Jayne O’Donnell @JayneODonnell
If you suffer from chronic pain, I’d like to know how the state and federal government response to the opioid epidemic has affected you. DM me or email jodonnell@usatoday.com
article now published
https://amp.usatoday.com/amp/727015002
Filed under: General Problems
I’m totally embarrassed!! To be turned away from the cvs my family been going to since I was 5. I grew up around corner from sav on drugs. My mom worked there for a short period well attending collage. Now my wife kids & family go to are local cvs. My grandmother father uncles go to the same cvs. I was turned away , my insurance & optumrx contacted cvs on the issue but they had nothing to say. I have a hip replacement, my pain medication always last me longer then the supply says. I’m very responsible with my medication, I see my chiropractor & physical therapist weekly, I’m looking for options, I’m a father I been with same career since 2004. Make over 100k a year. I don’t want to shop around for a pharmacy @ my age. Somebody needs to no something about this problem.
Nothing seems to have changed in your life… but… CVS is not the same company that your family has been dealing with for years and most likely what you have encountered is a change of the Rx dept staff… who cares how long you have been patronizing that particular CVS. and apparently CVS response to your insurance company means that CVS doesn’t care if you remain as a customer of that store. From what you have said … you are probably taking a C-II opiate and the new pharmacists at that store doesn’t like to fill those C-II’s.. doesn’t matter what you individual medical needs are.. ONLY THEIR OPINIONS COUNTS.. Find yourself a independent pharmacy where they are less likely to play games with pts’ medical needs… here is a website that will help you find one by zip code where you can take all your medication needs. http://www.ncpanet.org/home/find-your-local-pharmacy
You can go to govtrack.us There you can find your representatives, senators and legislation. You can use your cell’s location to find your state’s representatives and senators along with their contact information. In the “legislation” line you can select by subject. Scroll till you see health. Select it and you can read all the various healthcare laws that can affect chronic pain management, opioid management and how Medicaid and Medicare recipients could/will be affected.
**How we choose to manage our Chronic Pain should be our choice.
**There is no room for the government in a responsible doctor/patient relationship.
**Suicide is not Pain Management.
Amen. chronic pain for 30 years and it is deplorable how I am treated. And now my meds are being reduced. I want to work the job I can. I help people with disabilities and can mange a schedule. Now I am afraid of losing my job and home on top of having to endure intractable pain. I just want to live the best life I can. Now it is being torn from me. RSD is the worst of the worst.
Total Shame. I feel you, I really do. We have a Petition on Change.org posted by Dr Patty. Please sign and encourage your friends to do the same. Listen to Joy Robinson and start a campaign of writing to your elected officials telling them your story. It’s the only thing we can do at this time until our government comes to their senses and stops the lunacy.
Thank you, Anonymous, for telling us about change.org
We need to be able to reach out any and every way we can. This “War on Opioiods” is our modern day Spanish Inquisition, Salem Witch Hunt/Trials. There are too many Chronic Pain Paitents being left without necessary treatment for quality of life. We have to be the ones to say enough is enough because no one has our backs.
Take care of yourself and please know you are not alone.
**How we choose to manage our Chronic Pain should be our choice.
**There is no room for the government in a responsible doctor/patient relationship.
**Suicide is not Pain Management.
Joy;
you’re right down the line. And that last line could be our rallying cry….it’s beyond a criminal shame that it is becoming ever more apt.
I didn’t used to put much stock in conspiracy theories, but it sure does feel like they’re trying to stop the (as they perceive us) “useless takers” from being a “drag” on society. My long-term doc first tried to convince me to apply for disability in 1989. I managed somehow to work, pay taxes, & give 1000s of hours to teaching/tutoring children until 2011. But now I feel like I’m seen as a parasite on the real producers, like they want to just shove me & all of us onto big ice floes & let us vanish into oblivion.
Please reach out to your elected officials. And check out change.org
that Anonymous mentioned. WE have to be the ones that say enough is enough. This is our modern day Spanish Inquisition and has become unbridled lunacy. This ‘War on Opioids” is leaving Chronic Pain Paitents without necessary medication for a quality of life. Please take care and know you are not alone. We must have faith that we can bring about a positiive change.
**How we choose to manage our Chronic Pain should be our choice.
**There is no room for the government in a responsible doctor/patient relationship.
**Suicide is not Pain Management.
My name is Dijon ( Deon).
I was injured at 16, and had a short leg cast put on too tight – it cut off the circulation and killed the nerves.
My leg was allowed to remain on too long and the damage went to my spine.
It’s shutting down my organs one by one and it will eventually kill me.
39 years of sympathetic nervous system damage, unrelenting torture every second of every minute of every hour, day after day, month after month- year after year after decade.
My body feels like somebody is holding a torch to it all the time, sharp shooting electrical jolts that shoot through my limbs, with sharp stabbing pinpricks.. it feels like I’m being electrocuted from the inside out.
My limbs are so deep down cold that no heating pad or blankets can warm them up.
A light touch, clothes, blankets, a breeze, or change in the weather irritates it, and those are my good days.
Excessive activity or stress will set me up for a flare up.
YEARS of mega doses of opioids, 0 NON compliance issues. 0 early refill requests. 0 requests for increase- I HATED WHAT THEY DID TO ME, to my head, my body and even though they were better than nothing- It was a constant struggle within me, when the pain got out of control, as I didn’t want to take them.
I’ve had gangrene, blood clots, blood poisoning, sepsis, pulmonary embolisms, pieces cut away, 240 surgeries, 10 bouts of osteomyletis and many more complications.
All of my vertebrae are either broken, fractured or collapsed, and nothing can be done for them, because of the condition of my bones.
The Blood poisoning, sepsis, gangrene, 3 amputations, all put me on my deathbed far more times than I like to think about.
Too many, “wasn’t expected” to pull through the night, signaling a “come say your goodbye ” phone call, way to often. Multiple organ failure, picc lines and much more.
Last September I was told the damage has gone to my brain. It’s also now affecting my trigeminal and ocular nerves.
It’s considered full body Causalgia major type 2/ CRPS type 2-3 end stage- all because of a cast.
I learned self hypnosis, visual imagery, biofeedback, and other methods of trying to control my pain, early on, in order to stay away from the prescribed pain medicines as long as I could. Acupuncture, physical therapy, contrast therapy and YEARS of therapy.
1996, I ended up bedridden. Loss of bodily functions, seizures and muscle spasms that contorted my body into unnatural positions until I passed out from not being able to breathe, and partial paralysis of my throat.
10 years, bedridden, I couldn’t do anything.
Nov 2017, I went to my appt w/ pain management (monthly hoop jumping- tests), and I was turned away. No terminal cancer- No Pain meds.
No taper, no warning, no discussion.
Yes, I am terminal, just not a terminal cancer patient.
So everyone who didn’t fit that pigeon hole- was abandoned.
But, they could sign me up for 3 four hour group P.T. and daily living skills classes- all taught by someone who was younger, than the years I have been dealing with my health issues.
I can teach them daily living skills!
Years of well documented conditions that I’ve been dealing with: Told ” there are other ways of dealing with addiction”
WRONG THING TO SAY!
1. GUIDELINES- NOT LAWS
2. I was a 3rd year med student, when I had to take a medical leave of absence and was never able to return due to my health…
3. Tolerance and addiction are not interchangeable.
Dependence and addiction are not interchangeable
They need to stop being used as such. Chronic pain patients and those who have chronic diseases, need to stop being treated like those dealing with addiction issues.
They need to not be forgotten and treated as insignificant!
4. As I said: compliance issues, in fact I often went over a month, for refills.
I always tried other methods FIRST.
5. Withdrawals from 30+ years of opioids is .. . UNBELIEVABLE!
So very dangerous!
As many times as I have been on my deathbed- I never thought I was going to die.
Until then
I love reading, and science. The mind fascinates me.
I love lapidary.
I utilized Facebook, and lapidary groups while bedridden, and a friend saw me typing to another, about the pain
MY “future”
MY decision.
He said, ” I have something that I think will help you.”
There was no person, that was more of a doubter then I was!
I am a smart person! I know how to research, have high comprehension skills.
