Thank you. My story is similar. I have had nerve pain and chronic pain since November 1999. The pain is always with me. Without opioids I don’t believe I would be here.
As a pain patient for 40 years I applaud Kate Nicholson. Opioid use has become the new bogyman. We need to legitimize opioid use for patients who are managed properly. More, we need to support doctors who prescribe opioids responsibly. There are too many of us in need. We deserve the same standard of compassionate care as a patient with heart disease.
no doctors listen or wanna give chronic pain patients pain pills anymore its like talking to a wall! i agree fight for your rights to the very end but your still gonna be talking to a wall.
Chronic and ever worsening pain and heart disease. I'm surprised fighting the pain just to move daily hasn't dead shoveled me already. I am convinced this is what they want. Me dead.
@@sportsinjuries6593 Stop it. Just stop it. I misread your first name at first and how I read it would be more apt. Yes, I'm sure you get that a lot. In fact, I'm kind of wondering if you're a troll who purposely chose that name. In any case, stop being that @$$hole. You know, the one that backseat diagnoses strangers over the internet then applies a one size fits all "cure" to people who you know nothing about, let alone their medical history other than what small portion of it they freely shared here. Yoga? Swimming? I can barely freaking move and feeling emotions? You utter quack. What makes you assume we don't feel emotions, read, eat as healthy as we're able (cooking is difficult for someone with arthritic hands and spine and I can't eat anything high in fiber because it makes me ill immediately). You are frankly a complete and utter horse's @$$ to jump in here and tell other people how to live and to try and make them feel bad because they don't live up to your standards when they often can't. FInd something better to do with your life.
I've been taken off of every single pain med. They wnt allow me any only gabapentin which doesn't work and makes me sick. My mum has RA and they won't even prescribe her panadol
You are right, treat them properly. The only issue I see is that instead of proper treatment, they will require test subjects. Auschwitz, anyone? They only cut open your spine and nerves with topical anesthetic. That's what they want. Oh, and new, strange drugs to patent for $$$. They keep meds for their own, too.
Thank you for doing this video there are chronic pain patients being denied the opioid therapy that they were stable on for years decades without any problems but are now being denied because of the opiaphobics. Pain patients need all the help we can get to stop this cruel inhumane torture
I've had chronic pain for 23 years - I don't go one day without thinking about the relief that death could provide, even though I have three beautiful grown children, a baby granddaughter, a husband who somehow still loves me and family and friends. I haven’t done it because I don’t want to cause pain in others (emotional) when pain has been such a demon in my life. I am SO jealous of people with acute pain - even people with cancer (I know that sounds crazy unless you're in pain every second of every day) because there's hope for a cure out there for them. AND COMPASSION. This debilitating disease (Ankylosing Spondylitis) has taken my successful career, my home (can't use stairs) and my feelings of just being human away from me. Please listen to us, understand us, know that we do not abuse our medications. It's the other way around - our pain abuses us and so do people who criticize our right to have proper pain management (which I do not have, thanks to the Illinois legislators who have no idea how much they are damaging - and too often - ending our lives).
@Fire & Ice Elliott Collins Check out Jwlhyfer de Winter's video (On her channel The Gothic Bohemian Salon;) called "withdrawal" about when she was first forced off opioids four years ago. She has still not recovered from the damage of a forced cold turkey withdrawal and had to give up making videos as she has been completely debilitated, house and bed bound ever since.
I totally understand. I also suffer from anklosing spondylitis and as I read this I am wrapped in a heating pad, In excruciating pain . I am on hydrocodone the lowest dose right now but pain has really picked up now and gonna have to ask for an increase but you always fear being looked at as a druggy. It's not fair and we suffer for it.
I read also that untreated chronic pain kills, even if the person doesn't unalive themselves on purpose. Pain flares are often associated with heart failure.
I suffer from chronic pain, and the only “acceptable” alternatives to opioid pain relief have completely destroyed my stomach lining. My healthy father also died suddenly of a heart attack at 57, so I am so afraid every single day taking NSAIDS long term. I’ve had oral steroids, cortisone injections, physical therapy, tens units, braces, etc...When controlling the symptoms is your only option, you don’t care about stigmas, or the lifelong necessity. You care about your quality of life. You care about your children’s quality of life.
I have a family history of stroke my , my grandmother died from them my father had 2 before he was 50 , for the last 20 years they have been pumping me full of motrin...that says right on it if you have a famy history or are at risk of stroke this WILL increase the risk...no surprise I have been in the hospital for WEEKS at a time for heart problems and stroke watch ..i am only 42 at this time and have been warned of stroke in my early 30s
Sadly that isnt the case. Chronic pain isnt the same as acute. Chronic pain is generally in the brain not an actual injury or soft tissue pain, so opioids are only dulling the brains signals. Long term youll find that the opiods stop really helping kill the pain but just make you care less about everything and withdraw slowly. Source? I just spent a month doing 8 hours a day classes at Mayo Clinics chronic pain rehab program.
Wish my doctor understood that. I take kratom now, and a lot actually to make it work for me. Doctor refuses to prescribe me something liike hydrocodone for my pain. I find that so conservative in their opinion. She said she would only prescribe me opiates if I got cancer. So they'd rather let a patient suffer then "taking the risk of addiction" and prescribe something. You'd think a graduated doctor would have some better insight & considerations to it then just refusing to treat pain cuz of "the risk of addiction". Even ppl who take antidepressants are addicted to them, cuz they couldn't live without it. They'd call that dependance then, but that's the same as addiction.
@@Goblin1986p Well I'm sure opioids can fully stop & relieve from chronic pain, only the problem is tolerance. Especially if you use them on a daily basis. After a while even a big dose won't have the desired effect anymore. I've expiercened this with kratom, which is a herbal med but it works similar ways.
@@Goblin1986p that really sucks. I think I have nerve pain in my legs and lower back from psychological trauma so I don’t think opioids will help much.
Kate Nicholson's story is one of the most incredible and inspiring I’ve ever heard. Ever. She is so strong. Importantly, her courage and determination over more than twenty years of debilitating pain places her in a unique position to speak about the complex topics of pain treatment, medication, and recovery. This subject couldn't be more relevant in the face of growing opioid addiction and the backlash against appropriate treatment for chronic pain.
Thank you so very much for this talk! I can’t help I’ve been in pain for 30 years. I’ve never abused my medication but I am always treated like an addict! I went to the Hosp because I couldn’t stop throwing up from the flu. The first thing out of the dr’s mouth was “I’m not giving you anything for pain” I didn’t ask for pain medication at all. I just wanted them to help me stop throwing up! It’s so disheartening!
Thank you so very much for this. Every doctor out there should be forced to watch this so they can properly treat their chronic pain patients. Most of us are just existing, not living. The pain has robbed us of our lives.
You hit the nail squarely on the head. Since when should a dr’s licence to practice be threatened for simply doing what he/she is taught?..where is the compassion? What happened to the hippocratic oath? I applaud your presentation and thank you kindly.
I am very impressed with this young lady and she sure said a mouthful. As a person who suffers from Chronic Pain 24/7 for the last 13 years and have used opiates to help with my pain I’m so glad someone had the courage to stand up and say not all opiates are bad or abused by all. The opiates that I’m currently taking have given me back some quality of life and are FDA approved them for Chronic Pain. I’m able to do more things and function much better with the opiates and I thank God everyday that I’ve improved my pain levels. I also do physical therapy which helps in a therapy pool where I can move much easier. Thank you again for this wonderful video. I am inspired!!
Thank you for expressing this so well. Pain in and of itself is hard enough to live with. What makes it harder is the stigma, being judged by others who have zero idea of what being inside your body 24/7 is like.
Well... as big a breath of fresh air this is, its 2019 and it seems like the concerns of those in pain are just being swept under the rug. I functioned on my pain medication for over 5 years and was excelling at my job, graduated college, had and still have a family, and despite never having failed drug tests or counts I had my medication taken away, out of the blue. It's been a fight for life ever since.
Kudos to you for shining a light on a topic which so few people are aware. You did it powerfully, with grace and honesty. Your talk honored those living with pain and armed us all with knowledge to support them.
Another problem I keep hearing about is if you want pain treatment if you need opioids for pain doctors don't want to give it to you but if you claim you are a drug addict they will happily put you on a long term opioid to help prevent you from abusing drugs but if you tell that same doctor you are pain patient that can no longer get the opioid therapy you have been provided for years without any problems & you are not addicted you can't get opioids for pain they won't give the same opioids they give drug addicts because you are only in pain & not an addict. If that doesn't show how screwed up medical care is I don't know what does .
@Connor Wylie Yes. Two years ago I was referred to "addiction counseling" where I was told I should switch to suboxone. I don't have any history or predisposition for addiction; (I merely have five chronic mostly incurable illnesses which all cause pain and have put me in a wheelchair; bed bound and house bound;) and when I looked up suboxone there was nothing about it being used for "Chronic Pain Management." Now; two years later after already being evaluated and rejected as an "addict;" the clinic system I go to insists I see another psychiatrist in the "suboxone program" and now when I look it up they are claiming it is efficacious for chronic pain. Are they just trying to cover their asses now that everyone with chronic pain is being forced into these programs that are meant for addicts????? Oh, and I no longer had any choice about weaning off the meds that have worked for over ten years. So I'm towards the end of weaning off and between the spike in all of the symptoms, the increased pain and hyperalgesia; I can't even get back to the doctor to be prescribed the suboxone which probably won't work.
@@otherarcher9620- Is it possible to take a civil rights/ disability lawyer in with you next time you go for an appointment? It sounds like you are being bullied and subjected to 'cruel and unusual punishment' because you are sick. The point is, if you have a lifetime illness, you will be on lifetime treatment. There seems to be a confusion between this and being addicted, two entirely different things. The opioid crisis has a lot of people reacting in very irrational ways.
I AM ONE OF THESE PATIENTS! THANK YOU FOR SPEAKING ABOUT THIS! PLEASE DO NOT EVER STOP! THE CHANGE NEEDS TO COME BY 01/01/2019 OR WE ARE ALL SCREWED 😢😢😢
It's wonderful that you are speaking out on this. I hope you continue to make this presentations around the country, and more like it. It breaks my heart seeing opioids taken away from people I care about and watching their quality of life diminishing, and with some now openly talking about suicide. I believe you will do what you can to change people's lives for the better!
More than talking about Suicide. They are going through with it. This might wake people up if their families were to sue for wrongful death or malpractice or something.
The medical community KNOWS that pain is real and can be managed with opioids to allow chronic pain sufferers functional lives. They KNOW and pretend not to know. It's criminal. And inhumane. It is human torture, that Mengele would have rejected.
