suffering from chronic pain is absolutely motivating. You will try any treatment, therapy, diet, healing art imaginable to get your life back.
      Here’s a thought: take your medicine as directed, keep it in a lock box, and nobody has to die!
      There is no reason to vilify chronic pain patients, and punish them for other people’s poor choices. WE suffer too much already. If you tried to imagine yourself in constant, unrelenting pain, regardless of you best efforts to minimalize it’s claim on your body; would you honestly see YOURSELF as a fat, lazy drug addict???

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    9. Lucie,
      You are a troll. Why would you be here, saying such hateful things to people who are genuinely living with chronic pain every day of our lives, and tell us it’s because we’re all FAT?

      I hate to say this, but I hope one of your children comes down with RA or Ankylosing Spondylitis, so you can watch the one you love the most suffer every day in a world where she cannot get the medications she needs to stop crying herself to sleep every night and being unable to walk to the bathroom because of the pain. The doctors are all cowards, afraid to stand up to the DEA and say “Hey – this patient NEEDS this medication – Back OFF!” If the doc’s would just do that, the legislation might change. But as long as they cave in, as soon as the CDC prints a ridiculous new set of Guidelines, based on NO FACTS WHATSOEVER, we’re SCREWED…. We’re not JUNKIES. WE ARE LIVING IN CONSTANT CHRONIC PAIN, man. There is a DIFFERENCE!

      Jesus!!!

      Rob

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  4. We know what leads to proper health , diet and exercise, how many people are helping themselves, or have they left it too late, answer no.

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    1. What are you saying, Lucinda. This is why I blocked your comments, because they make no sense. Are you saying that “healthy, diet and exercise” would somehow cure or help chronic pain patients? Do you feel like chronic pain patients aren’t taking care of themselves and that’s the problem? If your comments aren’t more constructive, I will block them. Why? Because I don’t HAVE TO waste my time answering questions which have no meaning, like this one.

      Liked by 2 people

      1. Thank you Lana! It’s people like that who do not have to suffer through what we do, that make such ignorant statements. Most of us suffering through a chronic pain disease would give just about anything to have our old, healthy life back.

        Liked by 1 person

      2. I have been in chronic pain since 1998 and only went to dr’s they sent me too. Over time I was put on OxyContin 80 mg. 4x a day plus 30mg. Of roxycontin 4 x a day . Last month they cut me to 30 mg twice a day because of new rules by the CDC. I don’t know if that is the real reason but my doctor told me their is nothing he could do and try to take care of myself. I was able to have a partial normal life before. I am a vet and the reason I was on these meds is a doctor cut two nerves while doing a hernia surgery that I later found out I didn’t have a hernia at all. My quality of life is non existent now just severe debilitating pain , thank you dr’s

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    2. Lana do your suffer with chronic pain? I have CRPS and suffer every day without proper pain management, you have no idea what we go thru every day and what we do or do not do for ourselves so if you are not a chronic pain sufferer please keep your comments to yourself because you don’t know anything about this topic Thank you!

      Liked by 1 person

      1. If you’ve CRPS, Why are you on a site for chronic pain questioning the one who organized this rally? I just returned and we’re all chronic pain patients, advocates or both & we’ve finally United for what’s only the beginning. Your CRPS isn’t a fun pain at all to have. I spoke & dedicated my time as did many such as Lana on a day that couldn’t have been more windy which took a lot of time. I just end returned home and I’m about to relax with my spouse, get a massage from my pain & hope that you’ll follow me on Twitter @Snoogums79 or locate me on Facebook on the VAUEMC Facebook site or all the other groups I’m in for chronic pain on & off Facebook. I’ve a WordPress account to which I’m listed through these reams as chronicpainpatient due to its my wordpress account. Go there and see what’s been posted as I’ll have more time now that one rally’s done we’ll start working on our next ASAP?

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    3. I have sjogrens syndrome, fibromyalgia, microscopic colitis, degenerative disc disease, arthritis,tremors, balance and mobility problems and I am only 55, should I be denied the opportunity to visit my kids and beautiful granddaughter, or go for a short walk or be able to ride in a car very long because of the pain even going the bathroom feels like someone is ripping my insides out. I did not do this to myself it just is, so I ask you should I just be put aside and let die, have absolutely no quality of life. Maybe people like you think we should all be lined up and “taken ” out of our misery, so people like you don’t have to deal with it. If u don’t suffer from chronic pain , shutup

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    4. Listen Lucia what ever you’re name is I’m so tired of your not needed remarks why are you doing this !!!!
      Why don’t you go on some other app Or did you loose a close friend to opiates ???

      What’s the problem!!!!!!
      I’m in good shape I eat write!!!!! That doesn’t mean anything you weirdo!!!!!

      Liked by 1 person

      1. anybody who says to suck it up is a complete fool. they should tun a sharp nail into their spine and leave it there for life. no pain medication no nothing. i give that person no hope, because thay dont feel our pain. That is called ignorant. Just like society is favoring and sympathizing with Junkies before tax paying citizens and vers with serious problems. kunkies are morons and those that think addiction and dependence are the same are also morons.

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    5. OK I am so confused why are you rallying in the first place? I am a very educated person, who before getting sick used to work as a nurse and paramedic as well as volunteered a lot. But for the last 14 yrs I have suffered more and more like many of you and had more illnesses added on. I sufferer from severe Fibromyalgia, Lyme’s Disease, Moderate degenerative disc disease in my lower back, restless leg syndrome, complex migraines with hemipheresis.(basically means when i get a complex migraine I have a mini stroke)…those are just the “illnesses” forget the UNBEARABLE PAIN & FATIGUE, Shocks in my legs, the gradual loss of my mobility, the N&V from the pain, loss of appetite AND the big one LOSS OF OUR DIGNITY. What I would’t give to be able to go to park with my 3 precious grand-daughter and play with them all day but I can take them but cant do much beyond that. I am very fortunate to have a doctor who will give me the meds I need. but there are many who don’t or cannot.
      And trust me I may have to spend a lot of time in bed, but I do take care of myself. I do a lot of advocacy work online and I try and go out to the living room to spend time with hubby when I can and my best friend comes over to get me out of the house. AND I do some minor exercises my physical therapist gave me to do at home with these rubber bands. oh and thank god for my therapy companion dogs, they are amazing! and keep me sane. lol

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      1. Why would you be confused that we are Rallying for our rights. It’s a matter of awareness. We got some good coverage from it and that is exactly what we were hoping for. Baby steps, but steps in the right direction.

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      2. I think it is wonderful. What I would like to see at a minimum is standards set for weaning an opiate user off meds. Do you know why all of these folks went on heroin? Because they were cold turkied.

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      3. And thusly is available stats for the self fulfilling prophesies and accusations of the DEA and FDA. They are making criminals of pain patients. I see this callousness towards pain relief and it’s horrendous actions akin to the abusive authoritiers the IRS performs on it’s citizines.
        The commonality is the abuse of power towards personal gain.

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      4. A lot of them do that I heard a few stories of people doing thati I heard that they go
        Out on the streets and buy pain pills and then it gets to expensive then they buy the herion and shoot it in there
        Arms but the dea just just thinks there drug addicts

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      5. Yep. I had investigated a former pharm Tech who did that. You ask these folks how they ended up on heroin after opiates and it’s always they got cut off their Meds and needed Sinething. It’s born out of desperation.

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      6. I just had a thought…how about doing youtube videos on one channel. ..a pain channel?!
        All of us could tell our stories and troubles as well as the family members of those that could not stand their pain anymore. It would bring more expose to the pain meds ( all types ) insanity and what impact it has on what used to me normal, hard working, nonelite people. What cha think?

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      7. As far as I kno0w ther is no cost. I did a video already and they have charged me nothing. It’s been up for about 2 years.

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      8. I like the use of “thusly”….lol

        It is so criminal. And what makes it worse is that for almost all of them they would have kept prescribing if it wasn’t for the government trying to regulate pain.

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      9. Of course. The reason why this is coming on is because of the coming legalization of marijuana. The police departments don’t have assets of pot heads to go after anymore. So what do they do…,.go after pain patients.

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      10. Randy standards are a way to dominate and coerce individuals and are contrary to Lloyd oral particularism autonomy and the capabilities model of health justice. One size doesnt fit all and standards have lead to mcdonaldized medicine and social disorganization. I guess doctors who get pimped and indoctrinated in medical school have trouble with moral particularism and see all 8ndividuals as some nondescrpt itwrative prototype. Maybe doctors should be indoctrinated with some Kant as a countermeasure to their becoming. Right wing drones.

