Has Your Pain Doctor Deserted You?

Has Your Pain Doctor Deserted You?

By Ed Coghlan.

The problem of patient abandonment is growing…and perhaps accelerating – as the federal government intensifies its pressure on both the supply and the prescribing of opioid medication.

So, here’s a basic question.

“Has your doctor abandoned you or been removed from you by a government enforcement action?”

Terri Lewis, Ph.D., a well-known advocate for the chronic pain community, wants to learn how you are being affected by escalating enforcement actions and the news of widespread closures in multiple states.

Dr. Lewis’ survey of chronic pain patients – which was promoted extensively by the National Pain Report – surveyed nearly 1700 chronic pain patients. Here’s how she described who the patients are that responded to her survey. (click here). Analysis of more than 25,000 lines of comments is continuing.

“Clinics are being closed either because the DEA has raided them or physicians have been intimidated to reduce their opioid prescribing practices, or HHS-OIG has conducted fraud investigations that are closing clinics.” said Dr. Lewis. “Patients are being impacted, and often persecuted, because of the pressure to enforce CDC and state guidelines that have little to do with the reality of effective treatment for chronic pain and its diverse range of causes.”
This is resulting in targeted activity by both DEA and HHS that is reducing the local resources for care of persons with complex chronic pain and multiple comorbid chronic health conditions.

By Dr. Lewis’ estimate, the recent FDA raids of offices around the country – particularly in the Southeast and Mid-Central regions of the country – have threatened over 100,000 patients with the loss of their doctors in recent weeks.

“So, where are people affected and what are they going to do? This is what we’d like to explore through our survey,” she said. “We can both increase the number of people who are responding to the survey and isolate the number of people who are being adversely affected by their location. This will help advocates and physicians determine where the need is great and communications need to be coordinated.”

These closures have downstream consequences including the seizing of medical records that make transition to other clinics nearly impossible given the patchwork of state laws that govern both ownership of medical records, procedures for accessing a range of care protocols, and appropriate clinical supports. HHS-OIG’s actions have reduced clinic options by a significant number in multiple states.

These governmental actions have a cross-cutting dragnet effect on patients that is invisible to government policy makers intent on reducing prescriptions and deaths due to street drugs.

This week, the DEA announced it will update its established procedures for setting production quotas for addictive drugs without heeding a recommendation from medical groups regarding shortages of injectable opioids. A new DEA rule also drew complaints about the general attitudes toward treatment of chronic pain.

And Dr. Lewis – and many other chronic pain advocates – believe that the DEA actions are hurting the millions of chronic pain patients who depend on opioids to manage their own chronic pain because effective options are few and far between. What is trying to be identified is real stories from real people about how the federal government’s decision to crackdown on prescription opioids is impacting the quantity and quality of chronic pain care in the U.S. health care system.

On July 9, the nation heard affected persons tell the FDA that access to approved medications and safe care had become so burdensome due to flawed application of enforcement activities coupled with regulatory overreach that drug development should be put on the back burner. Many expressed that they had already abandoned the use of appropriate opioids due to the headaches associated with the current climate of enforcement and lack of physicians willing to risk caring for patients. Others expressed that their options for medications had become so narrowed as to be ineffective, insufficient, or downright dangerous given individual needs. Many addressed the burden of increased suffering and suicide.

Many expressed their dissatisfaction with the failure of government agencies to account for their needs or solicit input before now.

So, we are reopening this survey in order to offer folks the continuing opportunity to share how they are affected by the increasingly restricted environment.

We will continue to assist with continuing to build the evidence that describes how current government policies and enforcement actions are affecting individuals families and their care providers.

The link is located here: https://www.surveymonkey.com/r/Y8YXRJ9

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Authored by: Ed Coghlan

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Teensey K Lundin

Ive never done street drugs but now have choice. I have no idea what im actually buying or the character s of the people i will be forced to deal with. I live on disability and i dont know where ill get the money for these drugs, im horrified at what im being forced to do. At least i have one way out if its to unbearable…a .357. Cause how i live now is not living

Lex

I’m a 24 year old with chronic pancreatitis, sphincter of oddi dysfunction, pancreas divisum, liver problems, gastroparesis, and a feeding tube. After almost 4 years of pain management treatment a new medical director came to the clinic and dropped a ton of patients. A lot of them were there for years. I now have nothing for my pain and I’ve lost more weight due to increased nausea from my pain. This is flat out ridiculous, we shouldn’t have to suffer for others.

