FDA Solicits Public Comment on Pregabalin, Tramadol, CBD and Several Other Drugs

FDA Solicits Public Comment on Pregabalin, Tramadol, CBD and Several Other Drugs

By Donna Gregory Burch.

Do you use pregabalin (Lyrica), tramadol (Ultram), cannabidiol (CBD) or ketamine (Ketalar)? If so, the U.S. Food and Drug Administration (FDA) is seeking your comments on the “abuse potential, actual abuse, medical usefulness, trafficking and impact of scheduling changes on availability for medical use” of these drugs and several others, according to the Federal Register.

Donna Gregory Burch

The request comes after the World Health Organization (WHO) notified the FDA that it is considering international restrictions on these drugs. Submitted comments will be considered by the U.S. Department of Health and Human Services (HHS) as it prepares an evaluation of each drug for WHO.

The HHS evaluations will not include recommendations on whether these drugs should be subjected to international controls. “Instead, HHS will defer such consideration until WHO has made official recommendations to the Commission on Narcotic Drugs, which are expected to be made in early 2018,” reads the Federal Register notice. “Any HHS position regarding international control of these drug substances will be preceded by another Federal Register notice soliciting comments,” as required by federal law.

All comments need to be submitted online or in writing by Sept. 13. Click here for full instructions on how to submit comments.

Feedback is being requested for the following drugs:

  • Pregabalin (Lyrica), an anticonvulsant drug that’s used to treat fibromyalgia, diabetic peripheral neuropathy, post-herpetic neuralgia and epilepsy. There have been reports, especially in the United Kingdom, that some people are taking high doses of pregabalin to achieve euphoria.
  • Tramadol (Ultram), a synthetic opioid that’s commonly prescribed for moderate to moderately-severe pain. It is a schedule IV controlled substance in the U.S. 
  • Cannabidiol (CBD), one of the active cannabinoids in cannabis. Unlike THC, the most well-known ingredient in cannabis, CBD does not cause a euphoric high. It has been shown to be helpful in the treatment of epilepsy, nerve pain and other conditions. Several cannabis-based CBD products are currently being studied in clinical trials in the U.S. CBD from the cannabis plant is listed as a schedule I controlled substance in the U.S.
  • Ketamine, a general anesthetic that’s used for short diagnostic and surgical procedures. Some private clinics are now offering ketamine infusions for chronic pain.
  • Ocfentanil, a synthetic opioid that’s similar to fentanyl. It has no approved medical use in the U.S.
  • Furanylfentanyl (Fu-F), a clandestinely produced synthetic opioid that’s similar to fentanyl. It’s commonly abused and connected with fatal overdoses. It has no approved medical use in the U.S.
  • Acryloylfentanyl (acrylfentanyl), another clandestinely produced synthetic opioid that’s similar to fentanyl. It’s sold illegally on some websites and is known to have addictive properties. It is not approved for any medical use in the U.S.
  • Carfentanil (4-carbomethoxyfentanyl), a synthetic opioid that’s approximately 100 times more potent than fentanyl. It is approved by the FDA for limited use among veterinarians for immobilizing large animals. It is not approved for human use, but is commonly laced with heroin and sold illegally in the U.S.
  • 4-Fluoroisobutyrfentanyl, a clandestinely produced synthetic opioid that’s similar to fentanyl. It has been implicated in several fatal overdoses, and is not approved for any medical use in the U.S.
  • Tetrahydrofuranylfentanyl (THF-F), a synthetic opioid that’s similar to fentanyl. It is not approved for any medical use in the U.S.
  • 4-Fluoroamphetamine (4-FA), a psychoactive substance of the phenethylamine and substituted amphetamine chemical classes. It produces stimulant effects and has been linked to fatal overdoses. It is not approved for any medical use in the U.S.
  • AB-PINACA, a clandestinely produced synthetic cannabinoid agonist that’s approximately 1.5 times more potent than THC, the active ingredient in cannabis.  It has contributed to cases of overdose. It is not approved for any medical use in the U.S.
  • AB-CHMINACA, a clandestinely produced synthetic cannabinoid agonist that is approximately 16 times more potent than THC. It has contributed to cases of overdose and can cause death.
  • 5F-PB-22, a synthetic cannabinoid agonist with effects similar to THC. It is used as an ingredient in herbal products and is smoked for its psychoactive effects. It has been linked to fatal overdoses, and is a schedule I controlled substance in the U.S.
  • UR-144, a clandestinely produced synthetic cannabinoid agonist. It has been detected in herbal smoking blends sold as incense, and is a schedule I controlled substance in the U.S.
  • 5F-ADB, a clandestinely produced synthetic cannabinoid agonist. It has been temporarily listed as a schedule I controlled substance in the U.S.
  • Etizolam (Etilaam, Etizest and others), a benzodiazepine, which depresses the central nervous system, and is used as a treatment in some countries for insomnia, anxiety and seizure disorders. It is not approved for medical use in the U.S.

