A Pained Life: The Pill Dilemma

A Pained Life: The Pill Dilemma

Only twice in my 30-plus years of living with chronic pain have I had a problem getting my narcotic medication.

The first time a relative lied to a doctor.

I was visiting from out-of-state.  The pain was bad.  I went to take a codeine pill and realized I had not brought enough with me.

Checking The Label“What if the pain gets out of control?” I cried. “What am I going to do?”

The relative called the doctor who was covering for my regular one.

“She’s ranting and raving about not having her drugs,” she told him.

He believed her.  And he refused to write a new prescription.  He also wrote in my chart: “Her behavior indicates she may be abusing her drugs.”

My regular doctor told me about the note.  He added a larger one: “She has been taking this drug for years.  She has never had a problem with it.”

The second episode again involved a doctor other than the one I usually saw.

I came in every 6 months to get my prescriptions, for another medication and for codeine.

“How often do you take the codeine?” he asked.

Not thinking I needed to be cautious I said, “About 3 pills a day.”

“I see your doctor gives you 120.  I’m only giving you 90.”

“But three is an average.  Some days I need more.”

“No. You said three.”

He didn’t care that it wasn’t enough.  He didn’t notice 90 a month did not account for months with 31 days.

Again, my regular doctor took care of it.

“I know you need 120 a month. Just make sure you only see me from now on,” he said.

It was astounding to me that after decades of taking this drug without any problem, I was questioned, disbelieved, and treated as a drug seeker rather than a patient with chronic pain.

I understand narcotics have a way of finding their way onto the streets and into the pockets of bad guys.  I get that there are unscrupulous doctors and so-called “clinics” in it only for the money.  But don’t presume me guilty.  I should not feel humiliated because I asked for what I needed.

A friend asked me, “What happens to those in chronic pain if they can’t get the meds they need?”

I had no answer.

I have not heard of cancer patients being deprived of their pain pills.  Diabetics are not told, “You have taken too much insulin this month so no more for you.”

Maybe the issue goes back, not only to the invisibility of pain, but to the subjectivity and concept of pain.  Maybe the bias is innate in our health care system.

According to a recent study in The Journal of Pain, the annual cost of chronic pain is as high as $635 billion a year, which is more than the annual cost of cancer, heart disease and HIV/AIDS combined.

But where does the money go? Just one percent of research funding from the National Institutes of Health (NIH) is dedicated to pain research.  Last year, the NIH spent $396 million on pain research, but $5.6 billion on cancer research.

It is time for the government to realize it can’t have it both ways; with the DEA working to decrease the ability of doctors to give opioid medications to chronic pain patients, while funding for pain research and finding alternatives to opioids remains miniscule compared to other disorders.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

For more information, read our User Agreement and Terms of Use.

Authored by: Carol Levy, Columnist

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Nancy

I had back surgery and during my recovery my physician said I could travel by plane to Dallas after a couple of weeks to stay with my son and his wife as I was alone and they wanted to take care of me. My son keep saying stay a few more days so I pushed it as long as I could as I was getting low on my pain pills. So on 9/11 at 8:30 in the morning I left from Dallas to go home straight flight to Oakland, California. Well that was the morning of the terrible attack on our country and we were stopped in Phoenix as all planes were grounded and I had maybe 10 pills left. They promised me I could get a plane the next day and made my reservations. Well the planes were grounded for 4 days. Yes, I hurt but I was so lucky because my daughter in law’s parents lived in Phoenix and picked me up from the airport and I had a lovely home to stay in. All things considered I felt lucky to be alive as they were planning more attacks on the planes and I was in the air during all of this. My DIL’s grandmother had some Zanex and gave me some and I just took a pill when I absolutely had to and then took the Zanex and Motrin. I did not complain because it was an inconvenience for me compared to all the other people. I finally made it home 4 days later I was the first plane that left we were suppose to leave at 9:30 am but left at 10:00 pm. When I got to San Francisco because Oakland was still closed down it was the most eeriest feeling being the only plane in the airport. It was dark and midnight and their were military there as well as SF police officers. I was never so happy to get home in my entire life. Everyone had their American Flags hanging up in front of their home or on the back of their car. The Country had come together we were not black, white, Mexican, Catholic, Jewish …..we were all Americans I had never felt that solidarity before. I learned a lot that day how we never can take life for granted and no matter how bad we feel, their are so many people in our world suffering unimaginable suffering and pain. I did have a refil on my meds but they will not refil them out of state. But I did not complain as it would of done no good and I would of felt selfish when so many people were hurting in ways I could never imagine.