I suffer from severe chronic pain and my pain doctor refuses to give me opioids because he fears getting sued. I can’t believe we live in the 21st century and there is nothing for us that are suffering on a daily basis
I am so thankful for my neurologist who saw me in pain & gave me all the options I could try to rid myself of it, surgical & otherwise. He informed me in the '90's that he was so glad that a group of east coast scientists & physicians had written a paper after proving that only 1% of "true" pain patients got any kind of "high" from opioids. After hearing that an ex-patient had been taken off opioids & had been jailed for taking them in the 1st place, this incredible man flew from La Jolla to San Francisco, at his own expense & in his own time, to testify in the fellow's behalf. I used to belong to a health chat group & all members suffered chronic pain. It was frightening to hear what chronic pain patients will do to "self-medicate" if they can't find a doctor who will actively treat pain. Some had become alcoholics, others took all manner of street "fixes", some eventually committed suicide. If only the public knew how little time in med. school is spent on the treatment of all chronic illnesses, especially pain, there would be such an outcry that this nonsense of withholding potent pain therapy would stop immediately!!
OMG. I love you. This is being saved and downloaded and shared. My first thought was: ‘I bet it’s another Ted Talk telling me how to strengthen my mind from chronic pain ‘. No!!!! It’s real and evidence based. And. thank you for your work as a disability lawyer, from a Speech Pathologist who is a 20 year chronic pain patient- still working on bad and good days. Bless you.
At last! Some data that supports the patient in severe chronic pain! I am livid at what is happening in this country to pain treatment because of greedy pharma companies and drug addicts who lied to their doctors in order to get opiates to get high. My pain medication has been significantly reduced and will only be reduced more over time, I'm sure. THANK YOU for this Ted Talk, Kate. I am going to post it everywhere.
Mary Ann Farley I’m going through the same stigma and have been an exemplary patient I’ve complied to all demands after almost 2 decades. And now my quality of life is completely gone my health has declined and I feel hopeless and helpless now.
I, like you,am getting my pain meds reduced to zero. I wasn't on a real high dose recently, but was 3/half yrs. ago when I worked. I'm now on disability, but had to lose job , home- 16 yrs. each, all my belongings, and live in my car for 4/half mths. Took my 2 cats not knowing where we would go or sleep that night. Lost 1 cat 1st wk. out.😢 Now I've lived in this seedy motel the last 2 yrs. A Dr. reduced my pain meds in 2016, and that's how I lost everything. I missed too much work and the rest followed. So I missed my appt. at pain clinic today because there's not enough meds to help me walk to the bus. I now won't get my refill in 2 days. You just can't win. My blood pressure has been sky high because every time I go there, I know he will taper more and more. Last taper went over the line. Not doable. Where does that leave me? And you? I wish you the very best.💖💖💖💖
I sympathize with both of your stories. Data has shown the physicians have greatly reduced providing their patients with opioids since the most recent spike in opioid abuse starting in 2013. Even in patients suffering chronic conditions such as cancer, physicians are hesitant to use opioids even in terminal patients. (1) It is important that opioids still hold a place in medicine for individuals with chronic pain that want to continue their work, hobbies, passions, and activities of daily living. The code of medical ethics emphasizes that “physician shall be dedicated to providing competent medical service with compassion and respect for human dignity”. I would like to highlight that respect for human dignity is managing patients' pain, whether acute or chronic, responsibly. When a patient that had been consistently using narcotics for decades in order to continue their activities of daily living while living with chronic pain is suddenly unable to continue being prescribed due to fears of the physician being questioned, is unethical. Patients should not be considered “drug seeking” by wanting to manage their pain effectively. The medical communities stance on prescription opioids has fluctuated through time, and I believe it is important for physicians to be educated in the history of the opioid landscape over time. Due to the extreme restrictions on opioid prescribing currently, patients are having to suffer and it has put the ethical responsibility of physicians into question. 1. Foley KM. Misconceptions and controversies regarding the use of opioids in cancer pain. Anticancer Drugs. 1995;6 Suppl 3:4-13. doi:10.1097/00001813-199504003-00002
Thank YOU. I loved the closing. Denying pain meds to those that need them, does indeed deny them a life and moments of some quality of life. Time to give opioid pain meds back to those that never abused them and has never had an addictive body/personality
Thank you Kate for your wise words. I have suffered for 23 yrs and because of the Guidelines, am now tapered down to a point where I have lost my quality of life. I know I'm one of the lucky ones to still receive 'some' pain medication (which makes it very difficult for me to even submit this comment), but the fact remains that I am reminded every single day the moment I open my eyes that, what is the point of 'life if you can't live it'. Bless you dear!
When you have long term centrally driven chronic pain and multiple surgeries {18 years of central pain}, it destroys every fibre of who you are..chronic depression,the consistent thought of suicide to change the narrative..you wake every day and it's groundhog day...people go "oh you shouldn't take this or that" When you suffer as i and millions around the world do,you can function better at extremely high dosages of medications because the brain has become maladaptive . Through my long journey..damaged my back at 18..now 57,the one thing you realise is the quickest people to advocate how to treat chronic pain have never truely suffered..if they did they would wish they were dead.
Yep, ground hog day. People can never understand what someone else’s pain feels like, how intense the pain is, how intense the pain feels to the person in pain, and how the pain makes that pain feel mentally.
They reformulated the opioids so they no longer work. My husband had a botched surgery at the VA 7 yrs ago and suffers every day. I have a bad back from a birth injury that caused me to lose everything (my house, car, kids, pets, belongings, independence, dignity) and prevents me from working. It's hell on earth. They would rather every1 suffer & die by suicide.🤬🤬🤬🤬🤬🤬🤬🤬
Thank you thank you thank you Kate! This campaign against pain doctors and patients must end. The media coverage is getting better, and I’m having great conversations with people that weren’t possible a year or so ago. Let’s hope we can reverse the damage in the next year or so - unfortunately politicians and most talking heads in media haven’t researched he issue and still don’t get it!
Pain is definitely debilitating. It will wear down the biggest & strongest individual. I am one of the fortunate people who have lived a mostly pain-free life for 79 years but I've seen it wear down strong people. The government, as in too many cases, is unnecessarily far behind the curve when it come to actually helping people.
I just wanna say thank you Kate for ALL you do for us in Chronic Pain! I had a cervical spinal fusion in 07 & my nerves were severed as well, my spine feels like it’s on fire, I now have nerve damage, cervical arthritis and herniated disc above the plate in my neck! I have fibromyalgia & all that comes with it.. So I’m sure you know how I feel. Again I ty dear for everything you do 💜💜💜
Kate, I've only begun to listen but I've gotta say what you're describing sounds a lot like what my girlfriend has been experiencing for years. She had nerves cut from her spine to her uterus during a laparoscopy for endometriosis. The surgeon performed radio frequency ablation. I'm not sure rather it helped her (endo), pain or not but one thing is for absolute certain and that's years later she wound up with unrelenting low back pain that she says she cannot even begin to describe. It's gotten a bit better the last few years but not to any degree that yields much relief for her. She still wakes up screaming in the morning and needs help standing up. She is often unable to stand in the shower without help, she loves to cook but most nights I make dinner. The pain has taken so much from her life. It's been 36 years. At least before the CDC, DEA & their marry band of nitwits came along she was functioning at a MUCH higher level. Now, this pain her doctors added to her dozen other ailments is woefully under medicated which has only brought us both loss of life... loss of enjoyment of the life we worked hard to build. I worry for her safety. Frankly I don't know how much more she'll be able to bare. We keep searching for compassionate care but such doctors are apparently a thing of the past. What can we do? How do we change the false narrative? Any way I can help just let me know. Thanks for sharing your story! God bless!
I be dealt with chronic pain for a decade with non opioid treatment with no relief. I felt like I’d lost hope at that point .I was referred by my anesthesia dr who tried several type of injections with no relief to a 70 yr old pain management dr psychologist who after trying a tens unit & afew muscle skeletal meds finally offered me an opioid that changed my life. I could care for my 4 children that I fought with a specialist to conceive &carry these miracles. I was a functioning mother wife again. Thank god🙏🏻❤️ Until 2016, uncontrolled action of DEA closed my specialist who saved my & my children’s lives. Two yrs I’ve asked for written proof of all those yrs of non opioid treatments while having no treatment .my only life saving dr refused to even reply while city( Phila.) DEA denies knowing anything about mu Drs name.Though DEA had worked with my dr to stop an old patient from changing the patient name on the scripts & selling them to others for illegal use. Every Dept of government to be under control while DEA has no control. Once DEA decides to charge a dr they loose everything they’ve spent their life on & many yrs of education on. Not guilty they still lose all their lives effort to help humanity. DEA need to be controlled & Drs who have had involvement with DEA need legal support by the same government who has no control over them. they may be innocent but uncontrolled DEA has caused to many innocent physicians to loose their lives & families lives even though innocent . Changes are needed yrs ago for patients & Drs who are the highest educated but innocent.just as all patients prescribed opioids aren’t Addicts. It needs to begin with government today ???!!
Amazing Ted Talk from an amazing and fully researched lawyer on the subject as well as a former intractable pain patient!! Thank you for this Kate, I will be sharing!!
Amazing. I can't believe how strong you've been throughout this! Of course, I'm not surprised you're finding a way to make this about helping other people!
Many of us wonder, because its being circulated around in CPP advocacy groups, if our civil rights are being violated in some way? The ADA and the SC Olmstead ruling are mentioned. I thought, given your background, you might be able to answer this. Does anything that's happening to disabled chronic pain patients or intractable pain patients, even remotely resemble anything that happened with HIV/AIDS patients that may be a civil rights or other violation under the ADA? People want to do something, we just don't know what or where to begin. Thank you for sharing your experience publically and representing us (the pain community) so well.
We were wondering about this, too. What about the Intractable Pain Laws and all the progress that was made in proper pain management; with the requirement that doctors add the Pain Scale as another vital sign they have to check?? And it is also illegal to treat disabled individuals like they are drug addicts by making them wean off their medications and go into Suboxone "programs."
I totally agree. Why do true pain patients have to suffer because idiots abuse medication? Proper pain treatment and management is critical to our society. Not helping people with legitimate pain conditions is ludicrous. I have Fibromyalgia and thank god I have a caring dr. I’ve seen for years that understands this condition. I’m having a nerve burning procedure soon in my low back. Hoping it helps with all over pain. Hugs to anyone suffering in pain.
As a student studying physiotherapy, i really appreciate this video and i understand to an even greater extent the importance of at least acknowledging the patient's pain, even before treating it. too many a time us students (at least where i'm from) are too fixated on reaching the goal which is to be able to make a hypothesis of what the patient is suffering from, rather than to listen to them and to be able to assure them accordingly
I'm so happy to see this talk... I'm in chronic pain and I can tell you it's worse when you're young and female... The strongest they'll give me is Tylenol 3... And prescription strength ibuprofen. Needlessly to say I've considered turning to the street, I'm in Canada they know they're under medicating me and they don't care.
I know it's a year later if you haven't found a way out yet go to a methadone clinic just simply tell them what they want to hear that's the only way to get pain medicine. I'm on 95 mg a day I just thank God that I'm Street smart
I also feel the fiery hot pins shooting in my back when I shower. I have been in pain for ten years. Multiple ablutions. My pain meds were reduced due the opioid crisis even though I had been compliant and tested for 8 years. Doctors were afraid of being fired.