I learned, read, researched, talked about, researched more and ohhh my questions.
Initially, I hung back and watched. Waiting for someone to slip and say ” it’s just a get rich scheme ” ” B.S.”
But what happened was, that I started crying, that DEEP GUT WRENCHING SOB.
I couldn’t figure out why at first.
I was waiting for someone to say this was just another way to scam people in need. Desperate for help.
But instead, what I saw, was HOPE.
Early in the month, I had made my decision.
I couldn’t do it anymore.
I was within a hour of following thru, actually less. I was on my way out the door to follow through with my decision and was met by the mailman.
My order was 3 days late, because of the weekend.
But I figured it was a scam.
I have a beautiful daughter and 3 grandkids.
I have FOUGHT TOOTH AND NAIL TO SURVIVE.
As bleak as my EXISTENCE was; I didn’t want to die!
April 29th 2017
MY first time trying kratom.
No, I am not cured.
I know that I’m not long for this world, but I can deal with that differently now.
I am off of 19 of the 21 different meds and opiates.
I have my doctors behind me!
I still have pain.
I still have flare ups and bad days.
But
They aren’t every second of every minute of every day, day after day……
On that day, I got myself out of bed and into my wheelchair for the first time in over 10 years.
I am making memories vs worrying about what I want to say, to who, before I can’t.
I have been outside, gone for rides.
I participated in the Ca Rally at the Capitol in Sacramento, Ca for kratom.
I don’t have to force myself to remember to breath through the pain.
I’m not crying in my sleep – when I can sleep.
I am not falling asleep in my food and conversations.
MY world isn’t bleak and grey.
I can see and appreciate joy, happiness, color, and Life.
For almost 14 months, I have been like a child, seeing things for the first time.
It’s been tough as well !
All those years, my system was so overwhelmed by just survival needs, that even though I know of my stated intelligence- It feels as if socially, the pain and ill health retarded me, in some aspects.
Years of unmet, unattended to issues, came flooding in.
Kratom, the kratom community, and my doctors provided me with a safe, accepting, supporting group of people who are the most wonderful people I’ve ever met.
This last 14 months has taught me more than any book.
They walk in my footsteps, as I walk in their shadow.
My pain, is their life, their echoes are my life.
WE know what each others days are like, Let alone the nights.
Pain, let alone chronic pain, chronic diseases, depression and mental illnesses are very lonely things!
There IS NO HIGH!
There IS NO BRAIN FOG
No Euphoria
NO FEELINGS ASSOCIATED WITH THE OPIUM DERIVATIVES
NO RESPITORY DEPRESSION
I am no longer arguing with my doctors about quality of life vs pulling the plug.
I have peace of mind
I have a little quality of life.
And, I have HOPE!
But I AM AFRAID!
GREED, ABUSE OF POWER,
ULTERIOR MOTIVES, ignoring the science that so many world renowned scientists have put together and submitted. Congressional Representatives have requested the smear campaign against kratom, be stopped.
All being ignored.
If this ban goes through, it
Will create a very dangerous black market for kratom.
There WILL BE deaths – more of them.
Crime will be associated with a beautiful thing.
Suicides will be the end result.
I will be turned into a felon
Or..
I don’t know.
I have found a way to sincerely smile. Laugh.
I went outside and played in the rain, went thru puddles in my wheelchair.
Must have looked like a lunatic. Laughing as I went through them and spun in a circles.
I felt Alive
They want to rip it away, just as I turn 55, and begin to experience life.
We aren’t taking the leaf, isolating the alkaloids, isolating them from each other, enhancing the 1% of one whole that is said to be 10 x’s it’s natural self, or morphine.
We value the gift.
We value our lives.
I have met people who I now call my friends, that are off of years of heroin.
They VALUE, what they have, and couldn’t do before.
We eat healthier and are more aware of what we put into our bodies now.
Those who can, are “contributing society members” now… full time jobs and have been working hard at mending fences/bridges.
We’re not against regulations! We already have health issues and aren’t interested in more!
WE have tried to get it Regulated.
So that there Are safety measures
No adulteration
People looking to get “high” (due to the FDA smear campaign/ their associating it with heroin, addiction and “opioids”) Are Supremely disappointed, quickly!
I am seeing people WITH addictions, get off, and stay off of heroin and other long term abuse, OF ILLICIT DRUGS.
And IT’S A GREAT THING TO WATCH!
Kratom, as a whole- has a couple different things going for it, that neither Synthetics, or individual isolated products- Will.
Kratom has its own “safety” mechanisms built in.
No respiratory depression, and if you take too much, you get nauseous and sick.
Please, don’t take this away!
It’s changed my life in so many ways!
It’s changed millions of lives!
I’m more aware of the things I eat. I eat healthier. I drink water, vs soda.
I am happy.
Yet there is a shadow looming. Waiting and WANTING to pounce.
GlaxoSmithKline tried and failed for Many years, spent a FORTUNE trying to patent a ” uniquely different alkaloid, with no respitory depression, that is equivalent to codiene and a safe replacement of opium related products such as morphine and their side effects”
Scott Gottlieb has too many financial ties to them and other major pharmaceutical companies. He is on their boards, lied under oath, and gets paid hundreds of thousands of dollars a year, by them.
Testifies to ” their safety and non addictive quality ”
Ignores the same scientific community, that has been respected worldwide in addiction, and abuse related products- saying don’t ban.
Yes, people need to use caution- with anything!
It’s NOT A CURE, but a tool.
WE all know how successful the prohibition of alcohol was.
Alcohol
Tobacco products
The Real Street drugs and “drug war.”
Rather sad, that “a lifeline to millions” is such a threat to a Agency SPECIFICALLY CREATED to provide Safety of products.
To Prevent Imminent danger, and provide public health and safety ”
I’m only stating the coincidences that have taken place in my life, since kratom.
I’m Not making medical claims.. just coincidental events.
My doctors support me. They can’t believe the difference.
There’s not one person or aspect of my life hasn’t been negatively affected by my health and pain!
My daughter and grandkids were out of my life, for almost 3 years… but are in it now.
I couldn’t ask for more!
Sorry about the length. It’s a great feeling- passion!
To have it again!
Sincerely,
Dijon
I agree with all of these post. We need to stick together. This is injustice.we did not ask to have this pain. Mine started at 17 and im 40 and yes i have thought about killing myself..just cant take the pain at times.the meds just ease it off. And being dependant on thers sucks.people thinks it fun to sit and get check so not true. So what are we gonna do for pain. .its alll a big scam.i hope this helps know it mite b late but chronic pain makes u suffer in many other ways .i hope justice is served..
Everyone needs to send their stories to the fda hearing –deadline july 5th to;
jheath.dpp@gmail.com
…please, we only have 30 or fewer!! We’ll never get listened to if we don’t speak!
my comment to islands weekly. the local paper for the san juan islands.
one of our “disgruntled” veterans just committed suicide by doing so during a press conference. maybe he was doing so to bring attention to a problem. like the lack of acknowledgement to chronic pain in this country. https://www.nytimes.com/…/disgrunted-veteran-fire-atlanta.h… . even the VA seems to see a correlation between vets being taken off their pain meds and committing suicide while still, not acknowledging chronic pain. page 10 of 48. https://www.mentalhealth.va.gov/d…/2016suicidedatareport.pdf . the DEA has a document stating the illegal drugs are the problem, https://www.dea.gov/divisions/hq/2016/hq072216.shtml , and even has a guide, https://www.dea.gov/…/Counterfeit%20Prescription%20Pills.pdf , and even made some busts that when tested, the prescription pills were found to contain illicit fentanyl. this bust contained 30,000 counterfeit prescription pills. https://www.dea.gov/divisions/phx/2017/phx081817.shtml . our govt is responsible for the border in which these illicit and deadly drugs come across and are responsible for at minimum most of the overdoses and deaths in this country.yet the focus is on pain centers and docs, and big pharma. how about big insurance, who pays most of the doctor bills these days, which with chronic pain adds up to around 635 BILLION per year in the US. https://www.google.com/search… . and how much do politicians on both sides get from big insurance. https://www.followthemoney.org/…/growing-payouts-from-ameri… . i would think people in govt would at least consider the possibility that people who suffer from severe chronic pain might commit suicide after being taken off their pain medication after the closing of Seattle Pain Center, which had 25000 patients, one of them being danny peck, who committed suicide right after the closing. https://www.seattletimes.com/…/the-whitecoats-dont-care-on…/ . many chronic pain sufferers wont commit suicide out of belief in God as i do, but to hear anyone talk about honoring veterans, while veterans are committing suicide, without acknowledgement of chronic pain just is nothing short of insulting. especially with the narrative that all chronic pain sufferers are just a bunch of drug addicts. 100 million people suffer from chronic pain. that can be just from age. between 32 and 40 million suffer from severe chronic pain. that is typically cancer, aids, autoimmune disorders, or severe injuries involving the spinal cord.https://www.nih.gov/…/news-releases/nih-analysis-shows-amer…. this isnt an “opioid” crisis. this is a chronic pain crisis. this is a human rights crisis. this is your family, friends, and veterans.