Thanks for exposing the hardships pain patients face due to doctors who do not understand what we deal with, and onerous regulations imposed to solve a problem that isn’t ours. We need greater understanding all around. Very few people who take pain medications are addicted. Pain medication allows us to function. It’s not a luxury or a high. As Carol said, we should not be humiliated or presumed guilty.

rebecca

Dear Dr Greer; I have to say that I was told by another Chiropractor do not let another chiropractor touch me. I was armed with my x-rays of my spine, n neck. He told me if I was alined or adjusted in any way that it would do permanent damage to my spine. I went for a second opinion and was told again. It was during the time in Fl. was being followed by the head of Anes., and a neuro dr. I have however; never heard of a Neuromyologist. So I will look into this, thank you.

rebecca leahy

I am very lucky after reading some replies; I have no problem getting my pain meds. the problem I have is I take Oxycontin and oxycodone, and have been on them for nine to ten years. I have found that they don’t work anymore and it scares me. I have several handicaps including nerve damage to the spine, down the legs and am in need of both knees being replaced,a long with my big toe, the joint is deteriorated from arthritis. I am unable or I should say barely can walk. When I do the pain is off the chart. My blood pressure is high all the time and that is on blood pressure meds. I recently was told that being on any pain meds for any period of time takes ten years off your life. So I am seeking to have a pain pump put in and am researching what is best. My fear is they mess with your spinal canal as they insert this into the back. The idea is the fentyl will go straight to my brain immediately, giving instant relief; instead of the pills that take an hour; I welcome some relief. I have been living or not living just sitting around to avoid pain. I read the comment about Walgreens, that isn’t true; the problem is they are only filling scripts to patients that has there Dr. faxing back the reason you are on the meds. even thought its again the HIPPA act, that is the only way they will fill your script. So if anyone has the pump and can give me advice, please I welcome it. I have not scheduled a date yet. Good luck to all, I also wanted to add I came to San Diego from FL three years ago and was lucky to find a pain med Dr immediately, however, the other dr’s I need to see, not so lucky.

Wendy

Apparently Dr. Greer did not get the part about having tried all the available options, including the so-called “alternative” options, for pain control and return to wellness.
In my case, and I think in the author’s case as well, it is nerve generated pain. No muscles involved so far as the multitude of specialist and hands on therapists can tell. I have tried everything there is to try. The medical treatments are all that are left.
The point of the article is the DEA getting between the Doctors and the patients, as well as between Doctors and Pharmacists and so on.
IMO It is time to make Washington aware — we are a vulnerable population for numerous reasons and also generally not well. So perhaps a letter writing campaign?

Dr. Charles E. Greer, D.N.

To all you chronic pain sufferers out there. There is no reason that you should continue to suffer. Pain Meds will help for a little while, but when the effects of the medication wears off, you are back where you started. What about the underlying cause of your problem? Are you receiving a hands-on evaluation of your complaints? Could there possibly be a form of treatment that you are totally unaware of? In 1907, Dr. Oakley Smith, A Chiropractor, decided that he needed a more effective form of treatment. He went to Europe, where he studied the ancient forms of manipulation. Upon his return, He investigated the effects of connective tissue and its interference to nerve pathways. This led Dr. Smith to His creation of Naprapathy. Naprapathy is the disciple involving the observation, evaluation and hands-on treatment of acute and chronic pain syndromes. This method has been proven totally successful in the correction of pain and disability involving the Spine, Joints and its surrounding soft tissue structures. I dare you to challenge its effectiveness. The Doctor of Naprapathy, Called a Naprapath or Neuromyologist is a licensed, Board Certified Doctor. Find one Today.
Dr. Charles E. Greer, D.N., Neuromyologist/Naprapath

denise smith

I too am a chronic pain patient. I have been to 3 different pain management clinics. One gave me so much i could not function, one accused me of selling them not using them when i asked him why all the procedures done on me then (shots, stimulator implant, hip implant, knee surgery, etc…) he didnt like that so i went to the last place and so far they treat me like an addict i get UAs all the time and i pass them. I asked my FP to follow me and give me my meds as i was tired of going to a pain clinic where im treated like a child…he said he was not comfortable doing that. however my nieghbor uses the same doctor and he does all her pain meds and she goes in and tells him all the time what she needs..she is on oxycodone and fentanal patches and she abuses both of them. I am so sick of the double standards and the crap involved. Hopefully i will die soon and wont have to worry no more im am tired of PAIN!!!