Thank you for your time, if only one person at a time, folks I suffer greatly and it's sad, I won't tell my story but like she said let's stop chronic long term pain, it's not needed the stress on one's body alone is enough damage. Government get out of our healthcare, doctors stand firm to your Oaths. Cheers and Godbless.
Thank you Shirley B! The 'Opiod Crisis' is not new. Pain patients have been suffering for decades. It has reached a crisis point, and it appears that our lives will be sacrificed because doctors are out of the picture and government do-gooders fail to see the connection between overseas Fentanyl overdoses and medically prescribed medication that saves lives. The government should not stand between us and our doctors, and our doctors should not stand for being misinformed.
This was very well done, thank-you for sharing your very inspiring story. I work in Chronic Pain, as a physiotherapist in Canada. Chronic pain management is poorly understood, it takes a multidisciplinary approach and goals should be for improvement in function when people have become disabled from chronic pain. Many people lack coping strategies while they suffer and this causes problems in the brain and the loop of pain doesn't end. The approach to Chronic Pain has to change because it is more complex than a one-time insult to the body. PainBC is an excellent source of information for patients and health care providers. Education is therapy in and of itself. Thank-you Kate, you have done amazing work with your life.
After surgery, physical therapy, TENS, massage, topical creams, OTC medication, and months of debilitating pain, it took about a little over a month of opioids to treat my mother's back pain (nerve pain, similar to what the speaker here). A month. She's pain free for almost 6 years now, taking no medication. She was extremely reluctant, and exhausted every other option first to no avail. As everything, opiods are a tool that may work in some situations.
She very right those med is the only thing we got for my chronic back pain n body pain for now I hope the science find something better than opioid med n they help me from this horrible pain
Yep. So do tell?? What ever happened to Life, Liberty, & Pursuit of Happiness??? You can keep the democratic republic as long as you can keep the democratic republic... Out of the frying pan...
We should be doing all that we can for both. Calling people struggling with addiction "a few junkies" shames, stigmatizes and oversimplifies what is going on.
Ronald Clayton I have an intrathecal drug pain pump to help ward off pain from phantom limb pain and lower back destruction....as I am an amputee with 9 surgeries (from 1989-2008) on my leg until a diagnosis of osteolysis in 2009. I opted for an amputation in 2011, mainly to regain some part of my life. Most opioids did not work, until after tests, we opted for fentanyl. Because it was implanted in my spine, I received no relief in limb. I used marijuana, which felt like a godsend, but now my doctor is removing the pain pump. I also forgot to add the spinal stimulator that was implanted in 2015, that caused spasms so severe, I needed to go to the emergency room. Only to be labeled a drug addict.....they did not understand the drug pump was causing the spasms. This has been like a bad dream that will never stop.
I'm 70, have cancer, diabetes, lower, upper back and neck pain, I also have neurological pain in the head that my neurologist used to prescribe 3X 20mg Oxycodone per day until Tennessee changed their attitude about opioid pain relief. Even my skin hurts when touched. The last 7 months i have been in bed 99 % of the time, with a painful foley cath in me. So, I'm kind of a mess. My North Dakota doctors and physicians assistants tell me to try a Tylenol. We have a mean country that does not care if it's own citizens suffer. Cancer? Tylenol? I heard that from my urologist, who operated on my cancer last month. Radiation does not start for over 2 months. I'm losing weight and strength. When I asked if they could prescribe only 1 opiod pill per day to give me a break from pain, I was ignored and not answered. What is crazy is the hospital that they all work for has it's own pain clinic.
This is an amazing presentation! As someone young with chronic pain, my opiate pain medicine does help me to be able to walk more than I could without it, stairs are still an struggle and I have to rest a lot but I can do stuff like help my mom carry stuff and take care of my cat. Undertreated pain can destroy your life, in my case it exacerbates my nausea which can led to a hospital visit and means I have to spend hours in bed with my ice packs. also every chronic pain patient I know try’s many things to help like tens and epsom salt soaks and stuff. I can’t take nsaids because of my gastroparesis and gerd and my pain medicine helps, it’s not a cure but it improves my quality of life. I don’t like the side effects of the medicine but it’s better than the terrible pain without it and enables me to do more. I wish everyone could see this talk, especially those without chronic pain and doctors (especially med students)!
sid2tiger6 I have gastor as well. I have a g /j tube. My pin mgmt doctor we were slowly trying to taper me off, then on doctor didn’t want to deal with my case anymore after 10 years. Opioids have helped a lot, but since the last doctor cut my dose. I’ve been dying, can’t do anything.
Thank you, thank you, thank you! I have a genetic disorder that causes excruciating chronic pain, for which there is no cure or even significant treatment. My doctors and I exhausted absolutely every other option, with little to no improvement or relief (and often debilitating side effects,) before we finally resorted to opiate pain management. Opiates are the only thing, (when paired with other management techniques,) that give me quality of life. I've been on pretty much the same dose for over 10 years with zero side effects. On the opiates I can work part time, volunteer, and do a few things I enjoy and that give my life meaning. At one point a dr took away my meds for no reason other than the opiate epidemic. I was bedridden, vomiting daily due to the level of excruciating pain, had no life, and eventually became suicidal. I was fortunate enough to find another dr willing to take me on and manage my treatment and opiate medications so I was able to get my life back, but many are not so lucky. I hear the stories all the time in my chronic illness support groups of people with zero quality of life and no dr willing to take on their pain management, and worse, those ending their lives because a person can only take so much pain. The opiate epidemic is very real and is incredibly tragic, but destroying the lives of chronic pain patients does not get to the real root cause of addiction and the epidemic and creates an equally heartbreaking problem.
God Bless you for speaking out for people like us who live with daily pain and suffer...and then get treated like a street drug user. Thank You for taking a stand and speaking for millions who haven’t done so. Thank You!!!
Just found and viewed Kate Nicholson's TEDxBOULDER talk on chronic PAIN and Opioids. Excellent presentation with CORRECT statements on the need for opiates for those experiencing the debilitating effects of Chronic Pain. I'm disabled, 20 yrs due to surgical complications. Thank you Kate.
@@katemnicholson hope that you are still doing well. We need lots of advocacy for us. Right now I'm trying to get my insurance to pay for my medicine. But they only want me to take a antidepressant for pain. My husband does not help at all so despite the constant never ending pain I must not give into the crippling pain
Sam C I am very sorry for your lack of support from your husband. If he’s educated in your problem, and he still refuses to help, I wonder why he’s married to you? I don’t want to say “why you are married to him” because I think you probably hope he will help you, some day. I genuinely pray that you have friends or other family members who care and help. 🙏
They took all my pain medicine away 2 years ago and I have become a recluse in my own home due to my pain. I think about suicide everyday but I can't tell anyone for fear they will lock me away.
It all started four years ago for me. I hope you have been able to stay alive. Take care of yourself as best you can until this whole thing turns around. I still have hope even though I am in horrible unremitting pain/hyperalgesia.
You are not alone. But the light at the end of the tunnel is starting to shine, things are starting to turn in our favor on the federal level. Have hope - lean on the Lord with all you are & let him restore you from the inside out. Significant things have broken loose in the last 2 weeks - please know that! One thing that's helped keep me from living under the burden of pain is to get involved in my state & work towards change.
@Titanmth saturn No and my care of life is worthless with deep depression to the point I don't even take care of my own body hygiene and my family has given up on helping me.
Today doctor shopping is all but impossible if the doctor checks the programs available that show what a patient is taking & by what doctor is providing it to them But because it has become easier to avoid patients with pain we are ignored & denied medical care leaving patients suffering in so much agony suicide has become the only option left when you cant stand another day in agony.
This is a good discussion regarding pain. Thank you Kate Nicholson.However, I agree with Richard Lawhern’s comment regarding the withdrawal of the CDC guidelines. There needs to be an update in this area.. I have written the CDC without answers, as well as written on most FDA dockets. Nobody has really answered we chronic pain patients. The other issue: How much Medical training do Physicians receive. I see a pain Doctor w/ Anesthesiologist after his name. I wonder if some aren’t worried about the minimum dosage of 90 MME’S per day, as they have invasive proceedures as a back up plan, I believe CP pts. Also need to address all pre-med students to hear CP stories which will help them understand Chronic pain, and how Opioid pain meds are effective.
I've written elsewhere about the CDC guidelines although the real problem is the way in which they have been misapplied by legislators, policy-makers, pharmacy chains, insurers and others to create mandatory blanket and one-size-fits-all limits on the dosage and supply of opioid analgesics. This talk was for a generalist audience - I didn't want to get too technical. It only provides an overview. The AMA just came out against these limits this weekend...
The words, searing, throbbing, burning, hot needles describes the pain exactly! The dr's try to make us feel useless and the humiliation of being on pills is awful.
Thank you! Thank you so much, you are the first person who has understood what I call getting hit by a cactus plant, Fiery Needles describes it so much better. I'm sad that you understand but glad that you had the courage to talk about it. Thank you again.
2019, here I sit, not for long though, I too can not do this for a short length of time or else, I end up in bed with an inability to stand. Up and down, mostly down due to the denial of pain meds. Instead, I'm forced to use medical marijuana for relief. Having no choice, I attempt to navigate the use while emptying my pocket book. I get a high....of which, while on narcotics, I Never got. I am afraid to leave the house because I am high and I feel uncomfortable. I have never felt this helpless and abused by a system whom abruptly went and changed laws for reasons of which, I, as a chronic pain patient, have never felt in my life.
I'm and Ehlers Danlo Syndrome patient EDS is an incurable disease there is no cure and the pain gets worse over years. Doctors tell me "Oh well just learn to live with the suffering." I've had family members who were forced tapered and cut off cold turkey. They died either by medical complications (aneurism, stroke, heart attack from untreated pain) others committed suicide.
Sad thing is that many don't have the money to get treatment. And they sure don't have many people that help them. You were very lucky to have many people to help you.
Thank u so much Kate!!! I suffer from many conditions and the worst is a nerve disorder in the face called trigeminal neuralgia. It hurts beyond belief and many don't even know it exits. So it is so hard to explain to almost anyone. I am fortunate enough to get my meds to help me live a relatively normally life but not everyone is. You are so amazing and thank you for speaking out about the truths about opioids. They really do give people their lives back.
The longer we prohibit pain patients from the medications they need to improve their quality of life....sadly, the rate of suicides will certainly increase. I’m already witnessing this in my online FB support group for my chronic illness.
I think that’s the point! Persons with chronic unrelenting pain who are unable to work are sometimes seen as an economic drain on the medical system and useless to society, sometimes I can’t help but think they want us to commit suicide or eventually have us euthanized 😢.
I've never done street drugs a day my life, and I have been using pain meds 25 years. I never became addicted, and I never had withdrawals. I don't even have memory of what it's like to not be in pain. Can't work anymore, so what's the point of staying around in so much pain, that you pass out? They don't allow us to live a semi-normal life, so what's the point anymore? They don't understand why you have a stockpile set aside, for when you just give up. They don't understand what it's like to have chronic pain, and not have it controlled. When it was controlled, I was able to work, but when your medications are cut by 80%, there's not much you can do. Believe me, I've tried. They care more about keeping their licenses, than about a human being. I pray every night for God to take me home.