Alabama’s Attorney General (Steve Marshall) wife died about a week ago. In Mr. Marshall’s own words, he had said ( not quoted by exact words) that he had spoken to his wife the night before she committed suicide that she was tired of being tied and that this phone call would be the last that he and she would have.
Why in this world he didn’t call family members ( where she was living with) or close by or call the police is beyond me. Seems like he would have called ANYONE TO MAKE SURE SHE DIDNT HARM HERSELF!!
But he didn’t and the next morning he received a phone call saying that she had a shotgun wound that she did to herself.
Mr. Marshall explained that his wife suffered from pain and mental issues. He also said that his wife had been on opiods and fetynal.
Now, he has his mind made up that NO ONE SHOULD TAKE OPIOIDS.
This is very unfortunate that his wife couldn’t or wouldn’t deal with the fact that she had a addiction disease, however, not all chronic pain patients have this type of disease and takes there medications as prescribed.
What really blows my mind is that now this Attorney General which is running again for same position sits on a AL. Board concerning the opioid epidemic, as well as a few others, that I am almost positive has NEVER been in enough pain to have to depend on opioids just to be able to have a somewhat better quality of life or doesn’t have a clue how withdrawals really are.
Now, I think a majority of chronic pain patients may agree with me on this.
I’m interested in reading comments on peoples opinion regarding Steve Marshalls’s stance. Please feel free to comment.
This was only my thoughts and I may be looking at it wrong. I am asking anyone that reads this ( checks the story regarding his wife’s ( Bridgette) story out completely ) and then leaves a reply back.
Thanks
Nicole has by far the most heart wrenching story,tho they are all pitiful.I promise you,Nicole,if you can find inyour abused heart to forgive the slug[s]animal[s]that left you a quad-NOT EASY!!!!But if you see the truth it is a pervasive evil that takes control of a ‘human’that can do that to another,I DOUBLE GUARANTEE PROMISE that Our Lord Jesus Christ will measure out in full what they have coming.It’s not stupid new age karma,it is Divine Repricocity.And you WILL see it.The same goes for all the crooks wrapped up in this ‘opiod frenzy’It can sometimes take a lifetime,but it will happen.I have experienced miracles no one would ever believe,myself included,if I hadnt witnessed them myself.My deepest love and prayers for you,Ms.Nicole!God will NEVER forsake you or leave you.Why He allows horrors to happen,I dont know yet,but one day,we all will.Please accept my prayers and love for you.In fact,that goes for every one of you that wrote your own story of turmoil here!Lisa Alligood
I agree 100%. However, ALABAMA would probably be the last State to ever come to there senses, but in the meantime, our chronic pain patients and veterans are suffering needlessly.
Any person whom seeks relief from legitimate medical reasons and gets cut off or cut down just because of these “Rules” should all join together ( as we are) and demand “THIS IS CRUEL AND INHUMANE PUNISHMENT”.
Since they are just now finding out they were ” supposably wrong ” all of these years, why should we now believe them to be correct??.
If the Government really cared about peoples health then this sure isn’t the correct way of showing it. Its killing many people now by forcing there bodies into the most worst, unimaginable pain ever and even causing to much stress on there hearts resulting in heart attack deaths.
I’m pretty sure there has to be someone that has actually went thru addiction and felt the pain as many times that chronic pain patients experience or surely they wouldn’t just be sitting on a board that can regulate as many laws as they choose to do. Right? I mean come on, education is great but personal experiences speak for themselves.
Cried for 45 min after each story.I simplycannot believe some of them.I find myself wishing to hire some group of muslims to fly jets into the DEA and FDA buildings.And to hell with any “innocent”victims!Are WE NOT EXACTLY JUST THAT??????And Trump will get the gas for it all when it was B.Hussein O-BOMB-uh who started this ‘kill em off’program.This crap doesnt crop up overnite.I am Heartsick.Have a few tablets left when they’re gone,I am terrified!For the 1st time,I am ashamed to be American.I am only grateful my mom and dad[both chronic pain sufferers,dad due to wartime service]are not here now to go thru this fiasco!An unbelievable state of affairs.Too many of us to NOT uniteIf I ownesd any weaponry,I’d promise I’d be using it at this ponm
Wth!!
Physical Dependence Does NOT Equal Drug Addiction-Just Taper!!
Overall, patients are grossly undermedicated for pain. Regardless of the amt needed, all they need to do is TAPER. Thank You.
what a moronic statement… of course it is easy to make such moronic statements when you do it ANONYMOUSLY… yes they are under treated and yes they can be tapered off the medications.. but.. they cannot taper the pain away.. maybe you have been standing out in the Tucson,AZ sun/heat too long ?
Many of these politicians w/opiatephobia disorder truly think the human body heals all the time,,,they were soo stupid,from their bigotry,,they refuse to recognize deseases,uncurable deseases,medical errors,,destroyed nerve ends,spinal cords etc,,,,,jmo,,,this fake opiate crisis was never about our safety,,,it was about $$$$ and control by bigots,,,prejudicial bigots,,,who see the medicine opiates as this demon drug and if u take 1 opiate your brain goes haywire,,,,just like the prejudicial idiots did w/”reeefer madness,”’same thig,,same prejudice,,same lies,,same bigots ,,maryw
Exactly! I have to fake being an addict to get Suboxone just to get enough opiates to help with pain. My use increased due to interaction with another medication. Once I stopped taking it, my use decreased and decreased again once I weaned myself off of Fentanyl. After eight years opiates still relieve my pain. My pain has not increased, neither has my tolerance. DEA created this fake crisis. Fake news tells us about overdoses, when we know that they are really suicides due to insufficient pain relief. Also, many referred to as addicts are nothing more than Opiate Deficient and presenting with Pica. Following historical timeline of legal opium and it’s subsequent illegal status, the generation of addicts is the first where opiates weren’t legal. Our parents and grandparents imbibed in legal opium. Not having the same access, hundreds of thousands falsely labeled Treatment Resistant Depression or Addict just need adequate external source of opiates. God knew what He was doing when He said in Genesis 1:29-“Behold, I have given you every seed bearing plant for your benefit. It shall be as meat to you. (A staple part of our diets). Poppies and Cannabis should be legal.