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    6. Lucinda if that’s your name go countingmyspoons.com dontpunishpain.com & many other sites we with chronic illnesses with chronic pain since you’ve too much time on your hands bashing those you know nothing about. Go crawl back into your bubble, attend your addiction meetings as you’ve no idea what chronic pain feels like. You’re delusional if you think we’re all over weight, don’t eat right & chose our chronic illness we’ve no choice to live with for the rest of our lives. You better look up what chronic illnesses are, learn compassion & feel the pain we have. Many of which have no cure & we’re done wasting our spoons with the likes of you. Walk 1/2 mile in our shoes, learn compassion & don’t come back until you have! We’d give anything not to have the illnesses & chronic pain we’re left to deal with for the rest of our lives. Johnny & I will come step on you until you feel the pain we feel just as we’re going to do to those in power practicing medicine w/o a license & maybe you’re one of them!! We’ll NOT stop until we’ve regained every chronic pain patients medications, Constitutional, Civil & Human rights back that you have in your bubble world. Ken from dontpunishpain would tell you ” Don’t stay on that horse of yours too long because you may fall off & have pain & have nowhere to go” I wish no one harm except, you as you’re too ignorant to know our struggle that ALL of us with chronic illnesses & pain. We’d give anything not to have maybe you’d like to have one as I’m sure everyone will give you one of theirs. You’re BS doesn’t deserve a reply so get off our site? You’ve no idea how we with chronic pain count our spoons daily until you go the the websites above. Now go away as you’re not welcome here?

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      1. I couldn’t be at the rally today. I would really like to know how it went. Will there be any news coverage? I am really struggling. Today has been an emotional day, just knowing that we might be heard. Almost out of spoons.

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      2. The rally was done on video but, there wasn’t enough bandwith to go live. Therefore, it will be done within the week & posted on the Rally Site. Continue to send your letters either to here or on my blog at chronicpainpatient@wordpress.com. I’m following up with Senator Ben Cardin in 2 weeks and will give all letter that weren’t received in time to give on 10/21/16 the day before the rally. I’ll make sure that all letters I receive will be printed & taken with me.

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      3. Still giving us pain patients a hard time ha lucia !!!!

        I’m a nice guy Lucia but I really would love to
        Meet you I’m so I can just let me show you what kind of pain I suffer with every day
        24/7. 365 days a year I
        Will bring my wife with me and I can guarantee you by the end of her telling you what happened to me and the pain I go through
        You will be crying at the end

        Liked by 1 person

      4. Not you or one single person has to justify how you feel to this ill-informed idiot. You are wasting your time. Could you imagine being married to her? I mean she would probably nag the shit out if you and make you pee sitting down. Don’t waste your hate on her.

        Liked by 1 person

      5. Thanks Randy. I just wanted to inform her that she’s probably part of the problem. Please follow me on chronicpainpatient@wordpress.com as I’ve many important issues there. I’m just starting it & now will take more time to continue it for all with chronic illnesses & chronic pain. I put all on my personal Facebook page which I’d be happy to share with all in chronic pain once I know who everyone is. My Twitter is @Snoogums79 & to all who’ve not taken the pain survey please do ASAP. It’s very lengthy but, we need more & even those who care for one can complete it.

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      6. Wonderful. I love to hear when pain patients do things. We need to be heard. I was an insurance fraud investigator for almost 30 years. I put people in prison for pain med trafficking and now having been retired because of chronic pain issues, having to deal with it is a new experience. There are some pain patients who are scumbags. They are in it for nothing more than getting hi.

        But those who are helped by it are simply being lumped in with everyone else. There are good common sense changes that could be implemented. But instead it’s just mess everyone’s life up.

        Liked by 1 person

      7. You know we can all eat better and exercise more. I am always interested in links between nutrition and health. I have a soda problem. But you can just see her with her shit eating self righteous grin lecturing people who don’t need it.

        Liked by 1 person

    7. lucia have you ever thought we were young once healthy ate right played softball for 12 years POW then one day our family health history popped in and things change. Your sciatic nerve gets pinched between to major vertabra and you have to have surgery to release but while your under they see they have to remove part of the two vertabra have to be removed Then you find out a year later they didn’t graft the bone back on. You start losing your spine then ,Ostoarthtise take over you whole lower spine and hips and you in up in a wheel chair not walking, bending, cleaning or driving its been 2o years and has gotten worse every year and yes if not for the pain medication I would have been dead along time ago. If you want to call that weak go ahead. I would really reather be paralyzed from the waste down at least I wouldn’t fill all the pain.

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  5. I suffer every from CRPS and I really resent your comment Lucia, do you have chronic pain? Do you know what your talking about or what people like myself go they every day?? I will not explain to you what I do or do not do for myself. I see it this way if you don’t suffer don’t comment!

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    1. My husband is a chronic pain sufferer since he hurt his back in his early 20s, which then failed him 10 years later. He just turned 61 last week. He has had multiple surgeries, facet blocks, exams of all types, and the only masking of pain he receives is from his medications. Over the last two and a half years, we have been settled with a doctor who seemed interested in helping with his pain. He increased his dosing, which had some positive effect with my husband’s pain level. He actually started to feel like he could make a trip to the grocery store with me, which for him is a major effort. Now though, since the doctor told my husband two visits ago he was going to have to cut his meds in half, my husband is a complete wreck. He is depressed, says his life is over, and so on. I AM HIS WIFE AND I AM LIVING HIS PAIN TOO!! I am freaking out, he is distraught. I found your site, as he and I feel we can’t not be involved in this anymore. We cannot attend the rally; however, our voices need to be heard. All I have read here gives me a touch of hope, though I have never been so scared in my life. Scared for my husband, for caregivers, for families, and for all those, including myself who suffer in pain. To be told we have to fit in a box of treatment, when, in my opinion, chronic pain is as individual as your DNA. No one can tell YOU what you are feeling. Please let us know if there is anything we can do from our little haven in the desert in California. Thank you. Pam

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  6. I have UNBEARABLE chronic pain every day 24/7 for 10 YEARS . I can’t handle the pain I’m in. My pain Dr is taking my medication down then off .I just lost my husband in a bad accident on 9/15/16The father of My children and grandchildren .He was doing everything to try and help me ..im sure I have ARACHNOIDITIS PLEASE HELP ME someone this pain will kill me my children and grandchildren will not be able to take another loss !!!!

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    1. Kim, I am so sorry for your loss. I can’t imagine how difficult this is for you. Please stay strong. I have little help and severe chronic pain, but I do the best I can.

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  7. The” invisible disease” there are many, but we live with Chronic Pain. This is unrelenting it wants to swallow you up whole but the Fibro warrior in me screams NO.
    I have CFS/SEID/M.E., Fibromyalgia, Bulging discs from L5 to S1 or sacrum, Gerd,Lung nodule,Depression, Anxiety & Migraines. I have days when my memory isn’t good and I believe the pain distorts it. Chronic Pain is devastating!

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  8. The” invisible disease” there are many, but we live with Chronic Pain. This is unrelenting it wants to swallow you up whole but the Fibro warrior in me screams NO.
    I have CFS/SEID/M.E., Fibromyalgia, Bulging discs from L5 to S1 or sacrum, Gerd,Lung nodule,Depression, Anxiety & Migraines. I have days when my memory isn’t good and I believe the pain distorts it. Chronic Pain is devastating!

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  9. The” invisible disease” there are many, but we live with Chronic Pain. This is unrelenting it wants to swallow you up whole but the Fibro warrior in me screams NO.
    I have CFS/SEID/M.E., Fibromyalgia, Bulging discs from L5 to S1 or sacrum, Gerd,Lung nodule,Depression, Anxiety & Migraines. I have days when my memory isn’t good and I believe the pain distorts it. Chronic Pain is devastating!

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    1. How I see it. EVERYONE at one time or another will need pain relief. If not currently then possibly years down the road, or a family member will be in a car accident, or your aged parents are suffering from severe arthritis. I refuse to give into ignorance, just tell it like it is, because stuff happens.

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      1. Agreed. I look at it as the mom test. If I was totally against opiates but my mom had cancer and said they helped her would you refuse your mom? I wouldn’t.

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  10. Good pain control YES if it takes stronger pain medication for us to live without suffering UNBEARABLE chronic pain. I’m scared for my life I can’t live in this in this pain I cry out to God for someone to please help !!
    This is life or death we have FAMILIES don’t we have a right to live .Im going to the pain Dr who is trying to get rid of me maybe because I’m on Medicare or I have ARACHNOIDITIS from an epidural injection that went in my spinal fluid .Hes adding on to the pain center New surgery center so he can do epidural injection and other surgeries Please l scared to go see him to day he will take me off my medication that will kill me in pain. No one wants to die we won’t to be out of HORRIBLE CHRONIC PAIN PLEASE save our lives .Do we have a right to live life out of terrible disabling chronic pain. Or do doctor end our lives taking us off our pain medication then we are left with no doctor. Why are there so many deaths it could lead back to the ones who are supposed to care for us .