WHO’s Expert Committee on Drug Dependence will meet in November to review these substances for potential “dependence, abuse and harm to health, and will make recommendations to the United Nations secretary-general, on the need for and level of international control of these substances,” reads the Federal Register. 

For more information on the FDA’s request for comments, you can access the official Federal Register notice here.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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Authored by: Donna Gregory Burch

There are 27 comments for this article
  1. Rachel at 5:16 am

    TRAMADOL, KETAMINE AND LYRICA (ie Pregabalin). I have been on all of these at times. Tramadol was a very good painkiller for me and I am going back on it for breakthrough pain. It does have one of the highest psychiatric side effects profile for any medication so just be aware when you are started on it. I was fine. Ketamine I have had in hospital settings and it has worked well. It helps prevent tolerance to opioids developing too, Lyrica I took for a couple of years and it did not work, as the researchers have now found it only works for <30% of patients. It also made me gain two dress sizes in weight. Had to get a whole new wardrobe. Weight fell off without dieting when I stopped it. Lyrica was the zeitgeist wonder cure for a few years in the mid 2000s, because of drug company promotion of it. This shows how receptive doctors are to pharmacy company advertising. What these regulators have to understand is that the human body has 5 different types of pain receptor so for most patients all 5 will need a different medication, I take 6 different pain meds all prescribed by my Pain Management consultant. One is quinine sulfate because that releases muscle spasm. There is constant review and adjustment because of side effects but all these are ok. The fifth pain receptor is for cannabis so for those of you with legal access it is a great painkiller for many people. Not legal here in the UK. I I have had no trouble getting my prescriptions until recently: assaulted in A&E when my Consultant sent me there as my meds had been stolen, and Primary Care Physicians I have been bullied appallingly by: they have no training in chronic pain and don't understand why we are on such heavy duty meds and so many. The bullying has upped my pain permanently so it will never be medically controlled now, it is too severe. In my view and it may be because I don't get side effects from cheap as chips long acting MST, opioids are an essential part of the pain armoury in many cases. I could not tolerate the synthetic opioids which appear to be the issue in the US: hydrocodone, oxynorm, fentanyl etc. Doesn't that tell us something that the manufacturers are making these opioids for profit when they may not be the healthiest option for you? Straight morphine sulfate does the job for many of us, I have never had issues with Pharmacies, I can go where I like. Do you not have laws of consent in the US? Here if a medic breaches your consent wishes it is a criminal offence. You can refuse anything including drug testing – something we don't have in the UK.

  2. Barbara w at 10:51 pm

    I used to receive way more pain medication than I have now where I could take care of elderly people twice as long. My ability to do that job is cut down to a third cutting my ability to earn more money, listening to my fellow pain patients regarding the one track mind of parents loosing drug addicted loved ones, we’ll our families are extremely upset over the treatment that we have received like we are addicts. Some have lost to death or suicide their chronic pain relative too!! We really need to make a DVD on all of our stories! Have someone like David Muir put it on CNN & we can make many copies for all different stations and news media,social media etc. If we hire LEAP to speak in different arenas they will elaborate on the subject of Opiods, pain & the government involvement & DEA should stay out of the medical profession. They have done whistle blowing on the involvement of our government falsely arresting people confiscating all drugs showing the financial gain of it. Also state that our own DEA etc is responsible for the bad Heroine coming back into our poor neighborhoods & inner cities again for financial gain (on the take) LEAP = Law Enforcement Against Prohibition comprised of CIA agents Ex DEA Da,s Judges Narcotic detectives, prosecutors x FBI & regular Law Enforcment 100,000 members all over the world!(larger initial reason behind the propaganda Epedemic billion $ industry ) I’ve been told the higher agencies
    Control the funding for FDA & CDC (they probably won’t post this but part of what we are up against when trying to hire lawyers even though all the rights are on our side will see)

  3. Angelica Heavner at 10:16 pm

    Apparently whoever is approving the comments is picking and choosing the ones they want as my last one wasn’t posted. So let me try again. Vickie, I am pretty sure I saw the post about a yr ago. If I remember correctly they were starting in major cities first, as a test run, if it works they would expand to more cities with high od rates.
    Rachel, mine was started by carelessness in a hospital, proven in court as I won my case against them. They were found guilty of all 3 charges. My case is one of the few to win against this hospital. My attorneys believe it was because I did everything right, right from the start of it. I gave them every opportunity to fix what they did. The only thing they did was send me to doctors, pay for prescriptions and change my records, which didn’t as I already had a copy.