I have been a chronic pain patient for 16 years now. Had 7 back surgeries because of degenerative disc disease, rheumatoid arthritis and all it’s related degeneration issues. I have tried all and every type of pain relief opioid, nerve meds, and otherwise (physical therapy, spinal cord stimulator, spinal steroid injections, burning nerves away, fusion of my SI joint, artificial disc resplacement). Opioids are just one thing in my overall treatment that helps with my pain relief. It doesn’t relieve it all but it helps. The physical therapy, spinal cord stimulator, nerve meds,and muscle relaxers do the rest. I can only do about 30-40% as much as a normal person would WITH all these things in place. Now think about if my opioids are taken away what will happen. I will most likely be home bound. I have many friends on facebook who have had their meds cut or taken completely away already that went from relatively productive, even working adults to home bound and completely disabled. Many are considering or have already committed suicide because they can’t contemplate living their lives in that much pain. I go into my pain management doctor every month and get my pills counted and my urine sampled to make sure I am compliant. They could even come to my home and make sure I’m compliant there too (according to the contract I signed this year). I always have been but that doesn’t seem to matter anymore. I wonder if this is what it was like being Jewish in the beginning of WWII? I don’t know when my number will be up. Now the drug store even has gotten involved in deciding how much medication I can have and when I can have it. I can’t go on trips out of town for fear that I will need my meds during that time and I have to be in town during those days to get it or I won’t get it. I also fear I will get to the drug store and they won’t have it because they are limited on supplies now. I may have a medical emergency and need to go to the ER but I won’t be treated the same way as everyone else. If my known kidney stone decides it’s time to go – I may as well not go to the ER because they won’t give me anything more for pain. I will just have to suffer through it. The meds I take currently don’t do enough to cover anything like that but they don’t care. When will this end? We need an advocate. Who will take care of the elderly who can’t speak for themselves in the nursing homes suffering away but can’t have medications now? Is this humane? How is this really helping the heroin addicts on the street?
March 5 1977 at the tender age of 16 I said “ No” to drugs and sex. As a result I was beaten up and rendered a quadriplegic confined to a wheelchair. The assailant received 28 days in a work farm, I received life a quadriplegic. For the first 18 years of my SCI the only thing I took for pain was Tylenol. 2004 I was in a head on collision from a guy strung out on Meth. My doctor understood my reluctancy to trying pain medication and I tried Cymbalta. Took a year to ween off Cymbalta because it wasn’t working for my bone, muscle, nerve pain. After trying several different Opioids that felt ok finally found an opioid that worked. Being responsible and take on time not to get “high” it doesn’t work that way. Sign contracts and have monthly urine tests. On the 41 st year anniversary of my spinal cord injury, pain management reduced my pain medications 3/05/18, again another reduction 4/18 and another reduction of pain medication 6/26/18. This is cruel and inhumane. Not allowing the body enough time to adjust to rapid cut Off is frighting and causing high amount of anxiety, panic attacks. My spinal cord can’t communicate to my brain and pain causes a life threatening condition called Autonomic Dysroflexia. Having Horner’s Syndrome Frankel Class C means my body sensation is Hyper Sensative – I feel every little thing, but unable to move. The chronic pain community voices must be heard. Wishing I didn’t have to take anything for pain but I need to so I can have some quality of life.
Nicolette; your story is so horrific it’s hard to know what to say…other than, I’m so sorry what happened to you, and i hope you’re able to get relief. Hope you’re able to write your story to the reporter.
Very best wishes & hopes.
Nicolette, this story of your life is heart wrenching. I’m so very sorry you’re dealing with that much pain. Kratom has given me my life back. I cry everyday reading more & more happy ending stories from the Kratom community. You are amazing and deserve a pain free life.
My heart aches for you, Nicolette. I was yanked off of high levels of opiates starting August 2017 — I was given a month to get off of them. What followed was a nightmare of epic proportions. I’m now on meds for high blood pressure, nausea, anxiety. These are meds I didn’t need before. I was mostly bedridden (I went out for doctor’s appointments and when my youngest child needed me only) for the next six months. I had no choice but to try medical marijuana, but that has come with a host of side effects–And it’s incredibly expensive. All of this hsppened even after I had drastically tapered myself down for two years before this. I am praying for you, Nicolette, and for all chronic-pain patients.
I have chronic pancreatitis and was was on oxycotin 80mg. With 30mg of oxycodone x3 for break through pain and was abruptly taken off of it by my pcp. I was asked to come in as the last patient of the day but refused and kept my standing appt. I guess they thought I was going to raise hell. I asked for prescriptions for enough to get tapered off and was barely given enough with no instructions on how to do it. Thankfully, my pharmacist helped me with a taper plan.
I had a horse accident in 06.13 surgeries later they cut my leg off.I have major back issues due to the horse rolling over my entire body.I am now going thru tests for m.s. The doctors took my pain medication away after 10yrs.and put me on mobic.Injections over and over.I am 50 yrs.old and did get thru the yrs.with the help of my pain meds,now I sleep in a recliner,basically I live in it.It’s jus wrong for the people who do need them to suffer like this.
I feel for you. So sorry you are going through so much pain & getting NO help. People that don’t live in bad pain everyday just don’t understand what life is like.
I am a 39 year old female I have been suffering with chronic pain for the last 20 years I was born with a heart defect when I was a baby when I was 5 years old I had to have open heart surgery there was a lot of things and that surgery that went wrong that cause me to have trouble later on in life I have 3 herniated disc in my lower back I have rheumatoid arthritis severely I have gout I have Graves disease my body hurts all over and I have been on my opiate painkillers for 20 years if they’re taken right they will work I think it’s very wrong what they’re doing with the opiates it’s not fair to chronic pain patients at all at the age of 34 major heart attack the reason for it is because my pain meds got tooken away the doctor was scared to prescribe because of the laws so I had to find a new doctor which was hard to do I’m a very sickly person who needs my opiate pain medication I have tried everything Physical Therapy over and over other kind of medications nothing has worked and it’s not true if you take opiates for a long time they stop working that is not true at all if you take them the way you’re supposed to you won’t have any trouble it is not fair to the chronic pain people who need the medication and you shouldn’t have to have a certain conditions to keep your medicine cuz not everyone pain is the same and the opiates should not be limited neither because there is other people in more pain than other people my opinion in the state of Martinsburg West Virginia the prescription painkillers are not the issue it is street drugs the heroine and the Fentanyl get the fentanyl off the street and you will see that everything will change but don’t take it out on chronic pain people it’s not right God forbid one of the top people who takes the medication away or limited has to have it or their family member has to have it and they can’t get it because of what they did how are they going to feel it is very sad that we are being punished for something we had nothing to do with it is not our fault that young kids get a hold of this medicine and want to party with it and not care I understand some people overdose on the medication because they don’t know what they’re doing what the prescription medication here in Martinsburg is not the issue it is the street drugs I’m out here everyday I know if they take away opiates off the street you will have a lot of suicides on your hand people cannot live in agonizing pain there should be other options for us chronic pain patients and what they’re giving to us
It is a total disgrace how this country and some others, are mistreating chronic pain sufferers.
I am a retired nurse and worked hospice for many years. Even dying patients were refused meds to help their horrific pain.
I suffer from Crohns disease for 43 yrs. I have horrible pain which has worsened over the years. I always was prescribed Percocet or Dilaudid when I was in an exacerbation. For over 30 years I’ve been on Percocet, with no increase in amount. It has offered me help to get through my pain, enough to work 12 hour shifts, care for my own family and graduate college. My pain gets so severe I am often hospitalized due to an intestinal obstruction. My daily pain is severe enough to need my meds which I take sparingly.
Then I had a leg amputation. That pain was unbelievable. My pain management told me they are only allowed a specific amount of my pain meds…never mind an individuals needs! I often go hours in pain so as to not run out early or I will just suffer. It is absurd to go through this. There are humans who have chronic pain and must have meds to survive. My dog gets pain meds due to a hip issue but I am being cut down and soon I’m afraid I won’t be able to get any meds at all.
It is true, that patients are using street drugs and suicide now that this so called epidemic has taken our lives hostage.
Pain management is individual and needs be between doctor and patient, not government . Yes there are those abusing drugs but a clear history of each patient will assure who is an addict and who is a chronic pain sufferer.
Ridiculous to be put in this position and I will not be treated as an abuser when I have a 43 year history of a terribly painful disease and now a leg amputation. Shame on any government that dictates to the medical field how to treat pain.
I live in NC now but CA was no better.
Broke my back in’86. Diabetic neuropathy for 25 years. Doc left untreated for at least 12 years. Going to take both legs. Pain is excruciating. My Doc arrested for writing pain meds. I’m in withdraws. Too sick to get out of bed, no exercise. Going to lose legs at age 66.. No docs will write what works for me. I’ve had 2 pain pumps, an implanted dorsal stimulator and 22 surgeries. Nothing worked. Arteries 95 to 100% blocked. Have gangrene again. Thank you Florida and Trump. Your witch hunt has finally killed me.