Another untreated patient

I stopped going and will never trust you doctors again now I have to find my pain medication from any means necessary. So most of the time I’m in pain. So my idea is to hurt you doctors where it’ll hurt the most in your wallet by not going. The doctor-patient relationship has been ruined Beyond repair good luck getting any of my money or my insurance company money from me ever again. In fact I would bet your practice is already hurting. Which is what you get for your Draconian ways of not treating us. For not standing up for our rights against the DEA and the CCDC and everybody who thinks my pain is trivial.
Any patient that’s being mistreated for chronic pain you’re not going to get any help from doctor so why go.

My doctor dumped me after multiple years with her. On June 12 she face to face said to me, your chronic pain is so well documented, I’ll always keep you.
WELL, exactly 6 days later I received a letter stating Dr X will no longer be prescribing to any chronic pain patients. Well of course I thought it was a form letter and it accidentally got sent to me. NOPE I WAS DUMPED.
The real slap was she had to know she was going to do it when I saw her. Then NO HELP, just ABANDONED. With 7 phone numbers. And first 5, did not prescribe pain meds. They could admit me to a hospital and do a rapid detox and then offer PT and injections.
Well I’ve done ALL that and Medicare will not pay for it again.
So at 67 yr old and on pain meds 20 years and NOTHING.

Becky

Whomever in gov that started this and they are known, will be voted out. Positively. When people have cardiac arrests from writhing in pain if this continues, hope those responsible will think about their actions and what their actions did to helpless folks. Such a sad course of events.

Jerri Killen

HELP !!!!!!

Yes he did after 17 plus years . I made a comment .aybe I should find a new dr. And he booted me…. Took me months to find a new Dr.. lucky I had enough meds to get me tbru that time..

ROGER THOMASON

The next thing you know your doing street drugs just to kill the pain your in shameful my god how terrible.

ROGER THOMASON

Roger here iwas seeing a pain dr for one yr and we finally got me on the right regimen of opiods the one day he said now that i have you on the right regiment of pain meds i want you to go back to your primary care dr so i did and she said well i cant precribethat that being oxcycodone#30s she was not going to give me nothing but i had to explain to her i would go into terrible withdrawals so she said ill give you 3 norco a day i said im still going to have a rough time with withdrawsls no response from her. When i got home i called my pain dr. And asked if he could help wean me of oxcy 30s 5 a day he said we dont do that here.so i told him to kiss my ass. Then i fired my primary care dr. Got new primary care dr. He said he could only give me 3 norco a day also i qustioned hi on this he was at least honest enough that he was told by management je coupd not give me anymore or he could be termenated and because of the dea he could lose his license i atleast admire him for telling me the truth so thats where i stand 3 norco aday and still in chronic pain unreal thank you for listining.

Terri

If you are having difficulty completing this survey and want help, please email me at tal7291@yahoo.com and provide a phone number where you can be reached. I will call you and help you to complete the survey.

Connie S. Hensley

I cannot tell you just how much I appreciate your article, and I am so thankful to have someone advocate for patients who suffer chronic and acute pain regularly, and do not abuse their Opioid medications. I have been personally affected in several ways. Doctors and health care providers are obviously in fear of helping patients because of the continuous bombardment of daily negative articles and news stories that have become the main focus of the media. I suffer chronic continual pain throughout my body that increases my anxiety and depression. I do not have young children, or teenagers in my household. I have no viable reason to have to lock up my medications, and could if necessary. I have several chronic conditions that leave me almost totally unable to function on a daily basis. I believe that there should be a new and different approach to the laws, and regulations of both patient needs, and provide Physicians with protection from losing their licenses.