I’m sorry man I am 17 and now have pain everyday not debilitating but I’m scared of it getting to that point becuase it’s gradually gotten a little worse everyday and I’m just waiting till Elon musks nueral link comes out
I have Multiple Sclerosis. I was diagnosed in my mid 20s, as years went by, I started have pain as one of my side affects. It got worse and worse as time went by to where it was unbearable. I went to my neurologist and he tried everything under the sun for my pain, most of which with did nothing or just knocked me out. I was put on opioids and my life changed. While my pain is never gone completely, I have a better quality of life. This crackdown is too extensive. For those of us who take our medication as prescribed it isn’t right. I see too many people that illegally obtain these medications. That is where the problem is. We, that have taken out medicine, like myself for 15 years now, need to stand together and have our voices heard! These people making decisions for us don’t know what chronic pain is and are probably if they experienced it would be the first ones that panicked and illegally bought some. I’m sorry if that seems harsh, but I, like many others, go by the rules, and shouldn’t have to suffer because of the junkies out there!
I have severe fibromyalgia. I am on a small dose of opioids, but my doctor wants me to stop taking them. I told her if she can find a replacement for them, I will gladly stop. I have tried every single medication that there is and I have had severe reactions to them all. I cannot tolerate anything except the opioids. They don’t completely take the pain away, but do help when I have been awake most of the night in excruciating pain and discomfort. She also told me that they usually only give opioids to cancer patients. I believe my pain can be every bit as bad. It is so sad that our doctors are just not taught enough about chronic pain treatment. We should not be denied anything which helps us have a more comfortable existence. The pain destroys so many lives. I hope more pain specialists see this.
Totally agree and have for a long time. Then I personally have been dealing with this battle for about a decade and a half. And while I agree I've all but given up on anything's changing for the positive in this area. I know that sounds very pessimistic but I have tried, educated, advocated, self-advocated.... And I have learned that a self advocating pain patient-to a doctor, is known asan addict.
After 6 months of standing and twisting thro knee, hip, back pain, difficulty breathing from tight muscles and panic attacks. One day I started vomiting from the pain I couldn't walk more than a pace of heel to toe slowly. I knew the doctors wouldn't help but finally went anyways. I got diagnosed with sciatica, no one (even now after two yrs no real diagnosis for the cause just low back pain/ sciatica) tried to find the cause. My doctor prescribed naproxen.. for nerve and muscle pain and anytime I went back for help she'd prescribe more useless high risk low reward medication and verbally shove me out the door. I've been through 3 physical therapist, a neurologist, ER ( when I felt in shock from the pain) no one treated me like more than cattle. Davis chiropractic is the first place that's actually asking what lead up to not just what is felt now. It feels like Most doctors, nurses, and physically therapist are actively just trying to end the conversation instead of getting the information they need to do their jobs properly, they get pain either way and even more the more u come back. Stigma around quitting work to try to fix myself only amplifies to tightness which in turn amplifies the piriformis which over laps ur sciatic nerve. Financial, social, general stress, anxiety, and my mental illnesses worsen the pain and the pain worsen the above.
I came to RUclips today out of sheer desperation. I cannot take any more pain. I. Can. NOT.. Normies don't understand, and never will until it happens to them. I grieve for who I was, I grieve for who I was supposed to become. I just want to be normal and do normal things. I want to participate in my life, not just simply exist as a bystander. I have been forced to find pain relief from friends and family, and that's when I actually have a little bit of money. I have taken so much otc meds I have injured my kidneys. At one point a few years ago, I'd take 4 each of acetaminophen, ibuprofen, and naproxen, and I'd take that 3 to 4 times a day, knowing it was bad for me, but so desperate to find some sort of reprieve.. this has affected every relationship I have, with my children, my husband, my friends.. can't work this way, no one wants to keep you on if you have to constantly call off. But my neighbor who was a heroine addict, he's been getting treated for SEVEN YEARS. WTF? If animals were treated in this way we would have animal rights groups everywhere up in arms. This is torture, physically, mentally, emotionally, spiritually. It's all encompassing, and it's sadistic how pain patients are treated. Just thinking about having to leave the house for errands, housework, or something as simple as a shower now throws me into anxiety because I KNOW that it's going to hurt even WORSE, if it's possible. Cannot sleep from pain, and that's the cherry on top. With all that pain and anxiety, sleep is the only reprieve, but I cannot sleep from pain. No sleep affects your mental status even more. The other options doctors have for pain either do not work, or cause additional side effects that worsen the already miserable pain. I cry everyday now. I've stopped talking to people through messages and calls. I've stopped visiting or accepting visitors. I don't want to have to keep explaining to everyone, don't want to hear anymore good intentioned ideas from anyone. I know what works to give me quality of life, and it is being denied. My choice taken away. And so I sit and wonder, every day, is today the day my mind snaps?
You've defined so many of our lives. Let by the wayside of the world wondering how they can carry on and close their eyes, ignoring common sense. While we die. Prayers for comfort. Oh and my phones always silent now too. 🙏❣️😔🕯️💙 🔥💯 Repeal the controlled substances act now!!!! 🔥💯 Join doctors and patients of courage!!!
Thanks Kate for your lecture. I’m sorry for what you suffered but I’m glad u are better now. I live with chronic pain & Australia also denies opiates to sufferer. True doctors should have mercy & compassion, & not agree with drug enforcement agencies. I see the medical society now as a drug making money society, not as a carer. I hope to god that the rules will change. I don’t want to be denied medication & suffer just because they say so, after all it’s not their life
I'm in so much pain I can't stand to stay out of bed very long. How am I suppose to live without pain medicine. I don't know what to do. I used to be on Norco and it kept me out of pain. Pain has ruined my life. I need help and I can't get it.
I am a primary care physician. I am also patient. I had a running injury that was misdiagnosed as a yoga injury, therefore causing a devastating delay in treatment which has left me with chronic pain. I treat many patients with chronic pain with full agonist opioids, and I also treat many patients with opioid use disorder. The line is very blurry, and it has very little to do with the patient's personality or intent. The argument that people who "abuse" opioids ruined it for patients who truly "need" opioids for pain management is over simplistic and only serves to further marginalize and dehumanize patients who suffer with opioid use disorder. True "abuse" of opioids as we imagine it is extremely rare - this represents a fleeting moment in the clinical course of a patient afflicted with substance use disorder. Most people who use illicit opioids use them not to get high, but to not get sick. This is not different just because of the presence or absence of a prescription. It is a chemical property of all opioid medications that the brain becomes neurochemically dependent to whatever extent if that patient is exposed to chronic daily exogenous opioids. It truly has nothing to do with the patient, and everything to do with the medication. I will also note that having a prescription for opioids does not mean it is legitimately medically indicated or safe or appropriate for the patient. The difference between "using" and "abusing" opioids often comes down to one arbitrary signature by a person (the prescriber) who may or may not have the patient's best interest at heart or be complying with current standard of care. There is no compelling evidence that monitoring the patient or screening for "addictive" traits or risk factors truly improves outcomes. Remember that this is a chronic condition so acute clinically significant outcomes are limited to risk of acute overdose and death, not to "addiction." Most clinically significant outcomes are chronic, over years not months. Let us also consider that when we use these risk calculators to decide who is appropriate for chronic opioid pain management, we actually filter for factors which are more likely to be experienced in disadvantaged populations - thus we end up with dramatically different pain management strategies for subgroups such as people of color and people identifying as female. These disparities are supported by clinical research and are now common knowledge in the medical community. Agreed that it is now a terrifying landscape to practice medicine, given the risk of legal complications especially with prescription of chronic full agonist opioids for pain management. Also agreed that we are not taking care of chronic pain patients as we should for fear of litigiousness. Also agreed that we do not listen to patients like we should, and we often miss things that end up negatively affecting patients' health. The field of medicine is not perfect. It's not even that great, all horrendous historical abuses considered. The most damaging thing we can do, I believe, is to blame patients for our mistakes - in this case, to blame patients for the expected clinical results of the known chemical properties of medications that we prescribed and condoned for decades. This is inclusive of all patient populations - addicted or dependent or neither, using or misusing or abusing, or any other arbitrary label. All patients deserve to be treated for what is causing their suffering, and it is never our place to blame or judge. I really enjoyed this talk, thank you for speaking out.
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Thank you. My story is similar. I have had nerve pain and chronic pain since November 1999. The pain is always with me. Without opioids I don’t believe I would be here.
As a pain patient for 40 years I applaud Kate Nicholson. Opioid use has become the new bogyman. We need to legitimize opioid use for patients who are managed properly. More, we need to support doctors who prescribe opioids responsibly. There are too many of us in need. We deserve the same standard of compassionate care as a patient with heart disease.
STill being under treated,, vets are killing themselves.
no doctors listen or wanna give chronic pain patients pain pills anymore its like talking to a wall! i agree fight for your rights to the very end but your still gonna be talking to a wall.
Chronic and ever worsening pain and heart disease. I'm surprised fighting the pain just to move daily hasn't dead shoveled me already. I am convinced this is what they want. Me dead.
@@sportsinjuries6593 Stop it. Just stop it. I misread your first name at first and how I read it would be more apt. Yes, I'm sure you get that a lot. In fact, I'm kind of wondering if you're a troll who purposely chose that name. In any case, stop being that @$$hole. You know, the one that backseat diagnoses strangers over the internet then applies a one size fits all "cure" to people who you know nothing about, let alone their medical history other than what small portion of it they freely shared here. Yoga? Swimming? I can barely freaking move and feeling emotions? You utter quack. What makes you assume we don't feel emotions, read, eat as healthy as we're able (cooking is difficult for someone with arthritic hands and spine and I can't eat anything high in fiber because it makes me ill immediately). You are frankly a complete and utter horse's @$$ to jump in here and tell other people how to live and to try and make them feel bad because they don't live up to your standards when they often can't. FInd something better to do with your life.
I've been taken off of every single pain med. They wnt allow me any only gabapentin which doesn't work and makes me sick. My mum has RA and they won't even prescribe her panadol
Yes! I 100 percent agree! Treat both pain and addiction properly instead of punishing those who have pain!
You are right, treat them properly. The only issue I see is that instead of proper treatment, they will require test subjects. Auschwitz, anyone? They only cut open your spine and nerves with topical anesthetic. That's what they want. Oh, and new, strange drugs to patent for $$$. They keep meds for their own, too.