Well I guess you could say I was a sitting duck..i was stopped turning left..i was rear ended by someone doing over 50 mph..he never even saw me..(guess he was texting ) he had no license. Revoked..under the influence of alachol and drugs..with dollar a day insurance and wasn’t his truck..anyway I’ve had 2 failed spine surgeries..physical therapy multiple times had to be stopped. ( was making pain worse..ive had acupuncture..at least 20 spinal injections..none of them worked..now I’m highly allergic to steroids..not to mention weight gain and hair growing on my face..dr never told me of possible side effects..2 hours a night I have to pull hair out of my face..i have a tens machine..dont help..i c ant even feel the electrodes..my back is numb..trying to get the new inversion chair that stretches your spine..nerve studies that show my problems..they don’t even know how I can walk because I can’t feel my feet or left leg..rothman says every level of my back is gone..they can not do anything for me..you can call to verify..i saw Dr Chris Radcliff.my primary Dr sent me to pain management 2 years ago..my Dr looks at me like I’m stupid..now I’ve never failed a drug test.and he tries to reduce my meds..he knows I can NOT WALK AT ALL WITHOUT THEM..WITH THEM I CAN WALK FROM POINT A TO POINT B..TOTAL WALKING DISTANCE IS A HALF OF A BLOCK..AND THAT’S PUSHING IT..he knows I’m in CHRONIC SEVERE PAIN..and he knows I need them to walk at ALL..SERIOUSLY YOU WANT TO CUT MY MEDS..Well whatever..i thought a pain management Dr signed an OATH TO KEEP YOUR PATIENT AS COMFORTABLE AS POSSIBLE….i can tell you this..if and when they cut me anymore..i have no other choice but to take my life..bacause at 55 years old I should not be confined to a bed..i would only hope and pray that you can keep my Dr from cutting my meds..ive never felt any kind of high from them..although they do make me sleep 16 out of 24 hours..as I’m up all night long..screaming and punching the walls and crying because that’s how bad the muscle spasms are so so bad and they just keep coming..they are nocturnal so I try and sleep in the day..really I’d rather be dead..but I do have 2 grandchildren.that love me very much and they know exactly what I go through..and during all this..im now allergic to 100 different medicines and vitamins..so if I was your daughter how would you handle this..please.id like to hear the truth..
Its horrible being a chronic pain patient. We live in fear 24/7 knowing our medications can be taken away from us by the DEA. When the DEA investigates a Pain Clinic and the patients aren’t aware of any wrong doings but the Pain Clinic gets shut down then the hundreds of patients are left alone, scared, and some turn to the streets or even worse, commit suicide.
If the DEA cares so much then they should have a Dr (of there choosing) to at least write prescriptions for a month.
When this happens, patients sometimes have to turn to Suboxon, Subutex, etc. However, they now will be marked as a “Drug Addict”.
Sorry, but I don’t see where this even makes sense.
Leaving human beings to suffer horrible withdrawals. This should be called” INHUMANE TREATMENT”.
I have had chronic pain since a fall that had happened on August 7th, 2015. That night I had broken my left elbow and fractured my lower left back in two places. Since than I’ve suffered from pain. Well, my elbow healed itself after almost five months after the accident but my lower back never healed. I’ve had physical therapy that only made me feel worse afterwards for month’s, til the point I refused to go. Than the doctors, which were several of them btw had suggested injections. I had a yrs worth of injectiins which only worked for a day or up to three weeks only. Than finally after more then two yrs of pain with failed PT and over a yrs worth of Injections I finally got an ifuse on my S1joint. Its been now just three months but I still suffer from pain. My surgeon suggested another operation along with 2nd opinions and referred me to a pain management doctor. Well the pain managent doctor ordered an EMG test, thats taken two months to get which I’m still waiting for btw, took away my Tremadole, which helped me at least function and prescribed me Lyrica and sent me home. I’m devastated because the Lyrica is a joke, helps nithing at all, when i called the office to tell them , they flat out told me that i will never take any opioids for the rest of my left and basically just heard what i had to say than just said they are sorry, I am now living in pain and feel so lost and barely do anything because everything I do is painful! I have four girl’s and two grandbabies. My 17 yr old graduated from high school and I couldn’t even go to her ceremony. Tomorrow she has orientation at her new college for this weekend and I can’t go to that either because I can’t walk much. I’m devastated and don’t know what to do. I just wish someone could help because I dont see a future and I just turned 50 yrs old just last week. All I do is cry and pray. I want everyone to know that I’m not a drug addict, im a human being, a person who was injured three yrs ago and I live in constant pain, from sun up to sun down.
We have to unify. We have to say “Enough is Enough!” There are FAR too many of us that are responsible with our medications. Just because we take prescribed opioids does not mean we will become or are addicts. We need them to control our pain and have a reasonable quality of life is all. Nothing more nothing less. There has to be something we can do. Write letters to our respective state governments. To our Congressmen. I don’t know. I’m just throwing ideas out here. I know there are rallys but many of us are not able to attend. But having a reasonable quality of life is, to me, an inalienable right and by however means to achieve it should be at our disposal. The government has no place in our healthcare. In our relationship with our doctor and how our doctor decides to care for us. If we sit idly by there will be more suicides and reading the despair in some people’s story breaks my heart. Suicide is not an option. Please be strong and hold on. We want things to change and hopefully we can bring about change. I hurt too. And I love you want you to know you are not alone….
We need to organize and stop these new bills on oipiods from becoming LAW! You are right many of us can not make the rally! We can do what you suggested Joy write law makers and call call call. Right now we all need to stop the 28 new bills! Please everyone read the bills and call your law makers and protest them!
and send your stories to the fda hearing –deadline july 5th to;
jheath.dpp@gmail.com
…please, we only have 30 or fewer!! We’ll never get listened to if we don’t speak!
There’s a rally being organized in major cities all over the US on or around Sept 18th organized by the “Don’t Punish Pain” group. They have Facebook page and individual groups for each state. There are also lots of pain activist groups now but they dont seem to be making much public headway that makes it out into the media. US Pain Foundation, CPATF, PAINS project, Patient Advocate Foundation, the list goes on…Mass letters to government officials is a great thing too.
Everyone needs to send their stories to the fda hearing –deadline july 5th to;
jheath.dpp@gmail.com
…please, we only have 30 or fewer!! We’ll never get listened to if we don’t speak!
I am a chronic pain patient as well. I had a lower back surgery on my L5/S1 area in 2013. It did not help and the situation has gotten worse over the years. I have DDD, Modic Type 1 changes on the endplates of my vertebrae there which in an of itself causes pain, Sciatica and my right leg is gradually is going numb. There is no disc left there and I tell you I can feel the bone on bone pain and pressure there when I stand too long, is that in my head? The doctor at my pain management office said there’s no such thing as bone pain. But I wonder why it hurts when you break a bone or have arthritis…like I said maybe it’s just in my head and he’s right…The L3/L4 are messing up now and there are other things wrong that I can’t think of the names (sorry) Needless to say I hurt around the clock. It’s always there and some days I hurt so bad I would love to go to the ER but I REFUSE!!!! They automatically treat you like you’re a drug seeker and it’s maddening and humiliating. So Iay in bed. I have many of those days. Weather and too much activity will put me in bed and too much activity will aggravate the sciatica and make me want to jump out of my skin. I literally claw at myself and rock back and forth dealing with pain amd Sciatica. I take 10mgs Oxycodone 2xdaily and 150mgs Nucynta 3xdaily…it keeps me on this earth but the pain is never abated. I’m 40 now amd have had constant pain for 12 yrs. O don’t know what it is like to not feel pain anymore. Reading these horrendous stories of crackdowns and pharmacies and insurances not filling people’s Rx I live in near constant fear and have mild anxiety attacks when I go to Pain Management that it will happen to me. Opioid are my only choice. I also I have Bipolar Disorder and will not risk my mental health stability getting cortisone shots and I have reaearched spinal cord stimulators. I don’t think they are for me and I am uncomfortable with having a device implanted in my skin. Also, isn’t it my choice how I choose to manage my pain? I do well on opioid. I have never experienced the euphoric high that alot of people experience. I don’t crave them or feel the urge to take them unnecessarily. I don’t know why I’m different. But I’m thankful because I dont want to deal with withdrawals. Anyway that’s my Chronic Pain Story. I would like to find groups that are pushing back. Government does not need to be in a doctor/patient relationship and a doctor should be able to treat a patient how they deem necessary. This has gotten way seriously out of control super fast. Thank you for giving up a voice.