    Like most I think all of us have lost someone we know to drug overdose whether accidental or just thinking I can handle it. I lost my brother 5 yrs ago to an accidental overdose. I don’t blame anyone but him. He had so much to live for but the pain was to much and he miscalculated the times and dosages. It happens. I dont blame the drugs, the doctors, the pharmacist or anyone else. He did it and no one else had anything to do with it.
    Some pain management doctors are warning their patients before they need to start cutting back, lucky for me mine is one of the doctors that gave warning.
    Good luck to all.
    Please listen tll)

  4. Barrow at 4:14 am

    I left a comment here but I guess it wasn’t approved. Too sick to rewrite. My pm doc of over ten years cancelled all our appts at end of June and appears to be gone. Steady drip of running out of my meds since. Sick and too weak to drive even if I knew where to go. Not to ER, that’s for sure. Live alone. Have to be others suffering like me. Why wasn’t my comment posted? Will this one be? I don’t even care except are others like me being shut out of discussion? Won’t try again but felt bad not saying this one more time. If we lose empathy for each other, all hope is gone, I’m afraid.

  5. Rachel at 11:35 am

    @Cassandra Well the UK press is reporting the US Opoid crisis here and about 60 UK deaths here last year from druggies taking heroin cut with versions of Fentanyl. So they are trying to generate hysteria here. I have complained to otherwise responsible news outlets eg Channel 4 News. The latter is an old story the deaths stopped last year also to their surprise haha! These families of dead addicts just don’t know about chronic pain sufferers. They are ignorant more than selfish I would guess. Pain needs to be talked about as the NEUROLOGICAL disease it is, like MS or Autism. Incurable but gets worse with stress. My Pain Doctor calls CP
    Treatment PALLIATIVE CARE FOR LIFE. That would get more public sympathy. Some us as bad as terminal cancer patients and our pain works the same way. Some of us on as many meds too. I have a DNR and will make a living will ie. Advance Directive.

  6. Casandra at 8:39 am

    I believe it’s the families of druggies whom died that have tried to get them help but they refused. So now the families only have one track minds, to Feel better about their sad story of their addicted loved one. These families are not thinking of anyone but themselves and the wacky government follows suit.

    These are self centered families who only care about their own past hurt, not about anyone else who has legitimate chronic pain issues, who don’t abuse opioid!!!! Yet they are so freaking selfish, self centered families who only care about their own past hurt. Because their loved ones wanted to use drugs to get HIGH, not because they had legitimate chronic pain issues, and more severe chronic diseases.

    Yes, the government should listen to the UK, because opioids should be taken on a regular basis to control our pain not get us high.

  7. Casandra at 8:29 am

    For Vicki Weeks, drug houses also called safe houses, some are shelters as well, all backed by government. Many, many drugs are used, distributed in and around these places, which they all say no drugs permitted. Yeah right, a lot of the workers are providers of drugs and users. I know this since I had a sister who was a drug user of just about anything from oral to shooting up. Unfortunately she passed in 2004, from a heart condition she had as a child and kept refusing treatment, but the drugs didn’t help one bit. Actually she had shot up with heroin between her toes the night she died. Also know of many other people who have been in and out of shelters in different states, all say the same thing, you can get whatever you want drug wise from inside those places. Very few people come out clean from these places,I mean very few shelters, drug houses, safe houses. These folks are the ones who really want to get clean and make a life for themselves.

  8. Casandra at 8:18 am

    I have been using Lyrica 200 mg a day for about three years now and it’s helping my neuropathy. Of course I started out at a lower dose and worked up to a dose that works for me. I do not find this medication addictive at all and shouldn’t be classified as a level V. CBD is not addictive but helps certain people, just like marijuana helps so many people take the pain away, it doesn’t mess them up like meth, heroin either, it’s a shorter lived type of medication. Yet there’s so many of us chronic pain patients that can’t use CBD or marijuana, not injections, nor a lot of medications on the market due to severe side affects. So that’s why we were on medication cocktails we were on. Yet many people could still work, all could function on whatever concoction of medications they were on, since it took a lot of their pain away.

    I have failed back syndrome, severe chronic pain, 2 fusions, piece of metal in my L5S1 nerve, and L3 is bulging. I’ve tried so many medication on the market to find only one medication to work for me which is morphine. Yes, the government has taken away almost 50% of my pain medication which has left me in such severe chronic pain all the time it’s hard to function, or do anything, or have a quality of life.

