Why Are We Abandoning Those Living in Chronic Pain During the Opiate Crisis?

Why Are We Abandoning Those Living in Chronic Pain During the Opiate Crisis?

By Ellen Lenox Smith.

As the country seeks solutions to address the opiate crisis, those living in extreme chronic pain appear to be ignored. Many of these patients have utilized opiate-based medications for years without experiencing the negative impact of addiction. For many, opiates are the only effective treatment for their pain. For many, there is no alternatives left for them, since other medications have not been as successful for them. I understand that there are side effects to these medications, but what about those who have relied successfully on these medications to manage their pain and thus experience a higher quality of life not dominated by relentless nauseating pain? If this could give you a chance for a better life living with chronic pain, wouldn’t you have consider using them too? Many of us would love to never have the need for any medications, but sometimes we have to do what is necessary to sustain any quality of life.

I have recently had a good friend be informed by her pain doctor that she is the last of his two patients to whom he is left prescribing opiate-based pain medication. But unfortunately, in one month, he will no longer prescribe the medication that has helped her. This individual has been utilizing these medications for years.

She had not become a drug addict. She is a pain patient receiving sound and effective medical treatment. She has been closely monitored by her doctor. But now, she is being told that he will no longer be able to prescribe her medication due to the pressure on doctors concerning prescribing them. He told her he would instead, put her back on medication that was never compatible to her body. This medication made her feel sick thus violating the most fundamental and universal principle “To Do No Harm.”

This frightening news caused this vulnerable, compassionate woman to return home feeling frightened and scared to death as to how she would be able to cope living with CRPS, EDS, RA, Gastroparesis, Chiari & more without her effective medication regimen. Since 2003, she has been successfully maintaining her pain levels using 8mg Dilaudid & Fentanyl patches. In one month, they will no longer be prescribed and she will be facing serious sustained levels of pain, loss of quality of life and the feeling of being abandoned. Does anyone even take the time to understand not only the physical impact but the emotional impact the lack of effective pain management has on all pain patients, but particularly those suffering chronic conditions? The lack of effective pain control will most often trigger a whole host of other medical and psychological issues as it did with my friend.

The following morning after receiving this news, she ended up having a mini stroke brought on by this stress. And she is just one example of the trauma that is being brought on by announcing to one living in chronic pain that their medication will no longer be prescribed. Fortunately, she survived this stroke but stories such as this do not always have a happy ending. Many chronic pain patients deprived of the tools to manage their pain have felt so desperate. The end up feeling lost and alienated from society and the medical profession, in particular with the knowledge that such a cruel, inhumane and unnecessary action can return them to the hell from which these effective medications had delivered.  Sadly, many are making the choice to end the misery imposed upon them by committing suicide. To those unable to secure medical treatment to manage endless days of anguish and pain, suicide is for many, a rational alternative to a permanent condition. Is this really how we want to treat these people living with chronic pain?

When you live in chronic pain, your choices are not always what you would hope for, your particular condition may dictate that you are forced to deal with your issues and consider choosing life over medications that others may find controversial and not considered the better choice. I personally have to live on antibiotics for life to help ward off the effects of sarcoidosis. I know that is not a great thing to put into your body daily, but without that small dose, my body rapidly declines into a state of pure exhaustion and listlessness with no hope of any quality of life. So, what would you do, take the antibiotics that work or become bedridden? The same is for those of us that have had to turn to cannabis and ketamine, both controversial mediations to many in society. But those happen to be all my body can metabolize.  For me, these relatively controversial medications have proven empowering. These drugs have allowed me to take control of my life to the extent possible. I can think, feel and be active on my better days with Ehlers-Danlos Syndrome. To this day, many in the medical profession and in society at large would, if it were in their power, not allow these two medications to be used and I would either be dead or permanently confined to a wheelchair. I had to fight for the right to obtain access to these medications which for me, proved to be both life giving and life enhancing. If I got caught up on others attitude about these two medications, again, I would perhaps not be alive at this point. These two medications have allowed me a chance to live. And for those using opiates successfully to treat their medical issues, do they not deserve the opportunity to live a better quality of life, too? Just because others in society have had a negative result from using them does not mean all should be eliminated from their use, especially those that have successfully been using them to live their life not being a slave to their pain but effectively managing their pain.

According to an NBC article written by Maggie Fox, July 10, 2018 entitled Pain Patients beg FDA for more options, easier access to opioids, people with chronic conditions cope with prescription restrictions and limited alternative therapies amid the nation’s opioid crackdown, the CDC and FDA is not regulating physicians. Instead, it is the states doing this. She reports that twenty-eight states have some limits on opioid prescriptions and seventeen limit prescriptions to three to fourteen days. This is according the National Conference of State Legislatures.