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    1. Hi Kim, I wanted to offer my opinion as to why the doctor is going to probably cut you off. I have 28years of experience in the Workers’Comp Field.

      If you go to the doctor and do the infamous pain schedule, and say that the pain meds are not doing anything, the dr is going to think that you are developing a tolerance or that you gave your meds to someone. In other words you want more but you aren’t improving. You should always say you have good and bad days. Let me know if you need anything.

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      1. Good pain control YES if it takes stronger pain medication for us to live without suffering UNBEARABLE chronic pain. I’m scared for my life I can’t live in this in this pain I cry out to God for someone to please help !!
        This is life or death we have FAMILIES don’t we have a right to live .Im going to the pain Dr who is trying to get rid of me maybe because I’m on Medicare or I have ARACHNOIDITIS from an epidural injection that went in my spinal fluid .Hes adding on to the pain center New surgery center so he can do epidural injection and other surgeries Please l scared to go see him to day he will take me off my medication that will kill me in pain. No one wants to die we won’t to be out of HORRIBLE CHRONIC PAIN PLEASE save our lives .Do we have a right to live life out of terrible disabling chronic pain. Or do doctor end our lives taking us off our pain medication then we are left with no doctor. Why are there so many deaths it could lead back to the ones who are supposed to care for us .

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    2. This is my advice. Is this a pain management doctor? Ask him to provide a weaning schedule. It is the standard for most pain management doctors to provide a weaning schedule. In other words, he will say that the objective is to get you from 10 Norco a day to five a day in a certain time. Ask him how he is going get you there. Ask him what you should do if you feel suicidal from the pain. What about pain management counseling to help you deal with the pain problems you will have. Ask him if he will put you on methadone or suboxone instead. If not, then you should ask for a referral to another doctor and then go find another doctor. Something has happened behind the scenes because most reputable doctors, if they want a patient to wean off, will not just throw them off the bus and say fend for yourself. Feel free to go to emergency room and tell them that the doctor cut you off as well. Here in California, there is some of the same thing going on, but they require the doctor to at least have some dosing schedule and a plan for weaning.

      I am truly sorry for you.

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      1. I agree, for a physician to just pull a patient off narcotics cold turkey knowing withdrawals are imminent and have physiological consequences, the doctor has something to hide. The new rules are not mandatory, they are guidelines encouraged to follow and designed to intimidate dr’s. To follow. Dr’s go to many many years of training and are quite aware of pain and narcotic medication. The government is the one to be afraid of and they need to be called out. But if your Dr drops your medication, run as fast as you can for the door because they are not interested in your well being.

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      2. When I Drs want to wiythdrawl you cold turkey …..just say lawsuit. Since they are already devoid of logic and compassion,sadly this is the only way to hit where they live since obviously they are for all intensive purposes dropping you and sending you into the depths of sever suffering. I’m sure there are guidelines for withdrawl ( whether it’s warranted or not) but it’s ammunition for at the very least demanding a more humane way of withdrawing…or offer to go back to ultram…it’s better than nothing ?

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      3. I go to pain management classes every week. The prevailing wisdom in medical circles is that withdrawals while uncomfortable don’t lead to any real permanent issues. I went through them after my first surgery when dr fuckface forgot to prescribe before he left on vacation. It was bad.

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      4. Not in New Mexico! I have 2 heart problems and was told by another doctor, that opiate cold turkey could kill me. Went to ER with 224 bpm tachycardia and was told in 5 minutes….”Sorry. Cannot & will not help you”. Hospital ER!!!!
        We need this rally.
        We need help. We need to be treated like human beings instead of govt lab rats!!
        God bless you guys and good luck tomorrow!!!

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      5. Sheri, you missed my point. When you ask the dr to put all these things in writing they will back down. When confronted with a patient who stands up for themselves a dr will back down. How many patients have filed a complaint against their dr for negligence. If your dr would cut your meds to zero in an arbitrary manner would you know what to do

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      6. That is not the case here but the hospital emergency rooms are not giving out pain meds at all. They will give a temp dialaudid shot. Most pain treaters here in the Bay Area are anesthesiologists.

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  11. I support the Pain Rally in Washington, DC. I am unable to attend but would like to make a statement regarding the current tide against opiate use.
    There are people who need medical opiate use to live life not trying to escape life. These are people with legitimate chronic pain who will never abuse the drugs or have an accidental overdose. Please don’t let irrational fear overcome logic.
    I have degenerative disc disease of the entire spine. I have had three spinal cord surgeries. One cervical. A titanium plate was inserted with three screws in my neck. I have a thoracic ruptured disc at T 1-2 that currently too dangerous to do surgery at this location unless it gets much worse. I have had two lumbar surgeries. I am basically fused from the waist down to the coxic bone. The first ruptured disc was lumbar at the age of thirty five. I am now 68 and have had chronic pain all those years. I took antinflamatory drugs for eleven years. I had to stop taking those because my bowels were showing signs of becoming ulcerated. I finally took my doctors advice and started taking low dose opiates. I am a happy strong well ajusted person who wants to be a contributing member of society. Opates are one of many healthy tools I use to keep the pain at a manageable level so that I can function.
    Please listen to the people who need pain management and do not want a over zealous reaction to opiates to stop them from living a productive life.

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  12. I too support the Pain Rally in Washington D.C. but the inability to travel kept me from attending. 39 years ago, while working as an RN, an accident occurred while transfering a spinal cord injury patient. He was fine while I was left with permanent spinal nerve damage. Since then, I have had 3 spinal surgeries, numerous physical therapies, injections and am on my 4th implanted pump which delivers opiate directly into my spinal column. For years, I avoided oral opiates relying on anti-inflammatory medications until the risk of ulcer and there lack of benefit led me totake controlled doses of oral opiates. I do not get high from my medication nor abuse it’s usage. The implanted pump enables me to get out of my elevated bed independently. The use of oral opiates allows me to have an occasional outing or to play with my grandsons. In central Virginia, there is now only one physician who manages pumps due to the current climate against opiates.
    I know there are people who abuse, overdose and sell opiates.. There are also many, like myself, who need them to manage life with chronic pain. Please listen to those in need.

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  13. Lana: Is there a specific place to leave our stories, to be submitted and read, other than here in the comment section? If I had the funds, I certainly, would make the trip for the rally. However, with being unable to work, depending only on my husband’s teaching income; the road has been very bumpy and many bridges out, over the past 3 1/2 yrs. I was recently told by a SSD administrative judge, he was awarding me my benefits; however, awaiting formal letter and start date. So, our financial constraints and struggles continue, for the time being. I am behind all of you, who are putting this rally together and all who are able to attend the rally. Hopefully, I will be there, next time around…..

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  14. Hi! I am a family member and I want to tell you how it has effected my relationship with my wife. Everyday I watch her in pain crying out for the pain to stop. It doesn’t of course. She has a pain management doctor who gives her low dose opiates. She had to sign a contract with him. She has to give a urine sample before seeing the doctor so they can check to see if she is taking it. She allowed to then take one prescribed opiate for the month and when it gets to the third month they make her an appointment to start all over again. I feel helpless to help her
    I see what she does or does not do for the day .If she’s had a bad night her pain meds didn’t really do any good keeping her from sleeping it’s a bad day for her. I watch her trying not to move to much so the pain doesn’t get really bad. Usually she has to lay back in bed. She tryst to help when she can but its not often. Chronic pain sucks for us! Can YOU imagine being in pain 24/7 365 days a year. I’m surprised there aren’t more suicides! My wife has chosen to fight her chronic pain. Like she can chose! Please understand there are a lot of people who have it worse than me. Please help

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    1. Jimmy, besides being a chronic pain patient for the past 25 years, I worked for a Work Comp insurance company for 32. I know the inside outside of what is happening. What you and the folks on here need to realize is that in most states, the magic line of whether you will get your meds without too much pain and suffering is what in California is known as the MTUS, or commonly known as the Medical Treatment Utilization Schedule. This, almost without exception, is what determines whether someone is going to get or not get meds, or, will get their meds cut.

      Basically, the MTUS wants to see that there is improvement in quality of life. They want to see that your wife is able to participate in the Activities of Daily Living. In other words, if you pain level is an 8 before using opiates, and you say you only go down to a 7, 99 percent of all doctors will say that you have not shown any improvement on opiates. They want to see you went back to work, exercise, participate in something to either maintain your health or improve your situation.

      IF YOU SHOW UP AT THE DOCTOR AND ONLY WANT PILLS, WITHOUT SHOWING THAT YOU TOOK OR ARE TAKING SOME PERSONAL MOTIVATION FOR IMPROVING OR MAINTAINING YOUR HEALTH AND PAIN LEVEL, THAT REALLY LEADS DOCTORS INTO SAYING THAT YOU ARE NOT BENEFITTING FROM USING OPIATES.