    Yes, I’m off track but No one listens to us legitimate chronic pain patients suffering, all the government cares about is the druggies whom knew what they’re doing so they’d get a high. The government, CDC, FCC, WOW all need to stop saying we have an opioid addiction problem since we don’t. The problem we have is that there are so many people who have been abusing drugs since they were at a young age, who know what they’re doing. Parents knew their loved ones were on cocktails of drugs, feel helpless because they can’t/couldn’t help them. So now all these helpless parents are “crying wolf” saying it was the drugs/ medication that caused the problem. No, it was their loved ones who chose that path and didn’t want help. I lost a sister to drugs, yet I nor my family is out there suing everyone because we couldn’t help her.

    So why are we “severe chronic pain patients” suffering due to their loses? Don’t we get to have a quality of life again? We all lost our quality of lives when the government/CDC,FCC,and WOW decided that we’re all addicts! Which is not the case, we’re not the ones abusing our medication, we take it for PAIN not to get HIGH!

    I’m sick and tired of being classified as a druggie, having the pain management doctors treat us like we’re the druggies taking more and more of our medication away. We’re not the ones that were selling our medication, we took it because otherwise we couldn’t stand the pain. Us chronic pain patients need our medication back, not being lowered, since this government rule that started back in February 2017,there has been at least a 33-40% hike in heroin overdoses if not more in areas. Yes, that’s due to so many chronic pain patients being lowered of their own medication levels and can’t stand the pain anymore. So they’ve sought other means, which has caused them death. That I blame on the government,CDC,FCC and WOW.

    We want our medications back so we can live a quality of life. Otherwise what’s the point of living right? Everyone in the government, CDC,FCC, WOW all need and have their quality of life, so why not us??? Not one person’s pain level is the same, some people have higher pain thresholds that need higher medication, medication metabolizes differently for each person. Some people need less medication than others. Again, no one takes that into consideration either. Not one person in the government, CDC,FCC or WOW knows what chronic pain patients go through on a daily basis, unless they themselves have suffered.

    Why can’t we get anyone to listen to us legitimate chronic pain patients????? We’re the ones really getting screwed by doctors, government, every one anymore.

  9. Vicki L Weeks at 4:38 am

    Angelica Heavener: I do my best to keep up to date with everything our government is up to on the current ” war on drugs”. I have not heard a word about these drug houses that you refer to that are staffed, assumedly, by some government entity. Can you recall where or how you heard of these?
    Drug houses have been used by addicts for years as a safe place to hang out and use drugs. The component of an “overseer”, for lack of another term, is beyond ridiculous.

  10. Rachel at 12:48 am

    PS Angela: I’m a Psychotherapist (who can no longer work because of pain): addicts are people in massive emotional pain and safe houses I think are a good idea. They need compassion and treatment just as we do. I can understand being angry with them but they have a different kind of illness. Happy people do not take drugs. Western Society is pretty sick in many ways. Even here I see a new Primary Care practice today and had all my pain notes faxed to them by my specialist who is 400 miles away so that they won’t think Im an addict when I go in for all my prescriptions today. I am so new there they won’t have my notes yet. So there is bad practice here too ie thrown out of ER with no treatment 3 times now and assaulted twice but that is sheer ignorance. The nurses who assaulted me would not say it but clearly believed I was an addict despite my paperwork. Their injury to me has cost me use of my left arm. Well they are professionally bound not to treat anyone that way addicts or not. We are all human an need compassion. Yes I am suing because they got the police not to attend me and to lie to cover for their criminality. Suing the police as well who thought I was stupid they lied so much but when I told them I am a journalist also they jumped! Pathetic.

  11. Rachel at 12:28 am

    My heart breaks when I hear about this. I realise how hard it is for N American pain patients: I have a Canadian relative going through this – she is allowed painkillers 2 days a week. It is such bad medicine. Could I suggest a campaign to make them aware that the stress makes your pain permanently worse? Because it will, so it is medical negligence and Personal Injury to treat you that way? I don’t know if that is worth a try. It is the actual science though: stress is the worst thing for pain. Pain education for medics is actually pretty rare – that is a huge problem here as well. Send you hugs.

  12. Angelica Heavner at 9:09 am

    Rachel, definite differencesbetween the country’s, than again there are differences between doctors and states too. Anymore in the US we are all lumped into the same category “drug addicts” if we are on opiates. Doesn’t seem to matter why, or how responsibly we are. Even pharmacists are accusing patients of being addicts and refusing to fill prescriptions.
    Right before I went to court against the hospital that caused my disorder, the hospital’s attorneys asked about 3 drug tests that showed up some other med. I had never been told about it, had no clue it was there, and was pretty pissed and confused as I signed a contract and if there was something else in my test my doctors should have told me and dismissed me as a patient. Come to find out two of my other meds can show up as the one in drug testing if on long term and my doctors knew that and that’s why they didn’t say anything. The specialist, theirs and mine, said the same thing in court when they went over my medication list for the time that it showed up. Unfortunately I know alot of people being dismissed from their doctors because of a similar situation and several have committed suicide since.
    The war on drugs here has hurt so many honest pain patients that it has gotten ridiculous. The worst part of it is the drugs are brought in by the government first and now patients are paying the price.
    One of the other things I get annoyed with is they are putting in what they call drug houses. Some place people can go to do drugs with staff to help prevent overdoses. Make sense?