One suggestion I do have for those that are also being taken off their opiates is If you, too, have an issue with metabolizing medications and are at a loss as to what to turn to, consider having a DNA Drug Sensitivity test done. With a simple swap of your mouth sent back to their lab, you will receive a list of what else your body is able to tolerate. For the rest of your life, you will be able to use your DNA results and be sure a new medication is safe and is compatible to your body chemistry. In this way, you don’t have to worry as to whether you are going to react and not have positive results.

For those who are watching family and friends suffering due to the reduction and/or loss of their opiates, take time to call or write your state legislatures and your Senators and Congressman. Keep this other side of the story alive and share the horror this is doing to these people you care about. Also, consider writing letters to the editor of your local papers. Keep educating others out there who feel this is only about addiction issues to be resolved and help to share the stories of those living in chronic pain who are now left to feel alone and with little to no hope for their future. They may not be able to speak out, so try to be their voice!

May Life Be Kind to You!

Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

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Janice J conklin

I have their On Pain medication for 15 years and now they’re cutting me back

H flock

Open borders have created the opiode epidemic. Cartels know that the U.S. government are blaming it on our health system and knew in 2013 that government put a halt to prescribing so they flooded American streets with heroin and still do knowing most of our news media show not so smart people protesting closing the borders. The not so smart people and news media are making easy for the heroin epidemic. Close the borders and it might stop. Hurting sick and elderly is not stopping the epidemic.

Andrea SpissingerAndreas6rikQ

Ellen,
I cant thank you enough for your article on chronic pain patients and opioids. I too, suffer from chronic pain with a whole host of disorders and diseases too numerous to mention here. I have been seeing the same pain dr for about 10 years, have never deviated from my doze, taken more than prescribed, nor tried to refill early. Now my doc is telling me I have to start cutting down because of new laws. My pharmacy treats me like a drug seeking addict and have been put on some sort ofblacklist. I believe there needs to be a concerted effort among those of us who have always handled our meds responsibly. To come up with a plan or exemptions for us. I am a senior citizen and am not about to inject oxycodone! Those who’ve abused it have ruined it for the rest of us. I’m trying to find an attorney who would be willing to take on a class action suit against pharmacies using negligent and discriminatory tactics.
Let’s stay in touch and help support each other.
Sister in pain
Andrea.

Louis Ogden

I hate to have to say this but I believe it is a way to get us older people (and some young ones too) out of the way. We are expensive; and unfortunately, expendable. I hope I’m wrong!

Ellen Lenox Smith

For anyone that wants suggestions on how to help advocate and get your voice heard:

1. Pick up the phone and call your federal reps/senators
2. Write the FDA in their open docket. We need to FLOOD: https://www.regulations.gov/docket?D=FDA-2018-N-1621

3. Write to the HHS Pain Management Task Force: paintaskforce@hhs.gov

Missy

As a chronic patient myself I’m continually baffled by statements made by others, regardless of the story, about how the GOP (republicans) are causing our suffering!! Folks this was put in the works in 2009 under Obama when they were trying to figure out how to get out of paying for all the pain meds prescribed to millions of people!! Remember Obamacare?? Government healthcare paid for by the government/taxpayer. In 2010 the opiate crackdown began in full force. When government controls healthcare, rationing begins! They say it’s free but actually they start taking meds away, denying services, etc.. This is why healthcare should remain in the free market, where decisions are still made between you and your doctor, not you and the government! Republicans are at fault for not repealing Obamacare on day one!! So for now the rules of Obamacare are still enforced! Until this changes, government still controls us AND our doctors!!!

Ellen Lenox Smith

John Skeba – How can we be of help? Are you in a legal medical cannabis state? For if so, I could help guide you as to how I take it in an oil form at night. It has saved my life and given me some quality back. Email me if that would be of help.

Dave

We are being abandoned because of people like my heroin or any drug you can put in a needle addict son .I don’t blame anyone but him for his choice to illegally use opioid pain medications. I feel for the families who lose loved ones but their loved ones chose to ingest something they know could end their lives as they know it. And since politicians became our doctors life has gotten worse for all of us. While the opioid prescription rates go down opioid deaths still rise. If we would have had law enforcement involved at his first theft from family my son would probably be clean now instead of having a warrant for his arrest. Go to a support group at first sign of abuse so you know an addicts behavior. I have had two thoughts that I would have never had. Go to illegal opioid medications from the street to relieve my pain that has been under control for years or if pain is relentless use heroin to go to sleep forever.

Shelley Dent

Very well written. The new policy on not prescribing and/or anti-anxiety medications with opiates is ridiculous. I used both successfully to manage pain and insomnia for 25 years. Now i go for days before my body wears itself out and i finally pass out from exhaustion. I have tried repeatedly to talk to my “new pain management” doctor after my neurologist of 25 years was told by the hospital that employs him he could not write anymore scripts for these medications. How can it possibly be healthy to go for days without sleep witch just requires more pain medication to be needed? I have tried every OTC medication available.