      So, your response is well without them, I will be bedridden and not be able to do anything. And their response is well you are not doing anything with the meds. Some people will say that their pain meds are the starting line. If you are taking them and NOT doing anything for you, most doctors will say we need to try something different. However, a good pain doctor will have a real soul searching chat with you to see if you want to do something different. If a pain doctor though sees that you are at the same level of meds for year with no drop in pain

      However, what you need to realize is that you cannot withdraw or wean yourself off meds without medical supervision. It will usually take a year for weaning for every year you have taken the meds.
      So, ask the doctor for a referral to a pain doctor. The standard for weaning is usually a half pill a month. So, if you are taking six pills of OxyContin a day, you will go down to five and a half for the next thirty to sixty days. What I would suggest is to ask to be switched to methadone for a short time until you can find a new doctor. Most reputable doctors will allow you to do so and keep prescribing until you can find someone.

      If the doctor says you are not going to get anymore, or, they are going to cut you more than ten pills in any 30 day period, ask them what are they going to do to prevent you from going into withdrawals.
      There are many many patients who will go into withdrawals with even two less at any one time.

      The other option is to self pay. Some of you may say that is not fair. Well, the entire system is not fair.

      Remember-you have to show your doctor you are doing something, not just taking pills and staying in bed all day. Even if you go out to the mall or to the park every day, they want to see effort. This does not mean you have to have surgery.

      Finally, the buzz word is pain MANAGEMENT. They want to see you are doing something to manage your pain, not just popping pills. If you doctor sees that you are doing things to manage your pain, and that pain meds are a component of managing your pain, you will more than likely keep your meds and not have problems.

      I know some of you are going to come back to me and say that this is not fair. Save it. I know its not unfair and mostly wrong. But, I am giving you information that will help you in the long run and avoid any major problems.

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    2. Hi jimmy I’m so sorry to here that about your wife I’m also in the same situation but it’s me that is in pain and my wife is just like you our relationship has fallen apart because of me being in pain 24/7 I have had so many back operations and so many shots in my back I have had lost count also 2 stimulaters in my back . My wife is a nurse and she can not believe that what is going on with these people in Washington!!! She sees it every day people suffering because the doctors will say what to give a patient after a surgery that has been done in the hospital she can hear patients crying all night in pain because the doctors don’t give enough pain medication imagine that!!!!!! But just giving your wife one pill a month!!!!!! That’s not fair!!!!!

      It’s like giving someone a table spoon of water after walking 50 miles in deserd I’m sorry jimmy. hopefully these people in Washington will understand us pain animals I call us animals jimmy because that is how we are treated my uncle was on tramadol not even a opiate and his doctor stop prescribing it after 8 yrs he fought for this country in Vietnam imagine that

      His dog was prescribed tramadol because his dog needed an operation it’s his best friend so he went to the pharmacy and they prescribed his dog tramadol jimmy!!!! Same pill he was on they wrote his dog a prescription for 50 tramadol his dog ended up taking 20 of them he took the rest imagine that

      Well good luck with your wife
      Jimmy

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      1. Hanni, of course I reported the guy. In fact my investigation got him a four year prison sentence. I was a detective. I had a legal obligation to report. I never let anyone slide. This guy was very helpful and was instrumental in getting a dealer off the street. When I was interrogating him he showed me how he did it.

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      2. I am very glad to see someone with the cojones to do the right thing. Most people I know only like to bitch and not be part of the solution. Good on you !

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      3. You are kind. I am retired now due to my work injury. I have the unique position of having to approve pain meds while going to the dr for my own.

        I do not at all think there is an epidemic at all. I investigated probably 200 fatal overdose claims. In every single instance the decedent had multiple drugs in their system. The real danger is the dual prescriptions of benzodiazepines along with opiates.

        Of course there should be changes in the system. Every time there is an escalation in dosage or strength,there should be a comprehensive review. Meds should only be handed out in 15 day increments. But no random drug tests without reason. A patient unless convicted of a drug crime cannot have their meds unilaterally cut off and a plan for weaning off.

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      4. I beg to differ with you on the 15 day doling of meds. For the prudent patient I see no reason for it and it only goes to cost the patient more money that he/she can ill afford ( and your insuracne company may not appreciate) If one wants to committ sucide it can be don e on a number of legal meds. Accidental overdoses… there are those that are the result of forgotten then doubled up doses, there are those that are the result of combined legal meds and then those in between.
        Thinking back on it I could have easily succumbed to methadone but it was for the grace of God and my great Dr that he immediately put me back on oxy. Overdoses do not and should not automatically be translated into addictive behaviors and thus “opiod death”. What about the stats on overdosed psychotropics?

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      5. So without going back to the doctor for another visit ( which requires payment) who then is the
        meds guardian…the pharmacists? I think they don’t want or need the extra labor and liability of that. For those that have a real travel for their doctors that also puts extra unecessary turmoil to their lives. Why do you think a 15 day regimen is preferable? Am I missing something obvious?? I do have my dense times 🙂

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      6. Hey Hanni

        You would not get charged. You would simply go back at 15 days and get the 2nd half.

        Why is this preferable. First if you had someone that does have s problem it is easier to monitor giving them a smaller supply. Lets say that someone gets 180 Norco a month. If that person has a problem with abuse you are giving them a loaded gun with that amount. But let’s say you give them a smaller amount. Would you not agree it’s easier to monitor that amount and intervene if there are problems? You can do that quicker. And if the meds are not working a dr can intervene much quicker.

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      7. Ah…now I understand but again still disagree. Although this is a repackaged proposal I think it still does not treat the true patients with respect and dignity that adult pain patients deserve. Aside from psychotropic medications (and those that have been proven unmindful, suicidal, abusive etc) and medicines for addictive withdrawl, what other medicines have been purposefully doled out in segments? I really resent that my behaviors and capabilites are being colored by the actions of the few. If the patient has a “problem” then it’s more likely they aren’t true pain patients and they should not be prescribed to at all. Why are we eternally penalized for what might be for some when *my* behavior has merited no such condemnations. It is a solid plan for those that are ADDICTS not for pain patients. All that is going to happen with continued blanket responses to addictive behaviors and the resulting punitive actions to patients will be the needless suffering , the deaths of some, and perhaps trying to get anything ( heroin or anthing else )thus making themselves “criminals.” Then the DEA and FDA will gleefully declare …”see there we told you so…abusive addicts!

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      8. Hey

        At this point the issue of respect v non respect is over. The damage is done. What we have to do is to start acknowledging we have gotten swept out to sea with the abusers. It’s wrong. Everyone should be treated as individuals and a medication plan should be tailored to that persons needs. I have been screaming about this for years. But we are blemished with everyone else. We are going to need to realize that we have to be more politically active but also accept a higher level of scrutiny. I see your point though.

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      9. I agree 100% with all you’ve said. A very sad state of affairs. I for one don’t go down easily.
        Let’s roll !

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      1. Hi Johnny

        Thank you for your words. I don’t feel good about being right. I wish things could be different. I’m available if you or anyone needs help.

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      2. Randy- for years now the biggest complaint in medicine in America has been that “patients”- whom i like to refer as people- dont feel their doctors listen or respect them. Lets face the facts- doctors increasingly since the 1800s have dismissed people (patients) with their medical gaze/Medusa stare. Courses in ethics- just like pain care- isnt that like the sprig of parsley next to that nice fat juicy steak and garlic mashed potatoes. Doctors eliminative materialism and disrespect for anyone and everyone who doesnt have that wonderful medical degree is a reflection of the moral disengagement and the disempathic orientation that is taken for granted in medical care. And isnt there research showing improved outcomes when “patients” are respected by their doctors.
        Your profession needs to be overhauled- medicine has become too autonmous and too much a burden on the rest of society financially and in erroding civil society. Social movements are brewing to counter the hegemony and cruel treatment of people in pain by medicine. We are kicking in the rotten door of yur profession and we will show the great lack of vision in medicine the self dealing and the disregard for the rest of society and the disregard of individuals and individuals will no longer be tolerated.
        Medicne has been given great freedom by society and government still believes in market fundamentalism but medicine in its current form cannot be sustained and we citizens whom medicine regards as unqualified to have an opinion wont settle for microrreforms or polite reformism we will no longer be part of medicine menu- we will instead be at the table and wont allow doctors to continue to get fat with power- were putting medicine on a diet-we dont care if doctors kick and scream like children- because morally they are children who dont wish to play fair with others- especially people in pain.