  13. Rachel at 5:12 am

    @Angelica there seems to be a different culture on pain management protocol in the US and the UK. In the U.K. We are all taught why you MUST take all your meds regularly and not skip them on better days. This will not make you more likely to become addicted. It will control your pain better and give you a quality of life. There is only a 1:3000 chance of addiction to opiates and US doctors just don’t get that. Addiction means COMMITTING CRIMES TO GET MEDS. It does not mean dependence which all opiate takers will get and is not a bad thing: cut down doses when medically advised by no more than 10-20% pw and you will be fine with no withdrawal symptoms. Putting yourself on and off opiates depending on the day will just unbalance your pain regulation system and make you worse. This is where North American doctors are so wrong. Refer to the British Pain Society website for proper medical guidance on chronic pain medications including on opiates. It is the pain doctors in the U.K. Professional organisation so all advice backed by best practice research. Also painscience.com is excellent.

  14. Jamie at 5:32 pm

    I have a big problem with the government and now International associations are limiting or restricting the use of meds for chronic pain patients. Those are the people that use these medications. There’s always going to be people that abused anything they can get their hands on. But there’s also those of us that need these medications to lead a semi productive life. I don’t think any of these should be restricted. I think that in the United States there’s already a problem with pain patients getting the appropriate treatment because of the opiate crisis. And now they want to internationally control other types of medications that help with pain. The Lyrica is crazy, CBD, the only harsh drugs on that list are the fentanyl in the fentanyl derivatives. The rest of them are what we have to use now that we can’t get opiates anymore. It’s ridiculous. If WHO would like to restrict anything that can be abused or has abuse potential then you might as well take every single medication and make it illegal, you also need to get rid of alcohol, cigarettes, legal marijuana, sugar, soda, gambling, I could just go on and on and on. People that have addiction issues will always find something to abuse. Taking these things away is just going to make it harder for the people who are legit pain patients.

  15. Angelica Heavner at 9:50 pm

    Rachel, here in the US we have to see pain management once a month to get any prescriptions for medications. We are also drug tested (depending on the state and doctors) every 3 mths to make sure we are taking our meds and nothing else. Its a catch 22 as most insurances will not cover the drug testing that frequently or pay for pain management. Mine doesn’t cover any of it. Just recently they even stopped paying for prescriptions. Most of us wind up having to pay out of pocket for it. Mine is 150 dollars for the doctors every mth. My doctors are 45 min away. In order for my insurance to cover I would have to drive 4 hrs away, one way, and they have already told me they are going to remove all my meds and start over again. I have been stable on my dosage for 4 yrs, other than a really bad round during court a couple yrs ago which caused mine to spread again before we got it back under control. Stress and weather will effect most of us.
    I too had more luck with morphine than some other meds. I had allergic reactions to alot of meds they haven’t seen, I am a little rare. Right now I am down to the last few meds they can try so I am leaving the others until I have no option left.
    As for the way to take the meds. My pain team doctors told me it was ok to push it as far as I could or if I didn’t need them dont take them. They also did tell me when in pain dont put it off to long. Truthfully I am scared of addiction to them and they know it (my doctors). My life is complicated enough with 3 special needs kids (technically adults now but still need help), my stepdad has cancer (stage 4), and and add in my CRPS/RSD and life is fun, lol.
    Keep fighting