S. Dickersum

I’m in the exact situation this person is in. I’ve been successfully treated with high doses of Fentynal for more than twenty years for a non-operable condition and have been able to live a mostly normal life.

Hate to say this but someone will go through a similar cut off and will answer the issue with a gun. Then and only by a tragedy will America wake up to what is being done to good people. Feel sorry for the innocent lives being affected but this madness needs attention!

Eileen

Typical for our government. No rational thought happening here. They love to use the argument that guns aren’t the problem it’s the people using them, but when it comes to opioids suddenly the reverse is true…it’s not the people it’s the drugs. Really? Huh. Pick a rationale and stick to it if you’re expecting any credibility. Where’s the war on guns?! Like your friend, I have full-body RSD/CRPS, gastropareisis, spinal stenosis, and degenerative disk disease. I was on both fentanyl patches & either methadone or Oxycodone for breakthrough pain for several years but opted for an SCS implant specifically to avoid continuing on these strong medications, but the 2nd SCS is failing in under a year (both have had mechanical issues). There are no other alternatives for me that I can afford on Disability. We have the most painful disease known to man and our government, our medical community, and our doctors have abandoned all of us. Our disease is already termed “the suicide disease” because of the unremitting, horrific pain, but color me jaded, maybe that’s the end game? Perhaps our GOP Administration has decided that we’re a ‘drain’ on society and what a great way to simply get rid of us. Coerced, yet voluntary suicide/euthanasia. I’m already wheelchair bound & fairly bed ridden so I’ve got this handled & am simply too stubborn to back down from a good fight. Give my positive vibes to your friend, tell them not to give up…not yet! November may see this Administration gone.

Well written, succint, and how can you doubt the veracity of one so well informed and intentioned?

Being

It’s scary that they want to go back to the more acceptable number of prescriptions written in the1990s when the biggest generation E-V-E-R had not hit their sixties yet even splitting them in two boomers 1 is still the biggest generation…hope they get over epidemic cause I see a genocide coming….

Jeff

Ellen,
Thank you for yet another well written article! We however until we start getting our stories covered by television and newspapers along with other media outlets our lawmakers will not feel the pressure or need to help or change anything.

We also must realize and understand most of us are disabled, limited or as I prefer to say differently abled our governments view is we are not contributting members of society. So our government is like it or not they are forcing the untimely deaths of each and everyone of us.

I like so many am a perfect example of a pain patients life. I won’t bother going into my medical history but this is one part of it. One day at work I made one small mistake that nearly ended my life eighty one broken bones many of which were compound factures the one part I left out is I had undiagnosed Epilepsy had a gran mal which caused me to fall three stories that is just one snipet of my medical story.

So far the opiate war has only hit one of my meds that med was lowered by ten milligrams per day that doesn’t sound like much but it has had a fairly large impact on my pain controls. However I am definitely feeling the pressure to get off the meds that have allowed me to enjoy some life while I cannot work due to my health problems does that mean I don’t deserve to live and be treated as a human being with all the same needs as everyone else? Does this mean serving my country as I did in the United States Army doesn’t count?

The National Pain Report is doing a wonderful job but we the patients must band together and if need be find a way to March our way to DC and stand our ground armed with sound science, our individual stories and demand our free and equal treatment without our government interfering in or with our medical care and our right to be treated with fairness and dignity. It is time we stop whining and rise to the occasion and fight for what’s right and our rights.

I have noticed something else that’s not being discussed enough. The CDC counts herion/fentynol deaths and overdoses as opiate deaths. This is wrong, unfair and at best bogus. These people are drug addicts NOT pain patients and should not be counted and categorized with us the legitimate pain patient. I have had this affect my own family my Lil sister died at 41 years old from severe drug abuse, one of my nephews went to my pharmacy lied and got one of my prescription meds yes I did prosecute him he was given 16 years in prison.

Extremely well-written Ellen. You speak for each and everyone of us. This story should go public and viral as well as the comments attached. So very many chronic pain patients in misery and agony. It is beyond my comprehension as to how our country can continue to be so ignorant and heartless.

Buddy M

Yeah it’s a complete joke now. My family doctor and I a couple years ago worked hard to find out what worked for me for chronic spine/back problems. Then all the sudden, nothing. My life took a turn for the worst. Then this past March 15, I was hit in a crosswalk by a Ford f250 going about 15-20 mph. He never saw me. Multiple serious injuries/traumas later, 4 months to be exact, I have no other pain med other than kratom. I was told the pain management wait was 6 months. And the last time went I had to BEG to get a couple of opioids a day. It’s just not worth it. I think it’s completely ridiculous the way things are. If you have the proper proof of injuries, what’s the issue? Then ban opioids…why have them made if the people needing them can’t get them. Oh, and you wanna talk “crisis”? Alcohol has caused more problems and ruined more lives.