I am CEO (Stratigic Planning) for Dr Patty’s Chronic Intractable Pain And You Sites, Inc. The site is under maintenance and is scheduled to open in a few weeks. We advocate for people with Chronic Disabilities. I’m shocked by the stories I’ve read but not shocked at the stupidity of our Administrations misguided attempts to control illegal drugs. An epidemic they helped to create by not stemming the flow of illegal drugs from Mexico, China and other Central American Countries. Afghanistan is a joke. Where do you think all the Heroin they produce ends up? Pure Lunacy. And they tie this all to the “Opioid Epidemic” What BS. You can blame this on BIG PHARMA, CROOKED POLITICIANS (who get big kickbacks from Big Pharma) and a host of other agencies (CDC, FDA, FBI, committed to “enforcing” drug policies. Why does the FDA stand up for the right of adults to smoke tobacco, which is highly addictive and causes over 400,000 deaths per year, while decreeing that adults have no right to smoke marijuana, which is non-addictive and kills no one? Alcohol costs thousands of lives, and alcoholism is an accredited disease, but anyone age 21 or older can go to the liquor store and buy alcohol. Drug use is an acknowledged fact of life in every prison in the country. If we can’t stop prisoner use of drugs, how can we rationally expect to stop average free citizens from using them? Despite signatures from 85 prominent groups and individuals, why has the Hoover Resolution (a call for an independent panel to review existing drug policies) not been considered, accepted, or initiated? ? At a time when working people are being asked to tighten our belts in order to help balance the budget, how do you justify increasing the funding to the drug law enforcement bureaucracy? Explain why supporting a failed policy of drug law enforcement has a greater priority than student loans or drug education programs. There are so many questions, with so few answers. Sorry for venting, it’s all I can do at this point in time but I’m working on making it better. I have written so many letters to our elected officials that they are really tired of me. But the fight goes on. Oorah!
To correct a mis-statement of facts in your comments… a couple of years ago ALCOHOL is reported as being associated with >100,000 deaths/yr – for the first time.
You might also consider the fact that abt 40% of Congress is ATTORNEYS… part of the same judicial system that in 1917 declared that opiate addiction was a CRIME and not a DISEASE and any prescriber caught treating/maintaining a addict would be jailed.
Since the Controlled Substance Act was signed into law we have spent > ONE TRILLION on the war on drugs and the initial budget of 43 million/yr is now estimated to be 81 BILLION/yr and employs some 500,000 to ONE MILLION people and that 81 billion is spread from the cop on the street, judges/court system at all levels, prosecutor/defense attorney all the way up to the state AG and various federal agencies including the DOJ and don’t forget our private prison system. With the help of Congress, the war on drugs has become its own self-perpetuating industrial complex. Even though our current and previous Surgeon General have stated that all addictions are a mental health issue and not a moral failing… our judicial system continues to apply the only “treatment” that they have in their “tool box” to treat the mental health issues of addiction – JAIL/PRISON. and if you wonder how the media gets all their information about what the DEA is doing in this war on drugs… just look at this website https://www.dea.gov/pr/news.shtml where the 24 odd district offices and HQ of the DEA regularly pushes out PRESS RELEASES about how bad the opiate crisis is and how after nearly 50 years of fighting this war.. they are still failing . The only other “social war” that we have fought longer and spent more money on is the WAR ON POVERTY. Abt 5 yrs longer and about 15-20 TIMES the money 🙁
Please stop the hysteria. We are informed. The “public” falls easily for untruthful propaganda.
We all need your voice. Even you, Media. We do not need to fall back to prehistoric medicinal half practices.
Ironically, ” opiod” have been safely arministeadm for hundreds of years.
Blame the idiots who use and abuse this recreationally.
Keta mine, kratom, chemical cocktails, do not work. We know this. We also know the war on this hysteria called opiods, is nothing but a transfer because government is now picking up the bill for something that actually works for people who don’t abuse them.
True chronic pain patient do not abuse their medication.b
Think. Think when you vote. Think about how Dr and phsrmaph are being as abused as us.
This is a racket .
Why would you lump Kratom in with “chemical cocktails” & K ?
Kratom is a natural herb that millions of people use to combat pain, anxiety, depression, PTSD & more. Check your facts. KRATOM SAVES LIVES.
Since the 80s… Americans have forfeit Ed, thier rights to health care. You have to seriously stop being so gullible!
This is what you get when suits who can barely pass chemistry, obtain your agreement to usurp medical, scientist, and other professionals.
Stop being so ignorant, take back independent status. Trump did not start this. It’s been in the works. Especially when this inebristin country wants to use pot for everything.
Stop.
What is happening to the American intellect?!
Research.
This is nothing but a witch Hunt for the trade to push weed.
Time to sue!!!!!!!pain management has become RACKETEERING and Extortion headqiarters! Inject this for your medication….what? NO?..no help for you!
I’ve been treated like a drug seeker so many times. 1st I remember I was 31 and the ER did a Spinal Tap on me. No instructions on what to expect. Well I went to work the following day and almost passed out after 15 minutes of sitting. The pain blinded me. Somehow I made it to my parents and they took me to the same hospital. I didn’t even think to ask for pain meds. I was their because I felt something had gone really wrong. My back felt broken in half and my hips felt like they weren’t connected to my body. The doctor refused to even examine me. He just looked at me and said “young lady I can’t be apart of your addiction. ” Huh? I’d never had a script for pills besides one 5 years prior for Xanax 1 months supply that I still had most of. 6 weeks later the pain was still a 10 and my family physician wrote me a script for Norco 10,s. I remember that 1st pill. It took all my pain away and I slept that night pain free. Fast forward to 2013 I was 36 and still having a lot of lower back pain .I controlled it with weed and cat stretches . Well I slipped on a stick someone who walked out a resteraunt door before me had dropped. Broke my ankle clean thru in 3 places and tore all my tendons and soft tissue. Pain was the worst I’ve ever felt. A 20. Husband thought I was faking. I couldn’t stand up. 5pm. 12pm the next day he grudgingly takes me to urgent care. Rolling his eyes at the intake nurse telling them I’m a drama queen. Sat there 4 hours. I’m shaking uncontrollably and have been sitting in a wheel chair and the look on my husband’s face when I refused to stand up and walk. I couldn’t . Dr comes in and yes I ASK for something for the pain. It’s been 24 hours by this time. He hands me a Motrin. Now if a Dr tells you a Motrin will help their lying or naive. The only person who was nice to me was the x ray tech. She said I should have 10cc’s of Morphine intravenously. Wheel me back in and a nursing student giggles and says now we know why your in so much pain. My break was so obvious a student could read the results. Dr waltzes in and says he’s sending me to surgery. Finally I demand pain meds and they shot me up with something. However I had a reaction to the meds and lost my ability to swallow. The car ride to the orthopedic surgeon was 45 min away. So I beg my husband to turn around cause not being able to swallow makes you feel like your choking to death. Once again eyerolling and drama queen accusations so no one cares that I’m choking. A nurse tosses some water my way and whew I can breathe as long as I take a sip 1st. The surgeon was wonderful and very generous with the pain meds. Dilauded 8 mgs 7 times a day. The pharmacy was another story. Most don’t have them on stock. They need to order them and it can take a week. Well fast forward 2018. I need double knee surgery from torn meniscus which I suspect was from the crutches . My husband had a cruise planned 5 weeks after my break. The Dr refused to write a medical release for me so we went and I hobbled on crutches all over the boat and Caribbean beaches for 10 days . No wheelchair though when my brother broke his ankle we wheelchaired him in public. It’s hard on both knees using crutches extended periods. 