Thank you for doing this video there are chronic pain patients being denied the opioid therapy that they were stable on for years decades without any problems but are now being denied because of the opiaphobics. Pain patients need all the help we can get to stop this cruel inhumane torture
I've had chronic pain for 23 years - I don't go one day without thinking about the relief that death could provide, even though I have three beautiful grown children, a baby granddaughter, a husband who somehow still loves me and family and friends. I haven’t done it because I don’t want to cause pain in others (emotional) when pain has been such a demon in my life. I am SO jealous of people with acute pain - even people with cancer (I know that sounds crazy unless you're in pain every second of every day) because there's hope for a cure out there for them. AND COMPASSION. This debilitating disease (Ankylosing Spondylitis) has taken my successful career, my home (can't use stairs) and my feelings of just being human away from me. Please listen to us, understand us, know that we do not abuse our medications. It's the other way around - our pain abuses us and so do people who criticize our right to have proper pain management (which I do not have, thanks to the Illinois legislators who have no idea how much they are damaging - and too often - ending our lives).
@Fire & Ice Elliott Collins Check out Jwlhyfer de Winter's video (On her channel The Gothic Bohemian Salon;) called "withdrawal" about when she was first forced off opioids four years ago. She has still not recovered from the damage of a forced cold turkey withdrawal and had to give up making videos as she has been completely debilitated, house and bed bound ever since.
23 yrs. too. Im a TN sufferer. 2016 I left my pain clinic because nerve blocks replaced the medication.
the nerve blocks caused more nerve damage.
I understand. I’m in the same place.
@@Ackerman_77 So now how do you manage??
I totally understand. I also suffer from anklosing spondylitis and as I read this I am wrapped in a heating pad, In excruciating pain . I am on hydrocodone the lowest dose right now but pain has really picked up now and gonna have to ask for an increase but you always fear being looked at as a druggy. It's not fair and we suffer for it.
I read also that untreated chronic pain kills, even if the person doesn't unalive themselves on purpose. Pain flares are often associated with heart failure.
I suffer from chronic pain, and the only “acceptable” alternatives to opioid pain relief have completely destroyed my stomach lining. My healthy father also died suddenly of a heart attack at 57, so I am so afraid every single day taking NSAIDS long term. I’ve had oral steroids, cortisone injections, physical therapy, tens units, braces, etc...When controlling the symptoms is your only option, you don’t care about stigmas, or the lifelong necessity. You care about your quality of life. You care about your children’s quality of life.
I have a family history of stroke my , my grandmother died from them my father had 2 before he was 50 , for the last 20 years they have been pumping me full of motrin...that says right on it if you have a famy history or are at risk of stroke this WILL increase the risk...no surprise I have been in the hospital for WEEKS at a time for heart problems and stroke watch ..i am only 42 at this time and have been warned of stroke in my early 30s
Opioids are a lifesaver for those that are in real chronic pain
agreed but try to find a doctor when you need too
Sadly that isnt the case. Chronic pain isnt the same as acute. Chronic pain is generally in the brain not an actual injury or soft tissue pain, so opioids are only dulling the brains signals. Long term youll find that the opiods stop really helping kill the pain but just make you care less about everything and withdraw slowly. Source? I just spent a month doing 8 hours a day classes at Mayo Clinics chronic pain rehab program.
Wish my doctor understood that. I take kratom now, and a lot actually to make it work for me. Doctor refuses to prescribe me something liike hydrocodone for my pain. I find that so conservative in their opinion. She said she would only prescribe me opiates if I got cancer. So they'd rather let a patient suffer then "taking the risk of addiction" and prescribe something. You'd think a graduated doctor would have some better insight & considerations to it then just refusing to treat pain cuz of "the risk of addiction". Even ppl who take antidepressants are addicted to them, cuz they couldn't live without it. They'd call that dependance then, but that's the same as addiction.
@@Goblin1986p Well I'm sure opioids can fully stop & relieve from chronic pain, only the problem is tolerance. Especially if you use them on a daily basis. After a while even a big dose won't have the desired effect anymore. I've expiercened this with kratom, which is a herbal med but it works similar ways.
@@Goblin1986p that really sucks. I think I have nerve pain in my legs and lower back from psychological trauma so I don’t think opioids will help much.
Kate Nicholson's story is one of the most incredible and inspiring I’ve ever heard. Ever.
She is so strong. Importantly, her courage and determination over more than twenty years of debilitating pain places her in a unique position to speak about the complex topics of pain treatment, medication, and recovery. This subject couldn't be more relevant in the face of growing opioid addiction and the backlash against appropriate treatment for chronic pain.
Thank you, Kate.
Thank you so very much for this talk! I can’t help I’ve been in pain for 30 years. I’ve never abused my medication but I am always treated like an addict! I went to the Hosp because I couldn’t stop throwing up from the flu. The first thing out of the dr’s mouth was “I’m not giving you anything for pain” I didn’t ask for pain medication at all. I just wanted them to help me stop throwing up! It’s so disheartening!
Thank you so very much for this. Every doctor out there should be forced to watch this so they can properly treat their chronic pain patients. Most of us are just existing, not living. The pain has robbed us of our lives.
This is the kind of balanced presentation that we need more of - on a subject that people only know from negative press about opioids!
Thank you so much, Derek.
You hit the nail squarely on the head. Since when should a dr’s licence to practice be threatened for simply doing what he/she is taught?..where is the compassion? What happened to the hippocratic oath? I applaud your presentation and thank you kindly.
I am very impressed with this young lady and she sure said a mouthful. As a person who suffers from Chronic Pain 24/7 for the last 13 years and have used opiates to help with my pain I’m so glad someone had the courage to stand up and say not all opiates are bad or abused by all. The opiates that I’m currently taking have given me back some quality of life and are FDA approved them for Chronic Pain. I’m able to do more things and function much better with the opiates and I thank God everyday that I’ve improved my pain levels. I also do physical therapy which helps in a therapy pool where I can move much easier. Thank you again for this wonderful video. I am inspired!!
Thank you, Jaena. I am so glad that you are finding relief.
You're one of the lucky ones...
Thank you for expressing this so well. Pain in and of itself is hard enough to live with. What makes it harder is the stigma, being judged by others who have zero idea of what being inside your body 24/7 is like.
Your exactly right!
🔥💯 Repeal the controlled substances act now!!!! 🔥💯
Join doctors and patients of courage!!!
Well... as big a breath of fresh air this is, its 2019 and it seems like the concerns of those in pain are just being swept under the rug. I functioned on my pain medication for over 5 years and was excelling at my job, graduated college, had and still have a family, and despite never having failed drug tests or counts I had my medication taken away, out of the blue. It's been a fight for life ever since.
If we don’t fight now we are all going to have NO LIfE
Yes!!! You understand!!! I enjoyed your post immensely. Please keep sharing your thoughts with the mind controlled idiots of the world!
I have basically No life. I wish I could blow my head off. There is no way out of the never-ending battle with PAIN.
😪😪😪
Excellent and necessary talk. This should be watched my the entire medical community.
post it on your facebook page and all of your friends pretty please
Kudos to you for shining a light on a topic which so few people are aware. You did it powerfully, with grace and honesty. Your talk honored those living with pain and armed us all with knowledge to support them.
Thank you, Bonni.
Another problem I keep hearing about is if you want pain treatment if you need opioids for pain doctors don't want to give it to you but if you claim you are a drug addict they will happily put you on a long term opioid to help prevent you from abusing drugs but if you tell that same doctor you are pain patient that can no longer get the opioid therapy you have been provided for years without any problems & you are not addicted you can't get opioids for pain they won't give the same opioids they give drug addicts because you are only in pain & not an addict. If that doesn't show how screwed up medical care is I don't know what does .
@Connor Wylie Yes. Two years ago I was referred to "addiction counseling" where I was told I should switch to suboxone. I don't have any history or predisposition for addiction; (I merely have five chronic mostly incurable illnesses which all cause pain and have put me in a wheelchair; bed bound and house bound;) and when I looked up suboxone there was nothing about it being used for "Chronic Pain Management." Now; two years later after already being evaluated and rejected as an "addict;" the clinic system I go to insists I see another psychiatrist in the "suboxone program" and now when I look it up they are claiming it is efficacious for chronic pain. Are they just trying to cover their asses now that everyone with chronic pain is being forced into these programs that are meant for addicts?????
Oh, and I no longer had any choice about weaning off the meds that have worked for over ten years. So I'm towards the end of weaning off and between the spike in all of the symptoms, the increased pain and hyperalgesia; I can't even get back to the doctor to be prescribed the suboxone which probably won't work.
@@otherarcher9620- Is it possible to take a civil rights/ disability lawyer in with you next time you go for an appointment? It sounds like you are being bullied and subjected to 'cruel and unusual punishment' because you are sick.
The point is, if you have a lifetime illness, you will be on lifetime treatment. There seems to be a confusion between this and being addicted, two entirely different things. The opioid crisis has a lot of people reacting in very irrational ways.
Lynda wow never thought of it like that bravo that is ludacris
@@otherarcher9620 Did you end up trying the Suboxone? It does work for some people.
I AM ONE OF THESE PATIENTS! THANK YOU FOR SPEAKING ABOUT THIS! PLEASE DO NOT EVER STOP! THE CHANGE NEEDS TO COME BY 01/01/2019 OR WE ARE ALL SCREWED 😢😢😢
It's wonderful that you are speaking out on this. I hope you continue to make this presentations around the country, and more like it. It breaks my heart seeing opioids taken away from people I care about and watching their quality of life diminishing, and with some now openly talking about suicide. I believe you will do what you can to change people's lives for the better!
Thank you!
More than talking about Suicide. They are going through with it. This might wake people up if their families were to sue for wrongful death or malpractice or something.
Finally a educated person who knows how it really is. Thank you!
The medical community KNOWS that pain is real and can be managed with opioids to allow chronic pain sufferers functional lives. They KNOW and pretend not to know. It's criminal. And inhumane. It is human torture, that Mengele would have rejected.
I suffer from severe chronic pain and my pain doctor refuses to give me opioids because he fears getting sued. I can’t believe we live in the 21st century and there is nothing for us that are suffering on a daily basis
Same
Thank the FDA. You should be legally allowed to buy medicine without a prescription.
I am so thankful for my neurologist who saw me in pain & gave me all the options I could try to rid myself of it, surgical & otherwise. He informed me in the '90's that he was so glad that a group of east coast scientists & physicians had written a paper after proving that only 1% of "true" pain patients got any kind of "high" from opioids. After hearing that an ex-patient had been taken off opioids & had been jailed for taking them in the 1st place, this incredible man flew from La Jolla to San Francisco, at his own expense & in his own time, to testify in the fellow's behalf. I used to belong to a health chat group & all members suffered chronic pain. It was frightening to hear what chronic pain patients will do to "self-medicate" if they can't find a doctor who will actively treat pain. Some had become alcoholics, others took all manner of street "fixes", some eventually committed suicide. If only the public knew how little time in med. school is spent on the treatment of all chronic illnesses, especially pain, there would be such an outcry that this nonsense of withholding potent pain therapy would stop immediately!!
OMG. I love you. This is being saved and downloaded and shared.
My first thought was: ‘I bet it’s another Ted Talk telling me how to strengthen my mind from chronic pain ‘.
No!!!! It’s real and evidence based.
And. thank you for your work as a disability lawyer, from a Speech Pathologist who is a 20 year chronic pain patient- still working on bad and good days.