Heather

I have been living with chronic pain for the past 12 years I was prescribed 20 medications at one point 5 of which were narcotics, then one day I see that my Dr was arrested for over prescribing, well after that I tried and tried to find a Dr with no luck at all, I ended up going into a method one program just to get medicine that helped with my pain but having to go everyday to dose was not for me now because of that I can not get help at all even with a letter from the Dr at the methadone clinic saying he was treating me for pain no Dr will touch me. I am to the point of using illeagal drugs just because I have no quality of life. I have MS and Cronic Inflammatory Dymylenating Polyneuropathy CIDP for short, I was told in the beginning that I have 5 yrs to live thank God they were wrong but if I can’t get some relief than I would rather be dead. And why do they let insurance companies, the state, pharmacy’s or anyone else say what a patient needs.

Caitlin

The “war on illegal drugs” from the Reagan times has been, and will forever be un-winnable. The war on cocaine, herion, POT… the government FINALLY realized that These drugs will always find their way into this country and the users hands. So they turn their sights to the “opioid crisis” or ‘the war on legal drugs’. They can’t win one war so they create one that they can put the fear of God into the pharmacies and doctors by fining them millions of dollars and threatening to take away their licence to practice, for simply doing what their medical hippocratic path compels them to do. Here in Fla they did raids and shut down all the pill mills (the doctors that prescribed strong drugs with little to no documentation from the patient), and that was a great step in my opinion but they didn’t stop there. They fined Walgreens $80 million dollars for filling prescriptions and fined British drug maker Mallinckrodt $35 million basically for MAKING opioid meds that allow people with severe chronic issues to live a productive life. The government has made scapegoats out of the big guys and in turn all pharmacies are afraid that they will be next. Pharmacists take an oath as well, and the first sentence in that oath is “I will consider the welfare of humanity and relief of suffering my PRIMARY CONCERN”. Now those that have legal prescriptions are told by most pharmacies “sorry we don’t have that medication” , ignoring the oath that they took because the government has them scared to death and it is just easier to say they do not have it than to end up under the microscope of the DEA or fined millions. Unfortunately there is no ‘balance ‘ in government anymore. It is either full tilt crackdown on something (even if it is legal), or look the other way… Full hard right conservative, or full left liberal. No happy medium. I said this when they started cracking down on prescription meds ” watch heroin make a big comeback”, and within a year it was on the news “heroin use drastically up”. Drug abusers will find a way to get their high, don’t take it out on the poor patients that need that medication to maintain any kind of lifestyle. The state of our government just makes me sick anymore…

June McPherson

I was just told today that I soon will not be provided the Methadone I’ve been taking for many years. Plus the completely cut off my Vicodin I have been taking for breakthrough pain. Instead they will give me morphine. How is that better than Methadone? I have 2 scoliosis curves, degenerative disc disease, spinal stenosis. I’ve had 3 surgeries for herniated discs which were on a nerve. This is excruciating ! My last surgery I also had a disc compressing my spinal cord. Without y pain meds I don’t want to move because of the pain. I’ve been regulated on the same dose of meds for at least 15 years. Now, because some people are abusing narcotics the people who are on pain meds and don’t abuse their medsare paying the price. Those abusing narcotics are still going to get what they want off of the streets. It’s also going to force many pain patients to resort to getting their meds off the street also. I’ve heard several patients say that’s what they are going to do. They are only hurting the patients who need these meds for health reasons. The abusers will still get their meds from the streets. And it’s forcing people who need pain meds to the streets also..How is this helping the “opioid” crises ?My doctor and I discussed this “crisis” a few months ago. No more people are dying from opioids than from anything else. The more attention drawn to this fake crisisthe more teens, as well as others get interested in them . Just like alcohol, cigarettes, red bull, etc. But there are many sick people in pain who need opioids in order to function, including myself. Why are you punishing us ? We aren’t abusing our narcotics! We need them to live and not be in excruciating pain 24 hours a day. If you had to live with chronic pain then you would understand our situation. This is inhumane !!!! People have already committed suicide because they couldn’t stand the pain any longer. This should not be happening in the United States today- punishing those with health issues that cause severe pain while the abusers of drugs are on the streets making even more money from those who can’t get their pain meds from a reputable clinic . They’re risking their lives, and prison for pain medication.this is wrong !!!