6 month recovery and 4 months physical therapy to get rid of my limp. I also have akrolysing spondlieosis, rheumatoid arthritis, bakers cysts in the back of my knees and the tears still. I also suffer from vomit indusing headaches that feel as though I’ve been hit in the back of my skull with a hammer and fibromyalgia. From 2013 to 2014 I was on the dilauded. I was than switched down to 3 Norco 10s a day until my Dr referred me to pain management . It has been a God send. I take 1 Morphine 60 mg ER twice a day. Every 12 hours. Plus 5 Dilauded 4 mgs IR 2 muscle relaxers , Ambien and .5 mg Xanax as needed. I live in California where pot is legal and my doctor encourages it and doesn’t cut you off if you test positive for marijuana as I know happens in other states. To be honest I’ve been a daily smoker of weed for 32 years. It’s not that great of a pain reliever. I know cause it’s never helped my physical pain. It’s relaxing if it’s indica and energizing if it’s sativa and does make me fabulous. Like the sky is bluer and food tastes better. It uplifts the spirits. My pain management specialist also works closely with a pharmacy that specializes in carrying the opiates that the large chains don’t. They also don’t look at you like you’re a druggie and in my case I look young and healthy so I was always apologizing and trying to explain to pharmacists why I was on such heavy meds. They always pulled me aside to tell me I’m too young to be on so many and such high doses. The truth is that they don’t get me high. At all. After the 1st week your body adjusts to them. But they allow me to walk without a cane. Work. I’d be on disability and bed bound without them. The morphine takes away my insane back pain which starts in my neck, increases tenfold in between my shoulders after 30 minutes of standing , becomes a hot poker in my lower back than moves to my hips all they at down my legs. Pain management gave me my life back. I’m 42. I don’t want to sit on the sidelines and opiates are the only thing that really helps with my pain. I feel this is a witch hunt. Yes I’m dependent. But addiction and dependence are not the same thing . Everyone is dependent on water food and sleep to survive. We are putting Dr’s in jail for helping people. Their patients either go thru brutal withdrawals which can be deadly. Myth you can’t die from opiate withdrawal. Or they buy on the streets and risk dying or they kill themselves. The year we cut down on prescription opiates is the same year that heroin use spiked. Just like prohibition turned the Mafia into true organizations and wealthy we have done the same with the cartels. I live in fear of my Dr cutting me off. Or moving .But at least for now I can live and work . It’s a big stigma though. My husband doesn’t want me taking them. He doesn’t feel I need them. He thinks I use them to get high and has told his family, mine and all our friends that I’m a drug addict. That makes me sad to know that people don’t understand the nature of living in chronic pain and being accused of drug seeking behaviours. Suicides and heroin use or just deaths from people who aren’t able to get out of bed will be the result of the war on pain patients. Lastly Dr Nowzardian from my 600lb life took his male patient off Dilauded . Withdrawal puts a huge strain on the heart and body. Well the guy was in major pain. So much so he wasn’t able to get up where as before on the pain meds he was active and doing good at losing weight and walking and doing his PT. He begged for meds. Dr Nowzardian refused . Well he got worse and finally died. I wholeheartedly believe that had the Dr given him pain meds he’d still be alive and active. PT is painful . I’m 113pds and couldn’t have done it without pain meds. So I guess in Dr Nowzardians mind it was better to let him die in pain and misery rather than offer the humane route and give the man a chance. A lot of people will die this way but people will say at least they didn’t die an addict. Smh most likely they lost the will to live because they were in pain. We treat dogs pain aggressively . Dogs with arthritis or cancer can get as many pain pills as they want. Can’t let a dog suffer. But a human with arthritis. Take a Motrin. Let’s take care of our pain patients cause someday it may be you or your child, spouse, or parent
Hi, I have been in terrible pain due to lumbar spondylosis and degenerative disc disease for the past 12.5 years. I have been under the care of a doctor whom has given me morphine sulfate ER and oxycodone to help reduce the pain. Unbeknownst to me on a Friday I was told that my insurance would no longer cover my meds. I asked if I could pay cash but they wouldn’t let me. After being in pain management for so long, I was suddenly told I would not be able to get my normal meds that were prescribed to me all these years Needless to say, I had to endure ” cold turkey” withdrawal. I was so sick and in so much pain, chills and just feeling terrible. I know I should have went to the hospital. I wish these ” idiots” who decide we no longer need our pain pills would have to endure the chronic pain ( and withdrawal) for just one day!
insurance company’s denials are in PENCIL.. they have an appeal process… don’t have to tell you about it unless you ask..then they have to give it to you in writing – probably a web page – One of the basics of the practice of medicine is the starting, changing,stopping a pt’s therapy… find out who their medical direct is and threaten to file complaints against him/her for practicing medicine in state that he/she is not licensed in and without doing a in person physical exam – which is also a violation of the Controlled Substance Act – enforced by the DEA… The DEA considers a pt paying cash for a controlled substance that has insurance a RED FLAG… so that is why they would fill it. IF you have Medicare/Medicaid file a complaint with http://www.cms.gov or 800-MEDICARE.. other insurance companies have to be handled differently… just appeal and complain on any and all avenues available to you… Some consider throwing a pt into cold turkey withdrawal a form of TORTURE … definitely pt/senior abuse and possible medical battery… as since it suggest that they are doing this to all chronic pain pts.. who are considered a protect class under Americans with Disability Act and Civil Rights act… which is consider a civil rights violation/discrimination
Great info, Pharmaciststeve, thank you. I’ve been wondering why the heck the aclu or somebody is not taking this up as a civil rights violation; I’ve written/called them several times & gotten nowhere (but they did take up the cause of a jail inmate who was denied his heroin addiction substitute…further proof that heroin addicts are treated better than CPPs).
Maybe you can answer a question I’ve been asking all over for months; why is it not malpractice to deliberately throw a patient into a dangerous (possibly life-threatening) condition –i.e. withdrawal? CPPs are being forced into going cold turkey all over the place, with often dire consequences. Why is deliberately torturing a patient acceptable? other than the completely sadistic, anti-compassion or care climate of the times.
I have often asked the same question along with why isn’t it… pt/senior abuse, pt abandonment, medical battery. I have also asked the questions that why isn’t it consider a med-error/mis-fill when a pt walks away from the pharmacy counter without the medication that their prescriber had intended.. if a pt gets a mis-fill – wrong medication.. it is considered violating the pharmacy practice act but when the pharmacist refuses to fill what is otherwise a legit/on time/medically necessary medication.. the pt walks away from the pharmacy WITHOUT the medication that their prescriber intended for them to have… and no one seem to care… in the Controlled Substance act there is a phrase of a pharmacist’s corresponding responsibility that the prescription is for a valid medical need by the pt… The DEA only has the authority when a dose gets into the WRONG HAND…but NO ONE – including the Board of Pharmacy seems have an interest when a dose DOESN’T GET INTO THE RIGHT HAND.. It would seem that everyone believes that it is better to deny a legit pt their medication than take the risk that a dose may get into the wrong hand. And I have not heard of any board of pharmacy questioning the DEA interpretation of the pharmacist’s responsibility.. Pharmacists are expected to make a “second diagnostic conclusion ” without doing a in person physical exam nor having the pt’s medical records… and NO ONE seems to questions that pharmacists do not have the legal authority to do a in person physical exam and typically doesn’t have access to the pt’s full medical records.. and yet the DEA expects them to agree or disagree with the pt’s prescriber who has the legal authority to do a in person exam and has the pt’s medical records. Pharmacist are suppose to keep prescribers from practicing outside of their “scope of practice” – like a Dentist prescribing BIRTH CONTROL pills… but pharmacists functioning outside of the scope of practice of the state’s Pharmacy practice act … the entity (Board of Pharmacy) that is in charge of such violations.. seems to turn a blind eye and deft ear to what is going on.. BECAUSE IT IS BEING MANDATED BY THE DEA ?
Hm, that last question could contain the answer.
I have had a pharmacist refuse to fill my pain meds, & really, really hate the helpless feeling…especially on the occasion one decided to do it loudly & abusively in front of other customers & pharmacy staff. Fun times.