I have to see a pain mg.dr.every month.my family dr.will not help me.for right now I am lucky.my dr.is goes by all the laws but,has no problem helping me with my pain.I do not know what will happen if he should leave our area.we all need to stand up and be heard.I know all the concern the gov.has but,they need to put us in a group of our own.If we have been honest and used our meds right them it should be easy for us to get them.If we abuse them then we should not be allowed to get them!A very large group of chronic pain sufferers should be heard in Washington.they do not have a clue what we are going through.they will never get the drugs off the streets.as long as there is a demand from abusers there will always be a suppler someplace.that hurts us.How do we,as a huge group of people,get someone in Washington to listen.They need to tell our drs.to allow us our meds.They also need to remove the drs.that ru these pain mills.up for ideas??who will listen to us?this tells me to use a valid e-mail.I am doing so!

Gretchen

I’m shocked by the comments about doctors letting people suffer and refusing to give them meds. I have problems sometimes too, but at least I haven’t had to deal with the hard-hearted cowardly doctors who are so worried about being sued that they won’t properly treat their patients. Is there any kind of organization that stands up for patients in pain? Does anyone know?

jill

I so upset about all this I went to the ER and the ER Dr says I am not treating you bc you had a perscribtion filled a few weeks ago for pain meds I said I am not asking you to write me a scipt I am in pain and he refused to treat me and I left in pain

Kathy M.

I can’t even get pain meds for neuropathy. I get statements like you might commit suicide and today a new one. If I give you pain meds then you might sue us.
The first is all due to a former doctor telling people I had a depressive disorder because my Brother attacked me.
I do not have a depressive disorder of any kind and never have. In fact I have never been evaluated for any such thing. She also said I had asthma when I had COPD and she said I had osteoporosis when I had osteopinea. There are other mistakes as well. But the first is the worst. I will never call the police again when someone attacks me as the victim just gets the shaft. Her error has taken a toll on me and ruined me and any relation I have with a doctor. If I do get any painkillers it is enough for one or two days, sometimes I will get enough for 3 to 4 days, but that is all. I don’t get doctors and pharmacists. I am not the kind that sues since I know the chances of winning are about nil. Took medical paralegal law, so am well aware of the chances. I do realize there are people that abuse drugs but I know that we are not like that. We all have a reason to use pain medications. I wish the DEA could understand that. I do realize that some people do become addicted but most of us who have life long chronic pain do not. We need to make our doctors back us up and not become pawns of the FDA and DEA but support the needs of their patients instead.

Wendy

While as yet I have not had problems with my prescription for an opiate, I clearly see the day coming as the local health community has “drunk the Kool-Aid” and believes in the crisis of opiate addiction. (Personally I am a skeptic, I am with Mark Twain when it comes to statistics and know they can be too easily manipulated.)
No-one is keen on people dying from abuse of prescription drugs or other untoward causes, however, pinning the abuser label on legitimate pain patients is unhelpful to say the least.
Ms. Levy hits the nail on the head when she calls on the US Govt to spend more on research to find solutions to pain. What is allocated now is a pittance, especially if it were compared to the DEA’s budget. Hmmm. Time for a shift in priorities.

skepticalgirl

Welcome to the War on Drugs. It influences everyone, especially physicians.

A 63 year old friend, who has the same disease I have, wanted to change doctors because her doctor moved away. At the end of the visit, she asked for a renewal of the pain medication she had been taking for over five years.

The doctor told her she would not give her a prescription unless she submitted to a urine test, and signed an affadavit saying she was not a drug addict. The doctor told her that the drug test would go into her file, and be available to all her doctors.

My friend was stunned and went back to her old doctor.

Years ago, after the birth of my daughter, I went to Manhattan to see my Neurologist. I too suffer from fibro, herniated discs, endometriosis, etc. The neurologist had an office in Manhattan and Long Island. The office in Manhattan was his own and he was an employee of the Long Island office. He prescribed Vicodin HP. I took it to Duane Reade Pharmacy around the corner. The naturally called to check the script (even though I always filled it there), by mistake, they called the Long Island Office. The businessman who owned the medical practice was a drunk and angry that I no longer go to that office. He told the pharmacist that the script was stolen and told them to call the police. The pharmacist was familiar with me, so she said she is not filling it and I should “get out of here”. I asked why. She said she was instructed to call the police. I told her call them and I’ll wait here. While ur at it, call the doc at his office number right around the corner. She did and she found out what was going on. If I hadn’t stood my ground, the script would never have been filled. I’d have to wait another three days to see doc again and had two babies to care for. Sometimes you have to stick up for yourself. It’s only getting harder now. I haven’t had a problem yet, however, I know there will come a day. It’s just a matter of time. I don’t know why we can’t march in Washington. Can’t we and the good docs and pharmacists get together to protest the prejudices held against those of us who suffer so and need these medications in order to have any quality of life??? Is there a certain number of suicides that have to be committed in order to get their attention. They are killing us. (sorry it was so long)