Zack

No more meds, can’t even walk anymore. 37 next month. My wife will miss me.

john skeba

Help me

Molly Canfield

“The CDC and the FDA are not limiting Physicians instead is is the states doing this.” I take issue with this because statements made by the CDC ( with inaccurate field statistics) and the FDA have put an emphasis on the evils of opioid prescribing. Physicians are taking up the position that they must ” Hold the Line” with recommendations made by the CDC and the FDA to limit the # of milligrams of opioid medication “allowed” per chronic pain patient per month…regardless of our conditions, severity, and our prognoses among a host of other mitigating factors. The federal government absolved the CDC and the FDA of their culpability in making our physicians and our medications the evils in the Opioid Crisis and, instead, made us (the chronic pain patients) the drug addicted bad guys who are looked down on when trying to have our legitimately prescribed medications filled at pharmacies dictated by our insurance companies regardless of our wishes and convenience. The false narrative surrounding our plight is egregious and criminal in my opinion. I just received my monthly explanation of benefits from Aetna, my health care plan at the moment, which describes how fraud can impact Medicare and “lead to higher healthcare costs.” It describes some examples of current fraud schemes to “be on the lookout for”. The most notable jumped out at me the first time I read it…”Fraud – people going door-to-door to sell you Health Care items or Services (ONLY YOUR DOCTOR KNOWS WHAT YOU NEED.)” !!! If only this were true! Apparently everyone else, including the Federal government officials, know what I need and has kicked my doctor out of the way. Would our elected officials feel the same way if it were their mothers, fathers, children , siblings who were living in ongoing, insufferable pain? From what I can see, elected officials do not have to play by the same rules as the person “living” under the exhausting mantle of intractable pain. Walk a miles in my shoes, Congressman/Senator…IF you can stand it.

Artcat

My doctor told me last month the laws were getting too restrictive and he could no longer give me the pain medication he’s been giving me for the last 18 years. I had to retire due to severe RA and those medications gave me some quality of life. I’ve tried CBD oil for some relief but pain management doctors will drop you for using it. If I have a good day, I took less medication but the pain doctor measures blood levels and if you test for less than prescribed, they drop you. No incentive to use less on a good day. So I’m in constant pain and zero quality of life. People in this situation see suicide as a viable option. Others will turn to illegal drugs and increase the number of deaths. Its criminal to abandon patients like this. We have no options.

Bmsoriginal

I agree!! Why am I being punished because some people abuse drugs? I’m not one of them. I need to be able to function, go to work, sleep at night, brush my hair. Simple tasks, but impossible for me to perform at times because of the relentless pain. I also was told by my Dr that he would no longer prescribe Hydrocodone for me. I don’t get any relief from any over the counter medications. At 58 years old, I find myself contemplating if l can go on like this. Debilitating pain changes your outlook on everything. I cant enjoy my family or friends. The lack of sleep interferes with my thinking, causes weight gain and makes me irritable. It’s so frustrating to know that there are medications that improve my quality of life, but I can’t get them because I’ve been stereotyped. I’m not being viewed or treated as an individual, but rather as a class of people. There will always be a segment of society that abuses substances. Instead of blaming the substance, make the person responsible for their actions. Someone looking to escape whatever will find a way of doing it. Opioids are not the cause of addiction, people are. Those people need to get to the underlying issues and learn to cope. They need and deserve help. Taking Opioids off the market wont solve the problem, addicts will find a substitute, like alcohol or sniffing glue or whatever. The people who need opioids to manage physical pain will just suffer more. This decision is inhumane and ineffective. It will not solve the addiction problem, inadvertently make it worse. People in constant pain may turn to illegal sources, just to get relief. Unregulated medications may be placed with who knows what, causing even more harm or death
So, through no fault of my own, me and countless others are being forced to suffer needlessly. What a sad commentary on the age we live in. All I can do is pray.

Lynne mathis

I have been suffering with RA since I was , 22 I am now 65 ….I have been seeing pain management Dr
For 20 years ….he Is the best I went for my monthly visit he wrote the same RX as usual …..no worries but now with the HB/21 law my pharmacist I is too scarred to fill it my insurance will covet it bit here I lie with No meds WHAT DO WE DO ?
PLEASE HELP US thank you

Robin Eidt

Thank you,thank you!! You said everything I’ve wanted to but didn’t figure it would be heard. I have a number of painful issues but the one that causes me the most problem comes from a very botched surgery. I will suffer from this and more the rest of my life. I think people like us are being shoved aside with no care for what is going on in our lives. Nobody would in their right mind would want to live with chronic pain. I just want to live my life best as I can. My pain mgt. so far is taking care of me ,but who knows when due to the opioid crisis that will be taken away. These people who are making these decisions need to look totally at all angles not just one side. Thank you for getting this conversation going.