Bless you.
I thought the same thing. 😂
At last! Some data that supports the patient in severe chronic pain! I am livid at what is happening in this country to pain treatment because of greedy pharma companies and drug addicts who lied to their doctors in order to get opiates to get high. My pain medication has been significantly reduced and will only be reduced more over time, I'm sure. THANK YOU for this Ted Talk, Kate. I am going to post it everywhere.
Mary Ann Farley its still government intruding
Mary Ann Farley I’m going through the same stigma and have been an exemplary patient I’ve complied to all demands after almost 2 decades. And now my quality of life is completely gone my health has declined and I feel hopeless and helpless now.
I, like you,am getting my pain meds reduced to zero. I wasn't on a real high dose recently, but was 3/half yrs. ago when I worked. I'm now on disability, but had to lose job , home- 16 yrs. each, all my belongings, and live in my car for 4/half mths. Took my 2 cats not knowing where we would go or sleep that night. Lost 1 cat 1st wk. out.😢 Now I've lived in this seedy motel the last 2 yrs. A Dr. reduced my pain meds in 2016, and that's how I lost everything. I missed too much work and the rest followed. So I missed my appt. at pain clinic today because there's not enough meds to help me walk to the bus. I now won't get my refill in 2 days. You just can't win. My blood pressure has been sky high because every time I go there, I know he will taper more and more. Last taper went over the line. Not doable. Where does that leave me? And you? I wish you the very best.💖💖💖💖
@@TuxyKat I'm so sorry that this has happened to you.
I sympathize with both of your stories. Data has shown the physicians have greatly reduced providing their patients with opioids since the most recent spike in opioid abuse starting in 2013. Even in patients suffering chronic conditions such as cancer, physicians are hesitant to use opioids even in terminal patients. (1) It is important that opioids still hold a place in medicine for individuals with chronic pain that want to continue their work, hobbies, passions, and activities of daily living. The code of medical ethics emphasizes that “physician shall be dedicated to providing competent medical service with compassion and respect for human dignity”. I would like to highlight that respect for human dignity is managing patients' pain, whether acute or chronic, responsibly. When a patient that had been consistently using narcotics for decades in order to continue their activities of daily living while living with chronic pain is suddenly unable to continue being prescribed due to fears of the physician being questioned, is unethical. Patients should not be considered “drug seeking” by wanting to manage their pain effectively. The medical communities stance on prescription opioids has fluctuated through time, and I believe it is important for physicians to be educated in the history of the opioid landscape over time. Due to the extreme restrictions on opioid prescribing currently, patients are having to suffer and it has put the ethical responsibility of physicians into question.
1. Foley KM. Misconceptions and controversies regarding the use of opioids in cancer pain. Anticancer Drugs. 1995;6 Suppl 3:4-13. doi:10.1097/00001813-199504003-00002
Thank YOU. I loved the closing. Denying pain meds to those that need them, does indeed deny them a life and moments of some quality of life. Time to give opioid pain meds back to those that never abused them and has never had an addictive body/personality
Thank you Kate for your wise words. I have suffered for 23 yrs and because of the Guidelines, am now tapered down to a point where I have lost my quality of life. I know I'm one of the lucky ones to still receive 'some' pain medication (which makes it very difficult for me to even submit this comment), but the fact remains that I am reminded every single day the moment I open my eyes that, what is the point of 'life if you can't live it'. Bless you dear!
When you have long term centrally driven chronic pain and multiple surgeries {18 years of central pain},
it destroys every fibre of who you are..chronic depression,the consistent thought of suicide to change
the narrative..you wake every day and it's groundhog day...people go "oh you shouldn't take this or that"
When you suffer as i and millions around the world do,you can function better at extremely high dosages
of medications because the brain has become maladaptive .
Through my long journey..damaged my back at 18..now 57,the one thing you realise is the quickest people
to advocate how to treat chronic pain have never truely suffered..if they did they would wish they were
dead.
@61john2112 You really described it perfectly, the "groundhog day" aspect of it all.
Yep, ground hog day. People can never understand what someone else’s pain feels like, how intense the pain is, how intense the pain feels to the person in pain, and how the pain makes that pain feel mentally.
They reformulated the opioids so they no longer work. My husband had a botched surgery at the VA 7 yrs ago and suffers every day. I have a bad back from a birth injury that caused me to lose everything (my house, car, kids, pets, belongings, independence, dignity) and prevents me from working. It's hell on earth. They would rather every1 suffer & die by suicide.🤬🤬🤬🤬🤬🤬🤬🤬
An amazing, incredibly strong woman!
Thank you thank you thank you Kate! This campaign against pain doctors and patients must end. The media coverage is getting better, and I’m having great conversations with people that weren’t possible a year or so ago. Let’s hope we can reverse the damage in the next year or so - unfortunately politicians and most talking heads in media haven’t researched he issue and still don’t get it!
Sara Batchelder IKR!
Pain is definitely debilitating. It will wear down the biggest & strongest individual. I am one of the fortunate people who have lived a mostly pain-free life for 79 years but I've seen it wear down strong people. The government, as in too many cases, is unnecessarily far behind the curve when it come to actually helping people.
I just wanna say thank you Kate for ALL you do for us in Chronic Pain! I had a cervical spinal fusion in 07 & my nerves were severed as well, my spine feels like it’s on fire, I now have nerve damage, cervical arthritis and herniated disc above the plate in my neck! I have fibromyalgia & all that comes with it.. So I’m sure you know how I feel. Again I ty dear for everything you do 💜💜💜
I’m suffering from this insanity now. Being treated like an addict when depend on pain meds.
Brilliant and moving. I hope this video is seen by many dealing with and treating pain theirs or others.
Thank you, Melissa.
Kate, I've only begun to listen but I've gotta say what you're describing sounds a lot like what my girlfriend has been experiencing for years. She had nerves cut from her spine to her uterus during a laparoscopy for endometriosis. The surgeon performed radio frequency ablation. I'm not sure rather it helped her (endo), pain or not but one thing is for absolute certain and that's years later she wound up with unrelenting low back pain that she says she cannot even begin to describe. It's gotten a bit better the last few years but not to any degree that yields much relief for her. She still wakes up screaming in the morning and needs help standing up. She is often unable to stand in the shower without help, she loves to cook but most nights I make dinner. The pain has taken so much from her life. It's been 36 years. At least before the CDC, DEA & their marry band of nitwits came along she was functioning at a MUCH higher level. Now, this pain her doctors added to her dozen other ailments is woefully under medicated which has only brought us both loss of life... loss of enjoyment of the life we worked hard to build. I worry for her safety. Frankly I don't know how much more she'll be able to bare. We keep searching for compassionate care but such doctors are apparently a thing of the past.
What can we do? How do we change the false narrative? Any way I can help just let me know. Thanks for sharing your story! God bless!
I'm very sorry to hear this!
I be dealt with chronic pain for a decade with non opioid treatment with no relief. I felt like I’d lost hope at that point .I was referred by my anesthesia dr who tried several type of injections with no relief to a 70 yr old pain management dr psychologist who after trying a tens unit & afew muscle skeletal meds finally offered me an opioid that changed my life. I could care for my 4 children that I fought with a specialist to conceive &carry these miracles. I was a functioning mother wife again. Thank god🙏🏻❤️ Until 2016, uncontrolled action of DEA closed my specialist who saved my & my children’s lives. Two yrs I’ve asked for written proof of all those yrs of non opioid treatments while having no treatment .my only life saving dr refused to even reply while city( Phila.) DEA denies knowing anything about mu Drs name.Though DEA had worked with my dr to stop an old patient from changing the patient name on the scripts & selling them to others for illegal use. Every Dept of government to be under control while DEA has no control. Once DEA decides to charge a dr they loose everything they’ve spent their life on & many yrs of education on. Not guilty they still lose all their lives effort to help humanity. DEA need to be controlled & Drs who have had involvement with DEA need legal support by the same government who has no control over them. they may be innocent but uncontrolled DEA has caused to many innocent physicians to loose their lives & families lives even though innocent . Changes are needed yrs ago for patients & Drs who are the highest educated but innocent.just as all patients prescribed opioids aren’t Addicts. It needs to begin with government today ???!!
Amazing Ted Talk from an amazing and fully researched lawyer on the subject as well as a former intractable pain patient!! Thank you for this Kate, I will be sharing!!
The war on opioids is a war on those of us living with delibitating chronic pain and our close loved ones
😭😭😭😭
Amazing. I can't believe how strong you've been throughout this! Of course, I'm not surprised you're finding a way to make this about helping other people!
Thank you so much, Kathy!
Many of us wonder, because its being circulated around in CPP advocacy groups, if our civil rights are being violated in some way? The ADA and the SC Olmstead ruling are mentioned. I thought, given your background, you might be able to answer this. Does anything that's happening to disabled chronic pain patients or intractable pain patients, even remotely resemble anything that happened with HIV/AIDS patients that may be a civil rights or other violation under the ADA? People want to do something, we just don't know what or where to begin. Thank you for sharing your experience publically and representing us (the pain community) so well.
glennakatz1 I wonder about this also. I think our human rights are being violated. Chronic pain patients have diseases.
We were wondering about this, too. What about the Intractable Pain Laws and all the progress that was made in proper pain management; with the requirement that doctors add the Pain Scale as another vital sign they have to check?? And it is also illegal to treat disabled individuals like they are drug addicts by making them wean off their medications and go into Suboxone "programs."
@@otherarcher9620 I'm joining these discussions late. Anyone reading, which states or pieces of legislation make this suboxone scenario illegal?
Last ditch effort for me, it’s only getting worse.
I totally agree. Why do true pain patients have to suffer because idiots abuse medication? Proper pain treatment and management is critical to our society. Not helping people with legitimate pain conditions is ludicrous. I have Fibromyalgia and thank god I have a caring dr. I’ve seen for years that understands this condition. I’m having a nerve burning procedure soon in my low back. Hoping it helps with all over pain. Hugs to anyone suffering in pain.
As a student studying physiotherapy, i really appreciate this video and i understand to an even greater extent the importance of at least acknowledging the patient's pain, even before treating it. too many a time us students (at least where i'm from) are too fixated on reaching the goal which is to be able to make a hypothesis of what the patient is suffering from, rather than to listen to them and to be able to assure them accordingly
@ 3:20 finally a brave federal civil rights atty. tells her truth, most people's truth...
Fantastic presentation. Thank you for sharing your story Kate.
Help us fight for our right to have quality of life!
Thank you please keep helping.
Thank you! thank you! thank you! for speaking out about this critical issue.
I'm so happy to see this talk... I'm in chronic pain and I can tell you it's worse when you're young and female... The strongest they'll give me is Tylenol 3... And prescription strength ibuprofen.
Needlessly to say I've considered turning to the street, I'm in Canada they know they're under medicating me and they don't care.
I'm very sorry to hear this. We are in a hostile environment today.
Kate M Nicholson Thank you... Tell me about it I'm praying it can't get any worse than this.