We have seen a society of people in our country that have debated over what they see as a great epidemic of abuse and life threatening, deadly Opioid crises. It has taken us into a political debate of a one-sided conflict. We have debated similar situations on gun control that pushes politicians and lawmakers to act solely in favor of people who want to take away the rights of other citizens based on their experiences and beliefs that they can totally control and prevent future consequences of violence and death. Many people who have suffered terrible emotional pain and loss naturally feel compelled to push for laws that would both honor their deceased loved ones and therefore feel they have done something that also gives them comfort, and control of their situations, which ultimately helps them to move forward with their lives in the face of great pain and suffering. I am not in any way placing blame on victims, their families, and loved ones. Rather, I am trying to take a very realistic approach to understanding both the rights of law-abiding citizens , and the people afflicted with tragedy by illegal use of firearms. Many crimes have been committed due to the failure of gun owners to take the proper precautions to lock up, and store away guns, and keeping them out of the hands of those who intend to harm, and or, kill innocent people. Similarly, the same actions, or in actions by those who are prescribed legal medications, result in permanent harm and death to those who have access to them.

Maureen M.

FYI…I’ve made 3 attempts to do the survey. I cannot do it all at once (it’s lengthy) due to pain. Each time I went back to it it had not saved my info.
I will try one more time when I feel I can try to make it through it, but it is not likely that I can. 😟

MaryAnn A OMalley

Well there is a huge problem ,we are caught in the gun fire of it..I’m a cancer patient with multiple fractures that did not heal.a few weeks ago I went to pick up my prescription and they said they were out of the med, and it was later on Friday my dr was gone so I couldn’t have the script transfered elsewhere.I never heard of a pharmacy being out of a pain med..I know they were going to cut people back but I told the pharmacy they should had called knowing I’m a cancer patient and it was Friday ,I couldn’t transfer the script until Monday and just had to be in pain
The solution to this pain med crisis is if you are in chronic pain and have a long term illness switch over to palative care.your gp can refer you.they do the interview and review your records then they do your pain management .and all your meds come directly from them and you can still be on treatment it’s not like hospice end of life care.
We do have a huge drug problem in this country ,people get robbed,shot, beat up for their money so these drugs can get drugs.people do sell their meds.and these pain meds are very addictive .we have to be truthful about what is going on,in order to get the problem fixed so people in chronic pain and not the addict can get their meds.this is how alot do become addicts too prescription meds.I stop mine for a couple days here and there to make sure I’m not addicted and that.who wants another problem with a big illness.the Dr’s are afraid to prescribe they don’t want to be shut down or have Dea issues and you can’t blame them.if you haven’t tried pain blocks look into those it may cut back on the amount of med you need.and these pain Dr’s need to wean people off the pain meds when it’s time.I think them just cutting them off is creating addicts too they will go get street drugs.
We can’t blame the president and the drs and everybody else because it’s a really big problem.they should be using alternative therapies for pain along with the meds anyway.cbd oil,it worked I tried it,but its not cheap.even the ones with out THC help alot.

Robin Enochs

I’m 48 years old and have Marfan Syndrome. My hips, knees and back are a waste. Not a day goes by that I’m not in pain. I jumped through all the hoops (like a good girl) and was on medication for some time. We lost our health insurance and I could no longer afford out of pocket payments and subsequently could not go to the doctor. I have been without a prescription for roughly a year. I am ABSOLUTELY TERRIFIED anymore to try to get help to manage the pain. The way things have become, it’s hopeless…I have entertained the idea (more than once, I’m afraid) of suicide. (Anyone who suffers from chronic pain understands what I’m saying). The idea of leaving behind the people I love keeps me here…barely. It’s a sad way to exist…minute to minute, most of them spent in total misery.

Kratom and cannabis. Two popular natural alternatives to opioids. But Big Pharma and the fda want to take away the few alternatives we have. Kratom saved my life. I was hopeless and suicidal due to chronic pain and fibromyalgia. My pain management doctor cut me off due to regulations that are not letting responsible doctors do their job. Kratom really saved my life. I am healthy and active again for the first time in years. I have seen it work for so many people that were suffering and nearly suicidal to finally recover and thrive again. This article is outright propaganda feeding into the lies from Big Pharma and the fda. Kratom is a safe effective solution to the opiate epidemic. But the criminals from the pharmaceutical companies have the fda under their control, for two reasons: protecting profits and controlling the population. There is an abundance of credible research from scientists, doctors, the Botanical Education Alliance, and the American Kratom Association.
STOP THE WAR ON KRATOM AND CANNABIS! STOP THE SUFFERING!