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      3. Bravo bravo ! Encore encore…….I will play devils advocate and say that I see both sides of the fence. Some patients…not necessarily pain are one’s I would not want to be responsible for ..they can’t articulate whats wrong with them, where they hurt, how they hurt etc. especially the seniors. But too many of them do display the attitudes described by David. This the biggest reason I don’t give them the big first examination money. I do the first visual an interview with them to see if we can be compatible.

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      4. Hanni and David

        I agree but this is not dr driven. It is law enforcement driven. The Dea is pressuring Drs to cut back by threatening their licenses etc. of course the dr community could have done a lot more to drive the discussion in a scientific method.

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      5. Randy Lol spoken like a true believer. Doctors love to claim they are blameless and that anyone else is responsible for their mistreatment of people they call patients.
        Just like dr webster blamed a research paper by portenoy and foley for causing doctors to use a lot of opioids.

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      6. I will tell you what the spike in opioid abuse was caused by. When I worked in the late 80s and early 90s, we would have physical therapy bills where claimants were getting 100s of sessions with no benefit. The switch to meds was done wrong. We knew this was wrong but it persin

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      7. So … we’re talking 20-30 years ago? Yes, things have changed as far as prescribing. Whether or not you were able to engage your patients in meaning physical therapy I guess depends on a lot of factors.

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      8. Yep it was 20-30 years of meds. No physical therapy. In fact in California for work injuries you are limited to 24 visits over the life of the claim.

        You can’t have it both ways. You can’t cut people off meds and then deny them any meaningful way to recover.

        Now in Ca they have even micromanaged the system so that Drs can only prescribe from a list of seven different pain meds.

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  15. I believe I have wrote on this site or the va site but forgot to ask if there are anyone that works in Washington if they have chronic pain or anyone in there family suffer from it. They work for us. Are the american people ask this or what is the law of them all to take a drug test I think the american people have the right to know I thought the hippa law was to protect Americans but that is totally wrong.

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      1. I never had any problems taking any tests, urine, blood, whatever, because I was dead serious about taking my meds. I signed the contract, kept my appointments, went through the 12 Cortisteroid, 3 nerve blocks, physical therapy, dosed up on Depakote, Lexapro, Neurontin, Effexor, steroid pills, etc. Now, half the crap thwy gave me have class actions against them, my kidneys & liver are more than likely shot because I have that pain now. I followed every recommendation and requests by my doctors. How do they treat us? Like addicted animals. It’s plain wrong for our country to do this to us.
        Especially since our own troups have been in Afghanistan, guarding the poppy fields that the Taliban tried burning down several times! Their production rate is up over 40%. Dirty politics for the almighty dollar…screw us little people. We’ve been shown we are expendable!

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      2. Steven

        There is absolutely no law that says a dr can refuse to prescribe based on not taking a test. A dr can refuse to treat you. In fact under the pain patient bill of rights a dr must provide unless there is indication that you are selling. A difference without a distinction but important

        I agree with you about the testing part.
        I only failed one when I had a severe stomach flu. Most pain Drs will usually give you a pass on one maybe two but after they cut you loose.

        I think that the drug testing thing is right. However when I was an investigator I was looking at a lab that was padding the bills and testing fir every drug under the sun. The tests would be 2k or so. They’d run the tests through a lab that either they or a friend had a financial interest in as well. But overall you are correct in being fastidious about your drug tests.

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      3. With pain DRs a rarity it’s damn shame when you’ve got one thats really trying to sap you for all the insurance you’ve got. My last one was trying to pad the bill with me as well. I’m not against testing but only when its mandated by law. I’d love to get the citations on pain DRs and what they are required to do. I really resent having to pay for anything more than I need..living on SSDI doesn’t allow for a lot of anything much less greedy DRs. I was lucky that that is when cannabis was legalized and there’s been no turning back. I am saved the monthly DRs visitation fees and his and his staff’s sideways glances. He as well tried to force me to see his office associates. One a social worker wanna be shrink, the other a chiropractor. Didn’t need a social worker type… was open to the chiropractor but NOT when I am forced. If they can’t produce enough business on their own then that’s is their problem…I don’t like being hijacked. I didn’t see the chiro and he’s a really nice guy but a strong brahma bull….too strong for me. The moral of the story…like Randy said don’t get bulldozed by overpadding or anything else.

        Like

    1. Anyone working in govt has the money to get whatever they want, just like celebrities and rich people. They can pay cash for both drs and meds so nothing is on computer. Us poorer people, are forced to go through ins where records are kept and given out freely. Govt manipulation to control sick & elderly. Suicides since opiate ban is at 30 yr high, and still rising! These aren’t overdoses of heroin or party drugs. These are pain patients. Oncologist just lost his right to prescribe!! That doesn’t scream mass murder?

      Like

      1. Yes you are absolutely positively write!!!!!!!!!!!

        Let’s see if we can look at the records and see what there doing !!!!!!!!! Look a the singer prince he was on liquid morphine or fentanyl for what arthritis in his hand from
        Playing the guitar I wish I could go to this rally and see one person holding a sign that is against opiates take him
        Or her and just step on their hand until it breaks and say how does that feel hurts ha
        And say I live like that 24/7
        365 days I would love to do it to someone in Washington actually that rude bastard that won’t even attempt to go to the rally It’s on a Saturday his day off every day is a day off to them government workers !!!

        Getting to mad gotta go

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      2. Hey Johnny

        If you are famous you can actually get them prescribed under a different name.

        You know why this is all happening don’t you? It’s all due to marijuana. Drug clinics need patients. Cops need someone to arrest. Legislators need someone else to plant as the boogeyman. Instead of taking some common sense reforms they paint everyone with a broad brush.

        Like

      3. I personally know of a couple in New Jersey where the husband has Stage 4 lung and throat cancer. Pain medication was withheld until he would agree to give up palliative care (including chemo, radiation, MRI’s, bloodwork, etc.) and go into Hospice. This amounts to abuse in my opinion, but I don’t know what to believe about New Jersey. The agencies tell you the problem is with the doctor, the doctor tells the patient it’s the CDC. It’s my opinion that the CDC had the duty to clarify their intentions with regard to the guidelines, but quite frankly, they chose to refuse to do so. This is outrageous and totally unacceptable. It really doesn’t matter what the intentions are … it’s what is actually happening to human beings that counts. They turn a deaf ear when they hear of these things. Deliberate indifference? My opinion is definitely.

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      4. It is ethically and morally wrong to withdraw someone off pain mess cold turkey even in a hospital setting. I asked a guy I busted for getting unauthorized refills. I asked him why he did it. He said that he was scared if withdrawals. That in a nutshell is the opiate problem-people do not get treatment because they fear the withdrawals.

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      5. That is a problem although I don’t know to what percentage. Can you blame us…with doctors that are so discompassionate and obtuse? Whe I was at John Hopkins Pain clinic in Baltimore I did the mistake of asking to be withdrawn from Clonopin although I was there primarily for pain management. The event there was 2 weeks of pure hell. But my hell was noting compared to anothr little waif of a girl that being wityhdrawl of 80 mgs oxy and they gave her NOTHING except an occasion does of benadryl which obviously was not enough to stop her sufferings. I learned years later that same hospital was supposed to have an alterntive school. Now why is it *I* can find alterntives that helped withdraw me painolessly yet this deep pocketed school can’t ?
        It’s a problem of bureacratic red tape policies and doctor’s egos. Too many SOBs in white coats.

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      6. I do agree with you to a certain extent. But Drs also have negative experiences. Do we know if he had been burned before? And did the hospital have the appropriate staff to do it? That is what I am saying. There has to be appropriate protocols with minimum levels before someone can be withdrawn. Most gp Drs could not do anything to properly withdrawal someone.

        There are times that someone should simply be maintained on meds.

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      7. That is beyond moronicly ludicrous. Another reason why you should secretly or openly
        (depending upon your state’s one party law) To9 my knowledge the CDC does not outline the norm of medical treatment. So again get your DRS to pin down exactly what agency or law he’/she is governed by when making outrageous deceisons like these. Should tradgedy follow
        you’ll have the evidence of purposeful illegal withholding of medicine. This decision is tantamount to a death sentence. UNACCEPTABLE!

        Like

      8. Absolutely. It is just stupid to worry about addiction or dependence with cancer patients. But Hanni this is exactly what I have been saying all along-the chronic pain patient community is three to five years behind in this area. We have been painted with a broad negative brush. We need to build on what Lana is doing. I have some medical issues that I need to attend to but when that gets resolved I’m going to start my own pain group.