I'm sorry.
I know it's a year later if you haven't found a way out yet go to a methadone clinic just simply tell them what they want to hear that's the only way to get pain medicine. I'm on 95 mg a day I just thank God that I'm Street smart
I also feel the fiery hot pins shooting in my back when I shower. I have been in pain for ten years. Multiple ablutions. My pain meds were reduced due the opioid crisis even though I had been compliant and tested for 8 years. Doctors were afraid of being fired.
man I feel for that girl. after 8 back surgeries I feel kin to her.
This Lady Worded It Perfectly !
Thank you for your time, if only one person at a time, folks I suffer greatly and it's sad, I won't tell my story but like she said let's stop chronic long term pain, it's not needed the stress on one's body alone is enough damage. Government get out of our healthcare, doctors stand firm to your Oaths. Cheers and Godbless.
Thank you Shirley B! The 'Opiod Crisis' is not new. Pain patients have been suffering for decades. It has reached a crisis point, and it appears that our lives will be sacrificed because doctors are out of the picture and government do-gooders fail to see the connection between overseas Fentanyl overdoses and medically prescribed medication that saves lives. The government should not stand between us and our doctors, and our doctors should not stand for being misinformed.
This was very well done, thank-you for sharing your very inspiring story. I work in Chronic Pain, as a physiotherapist in Canada. Chronic pain management is poorly understood, it takes a multidisciplinary approach and goals should be for improvement in function when people have become disabled from chronic pain. Many people lack coping strategies while they suffer and this causes problems in the brain and the loop of pain doesn't end. The approach to Chronic Pain has to change because it is more complex than a one-time insult to the body. PainBC is an excellent source of information for patients and health care providers. Education is therapy in and of itself. Thank-you Kate, you have done amazing work with your life.
After surgery, physical therapy, TENS, massage, topical creams, OTC medication, and months of debilitating pain, it took about a little over a month of opioids to treat my mother's back pain (nerve pain, similar to what the speaker here).
A month. She's pain free for almost 6 years now, taking no medication. She was extremely reluctant, and exhausted every other option first to no avail.
As everything, opiods are a tool that may work in some situations.
She very right those med is the only thing we got for my chronic back pain n body pain for now I hope the science find something better than opioid med n they help me from this horrible pain
Allowing hundreds of thousands of chronic pain patients to live in agony till they commit suicide to save a few junkies isn't right.
Can't like this comment enough.
Yep. So do tell?? What ever happened to Life, Liberty, & Pursuit of Happiness???
You can keep the democratic republic as long as you can keep the democratic republic...
Out of the frying pan...
Dude the new genetics are sugar pills I swear
We should be doing all that we can for both. Calling people struggling with addiction "a few junkies" shames, stigmatizes and oversimplifies what is going on.
Ronald Clayton I have an intrathecal drug pain pump to help ward off pain from phantom limb pain and lower back destruction....as I am an amputee with 9 surgeries (from 1989-2008) on my leg until a diagnosis of osteolysis in 2009. I opted for an amputation in 2011, mainly to regain some part of my life. Most opioids did not work, until after tests, we opted for fentanyl. Because it was implanted in my spine, I received no relief in limb. I used marijuana, which felt like a godsend, but now my doctor is removing the pain pump. I also forgot to add the spinal stimulator that was implanted in 2015, that caused spasms so severe, I needed to go to the emergency room. Only to be labeled a drug addict.....they did not understand the drug pump was causing the spasms. This has been like a bad dream that will never stop.
I'm 70, have cancer, diabetes, lower, upper back and neck pain, I also have neurological pain in the head that my neurologist used to prescribe 3X 20mg Oxycodone per day until Tennessee changed their attitude about opioid pain relief. Even my skin hurts when touched. The last 7 months i have been in bed 99 % of the time, with a painful foley cath in me. So, I'm kind of a mess. My North Dakota doctors and physicians assistants tell me to try a Tylenol. We have a mean country that does not care if it's own citizens suffer. Cancer? Tylenol? I heard that from my urologist, who operated on my cancer last month. Radiation does not start for over 2 months. I'm losing weight and strength. When I asked if they could prescribe only 1 opiod pill per day to give me a break from pain, I was ignored and not answered. What is crazy is the hospital that they all work for has it's own pain clinic.
James how are you doing these days?
She explains every type of pain I have. But doctors dont care today only about money.
This is an amazing presentation! As someone young with chronic pain, my opiate pain medicine does help me to be able to walk more than I could without it, stairs are still an struggle and I have to rest a lot but I can do stuff like help my mom carry stuff and take care of my cat. Undertreated pain can destroy your life, in my case it exacerbates my nausea which can led to a hospital visit and means I have to spend hours in bed with my ice packs. also every chronic pain patient I know try’s many things to help like tens and epsom salt soaks and stuff. I can’t take nsaids because of my gastroparesis and gerd and my pain medicine helps, it’s not a cure but it improves my quality of life. I don’t like the side effects of the medicine but it’s better than the terrible pain without it and enables me to do more. I wish everyone could see this talk, especially those without chronic pain and doctors (especially med students)!
sid2tiger6 I have gastor as well. I have a g /j tube. My pin mgmt doctor we were slowly trying to taper me off, then on doctor didn’t want to deal with my case anymore after 10 years. Opioids have helped a lot, but since the last doctor cut my dose. I’ve been dying, can’t do anything.
Oh wow the only person on You Tube that explains my pain.
I have had CRPS for almost 30 yrs .
I totally understand 😣and my spinal stimulator was the great answer I needed
As the old saying goes. .to truly understand you have to walk a mile in my shoes, only then can you understand
Thank you, thank you, thank you! I have a genetic disorder that causes excruciating chronic pain, for which there is no cure or even significant treatment. My doctors and I exhausted absolutely every other option, with little to no improvement or relief (and often debilitating side effects,) before we finally resorted to opiate pain management. Opiates are the only thing, (when paired with other management techniques,) that give me quality of life. I've been on pretty much the same dose for over 10 years with zero side effects. On the opiates I can work part time, volunteer, and do a few things I enjoy and that give my life meaning. At one point a dr took away my meds for no reason other than the opiate epidemic. I was bedridden, vomiting daily due to the level of excruciating pain, had no life, and eventually became suicidal. I was fortunate enough to find another dr willing to take me on and manage my treatment and opiate medications so I was able to get my life back, but many are not so lucky. I hear the stories all the time in my chronic illness support groups of people with zero quality of life and no dr willing to take on their pain management, and worse, those ending their lives because a person can only take so much pain. The opiate epidemic is very real and is incredibly tragic, but destroying the lives of chronic pain patients does not get to the real root cause of addiction and the epidemic and creates an equally heartbreaking problem.
God Bless you for speaking out for people like us who live with daily pain and suffer...and then get treated like a street drug user. Thank You for taking a stand and speaking for millions who haven’t done so. Thank You!!!
Just found and viewed Kate Nicholson's TEDxBOULDER talk on chronic PAIN and Opioids. Excellent presentation with CORRECT statements on the need for opiates for those experiencing the debilitating effects of Chronic Pain. I'm disabled, 20 yrs due to surgical complications. Thank you Kate.
I'm glad I live in England. Without the pain killers I would have topped myself. There is no other way to stop the pain.
Can u please help us, I beg of you! We r dying, loosing our ability to function, care for our family's, work. Please help us
I am trying, Kelley.
@@katemnicholson hope that you are still doing well. We need lots of advocacy for us. Right now I'm trying to get my insurance to pay for my medicine. But they only want me to take a antidepressant for pain. My husband does not help at all so despite the constant never ending pain I must not give into the crippling pain
Sam C I am very sorry for your lack of support from your husband. If he’s educated in your problem, and he still refuses to help, I wonder why he’s married to you? I don’t want to say “why you are married to him” because I think you probably hope he will help you, some day. I genuinely pray that you have friends or other family members who care and help. 🙏
Can you do something to protect people with fibromyalgia?
Kelley Thronton yes is there any hope for us now. I’m at the end of my rope with this.
They took all my pain medicine away 2 years ago and I have become a recluse in my own home due to my pain.
I think about suicide everyday but I can't tell anyone for fear they will lock me away.
Please hang in there honey.
It all started four years ago for me. I hope you have been able to stay alive. Take care of yourself as best you can until this whole thing turns around. I still have hope even though I am in horrible unremitting pain/hyperalgesia.
You are not alone. But the light at the end of the tunnel is starting to shine, things are starting to turn in our favor on the federal level. Have hope - lean on the Lord with all you are & let him restore you from the inside out. Significant things have broken loose in the last 2 weeks - please know that! One thing that's helped keep me from living under the burden of pain is to get involved in my state & work towards change.
I am so sincerely sorry for your suffering 💔
@Titanmth saturn No and my care of life is worthless with deep depression to the point I don't even take care of my own body hygiene and my family has given up on helping me.
Today doctor shopping is all but impossible if the doctor checks the programs available that show what a patient is taking & by what doctor is providing it to them But because it has become easier to avoid patients with pain we are ignored & denied medical care leaving patients suffering in so much agony suicide has become the only option left when you cant stand another day in agony.
This is a good discussion regarding pain. Thank you Kate Nicholson.However, I agree with Richard Lawhern’s comment regarding the withdrawal of the CDC guidelines. There needs to be an update in this area.. I have written the CDC without answers, as well as written on most FDA dockets. Nobody has really answered we chronic pain patients. The other issue: How much Medical training do Physicians receive. I see a pain Doctor w/ Anesthesiologist after his name. I wonder if some aren’t worried about the minimum dosage of 90 MME’S per day, as they have invasive proceedures as a back up plan, I believe CP pts. Also need to address all pre-med students to hear CP stories which will help them understand Chronic pain, and how Opioid pain meds are effective.
I've written elsewhere about the CDC guidelines although the real problem is the way in which they have been misapplied by legislators, policy-makers, pharmacy chains, insurers and others to create mandatory blanket and one-size-fits-all limits on the dosage and supply of opioid analgesics. This talk was for a generalist audience - I didn't want to get too technical. It only provides an overview. The AMA just came out against these limits this weekend...
The words, searing, throbbing, burning, hot needles describes the pain exactly! The dr's try to make us feel useless and the humiliation of being on pills is awful.
This is over a year old and nothing has changed! I can't find a doctor!
Thank you! Thank you so much, you are the first person who has understood what I call getting hit by a cactus plant, Fiery Needles describes it so much better. I'm sad that you understand but glad that you had the courage to talk about it. Thank you again.
I'm in Chronic Pain I take Morphine ER 15mgs Gabapentin 800mgs Baclofen 10mgs Xanax 2mgs Zoloft! I feel you! God bless you all
This Ted talk needs to be viewed by law makers ( mandatory) and gp ^s
2019, here I sit, not for long though, I too can not do this for a short length of time or else, I end up in bed with an inability to stand. Up and down, mostly down due to the denial of pain meds. Instead, I'm forced to use medical marijuana for relief. Having no choice, I attempt to navigate the use while emptying my pocket book. I get a high....of which, while on narcotics, I Never got. I am afraid to leave the house because I am high and I feel uncomfortable. I have never felt this helpless and abused by a system whom abruptly went and changed laws for reasons of which, I, as a chronic pain patient, have never felt in my life.