On the malpractice/violation of civil rights thing, I’m fairly sure that if a doc decided to give a diabetic 100 times the amount of insulin the person was supposed to get & the patient ended up in a coma, a yoooooge malpractice suit would quickly follow. But if the same doc cut off a pain patient’s pain med dose & the person ended up in a coma, the doc would probably be congratulated for “trying to help the addict, too bad about the unfortunate result. Oh well.”
I’ve never before felt like society actively wanted to kill me. Indifference, sure; active malevolence, no. More fun times.
*sigh*
Thanks for the response!
Cannot encourage anyone enough to try KRATOM to wean yourself off of any opiate. Friends wife who is a geneticist told me about it. Ordered 100 capsules off of Internet (KRATOMUSA.COM) used the Enhanced Malay capsules and was completely off of Dr Rx’d vicodin after EIGHT years of usage for bad back surgery/pain. ONLY took a week to get off opiates with NO side effects nor ANY withdrawals. Still am shocked it worked so well after trying to wean down the old fashion way which was very difficult. It is NOT FDA approved for anything thus you will not see much info on it. Look at Wikipedia for good info on this natural herb. The entire nation should know about this but thanks to Big Pharma does not. It treats pain, anxiety, depression and opiate withdrawals. Bottle was only $50 and worked in one week! Good luck and hope this info helps someone as well as it did me………..
Yes!
But the feds are going after Kratom. People who suffer from chronic pain are circus freaks for reporters to exploit. The opiate crisis is bull and we all know it. People are angry when they hurt. I think the agenda is to fill the prisons. Thank you for writing about Kratom. It is a life saver.
I have ordered Kratom from a top rated company but I can not use it as it affects my liver and kidney badly. Sadly Kratom is not an answer for everyone
kratom evidently does help some people, but is not the miracle substance many try to portray it as. Not to mention the huge recall for salmonella contamination. It is extremely expensive as well; I couldn’t afford to use it even if it was the miracle many claim it to be.
Medically retired from state after an accident. Left in chronic pain. Then got cancer. After cancer surgery, developed new onset syncope. Fell down stairs, injured ribs, back, and knees.
Went to ER at St Anne’s Hospital, Columbus, Ohio.
Was told by doctor that I was having pain because I didn’t have my opiate fix. He refused to treat me except to offer me a social worker for a drug problem I never had…
Went to a pain doctor to try and figure out why my pain was so chronic and horrible…he threatened me with involuntary psychiatric comittment.
Pain got so bad attempted suicide afterwards.
PCP will ask about pain but, if you acknowledge you are in pain the visit quickly ends.
I know, right? I’ve been Baker Acted twice here in Florida because I just said, “I can’t take the pain any more.” I also am NOT a fucking drug addict. I’ve tried for over 5 yrs to control my pain naturally: exercise, How Not to Die diet, lost well over 120 lbs, Mayo Clinic PRC, and I NEVER lay in bed, even on difficult days. Now I’m tired of fighting and had hopes to take low dose Tramadol for awhile until I get a second wind. BTW: DO NOT let them give you Lyrica!
I was Baker Acted as well because my pain managment doctor dropped me and my medications because my Neurosurgeon gave me Valium that I had stopped taking two weeks prior and I told him! I was in so much pain I forgot to write it on my pain contract that day, but I did tell him! Even my Neurosurgeon went over to talk with him about what happened. Zero tolerance! I was so upset and in so much pain I too said I couldn’t take it anymore. I keep my medical records with me at all times and when the ambulance came, the police came as well and told them I could not get pain medication and I was to be admitted to a different hospital from my Neurosurgeon and Neurologist! All my medication counts were spot on and the nurse felt so bad for me she gave me a small dose til I could be evaluated!
They apologized and released me, but not til I was there for three days in severe pain. Even the ambulance people said I was not a risk. I had to sleep in a room with a crazy person and did not have access to anything! I feel for you and understand.
It took me two months to find a new doctor! Luckily, my PCP filled a script for me. I have Klippel Feil, Syringomyelia, Spina Bifida Occulta and Scholiosis…degenerative disk disease, and the bones in my neck are pressing on my spinal cord and esophagus.
Does it count if you’ve been denied non-pain meds because you were a FORMER pain patient? For the moment, I am able to get pain meds, but a while ago I moved & could not find a pain doc so was taking zero pain meds, but none of the docs in my new town would accept me as a patient even to prescribe my synthroid –not in any universe a street drug, non-abusable, non-scheduled thyroid replacement hormone. They literally would not let me schedule an appointment b/c I HAD BEEN a pain patient.
If I’d been a diabetic I could have died…I could have died without the thyroid, but it would’ve taken longer. I had to drive a near 4-hour round trip to go to monthly free clinics in the nearest large-ish town to get the Rx for the synthroid. It was utterly insane.
I‘ve had 5 back surgeries including fusion,bone transplant. All failed. I have been prescribed opioids for the last 10 yrs.It gave me some quality of life. Now pain management is „weaning „me off. My pain is not being controlled anymore.
I have a spinal injury. My Pain Management Doctor told me she can’t helps anymore..we have done all the Steroid Injections, Physical Therapy, etc…and nothing worked. I’ve been 100% Compliant for 3 years, and she literally just told me she is not willing to continue writing prescriptions for opiates. Cold Turkey. No warning.
It’s been HELL. I can’t work because of the pain..
I can’t do much of anything. I do try to stay active.. But with chronic pain it’s almost impossible. I have no quality of life due to the pain. Its ridiculous. Pain Management is all there for you as long as they are making money off procedures. This is unfair and I wonder how many suicides it’s going to take to make the Doctors WAKE UP? There is a different between addiction & dependence for quality of life.
I work in the medical field and I get it- Doctors are afraid of losing their license. But what happened to the Hippocratic Oath??
I am getting some relief through natural supplements. I knew to wean myself off the pills, even when they abruptly cut me off… I never took them “on the hour”. I survived it. But it’s naive to think everyone can get through it and not lose hope
Kelly; so sorry for your suffering. I hope they see the light here soon, as they did in British Columbia.
I see you used the phrase “on the hour.” I had an appointment with a new doc a while back (my old doc retired), & he kept asking me if I “took them “on the hour.” I kept hearing it as an accusation of “you’re taking them more frequently than prescribed, right??” since I’ve been treated like a criminal junkie for decades as a CPP. I didn’t realize what he was asking until after I left the office, that that was a sort of code (I’m always behind the times). This whole thing is such a mess that there are minefields everywhere.
I’ve been on pain meds for over 20 years and was doing well. I never thought that I would have a problem filling my pain meds. I went for a doctor’s visit in December 2017 called to see why I hadn’t received my pain meds in January and the pharmacy told me they could no longer send my meds to me. Then I found out that California no longer ships meds out of state or that’s what they told me. Change in law. Also my pharmacy had been raided by the DEA. I see a doctor in California and I live in Georgia. It’s impossible to find a doctor in my area at this time. I’ve been off of pain medication since January and have lost 32 lb. I have in end stage idiopathic peripheral neuropathy trauma-induced, cervical radiculopathy spinal stenosis, nerve root entrapment, spondylosis degenerative disc, fibromyalgia, osteoporosis, central pain, chronic migraines. Since I can no longer get my pain medications I’m completely bed bound. I tried every way I knew to get prescriptions filled and nothing worked the local pharmacies would not fill them in Georgia, I could not find an online pharmacy that would fill. And it’s really a shame to waste away when you were once a productive member of society when taking pain medications. I can’t afford to lose much more weight I’ll certainly die from malnutrition or heart failure but I refuse to give up. I still have hope that something will change. I can tell you the pain feels like the worst burn that you can imagine it feels like you’ve been scalded with boiling water and that’s just the beginning they’re stinging and burning and spasms where your legs don’t stop jumping and days without sleep. All you can do is try to refocus and remember better days and hope that things get better.
Beth;
so very sorry you’re suffering so badly. i hope you’re able to get your awful story in & get heard.
is there any way to apply for palliative care where you are? you’ve probably tried everything; I just am learning about pc, hoped it might be a way for you to get relief. Sorry if I suggested something you’ve tried already.
Very best wishes & hope;
kelly