        Like

      9. I think thats a great idea..Randy. I think the more pain groups the better but evetually they will all need to channel into one humungous tree trunk of solidarity in order for the Captol Hill folks to sit up and pay attention. That and Congressional recall is what it’s going take. You don’t need to hire an attorney to do a Congressional recall. it’s a matter of getting the knowledge and having one or more person/people do it. Perhaps the pain fols can chip in for the filing fees but that should be it outside of offering evidecne for the recall and voting for it. Believe me when the Congressman/woman stands to loose their cushy jobs they get off their well pampered tuckuses and do something to force the legislation to withdraw the blanket persecutorial atmostphere to doctors and patients.

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  16. I have suffered from chronic pain since a botched hernia surgery in 1998. I did everything the dr’s told me to do and was finally put on 80 mg OxyContin and 30 mg roxycotin. I found out after 3 years that I didn’t have a hernia in the first place. Unless people see you bleeding they don’t believe you are in pain. My dr cut me down to 30 mg. twice a day and said take care of yourself that he has to do what the CDC tells him to. He has been my pai mgmt. dr. for 8 years and knows my history and just doesn’t care I have done only what the dr’s told me to do but now I am the problem because people are overdosing on heroin.
    Because they can’t control the illegal drugs that are flooding the market they take the legitimate ones from the people that really need it. And for you people out there that haven’t had more than a paper cut you have no way of understanding what it is like to be in pain 24/7.

    Liked by 1 person

    1. Hey Ralph

      This is what I tell people. I have a lot of pain. But I can deal with it. The thing that I hate though is that it never lets up. It wears you down. So you have a good day. You do just a little more than you should and bam…the pain goes right back.

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  17. For those of you that believe chronic pain is made up or exagerated, do 1 small thing. Take a carving knofe and stab youself in the foot. Now leave it there for the rest of your life. walk run do waht you can with this carving knife in your foot. just dont take it out and dont take any pain medication. ONLY THEN CAN YOU IMAGINE WHAT WE GO THROUGH EVERY DAY OF OUR LIVES. JUNKIES USE DRUGS TO GET LOADED. WE USE PAIN RELIEVERS TO RELIEVE PAIN. GET THE DIFFERENCE NOW?

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  18. Both noted Neurologist and Pain Spec. lost licenses with same charge…Improper Paperwork and 4 possible deaths to negligence. Neurologist was found innocent of deaths, still had license revoked. Everyone in NM going to him, flooded into my town for pain mgt. (Xtremely hard to find docs down here). Pain mgt had his license pulled for prescribing too much.. mind you, people were coming 100’s of miles for pain mgt. Lic pulled, still waiting for court. Oncologist, same exact reason, prescribing too many. Can’t prescribe but has license. All 3 were not given chance of “weaning” patients. They (DEA, Med Board) cut everyone off cold turkey, it’s a mess. Being a border town, everyone getting heroin super cheap now. I thank God that dealing w/junkie ex and a “no more needles” policy after shots in back, spinals, etc., I’m not THAT desperate yet. This country is a mess! Good luck today. Pain patients need a few angels on their side!

    Liked by 1 person

    1. I will do some research on this as well. I am familiar with this case. The dea can open investigations based on many factors. This seems to be a classic case Of a dr not keeping records and taking cash payments. I am going to repeat this: the Dea cannot legally stop a dr from prescribing meds to you. However they can come into your practice and make your life miserable. I investigated personally at least two dozen and sent a ring of Drs to prison. The dr has a list of things they must do every visit when they see you. They must do some types of medical counseling outlining the potential medical risks of opioids. In addition, there is what is called Med’s which is short for Morphine Equivalent Dosages. The dea wants it to be between 70-90. The dr is supposed to track that every visit. So a dr that has a thriving practice is looked at skeptically because if he is doing patient management correctly they cannot see that many patients. In addition oncologists deal with meds that require even more detailed paperwork. Finally I stand by my earlier statement-any pain patient who simply accepts that a doctor has the unilateral right to cut off your pain mess without a valid reason and a plan to help wean you off the meds is wrong and ill informed.

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      1. Hi randy this is Johnny
        randy how and why can these doctors just stop giving pain medicine to there patients???

        What if someone came into the ER. From being into a car accident and they have to broken legs , a broken arm ,and 1 broken knee cap. And the patient is on a high dose of pain medicine from a previous incident. That he or she tells the the ER doctor that they are already on 80 mg oxycodone and 30 mg of oxycodone

        And the ER doctor gives he or she a shot of 5 mg of morphine can the doctor say no more pain medicine for he or she well it happened to my friend and I had to leave the ER because he was screaming sooooo bad because of his pain his way was praying to the doctors to give him more because he was on
        Pain medicine for 12 yrs he told me to get a gun and shoot me I was sooooo mad randy my good friend 56 year old father of 3 kids sitting there crying because he was in so much pain after 3-1/2 hrs the finally gave him something I don’t no what the doctor told his wife that it is not me it is this government !!!!!’

        She told me the doctor started to get upset she gave him a hug and said you are doing your best

        Imagine that randy what is going on !!!!’

        I need 2knee replacement I’m so afraid because I don’t want to be in pain in tha area of my body I’m been in pain for 14 years I just can’t do it I Said to the knee doctor what will you do to keep me out of pain because I’m
        On pain medication from a injury the doctor said I can only give you 5mg of duloted
        I laughed and showed him what I was on for pain medicine he said your allset you don’t even need anything I laughed and walked out with tears in my eyes randy I’m 55 years old I’m a father of 4 teenagers
        I feel bad for these doctors because the government threatens them
        Sorry for the long speech but I’m just angry

        Thank you randy

        Liked by 1 person

      2. Hey Johnny

        Only a doctor can prescribe meds. But the Dea can do so many things to bake their life miserable. The Dea cannot just stop a dr from prescribing. But a formal accusation that they may have given too much meds out without proper controls can be Enough to get a license suspended or having all their records scrutinized.

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      3. Hi Johnny

        Sorry for the delay. I went to see Metallica tonight and I am totally wiped as this big homie was vaping pot right in front of me.

        Have you heard of the medical term drug seeking behavior? What you described is classic. I had a claimant who worked as a phone repair tech. He would have to climb poles. He could dislocate his shoulder at will. I saw it in person and it is amazing to watch.

        Every Friday nite he would dislocate it and go into emergency rooms. He would get a nice dilaudid shot and a fist full of pain meds. Next weekend it would happen again. He was a frequent flyer.

        This happens a lot….I mean a lot! Now Er Drs go through training on this. You will be lucky if you get a pill or five. Most will give you a shot.

        One of my wurst cases involved a guy who had a big time meth habit. He would take OxyContin and then use the meth to bring him up. Well he overdosed and died. He had a pharmacy of other Ned’s in his bag. Well his family comes to the er and begs the doctor to give it to them. The dr calls the police who come and find the meds. They cared not about their dead family member only the drugs. That is what the er dr saw here. It’s wrong but it happens every day.

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      4. Lmao!!!!! About the big homie!!!

        Good band though
        No problem randy I don’t care when you get back to me did you here anything about the rally. Email me when you have time no rush I’m hoping it went good

        Like

    2. Sherry, So sorry to hear about your problems and I apologize for the delay in responding. Baby steps, but the Rally did help to make some awareness. Please see the write-up in The Fix, the nation’s largest online addiction publication. See the video link below. Email for password, please.

      Like

      1. Hi Lana I want to thank you and all the men&women that have got this rally going your great person to take charge and do something like this I really appreciate what you have done

        Thank you

        Johnny

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      2. Thank you randy hey randy last night I was watching a show on pain patients it is on after our news here in mass it’s called chronicle /. It should be called chronic pain any way they had these doctors saying that the people that are in pain are the people that just sit around all day and don’t do anything!!!!
        I was so mad that I wanted to throw my remote rate through the tv !!!!! Why do doctors say this!!!! Randy so the showed the pain center in Boston and it showed all these people playing with balloons and walking on different colored circles like that game twister and these doctors say this works randy I was going to one of the best therapys in mass I went for years i think it made me worse I have 107 pieces of receipts from
        All the shots in my back
        So how do these doctors no that going through this knew type of therapy works I just don’t understand at all I was so upset listening to these doctors last night some people were interviewed on the show one lady had siatic problems in her back the others who knows what was wrong with them how can they say that will work for me. I would like to go on that show and say come to Johnny’s make you in pain clinic doctors only and when they come to
        Johnny’s clinic I have them lay on ther belly and lower a wheel barrel filled with 800 pds of concrete and leave it there for a half hour and ask them if there ok it’s no different I’m just putting you in pain no different then what they say I just want these doctors to feel what we feel 24/7-365. Days a year how do they get away with it

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      3. Hey

        Call the station that put together the program. Ask if they are interested in an alternate view. Did they say those were chronic pain patients.