I'm and Ehlers Danlo Syndrome patient EDS is an incurable disease there is no cure and the pain gets worse over years. Doctors tell me "Oh well just learn to live with the suffering."
I've had family members who were forced tapered and cut off cold turkey. They died either by medical complications (aneurism, stroke, heart attack from untreated pain) others committed suicide.
Sad thing is that many don't have the money to get treatment. And they sure don't have many people that help them. You were very lucky to have many people to help you.
Thank god for ppl like you . Please don’t stop fighting for us chronic pain patients
Thank u so much Kate!!! I suffer from many conditions and the worst is a nerve disorder in the face called trigeminal neuralgia. It hurts beyond belief and many don't even know it exits. So it is so hard to explain to almost anyone. I am fortunate enough to get my meds to help me live a relatively normally life but not everyone is. You are so amazing and thank you for speaking out about the truths about opioids. They really do give people their lives back.
I LOVE this talk.
The longer we prohibit pain patients from the medications they need to improve their quality of life....sadly, the rate of suicides will certainly increase. I’m already witnessing this in my online FB support group for my chronic illness.
I think that’s the point! Persons with chronic unrelenting pain who are unable to work are sometimes seen as an economic drain on the medical system and useless to society, sometimes I can’t help but think they want us to commit suicide or eventually have us euthanized 😢.
I've never done street drugs a day my life, and I have been using pain meds 25 years. I never became addicted, and I never had withdrawals. I don't even have memory of what it's like to not be in pain. Can't work anymore, so what's the point of staying around in so much pain, that you pass out? They don't allow us to live a semi-normal life, so what's the point anymore? They don't understand why you have a stockpile set aside, for when you just give up. They don't understand what it's like to have chronic pain, and not have it controlled. When it was controlled, I was able to work, but when your medications are cut by 80%, there's not much you can do. Believe me, I've tried. They care more about keeping their licenses, than about a human being. I pray every night for God to take me home.
I’m sorry man I am 17 and now have pain everyday not debilitating but I’m scared of it getting to that point becuase it’s gradually gotten a little worse everyday and I’m just waiting till Elon musks nueral link comes out
Moving and important.
Very important topic and extremely helpful talk. The dea is making treating pain a crime. We need to treat pain and listen to patients
I agree. Chronic pain is such a bummer. 😔
Thank you for this video, your efforts..
I have Multiple Sclerosis. I was diagnosed in my mid 20s, as years went by, I started have pain as one of my side affects. It got worse and worse as time went by to where it was unbearable. I went to my neurologist and he tried everything under the sun for my pain, most of which with did nothing or just knocked me out. I was put on opioids and my life changed. While my pain is never gone completely, I have a better quality of life.
This crackdown is too extensive. For those of us who take our medication as prescribed it isn’t right. I see too many people that illegally obtain these medications. That is where the problem is.
We, that have taken out medicine, like myself for 15 years now, need to stand together and have our voices heard! These people making decisions for us don’t know what chronic pain is and are probably if they experienced it would be the first ones that panicked and illegally bought some. I’m sorry if that seems harsh, but I, like many others, go by the rules, and shouldn’t have to suffer because of the junkies out there!
I have MS, too, and other medical issues, and my pain medication dose was still cut. Its agony. I have no quality of life now.
I have severe fibromyalgia. I am on a small dose of opioids, but my doctor wants me to stop taking them. I told her if she can find a replacement for them, I will gladly stop. I have tried every single medication that there is and I have had severe reactions to them all. I cannot tolerate anything except the opioids. They don’t completely take the pain away, but do help when I have been awake most of the night in excruciating pain and discomfort. She also told me that they usually only give opioids to cancer patients. I believe my pain can be every bit as bad. It is so sad that our doctors are just not taught enough about chronic pain treatment. We should not be denied anything which helps us have a more comfortable existence. The pain destroys so many lives. I hope more pain specialists see this.
Thank You
Totally agree and have for a long time. Then I personally have been dealing with this battle for about a decade and a half. And while I agree I've all but given up on anything's changing for the positive in this area. I know that sounds very pessimistic but I have tried, educated, advocated, self-advocated.... And I have learned that a self advocating pain patient-to a doctor, is known asan addict.
Outstanding presentation. I will share with my excellent pain management doctor!
After 6 months of standing and twisting thro knee, hip, back pain, difficulty breathing from tight muscles and panic attacks. One day I started vomiting from the pain I couldn't walk more than a pace of heel to toe slowly. I knew the doctors wouldn't help but finally went anyways. I got diagnosed with sciatica, no one (even now after two yrs no real diagnosis for the cause just low back pain/ sciatica) tried to find the cause. My doctor prescribed naproxen.. for nerve and muscle pain and anytime I went back for help she'd prescribe more useless high risk low reward medication and verbally shove me out the door. I've been through 3 physical therapist, a neurologist, ER ( when I felt in shock from the pain) no one treated me like more than cattle. Davis chiropractic is the first place that's actually asking what lead up to not just what is felt now. It feels like Most doctors, nurses, and physically therapist are actively just trying to end the conversation instead of getting the information they need to do their jobs properly, they get pain either way and even more the more u come back. Stigma around quitting work to try to fix myself only amplifies to tightness which in turn amplifies the piriformis which over laps ur sciatic nerve. Financial, social, general stress, anxiety, and my mental illnesses worsen the pain and the pain worsen the above.
God please help us. We r dying. Why r they taking away life saving medications away from us that need them.
I came to RUclips today out of sheer desperation. I cannot take any more pain. I. Can. NOT.. Normies don't understand, and never will until it happens to them. I grieve for who I was, I grieve for who I was supposed to become. I just want to be normal and do normal things. I want to participate in my life, not just simply exist as a bystander. I have been forced to find pain relief from friends and family, and that's when I actually have a little bit of money. I have taken so much otc meds I have injured my kidneys. At one point a few years ago, I'd take 4 each of acetaminophen, ibuprofen, and naproxen, and I'd take that 3 to 4 times a day, knowing it was bad for me, but so desperate to find some sort of reprieve.. this has affected every relationship I have, with my children, my husband, my friends.. can't work this way, no one wants to keep you on if you have to constantly call off. But my neighbor who was a heroine addict, he's been getting treated for SEVEN YEARS. WTF? If animals were treated in this way we would have animal rights groups everywhere up in arms. This is torture, physically, mentally, emotionally, spiritually. It's all encompassing, and it's sadistic how pain patients are treated. Just thinking about having to leave the house for errands, housework, or something as simple as a shower now throws me into anxiety because I KNOW that it's going to hurt even WORSE, if it's possible. Cannot sleep from pain, and that's the cherry on top. With all that pain and anxiety, sleep is the only reprieve, but I cannot sleep from pain. No sleep affects your mental status even more. The other options doctors have for pain either do not work, or cause additional side effects that worsen the already miserable pain. I cry everyday now. I've stopped talking to people through messages and calls. I've stopped visiting or accepting visitors. I don't want to have to keep explaining to everyone, don't want to hear anymore good intentioned ideas from anyone. I know what works to give me quality of life, and it is being denied. My choice taken away. And so I sit and wonder, every day, is today the day my mind snaps?
You've defined so many of our lives. Let by the wayside of the world wondering how they can carry on and close their eyes, ignoring common sense. While we die. Prayers for comfort.
Oh and my phones always silent now too. 🙏❣️😔🕯️💙
🔥💯 Repeal the controlled substances act now!!!! 🔥💯
Join doctors and patients of courage!!!
Thanks Kate for your lecture. I’m sorry for what you suffered but I’m glad u are better now. I live with chronic pain & Australia also denies opiates to sufferer. True doctors should have mercy & compassion, & not agree with drug enforcement agencies. I see the medical society now as a drug making money society, not as a carer. I hope to god that the rules will change. I don’t want to be denied medication & suffer just because they say so, after all it’s not their life
I feel it and empathize we are not alone. Love and best hopes to you and your husband
I'm in so much pain I can't stand to stay out of bed very long. How am I suppose to live without pain medicine. I don't know what to do. I used to be on Norco and it kept me out of pain. Pain has ruined my life. I need help and I can't get it.
I too am out of options. My spine is inoperable and deteriorating. I don't know what an option high is, neither does anyone else who suffers pain.
I am a primary care physician. I am also patient. I had a running injury that was misdiagnosed as a yoga injury, therefore causing a devastating delay in treatment which has left me with chronic pain. I treat many patients with chronic pain with full agonist opioids, and I also treat many patients with opioid use disorder. The line is very blurry, and it has very little to do with the patient's personality or intent. The argument that people who "abuse" opioids ruined it for patients who truly "need" opioids for pain management is over simplistic and only serves to further marginalize and dehumanize patients who suffer with opioid use disorder. True "abuse" of opioids as we imagine it is extremely rare - this represents a fleeting moment in the clinical course of a patient afflicted with substance use disorder. Most people who use illicit opioids use them not to get high, but to not get sick. This is not different just because of the presence or absence of a prescription. It is a chemical property of all opioid medications that the brain becomes neurochemically dependent to whatever extent if that patient is exposed to chronic daily exogenous opioids. It truly has nothing to do with the patient, and everything to do with the medication.
I will also note that having a prescription for opioids does not mean it is legitimately medically indicated or safe or appropriate for the patient. The difference between "using" and "abusing" opioids often comes down to one arbitrary signature by a person (the prescriber) who may or may not have the patient's best interest at heart or be complying with current standard of care. There is no compelling evidence that monitoring the patient or screening for "addictive" traits or risk factors truly improves outcomes. Remember that this is a chronic condition so acute clinically significant outcomes are limited to risk of acute overdose and death, not to "addiction." Most clinically significant outcomes are chronic, over years not months.
Let us also consider that when we use these risk calculators to decide who is appropriate for chronic opioid pain management, we actually filter for factors which are more likely to be experienced in disadvantaged populations - thus we end up with dramatically different pain management strategies for subgroups such as people of color and people identifying as female. These disparities are supported by clinical research and are now common knowledge in the medical community.
Agreed that it is now a terrifying landscape to practice medicine, given the risk of legal complications especially with prescription of chronic full agonist opioids for pain management. Also agreed that we are not taking care of chronic pain patients as we should for fear of litigiousness. Also agreed that we do not listen to patients like we should, and we often miss things that end up negatively affecting patients' health.
The field of medicine is not perfect. It's not even that great, all horrendous historical abuses considered. The most damaging thing we can do, I believe, is to blame patients for our mistakes - in this case, to blame patients for the expected clinical results of the known chemical properties of medications that we prescribed and condoned for decades. This is inclusive of all patient populations - addicted or dependent or neither, using or misusing or abusing, or any other arbitrary label. All patients deserve to be treated for what is causing their suffering, and it is never our place to blame or judge.
I really enjoyed this talk, thank you for speaking out.