Brandy Jones

I thought that I was just having bad luck. Thank you for this article, it gives me hope. I just relocated to an other state. My new Dr. said ask to many questions and took away my pain meds without looking at my complicated records. I’m a disabled veteran and it seems like this fact makes it more difficult for me to receive ethical care. I’m due for a neck surgery but I have been prolonging this because of no meds.. Kratom however has been good to me..
B.

Dave

It is unnerving that politicians are taking our doctors abilities to properly treat patients with chronic pain. I think most of us are in same boat and can’t afford the extra costs politicians are forcing on us. Such as seeing a pain management doctor once a month. My doctor who I have had for 35 years knows my medical situation more than any politician or pain management doctors. I cut most of my medications out because of the expense and the fact that why would I want to try and extend my life when I know that we had something ( prescription pain meds) taken away by politicians because of people using this medicine for other purposes. My son is a heroin addict and I do blame him and those in his situation for taking our quality of life away. To think I may be forced to use illegal drugs to ease my pain because of this B.S. opioid epidemic is hard to swallow. Thank You.

Rich Reifsnyder

Hello,I could just 🤮 reading these posts about all our Inhumane suffering,torture,stress,and sleepless nights from severe pain.The PM doctor where I go told numerous women if they don’t get the invasive procedure ESI he won’t write their prescription for pain medication.This is outright extortion in manipulating these poor women into an invasive procedure that isn’t approved by the FDA.I remember how the people in our country were up in arms in how we deprived Terrorists (Sleep)and it was all over the news how we were torturing the terrorists with sleep deprivation.I don’t see a single report on major news networks about the Inhumane suffering of us CPP,S and the torturous treatment we endure.Everybody was concerned about the terrorists but why aren’t the same people concerned about our Inhumane suffering and are treated worse then terrorists or drug addicts.We didn’t have a choice,we got hurt or were inflicted with a disease causing us severe pain.I just can’t comprehend how this country turned its back on responsible citizens that are disabled and suffering Inhumane pain.Two days after our chronic pain meeting that ourBrothers and Sisters,testified at the FDA meeting in Maryland AG Sessions cut the manufacturing supply of Opiod Medication again.If my math and data are correct that’s over 45% reduction in supply in the last year.The DOJ were told by experts and pain patients there will be shortages and right as I write this there are shortages in the country for post op IV Pain Meds and Trauma Centers.A lot of people canceled their surgeries.Even if the government cut the Opiod manufacturing supply to Zero the OD Deaths will not decrease it will increase.Everybody knows it is the Heroin and Fentanyl coming from China through Mexico that is causing most of the OD Deaths not from responsible chronic pain patients with signed contracts and giving all our rights up just to Live a decent quality of life.Thats all we want to Live and let our doctors treat us humanly with compassion,like we were treated before the secret Biased CDC 2016 Opiod Guideline Meeting.God Bless All our Brothers and Sisters.🙏❤️

Katrina Miller

I have asked two pain MDs if I am a candidate for ongoing pain management with opioids. This med keeps me a productive and a contributing member to society. Both professionals said yes but but would not prescribe due to the impact it would have on “their practice”. What a shame. I now sit on LTD because I can’t be treated for chronic pain due to Trumps threat of the death penalty to providers. The pendulum has swung too far. My LTD case manager confided that he can’t get anyone back to work since Trumps comment about the death penalty for providers who prescribe opioids. Once Social Security Disability feels this hit of so many not bring able to work, then something will change. Until then, I lay in bed most days. I’ve done (and do) all the voodoo prescribed only to have more pain or little relief. I bet Trump gets pain medication when he hurts!