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      4. I don’t no randy they were in some type of pain it just made me mad that and when they said people that lay around all
        Day I walk every morning around my block it’s 1 mile and at night that’s pretty good I think I just found out this morning that the guy that built my house ended up killing himself Wednesday night because he was in soooo much pain because of his back he had 2 back operations in the last pass 5 years they were treating his pain st first then whenall these rules changed they just about shut him off from
        His medicine I guess they were giving him 5 mg. In the morning and a 5mg at night his wife begged the doctor for help he said he can’t anymore so he left behind 3 kids and a wife behind
        The information I’m getting that he did leave a note saying he couldn’t live like this anymore. It also said bring this letter to my primary doctor and show him I’ll get more info and let you no what really happened I no his wife and kids are devastated that is so sad randy

        Like

      5. I hesitate to ask but I wonder if the widow would allow a reprint and forwarding of his letter to the press, FDA , DEA. Congress and the President?

        Like

      6. I recieved a tex from another friend of mine and he told me the first they show is doing is going to our state rep and also the state house he was an awesome guy let me tell
        he would always help people with the houses

        And just because he had a couple of back operations he ends up in so much pain that no one would help him his best friend told a good friend of mine said they gave him like I said 5 mg 2 a day Come on that is wrong!!!!!!

        Like

      7. Hey randy the medicine he was on last year was 30 mg oxycodone because I remember talking to him about his back and my back also he said the medicine helped him a lot his doctor I think not sure was prescribing him 4-6 a day
        Then when the rules changed the doctor started to give him them 5mg oxycodone only 2 a day how can you do that to a guy that was on
        So much pain

        Like

      8. I take oxycodones. I take 10mg dosages. I do not believe they make a 5mg dosage. That means they put him on norco. No one really gets Vicodin anymore. Norco is the first level pain killer. The dr should have weaned him down.

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      9. They do make 5mg oxy capsule. I preferred that form for its visual difference between my other meds. I have vision problems and need my meds to be distinctive least i continue to have medicinal mishaps. I used to take it 3 at a time..which gave me a script for 300 every month. It sounds like a lot but it’s actually only 15 mgs at any given time. I made do with that the majority of my 20+ years. In the scheme of things it’s not a alrge dose for pain relief.

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      10. Oh okay. I didn’t realize it was a capsule. I have never seen. A reduction in meds is usually done in 5mg increments over 30 to 60 days but needs to be tailored. In his case it appeared he was working. That is the cut off here. They look to see if the person is able to work.

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  19. I am a first timer here but am dismayed to see comments of the like from Lucinda and Randy.
    Lucinda appears merely to be a troll for whom I don’t know but clearly she is not a pain patient. So disappear back to wherever you came from, and hope as Lana mentioned you dobn’t find yourself one day in the need for pain relief. Karma can be a bitch. Randy..did you ever report the guy?? Probably not and yes we all acknowledge that there are abusers of medicines ( as there have been throughout time) yet the true pain patients should NOT have to suffer and risk death because they are left inadequately treated amd refused altogether when clearly doctors have already chronicled their diagnoses. It has been proven the body biologically responds negatively to pain and to increased stress levels . Having pain patients affected with these horrendous games only increases their pain! I am disgusted by the ignorant knee jerk reactions of government in putting blanket legislations in reponse to the reactions of addicts and pary abusers like your guy. Too bad they can’t take the same energy and put it into developing better diagnosis treatment. We can have all the meetings wee want but frankly I don’t see much change unless the topic is kept in the spotlight and in the courts. Anyone can file a pro bono case against agencies or parties. I think a collaboration should try between those that are reasonably capable/physically to do for themselves and help- others in their state to file cases. Perhaps if more than one can be filed and not arbitrated that would bring more attention to the rectification of laws. Perhaps also the purchasing of minimal stock into the various pharmeceuticals to obtain member information would also be wise so we can see which DEA officials have monetary interest and thus a conflict of interest for their positon. In the meanwhile record , record and write ANY information between you and your doctor, your local agencies that may inject themselves and anyone else! Make your evidence along the way just in case. It’s easier and cheaper to do it little by little than all at once. Get your record copies after each visit, get your films on disk and take home the same day. If your doctor seems to be one of those that insists on injection have assembles the material that shows the very real harmful side effects of injections to show your doctor when arguing against injections ( that you already know doesn’t work for you ) Lastly…support your pain doctor if they should be so lucky to draw attentions from the morons. Their persecution will cost them money they can ill afford. Talk is cheap so back them up with your money for attorney’s fees as well as your showing in any meetings you may be able to attend. As pain patients we should not be comparing our pains Pain is pain ..there is no such evil a task master as pain.

    Like

    1. Forget the benumbed morally disengaged borged naive realists
      Lets work on our vision and plan for us and putting an end to the reign of witches in pain care.

      Like

    1. I was wondering the same thing and also wish I could have made it. Lana, will you be posting about it or maybe writing an article for PNN when/if you get a chance? I was hoping it would make the national news but unless I missed it, apparently it did not. Many thanks to you!

      Like

      1. It was reported by the leading online addiction publication, The Fix. The video can be accessed below, but we will need other identifying inforamation, please. We just like to know who is accessing it.

        Like

  20. First of all I would like to say terrific blog! I had a quick question in which I’d like to ask if you don’t mind. I was interested to find out how you center yourself and clear your mind prior to writing. I have had difficulty clearing my thoughts in getting my ideas out there. I truly do enjoy writing but it just seems like the first 10 to 15 minutes are generally wasted just trying to figure out how to begin. Any suggestions or hints? Cheers!|

    Like

  21. FDA put out a new anti-opiate statement using NAS babies for a sympathetic ear.
    I went to Medline.gov to research. 47-57% of NAR babies were from mothers taking Methadone & Buprenorphine…drugs used to treat Heroin addiction!!
    So much for their BS.

    Like

  22. I filed complaint with hospital & New Mexico Medical Board and was told by both, nothing was done wrong!
    Last doc I had (MD) “fired me” for questioning his competency. He was under impression that Stenosis can only be found in Lumbar area. Then he proceeded to tell me “I could no longer see anymore doctors in that group”, including my foot surgeon of 20yrs! I’ve had the top third of my foot amputated thanks to a 1500 lb cast iron steam heat radiator, constant Neuromas. Gave me 30 days to find new GP and cut me off meds.
    NM is THE WORST for healthcare!

    Like

    1. Frankly I think we should “out” these bad doctors. The good one’s should one guarded at all costs to protect their welfare but the bad ones need to be exposed for the mindsets and attitudes they have. Take their mney away from them…just tell you story true and there is no libel and slander.

      Like

      1. I agree. These Drs need to be exposed. Just as Drs who over prescribe are named ones that cut people off without some type of plan to get them off meds are just as bad.

        Like

      1. Not 1 doctor here in SW New Mexico will prescribe pain meds unless you go through surgery.

        I did find a place out of the country, where Tylenol #1 is an OTC med! Prices takes my bill money but hey, I can walk again, not too far.

        Before this, I was taking 1950 mg Tylenol every 3-4 hrs. Ultra Sound says now I have liver & gallbladder problems. I WILL NOT waste anymore time, gas, or pain, going to doctors anymore!! I’m done with the BS!

        On a different note, the pissants in the govt have approved “non-addictive” pain meds (Oxy, Hydro, etc) but they are all Extended Release! Not only are they not covered by a lot of insurances because “2 a day, costs more than 6 a day, regular fast release”, and, doctors still refuse to prescribe!!

        Like

      2. Since when do they consider oxy and hydrocodone “non addcitive? I was under the impression they thought ultram ( tramdol ) was the last pain medication they claimed as non addictive before stepping up into the opiod classification. IMO a total misunderclassification as well for ultram.

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  23. Lana

    You do a great job. Do you have any discussions on here about inter thecal pain pumps. When I was an adjuster we had a lot of docs doing these surgeries. And we had people having them pulled as fast as they could. I am doing some research for a book and want to see what is going on

    Like

  24. Johnny

    I also wanted to say this….do you ever notice that Drs, when your case comes out right, always take the credit but when it goes wrong, it’s always your fault.

    Like

    1. Randy some of the stories I read about some of these doctors are horrorfying the doctor that treats my pain he is probably the best doctor around I have been going to him since 1990 he does the best he can do to treat my pain I no for a fact that he would never ever just stop not helping me anymore I no he must get upset when he can’t help some of his patients it’s not my doctor it’s the government and he knows that even the nurses tell me some stories it’s not his fault that my back was cut open 6 times also I still believe that my surgeons knew that my back was be on fixing and they would say just cut him here cut him there put this hard ware there , the last procedure I swear they just put hardware were ever they wanted to just put it this way any other patients would of been in the hospital for 3 days but I was just so use to of pain I was discharged that night another
      50 k. In his pocket I’m the one that bought my surgeon all sorts of vehicles and summer houses

      Like

      1. Johnny of course you did. It’s just breathtaking how bad they are. Six surgeries? Wow. And you are no better are you?

        Like

      2. No randy I’m not any better there isn’t a day that doesn’t go by when I go to sleep I pray that I want wake up I just would love that to happen instead of being in this pain i just don’t understand how the government are threatening these doctors also the surgeons don’t even care about the pain that I go through it’s not fair

        Like

      3. I was afraid that my medicine would be cut down and it was. My fentanyl patch was cut from 75 to 50 mcg. I hope I can get buy with this, I’m scared! So are the drs she says her hands are tied and I go to a pain clinic.