Just read your article and I am so glad that you wrote the article because I too am chronic pain user opiates. I used to have a doctor that cared enough to make sure I was able to get out of the bed and live a normal life daily but. Unfortunately he has been arrested and now I am having one hell of the time trying to find a pain doctor and it is so hard to look for help when your own primary physician looks down on you other doctors look down on you just because you take oxycodone. I have been on oxycodone since 2013 and it is the only medication I have found that help me be able to get out of the bed in the morning and feel as though I could survive the day and now I don’t care if I get out of the bed or not because I’m hurting so bad and so tired of trying to fight this battle of finding a pain doctor that will see me. I I think this whole opiate thing is foolish because it’s not the opiates that are hurting people it’s the people that abuse the opiates are they are on the street doing heroin. So why is it that people like me and other people that are in chronic pain having to pay for something that we have been using to help us to cope with life I think the government and the law enforcement need to open their eyes to the people that are on the street doing heroin and the ones that want to commit suicide now because they have no pain relief because of the stupid idiots in Congress that won’t pay attention or that don’t care about people like me who live in chronic pain I think that they should concentrate on other situations at hand instead of Messing with people’s lives that depend or have no choice but to take the opiates for their pain. I know personally I should not have to be begging pain Institutes are doctors to take me as a patient because it’s all I can do to get out of the bed and focus because of the pain that I suffer through I have fibromyalgia osteoarthritis heart problems avascular necrosis 3 right hip surgeries and severe stomach problems from taking hydrocodone and Percocet aspirin in it that is why I had to go to oxycodone because it has no aspirin in it. I hope that all of people living in chronic pain will see this article and put their input in about living in chronic pain because I wish it on no one and if the government would get their p’s and q’s right they should be helping I want to help the people suffering with chronic pain it’s like we are being punished for something we haven’t done.

Jim McAnena

I am also a 23 year chronic pain patient who has never had any of the negative effects of opiate addiction. I have used all the other methods multiple times including the genetic testing that tells you about how you perceive pain, your addictive potential and which opiates and non steroidal s work well with your body. My aunt has 3 doctorates, Nursing, Psychology and I forget what the 3rd one is. When I was put on the chronic pain meds after an 8 week review of my case and I was given SSDI on my first try, no appeal, no judge, she begged me to go to whom she considered the best detox and recovery facility. I agreed to go and was there for 2 and 1/2 weeks and I participated in everything and met with all the psychologists and counselors, which was highly unusual as you are normally treated by one psych and 1 or 2 counselors. One day I was called away at lunch to go to the office of the doctor who owned the facility, and it is a large facility, and to my surprise his office was filled with my family including cousins and my aunt and uncle, they all flew in from New York to California, where I live and so was the facility. There was also my parents,sister, grandmother and a few friends. There the doctor told my family ,and me for the first time, that I had no problems with taking the medications and that I would be on them for the rest of my life and what was needed was love and support from my family towards me. That ended all talk about me and the pain meds and life with my family was much easier. I also took myself off the meds 3 times with the longest time without meds being 2 and 1/2 months and everytime all I did was lay on a bed and moan and whimper with little sleep and lots of pain. I was yelled at by 2 pain management specialists for doing this but I wanted my old life back. I was also a patient of the head professor and Pain Management specialist for UCIrvine medical school. He personally treated me for 3-4 years and had me twice bring in my family members so that they could help him convince me that I had to take my pain meds and I would always need them for the rest of my life. All this was before I was hit twice by very large vehicles while I was stopped at red lights and had to have most of my back fused and many other surgeries. See my life was great. At 29 -40 years old I was making from half to a million dollars a year, owned my companies, ocean and country club view large home, $100,000 cars, 2months/yr vacations. So I didn’t want this life

Steven

Thank you Ellen for your article, as usual you’ve hit it on the head very question we all are asking ourselves. Why are they killing us? But alas we have not the answer at least I didn’t see it if I missed it. Depopulation? If anyone saw the answer please make comments and enlighten me. If not then as they used to say in the military every man for himself. Which was basically saying we’ve all had it it’s been nice knowing you. It’s not sarcastic it’s totally truthful and it’s where a lot of us are right now. Either you can do 90 mme or you’re dead. I can’t for my part.

Billy James

I don’t c why we have doctors anymore….. I have severe chronic pain due to surgeries and injuries but when you go to the doctor who has taken an oth to help their patients they just say oh i don’t prescribe narcotics….. Even when they know you need it….. They may as well close up shop……frustrating

C.Rog

What is the point? The doctors make excuses why they cant help, the insurance companies find away out of paying for the test the doctor needs, ya UnitedHealth care. Loves that 7500 yr premium, but spends 10000 finding away out of helping or paying, really us chronic pain patients have only one option, a bullet!!!. 15 years of enjoying life. And a decent quality of life, to sorry you gotta suffer now, funny I was left to fend for myself, no help from the doctors that took an oath to do no harm, so you think you did no harm, by leaving me without pain relief and withdraws from fentanyl and oxycodone, news flash, you doctors,FDA,CDC did more harm than good!!.so this is what you gotta do if your a chronic pain patient, quit paying the big insurance company, and forget about going to a doctor, that really doesn’t care about your needs or health. Maybe they both will go broke, and hopefully someday they need pain relief. And they suffer like the millions that are right now……..