Karen

I have a bone disease called ankylosing spondylitis. I also have multiple sclerosis. I have been taking opioids for the pain caused by these for several years. These are prescribed for me by a pain management doctor who is also an anesthesiologist. There are no drugs at his office. He just writes prescriptions. He is now weaning his patients down from their regular dose to 99 mg(?) Per person no matter the size or the disease or the amount of pain of the person. So a tiny girl would get the same amount as a large man. Someone with a low pain level would get the same as someone with a high pain level. These rules are ridiculous. They don’t make sense in the real world. As I am being weaned down I cannot do as much as I was able to do with my full dose. Now I can lay around, watch TV, go to the bathroom, and sometimes make dinner. I usually have a bowl of cereal for dinner because I am so completely full of Pain by that time that I’m not hungry and I can’t even walk the pain is so bad in my hips legs and feet. Suffice it to say that my quality of life has gone way down. And it will be going down even further as I am weaned off of more. When I tell my doctor this he looks at me as if he totally understands and can’t do anything about it. He did not go into this line of work to make people feel worse, but to make them feel better. I have never abused my medications. In fact I was on fentanyl at one point and I thought it was a little too strong for me I asked to be taken off of it. My doctor and I worked it out. I didn’t think it was anybody else’s business. Now here’s my other point. I honestly believe that these new laws or regulations are going to do the opposite of what they want them to do. I think that they may send regular patients out into the streets seeking help from street drugs. Believe me I’ve heard people talk about it. Pain is a real thing. Those of us that need opioids for quality of life are not selling our drugs. We are not out there on the street selling drugs. Taking us off of opioids will not reduce the amount of street drugs. It just doesn’t make any sense I just don’t get it. However it could turn a pain patient into a street drug user. They are going to find that this is going to backfire big time I think. I do believe also there will be more suicides of pain patients. Pain is real. Real bad. If there was something besides opioids that worked for my pain I would gladly take it. I do not get high off of opioids.
Thank you.

Misty Hoffman

My primary care physician ceased my pain management due to fear of the DEA and told me I needed to go to a pain specialist. I did just that, actually finding out the doctor that put my neurostimulator in was practicing at a pain clinic miles away from my home. That was last year. Now my pain management doctor is going to be withdrawing my pain meds for the same reasons. He doesn’t want to end up on the “naughty doctor list.” Basically in 5 months the very little life I have will be over. I don’t know what to tell my beautiful son and husband.

S. L. W.

My Pain Management doctor abruptly wanted to switch me to Suboxone after 5 years of steady, effective 4 x day Dilaudid and Neurontin. I was floored, and disagreed with him. So I left his care. This was in December 2017. It’s now mid July, and I’m still waiting to get into a new Pain Management clinic.

The amount of pain I’ve been enduring is horrible…. It will be nearly 8 months of pain without help.

This year, just horrendous. To top that off, I’m uncertain what kind of help the new doctor will be.

It’s inhumane.

As far as the last 5 years? Treatment by pharmacy employees is demeaning, if I may touch on that. They are friendly until you hand them your prescriptions. And often made to wait for them to be filled much longer than other customers. More than a few times 6 (six!) or more Hours.

Should I mention the depression that accompanies chronic pain?
Being mostly bedridden? Loss of quality of life?

And all this at age 52….. I have another 30 -40 years of this to go.
Although SO many have it SO much worse than I do.

God Bless Us All.

And a Huge Thank you to those of you who are trying to make this better for us.

Janice crisp

My doctor prescribed me hydrocodone for 9 years then added morphine on top of that. Suddenly I was accused of failing 4 . not 1 but 4 drug test. Out of no where. When I questioned them about this I was made to look like a drug addict . I had had 5 surgeries through this clinic. In no way had I ever had an issue with my meds. They called security becaise I raised questions and caused a huge scene in order to drop me as a patient. It was the most embarrassing thing in my life.

O Maynor

My pain management have closed their doors without any concern for any of their patients. After being on pain medicine and jumping through all of the government hoops for 15 years I am now abandoned by the pharmacy as well as the pain clinic.

Nonya

This is an extremely misdirected approach to helping to curb the flow of STREET DRUGS! That’s where the real problem is, NOT with legitimate pain patients! What a shame AND disappointment by our so called government! I know for a fact that THEY in power get whatever type of medicine that they need for themselves or there loved ones! What a pathetic joke being played on the patients that truly need these meds just to have a somewhat decent quality of life!

Farrah Hackler

This is a full blown witch hunt. The individuals that are overdosing, are not taking their medications as prescribed. Most of these individuals, got their meds off of the street.
Now we will have a much larger problem, heroin off the street! Can I say drug cartels and many, many more death’s!