  16. Rachel at 7:31 am

    Firstly no pain patient should stop or avoid their regular meds, even on a good day. Your CNS is sensitised to make pain and the only way to help it medically is to calm it down as much as possible by treating all your pain receptors constantly. You must therefore take all meds regularly before the pain sets in. This has been official medical best practice for a long time. If you start to use your meds properly they will work better and you might be able in time to gradually reduce the dose. Tramodol and Lyrica do not work for everyone. Tramadol has a the most severe psychiatric side effects profile of virtually any Med. Some people will tolerate it and others won’t. Lyrica did nothing for my pain and made me gain 14kg which fell off without dieting as soon as I stopped it. Gabapentin the same but worse as made me severely depressed as well as gain weight so my pained body had to work harder to carry me. Again, depression lifted when I stopped it. Different patients require individually tailored meds by Pain Doctor. That requires multiple visits over time which are just not available in the UK where I live unless I pay privately for my pain doctor. I agree opiates work but interestingly only morphine sulphate itself, the most uncomplicated and simple opiate is the one I can tolerate and tolerate very well. Ten years on a high dose plus four other pain meds and I can still cut down when we have found another Med which helps. Cut by Max 10-20% a week. The ‘designer’ opiates like hydrocodone, oxynorm and fentanyl I cannot tolerate which tells you something: the drug companies are making money from high side effects opiates when a plain and simple cheap one will do. Many epilepsy meds are effective for neuropathic pain eg. Oxcarbazepine, valproate etc. Again it takes time to fiind one that suits each individual. We have five different pain receptors in our bodies and for severe pain all must be treated with different meds. The 5th receptor is for cannabis which is why it is such a good painkiller. Still illegal in the UK for all patients except MS. My doctor sits there telling me to get it on the street as I have no choice under current law and how much of INDIKA/Sativa will ne best for me. Nonetheless our situation in the UK is far better than yours in the USA. Doctors prescribe if you require them and centrally acting meds like this ie. Not NSAIDS are required because chronic pain is generated by your Central Nervous System ie. your brain. Yes there is a war in the sense that only two UK Medical Schools teach pain and most health staff have no idea that it’s a neurological condition, scans etc pointless for most sufferers. Therefore these staff become very abusive when you know more than them about your condition, a catch 22 as first line treatment is to teach patients how pain works so they can self manage, the main plank of treatment even when you are well medicated. I have been assaulted twice by ER Staff and bullied countless times making my pain much worse because of the stress. Stress is the enemy of oain it increases it usually permanently, we have to change the way we live when we have CP: a quiet life, do one thing only at a time, regular sleep if you can and pacing, and no overstimulation. One of my pain team says all his patients living in London have had nervous breakdowns. That is because it is over stimulating and a tough city, it was my home but zi had to leave to lead a quiet life in a rural area. This does not suit my personality at all and I have lost my tribe. Many of you will have noticed you get overwhelmed and lose your tempers or feel confused very easily, this is because all the neurotransmitters in your brain have permanently rewired to all fire at once unlike in normal range people and the brain and central nervous system does not distinguish between the physical and the emotional. The severe emotional symptoms of CP are unfortuneatky skated over in the literature but they are real and need to be understood as fear reactions, not aggression, people feel your fear and think you being I0aggressive is causing it, it is not, they are feeling your fear through the well known psych, phenomenon of “the transference”. This is still a taboo subject.

  17. Maureen at 12:51 am

    No one in the government will listen. Addicts will always make those of us who are in continual pain look bad. The government does not look at the number of those in contuous pain, from many conditions, but only at the addicts. What is the use of complaining

  18. Claudia at 3:03 pm

    This is really unfair and disgusting! I get that some people abuse drugs but no matter what you do people who want to get high will always find away! because of a careless driver my quality of life was reduced next to nothing. I suffer from a nervous system disorder that causes excruciating pain (CRPS), along with other mechanical pain (bones etc). After many years of waiting (I live in Canada ) for specialist and pain clinic, I finally get some quality of life back for a couple weeks after ketamine infusions. I also have other prescription medications that are part of the overall treatment! Without these medications my life would be even more hell than it is and I’m not sure how long I could deal with that pain without any pain relief. It is inhumane to let people suffer voluntarily because of a small percentage of addicts who choose to use and not go to rehab and get their life back on track. I’m not saying this in a mean way. I would totally support Society offering rehab treatments to give them a real second chance. But not at the expense of chronic pain sufferers. You can ban all the drugs you want there will always be a new one popping somewhere on the streets. In canada 5-6 years ago we had problems with people abusing oxycontin. They banned it completly and look at today, they switched to fentanyl. And one more point, chronic pain patients get their medications at the pharmacy and it is closely monitered (here anyways) and very stricts. Some provinces you have to bring back your old fentanyl patches to get new ones. Theres many measures. Drug addicts will mostly get their drugs from a dealer. I think it is a basic human right to have the right to a quality of life and to not having to needlessly suffer. And if society wants to fix the problem they need to find the root of the cause. It is the only way we will curb this problem. Band aid solutions never work long term.

  19. Ibin at 1:24 pm

    Yeah, it is a “war” declared on patients with incurable, severe, continuous pain. Reduction or removal of all scheduled, controlled substances to “one and all” is a discriminatory act of new “policy” which is unsubstantiated, unwarranted, and an act of patient abandonment. We should NOT have to be fighting for the right to be treated, individually, by licensed physicians with a DEA number.

    It WILL literally take an act of Congress in this “opioid crisis”. The only crisis is the lack of authority to be physically examined, recurring testing and drug screening, ( if in pain management) by our providers who DO HAVE the proper education and ability to prescribe opiate medication to patients in pain through due diligence to assist the patient to be able to possibly achieve the most basic daily acts to simply survive in their health condition.