Rayna

This is absolutely sick and the people who truly need this treatment are being ostracized because of those who have abused it. I do believe that it started or in large part had a lot to do with doctors and “Pill Mills” who dispense these medications with no reason to do so…. the pills hit the streets and the epidemic began. By no means am I saying that Society and the public are completely innocent because regardless of if there are doctors who over-prescribed there people who are going to seek it out somehow regardless! There has to be a fine line drawn here and there needs to be educated professionals who know where to draw that line. As someone with chronic pain who has one option of treatment other than that pain management/ injections, steroids things of that sort at 34 years old I am stuck between a rock and a hard place. A young woman who used to be active, energetic and full of life… someone who has workef with children for 18 years and has been a private nanny for five of those 18 is now being criticize simply because of the type of doctor I go to. I do not have insurance, so I pay out-of-pocket for every treatment. If I am prescribed any medication then my psychiatrist who treats me for anxiety disorder and a few other things has completely stereotyped me. I have not, do not and will not abuse any medication ever given to me. I am in pain! Pain that is undescribable. I have a degenerative disc disease in my back… There is no getting better, it only gets worse. My L3 and L4 are moderately degenerative my L5 to S1 are severely degenerative, with severe sciatica, condensensas ilius ( selling my apologies) Baker’s cyst behind both of my knees that continue to reoccur and nerve damage in my legs in an undetermined location because when I did have insurance it would not pay for the EMG test that I needed. Right now I am trying to search for another insurance company who will take me based on pre-existing condition(s) I am 129, always been very active and now this has affected every aspect of my life mentally and physically. This situation needs to be looked at as a circle, not just as a slice of the pie! There are people who need this and there are people who don’t. There are people who have no options and their people who can get other treatment to try to improve their condition. For the people that need medicated currently they should get it. Doctors can be regulated by pill counts, urine screens and many other things this is just sad

Laura Raley4

because our government cant stop tbff e illegal drugs coming in like heroin. so nok w to make themselves look goodbthey,are stopping that war and are now starting a new war on legal drugs. sorry for typos deformed arthritic fingers typing on a cracked and shattered cell with little keys.
personally i think this could have all been handled if WOMEN RULED
now the suicides will be from the people who live in chronic pain and have had there meds taken by our ruthless government
i know this because i will be one of those statistics soon

Pain patients unfortunately suffer because good Physicians wanting to help patients are targeted by State Medical Boards. The Texas Medical Board has retaliated, without just cause, against many good physicians who challenge their unsupported dogma.
Google: “Retaliation against physicians by Texas Medical Board”

Most Texas MDs and DOs are afraid to help their patients.

Maureen M.

Ellen, while it is no surprise to me, my jaw dropped reading the horror story of what happened to your friend. May God bless her with an unusual calmness and better health one day.
Each story I read about another CP person losing their meds breaks my heart a little bit more.
Every month I see my doctor and hold my breath until I walk out with my script in hand. I get in my car and tell myself to BREATHE.
I wait….for the day it happens to me.
Like millions others, I continue to not be able to fathom this inhumane, extremely unfair, wrongful treatment upon our community. It truly is a living nightmare.
Let us rise, let us rise and be treated properly! Keep strong Warriors!!

Trisha Freitag

I took Methadone for pain for 10 years. Fortunately, I no longer need it because I use cannabis. While it doesn’t work for everyone, it is an alternative for people who find themselves being denied the medication that they need to function on a daily basis simply because the government decided to attack the wrong part of the opioid crisis. What they need to do is treat the addict, crack down on the manufacture of methamphetamines and synthetic opioids, and leave chronic pain patients alone. However, I have a feeling it’s going to take someone up I getting sick with a chronic illness that can only be treated with opioid use for them to understand that there’s a big fat difference between addiction and dependence. Thank you for writing this article.