Skeet

‘Hello’ is there any body out there?
I’m a big fan of Pink Floyd

I don’t think anyone is listening to “us the chronic pain community” or they just don’t care about us. These government agencies are getting billions of dollars for the war on opiates, do you really think they would risk any of that money by admitting that they got it wrong, that the majority of overdoses are from illegal drugs and not prescription drugs.
Sure there are people that abuse opiates but not in the numbers they the government are claiming.
It is getting much more difficult to get pain medication, at my pain management center it has exploded in the number of patients in the past few months and the appointment wait time went from a normal 1 hour visit to an all day event 5 hours for a 5 to 10 minute visit with the doctor and I am really afraid that it will be shut down.
If that’s not enough I just went to pick up my medication at Wal- fill in the blank and the cost went from around $60 to $102 just for this type of pain medication (opiates) I don’t have prescription drug insurance but I have a discount card that I use but Wal- will no longer allow it to be used for this type of drug. Another casualty of the war on opiates.
Will it ever end? what is it going to take to get them to listen. I’ve been dealing with RSD/CRPS for the past 15 years

Tamela J Cunningham

I’ve given up on trying to get help with my pain. When it flares up it last 2-3 days and I spend that time in bed trying to find some comfort. I’m only 57, I should be able to hold a job and do household chores. I’ve spent a small fortune on trying other avenues that lead no where.

Maureen M.

I was discharged from 2 different practices in just 4 years due to them no longer prescribing opioids.
I am currently blessed to be seeing a Pain doc who keeps me on ‘minimal’ opioid dosages but as a result I am no longer medicated/treated properly nor accordingly to my constant pain levels and suffer more greatly.
I will do this survey as well. Thank you

James

Yes. I am getting very familiar with a well worded and popular phrase, “There is nothing more we can do for you, and we do not know of anyone else we can refer you to.”

Well worded to avoid legal issues. I’ve heard this from two neurologists, the original surgical DO, and two pain physicians, even after making it clear that as an engineer, I do not want narcotics unless it is the only option.

Nerves damaged in Afghanistan due to a full grade-3 tear of the soleus muscle, 2010. 3 surgeries fully cutting through the gastrocnemius to get to the soleus to relieve and resect scar tissue, as well as TWO fascitomies – again dur to scar tissue proliferation.

I have endured at least 19 months of being a “Lab rat” for every drug available, anti-seizure, SSRI’s, SNRI’s, and even Ketamine at a personal cost of $3,000 to stop the knife-stab I get with every other step.

That was damaging, as I had a very bad reaction to an SNRI after 6 months of it working great. Almost was hospitalizing in nature, now I have bad reactions from both SNRI’s and SSRI’s, so we burned that bridge due to this stupid game.

Low dose NORCO worked well until this charade began. i was a very compliant patient and used it only in the evenings, when needed, and responsibly (No alchohol or other meds).

So yes. The famous phrase is “There is nothing more we can do for you, and we don’t know anyone else who can.”

Welcome to Skid Row of Chronic Pain. You’re on your own. Note the climbing suicide rate of chronic pain sufferers. Thanks for following that oath.

S Gray

I live with pain every day. Medical establishment as abandoned me.

Patricia Haas

I have never had a pain doctor just a primary care doctor. Kaiser sends you to classes and no one on one treatment.

annette

Just a note my pain dr. hasn’t stopped trying to give me opioids…even though I think I am I need of them I will not get on them in fear I will become depend on them and then not be able to get them for all the reasons above that you have mentioned I have been trying to get medical pot and even that is hard to find a dr. to prescribe so I am just suffering because I know I will not be able to get the rx needed going foward

IMO.. the DEA could care less about the handful of deaths from a practice.. if one notices the DEA raids practices where the practitioners appear to have a sizeable net worth. I have seen help wanted ads from the DEA for a “financial analysis’ for pre-seizure resources evaluation. Could that mean that the $$ that they can potentially confiscate using civil asset confiscate rule is a higher priority. Prescribers who chose to transfer all of their assets to a irrevocable trust – before the vultures start circling – and basically make themselves a lot less desirable target for the DEA

Dragonfly

I been deserted by pain clinic and the VA.