        Like

      4. Donna

        I’m really sorry to hear about your issue. Fentanyl is in the crosshairs if everyone. Did your dr explain what was the rationale behind it?

        Like

      5. I am co0nfused that they cut it down instead of cutting it off although God forbid they do that . Others as we sadly know have suffered that fate. I don’t know to what rulings or explanation your pain DR told you about so did you ask him/her what rulings her hands are being tied with ?

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      6. Hey randy my wife is a nurse you should here some of the stories she tells me about try to help her patients 6 of her friends retired because they are so sick and tired of this government threatening these doctors this one nurse who worked for 33 years all of a sudden just retired she said that she is so disgusted with these knew laws about giving out pain medicine to these patients that are recovering from a operations 10 years ago the doctors would give a patient pain medicine to be comfortable while they are recovering now the doctor would tell this nurse give him
        Or her this type of pain medicine and the nurse would say to the doctor are serious this will not do anything so she would do what the doctor would say and she would watch and listen to the patient say I’m
        I’m so much pain all night
        That’s real nice ha

        They tried to do it with my mom after her surgery she is 80 years old she had her A-orda operated on after surgery she was complaining about her pain so she was already on
        Pain medicine and the doctors no that so I’m just sitting there talking to her and she said Johnny im in a lot of pain so she pushes the button nurse comes and said ooo sweetie you push the. Button that is set to release pain medicine well my mom
        New that I go get a coffee in the caf I come back up the doctor is there my mom
        Is in so much pain we’ll
        Let me tell you I flipped and I told the doctor that I no all the rules and my mom is in
        Pain if you don’t do something I’m calling all the news stations
        I don’t no what happened but security escorted me out of the building and my sister had to come to sit with my mom this all happened last December
        Imagine that I’m a ticking time bomb ready to blow up

        Like

      7. That is all from Dr Andrew Kolodny from Physicians for Responsible Opioid Prescribing. Truly a dangerous dangerous man.

        Like

      8. I took a look at this guys website for Phoenix House. I’ll assume this guy has the best of intentions but as I read the stories the one thing I did not run into yet and I read about 16 of them was that they has been pain patients and fell into abuse of the drugs. All of the people seemed to have underlying unresolved emotional problems that led them to try to escape, forget etc. as most addicts do. I do have the utmost sympathy for anyone having emotional problems but it is highly unfortunate that this guy is theoretically a policy maker when he is obviously blinded by his own particular experiences with the segment he deals with. That can be a big problem when one does not step back from the picture in order to be able to see the entirety of the image. Professionals tend to see the world with their particular color of glasses.

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      9. I apaprently mispoke on a previous post about the Phoenix Hosue stories……I mean to say that were NOT pain patients. They suffered from others disfunctional primarily. To allreaders if you haven’t guessed by now I have my fair share of typos and dyslexic types spelling. I suppose its my fervor in the moment and there’s no edit option on this site. I’ll try and do better. 🙂

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      10. lol. No worries. He always talks about Drs that have a relationship with Big Pharma. I think we have to point out that some Anti pain docs are hooked into big Rehab. This is the thing-medicine had sold America the promise of rehab for fifty years. Yet for most people with a documented abuse issue it will take several attempts at rehab before they even START to make progress towards becoming clean and sober. And for many pain patients they still have not been treated for the problems causing their underlying pain.

        Like

      11. Hey randy do you no if there were any doctors at the rally that were taken our side and believeing what we are all going through?? Some times I just wondering if they do believe us pain patients

        my friend texted me this morning and said that the guy I knew that committed suicide his wife went to the state house with all of his back operations MRI,all the shots he was giving and the medicine he was prescribed and when they changed his medication I just hope that someone listens to her and understands her I guess the oldest boy found him I just found that out yesterday
        He is a 9th grade so not only is his dad gone the. Boy is all messed up now. That makes me soooooooo mad and angry randy!!! Imagine that

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      12. Hey randy it’s Johnny did you check out the videos at the rally

        They were all awesome!!!!!
        Randy I just hope those rude people in office at least take 1hr out of there 8 work day and watch them ttyl randy

        Like

      13. Hey randy it’s Johnny again I want to do another rally but I don’t no we’re to start I would like to maybe have a day were all us chronic pain patients can just go to there local state house and make up some signs randy And stand or sit outside there local state house or have for 2. Days 3 days whatever it takes randy do this in every state across this country!!!! Do you think that will work???
        I’m just sitting here thinking about stuff do I’m sick of this shit!!!!!!!!!!!!!

        Liked by 1 person

      14. Hey Johnny

        Of course it would help. So how do you get it started? Do you want a letter writing campaign? You gotta think clearly how you want to do it. I can’t get involved just yet due to litigation I am involved in. But I support you.

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      15. Do you have any Drs there who might be willing to be your advisor? You need some people to stand up for you. The story about your friend who died is a beginning. Could you get someone in the local media interested in your story?

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      16. His wife did go to the state and well mam we are just cutting back on all pain medication people out there are getting hooked on it and dying from it

        Another year there won’t be any pain medicine it will be like what they did in 1898 the stop selling morphine if that happens there will be another guy taking his life

        Marines don’t go to heaven the go to hell and regroup!!!!!!!

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      17. Yes they do. But it is unethical to cut someone off cold turkey. Did your friend od on the meds he was prescribed? Did the dr provide him a reason why he was cut back? To me, this was a classic weaning case.

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  25. Great randy- i certainly can appreciate the need for conversations and exchange of experiences, ideas, etc. I do it a lot myself and see it as necessary. But is not sufficient to address the core problems in pain care that are oppressing people and adding greatly to the perfect miseryo f pain. Since you have lots of experience and some knowledge of issue in pain care- whats your plan to address the issues in pain care? I have outlined the core concepts of my plan in my comments to the NPS which are available via FOIA- and have reviewed the comments of others on the NPS. Its clear that the cmmentaers from numerous medical organizations were only circling the wagons to get money from the NPS- none f them had vision-and none of them had much of a plan. And as I wrote its a terible thing to see and have no vision-thats the first problem in pain care today- no real vision-and people are perishing without a vision. Most folks in medicine are trained t be go along to get along and are too instrumental in their focus to have a vision. And the 80 so called experts who created the NPS- clearly they have no real training in implementation science- as my comments made clear.
    Some may see NIH and IPRCC and medical organizations like APS or AAPM or CPATF as ur friends= i do not for they lack vision for sure and again when it comes to planning skills theyre lacking as well. They havent yet learned the meaning of Kants “sapere audere” and they have nt freed themselves from the social r political unconscious. And while i have read more then a few boks and articles by experts i am not spellbound by them- on the contrary i see their many limitations and shortcomings. All of them individually and collectively fall short of what is needed.
    So Randy whats your vision and whats your plan?

    Like

    1. Hello everyone. Have you seen the video of Drs. Richard Lawhern, Dr. Jeffrey Fudin, and Ken McKim with Don’t Punish Pain? Here is a link to all speakers at the Rally for your review. I apologize that I haven’t been moderating these comments … the Rally really took a lot out of me and it took me a while to get beyond my sleep disorder and multiple other medical problems that were exacerbated by my efforts in putting together the Rally. I, too, suffer from multiple medical problems which are greatly affected by stress and anxiety. I’m another one with “invisible illnesses” … people just don’t know. At any rate, here is a link to the speeches

      https://vimeo.com/album/4219974

      Password: view

      Enjoy the videos!

      Lana

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      1. Hi Lana it’s Johnny I just want to say thank you so much Lana for speaking at the rally you did a great job Lana you are a awesome lady I wish I could of been there to meet you and also every else I also want thank every one that got up at the rally and spoke the videos we’re unbelievable I loved every one of them I really appreciate every one that got up there

        Thank you so
        Much Johnny

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  26. Thank you fit putting together this rally and sharing the videos! Is there a way for me to contact or speak with many of you, especially Randy and those who have been active on the front lines of this battle?
    I am both a pharmacist and a patient.

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    1. As a pharmacist, I am curious to have your views as to what’s going on. Are you in agreement with the pharmacies’ choices to refuse to fill legitimate prescriptions for patients who have followed all the rules and are only trying to maintain the best quality of life possible?

      Like

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