    The patients testimony, backed through documented prescribing and end results of positive outcome is being ignored. The “experts” can not hear or see, or care to realize that opiate medications DO HAVE positive health results to the patient…….in pain. Decades of documentation with EACH INDIVIDUAL: patient has been ignored to achieve impossible goals. Goals of “stopping” drug abuse, misuse, and re-distributing. Our physicians KNOW their patients and their patients medication needs. Their hands are tied. 90 mme is the limit of prescribed medication……… to all patients in pain, short of a cancer or “end life” pain easement.

    The end negative result of 90 mme daily is costing patients their employment, default on their home mortgage payments, with a very bleak future of even survival. IF the “experts” were afflicted with incurable pain generated through disease or injury, surgical screw ups that are NEVER addressed, they would NOT be singing the same song. The song that ALL people using opiate medication are the core problem of drug abuse. So the answer is to remove opiate medication prescribing sufficiency from our providers. An ASININE result of the experts resolve to the VERY few pain patients that misuse or abuse medication.

    IF testimony, backed up with documentation of the pain patients treatment were actually viewed and truly considered, then we would not be searching for answers or considering alternate forms of pain easement that may be illegal or harmful With controlled, scheduled, pharmaceutic ally manufactured medication, the providers KNOW what they are prescribing AND the effects which are explained to the patient….by the providers. THEN the patient is observed, evaluated, examined, screened, and expected to be responsible ( which the OVERWHELMING majority are) and a positive result is achieved with medication. If it’s not broke, then it don’t need fixing. The entire attempt at “social reform, conformity” from DOT/GOV just pi$$es me off and is destroying our ability to complete the simple tasks of everyday life.

    I suspect that every patient with incurable pain has attempted to find an alternate way to ease our pain. The flesh WILL yield to pain. The cost of kratom, which is insufficient for severe pain relief but, does have properties that seem to aid with withdrawal symptoms of opiate medication that we have been ridiculously reduced from, can be overwhelming. In the states than any marijuana use is “prohibited”, the CBD oil products from the “hemp” plant are not sufficient for continuous severe pain and are very expensive to even try.

    Typical DOT/GOV probing “after the fact” of sufficient medication removal from the providers palate of possible, proven, positive medication for the patient with continuous pain is welcomed but, I fear the insight into the patients difficulties will again be…….ignored. I can’t help it, the entire charade just pi$$es me off.

  20. Pain is my name. at 11:29 am

    AMEN Grey! I feel exactly the same and couldn’t have expressed it better than you! I’ve never posted but couldn’t resist.I hope someone who cares will read these posts. Suicide rates will go up as overdoses will go down!

  21. Angelica Heavner at 10:08 am

    This is all well and good but is anyone actually going to listen? So far all I hear is the same thing over and over again. The blame is put on doctors, pharmaceutical companies, pharmacies, and the government. How about putting the blame where it belongs on the person who decides oh one pill isn’t working so I will take two, or I wonder if I chew it will it give me a better or longer relief or buzz. Or my all time favorite two hrs instead of every 6 like prescibed is perfectly fine and no I am not an addict when I do any of the above it’s the only way it works. GUESS WHAT, YOU ARE AN ADDICT WHEN YOU TAKE MEDS LIKE THAT AN NOT LIKE PRESCRIBED OR WITHOUT DOCTORS PERMISSION. Stop blaming everyone and everything else, its not a disease they chose to do it.
    I absolutely hate having to take my meds but have no option if I want to function at all. Like most actual pain patients we have good days and bad days, and on good days we will stretch not taking our meds for as long as possible because WE HATE IT, on bad days we do whatever we can to distract ourselves from the pain. Some color, some listen to music, some read, some make things some try and sleep. But again we avoid the meds even than because we dont want them.
    We live with pain that reaches pain off the charts every single day. Yet someone comes in crying over a sprained ankle and they get more than we get. Schools are putting a medication in them that costs $1,500.00 and hiring people to administer it for overdoses yet cant supply the kids with books, pencils, paper, or meals. You tell me what’s wrong with this picture. Start looking to the truth and realize where and how the problems started and stop it from there.
    I am a CRPS/RSD Warrior for almost 7 yrs thanks to a hospital that couldn’t listen when I said the iv hurt. I lost my career because of it and the use of my right hand and arm.

  22. Rick at 9:01 am

    A gorilla marketing thought;

    What if we ALL share this link w everyone we know and bombard this link w our true stories of our torturous struggles???

    Start a social campaign lead by NPR targeting their ‘public’ input of failed therapies.

    Thoughts?