Katt Solano

Thank you. I have been living with chronic pain since atleast 10 years ago. I am about to e 40 next week. I have worked so hard to find doctors to believe me, not question my weight or purpose. To believe that something was wrong. Going from a strong woman who could help friends move, handle crisis and do anything she put her mind to, to a woman who could stand 15 min todo dishes and it felt over night. I had to move. Different states, many doctors and many tears. Opioid based meds have been the only way I have been able to have a quality of life. This new war on the meds That have given me life, given my husband a wife and children a mother even tho now. Fully disabled on Medicare since early 30s.i am not a kid who went to a dentist and became. Hooked on heroin because my script ran out of 5 mg hydrocodone. Every TV show seems to throw in there, that bad guys r oxy users or that prescribing meds for pain sent someone down a life. Of crime.
What about me??? What about people like me? I spend days in bed and the only way I can even smile is because my medicine can take the edge off. It isn’t even 100% pain relief we get. Our pain scales r not like normal healthy people and that stupid face card of 1 thru 10. Everyday is like and 8 or 9 when people say 10 is childbirth… How can u expect people to live like that? Our family has to move soon, once again I’ll start over with a doctor and pray this new states laws and doctors out of fear don’t destroy my whole life. I have no idea what is going to happen and this should be an amazing time in my life. We need more people like you’d. To wrote stories for people like us. 💙 Thank you. God bless. And I pray this war does not kill us warriors who have been in war with our bodies and the medical worlds for longer then people have been getting worried about this and blaming whatever r they can for their neglecting their families and having their own issues.

Brian K Olear

I emailed the FDA told them I’ve been responsibly taking opioids for 18 year’s and gave them permission to have access to all of my medical records since they claim there is no longer term research on this issue….no response

candace

this article says it all. I have multiple conditions that cause chronic pain. I was on opiates for years. That was the only way I could get out of bed. Months ago the doctor stopped writing prescriptions for all their patients. I can’t even count how many times I considered suicide because I cant handle the pain much longer. I am 53 years old. I understand the risks of pain medication and gladly accept that over my life now.

Aimee Woodke

I have considered suicide…….

Fed up

God help those in pain having to deal with the state of things right now

Julie

I thank the author so very much for this article! She has “hit the nail on the head” about what is happening to chronic pain patients, including me. There need to be more articles and stories in the news about what chronic pain patients are going through right now as a result of those in power making horrible decisions. There’s too much in the news about the addicts, and not enough people have heard or realize the chronic pain patients’ side of the story.

Linda

Wonderful article!

Santino G

Well written Ellen, please tell you friend I hope she is well and I am thinking about her. Thank you always for fighting for all of us with pain.

Shirley Stokes

VERY WELL stated! I, too, have been on opiates, a long with other medications, to control (never eliminate, just lessen) CRPS, secondary to a spinal cord injury. I have never abused any of my RX. Fortunately, I have been able to DECREASE my RX over the years. But I still require opiates to get out of bed and attempt to live.

Sharon Gulley

I have multiple back injuries & diseases that cant be cured, can walk only with cane, and have stage 3 metastatic malignant cancer. So i too am in a great deal of pain. I was on a pain regimen that was helping as much as it could, but they have cut back 2 of my pain meds. They work for maybe 2-3 hrs (on a good day), but i dont get many good days, so they help for about 1-1&1/2hrs, then i have anywhere from 3-5hrs of excruciating pain. I too am worried that they are going to cut them way back or stop all my meds. I have been on these type (opioids) for almost 30yrs & i have never overdosed on them & dont mix them with other drugs or alcohol. Ive ALWAYS taken them only as prescribed, so why am i and many others like me having to deal with excruciating, debilitating pain. Why are we being punished? I didnt ask for any of my medical problems that require pain meds, didnt purpously do something to hurt myself so i could get them, and sure as hell didnt ask for cancer, and advanced stage cancer at that. Im sure nobody else with these type of medical problems asked for or purpously caused their problems.

Elaine

I have Chrons and an ostomy. Fibromyalgia. Bone grafts in a damaged neck Shoulders put back in the socks twice.
COPD and heart disease. 6 WYEKS AGO my dr stopped writing pain meds. He sent me to a pain clinic.aThey are money pits. 3 visits to finally get a suggestion from the nurse for pain shouts in my HIP under anesthesia. MY FIRST QUESTION WAS …why my hip? She didnt even know why i was there.
I can barely get around. I have no help.
My new doctor is willing to get me maraguina by products now that its legal. But it will take as much as a year.
clinic. What am i supposed to do for a year?

Craig

excellent description of the horror and pain doctors are deliberately inflicting on their patients. Is it ethical? Is it torture? Answers coming in future comments. craig

Terry

It’s the same story we keep hearing over and over. My question is, what are our options? My meds have been cut down so drastically and so quickly that I am absolutely miserable. Is there anything legally we can do? I would like to hear from some lawyers, maybe we have a legal right to at least have SOME opioids, I’m petrified that they will just cut me off entirely. I was taking 200 mgs of oxycontin daily for ten years, now it’s down to 60 mgs daily and I can’t tolerate the pain I am now experiencing. I feel so helpless. Isn’t there some kind of law that prohibits this cruelty? God bless you all.

Ferri jack

Why do the most responsible users get screwed again.
We are the last group to blame.
I’d like to see a policy maker squirm like when they get voted out.