Nancy

I have heard of cancer patients not getting their meds. My GYN also does Hospice for free for any of his patients or their family members. The patient worked at Safeway grocery store for almost 40 years but in a different town and the pharmacy I believe is seperate. He had oral cancer and had half his mouth, nose and the side of his face removed. He was in horrific pain. Scott the doctor came everyday and saw him and when it was at the end he was on fentanyl patches and liquid morphine. So his daughter who was pregnant at the time took his prescription to Safeway because that is where his insurance said to go. Well I don’t know this pharmacist must have been new to the area because she looked at it and said I am not going to fill this, Scott Wada is a GYN he has no business writing these narcotics it is out of his scope, her dad was at home in so much pain and she broke down and cried. She explained that he also does Hospice. She would not give her the meds, well Scott always gives all his patients his cell phone and home phone he is one of the most special and wonderful doctors that you might meet once in a lifetime. Well she called him and he went to Safeway and he was not real kind to the pharmacist and said you should of called your supervisor she would of told you I do Hospice work. You but my pregnant mother in severe stress and you caused a dying man to suffer when he did not need to. Dr. Wada never gets upset like that but when it comes to his patients he will do anything for them. Kent passed away a few days later and thanks to Dr. Wada he had sufficient drugs on board so he wasn’t suffering as much as he would of been without the medicine. But when you are in a hospital bed and can’t get up and in diapers and can barely talk and on a feeding tube which they removed as it caused him nausea. At the end of life when your organs are shutting down you no longer have a desire to eat. I took care of both my parents on Hospice and they were so wonderful to me and my parents. They treat the whole family. But it does happen and this was before the DEA became the Medicine Doctor for all the citizens in America. I think they are doing this to show some value to their job as they have been so unsuccessful in stoping street drugs they decided to go after the weak and helpless.

Janny

In my experience, Dr’s use the DEA as a scapegoat, when they’re uncomfortable prescribing narcotics to a patient. In one instance, my GP said he didn’t have enough knowledge or experience and preferred to refer to Pain Management physician for anything other then short term pain.

Jen

I have an issue every month! The dr makes me come to see her ecery month and every month she has something to say about filling the prescription. I stress out every time I’m going to her! She yelled at me last month. It’s just awful! Do you really think I want to be in daily pain and be in my 40s and have no life thanks to fibromylagia! They have random pee tests and of course I have been clean. Because I’M NOT A DRUG ADDICT! I live with chronic pain.

Anthony Davais

I too am a chronic pain sufferer. My primary care Doctor will NOT prescribe opiate pain relievers to me anymore. He referred me to a Pain Clinic. My Insurance only approved 4 visits so I can be tapered off my pain medications and thats it. I have been taking MS Contin and Norco for 5 years and now I am being told that I will no longer be prescribed them. Instead, I now will be prescribed Cymbalta and Lyrica for my pain. Both required a preauthorization from my insurance company. This is slowly going to happen to all chronic pain patients so be prepared to hear your Doctor say ” I will no longer be prescribing opiate pain medications”. I asked my Doctor what would happen if after the 4 months of tapering down I still needed more time to taper, he said ” You will probably have to go to a METHADONE clinic. I was shocked. I have no idea what people are going to do, the legitiment chronic pain suffers are going to live in pain I guess. I am very concerned. I wish all of you good luck.

Mary

My doctor will no longer give me the prescription. He said that I am now at the end of the line where no treatment has worked and I need to learn to live with the pain. The medicine does help. How does one find a doctor that will write them? Many think you are just looking for drugs for illicit use. I thought there was a patient bill of rights that stated patients are entitled to have the medicine or treatment they need to keep them comfortable and have some quality of life.

Anita Honeycutt

I’m having same problem. My Doctor only gives me 45 a month. It is not enough to Do me. Do not go to Wal-greens they have an 80 million dollar lawsuit against them for refusing to fill pain meds for a chronically I’ll man and several others. You should be able to look that up.

Laura

I cannot even take codeine and the pain is getting worse.

Excellent analysis, thank you for this information which arms all pain patients with a compelling story to tel..