    PAIN SHAMMING policies of the cdc are killing innocent Americans.

  23. Kathy C at 8:44 am

    It is very doubtful that HHS is the least bit interested in our “comments.” WHO should be tracking a lot more of these substances, than what is on this list. The combinations of drugs that are already in use, with iterations of Fentanyl, should indicate that there is not much distinction. The varieties of Fentanyl are analogues, tweaked formulations meant to get around the drug Laws. Another “unforeseen” effect of the “Drug War.” These designer drugs are being distributed by street level drug dealers, with dangerous results. They can get around the Drug Laws by selling these variations that are not technically Illegal. They can even be more dangerous or unpredictable than the old standbys. The current “Drug Policy” is endangering more people, often teens willing to experiment. There is no way to predict how these formulations will effect the average person.
    Other drugs on the list that have been in use for while, and have been promoted as “Alternatives” to Opiates. These drugs have not been that effective, even though they are presented that way. Of course when they are compared with nothing, or placebo, they appear to be better than nothing. As usual when “Drug Policy” is guided by Ignorance, half truths and hysteria, there is no way to figure out their usefulness.
    There is no expectation of any sensible Policies, Research or reaction to any of this information. When they put C.B.D oil on the same list as Fentanyl Analogues, it indicates that not much Science has gone into this List. No one has ever died from CBD Oil, or even had a bad day, yet here it is on the same list.
    There are drugs that are already in use, these drugs have been marketed as if they are a replacement for Opiates, The toxicity and dangers of these drugs were not evaluated before they were put on the market. It is very doubtful that any Physicians, Bean Counters, or other people in Healthcare even bothered to note their effectiveness, or dangers. Big Pharma found that kind of information was bad for business. As long as there was no one keeping track, they could blame the “side effects” on Patients who “Did not want to get better.”
    There will not be any Scientific Double Blind Studies of these drugs compared to Opiates. Deaths and Adverse Events from these commonly used Drugs will be attributed to Opiates, Drug Addiction or “Depression.” Pharma found that Not Researching these Drugs was better for sales. Many of the Overdose Deaths,,attributed to Opiates or “Drugs” are very possibly combinations of various drugs that did not work for pain, yet they were freely prescribed anyway. Since we have no actual Science being applied we will never know.

  24. Beth at 8:36 am

    Apologies if this is stated somewhere or just an ignorant question, but what are the practical implications of international restrictions for those of us in the US who use these drugs? In other words, if the WHO places international restrictions on ketamine -something I’m prescribed for my chronic, daily migraines – what would that mean for my future access to the drug in the US? Does our federal government look to the WHO for guidance on drug restrictions?

  25. Steven Smith at 8:08 am

    I can speak of the saftey and effectiveness infact absolutely required use for neuropathy pain of both tramadol and lyrica. I think the fda is simply forgeting that there are people in pain and require these medications . Opana was another unstudied effective pain medication which was the main workhorse for pain. Banned without consideration for patients that responsibly used it.

  26. Dana Shore at 6:13 am

    Our health is not in the hands of a group that cares about how we feel, and is the drugs the right fit for us. That went out the door years ago when the trips to Hawii and Florida and where ever the Docs wanted to go. The system is bought and paid for with pain pain patients getting screwed and the docs care less. This is what Kolondy wants. They don’t want healing or ease off of pain anywhere until they get the newly approved drugs in place so we can all get over charged under scripted and back to a miseralble life. You can thank Kolondy for that as the dirty bastard bank rolls the money on our misery from the drug companies and lobbist.

    I will issue this challenge again. He last the character of Hillary, Obama & Bill Clinton. He does not have the guts to meet me face to face and discuss the real problems of pain and how to live with them. His nuts ate the size of a number 3 buckshot and he has no character. I will make sure his children know and understand just how big a coward he is and just how big a low life POS common scum they were raised by.

  27. grey at 6:10 am

    I’m feeling a bit despondent. I commented, but I feel like there’s a war on chronic pain patients. It’s discriminatory, and it’s life-impacting! I fought so hard to get help, and now that’s under attack. I have other pressures in life right now, but I find I have a peripheral anxiety over this. My life is being threatened. My well-being…

    I thought I fought to get doctors to help, to get a diagnosis and to get the right treatment… I’ve advocated for myself for years. How did the rug get pulled out from under me?

    I don’t want to go back to struggling the way I did before I got pain relief. I had considered suicide. I was SO far away from that… I couldn’t believe I ever felt that way. I remember it, and I don’t want to go back. I don’t think I could.

    So, other people choose to abuse the medications. I still think it was a choice that they made. I didn’t make that choice. I chose to be careful and follow the doctor’s orders. The medications themselves are not evil. They gave me my life back.

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