Pills for Breakfast: Why I Need Hydrocodone

Pills for Breakfast: Why I Need Hydrocodone

Hello! My name is Crystal Lindell and I’m on opioids — specifically, morphine and hydrocodone.

I need these medications on a daily basis to help manage my chronic pain. And by “chronic pain” I mean daily pain so horrible that I literally want to kill myself. Daily pain that feels like someone literally took a razor blade to my rib bone, whacked me with a golf club and then dropped a car on my chest.

The morphine is time-released, so I take that every eight hours, every day, all day. But it isn’t always enough to control my chronic pain, so sometimes I also have to take hydrocodone pills to help ease something called “breakthrough” pain.

pillsdin300Recently, the U.S. Drug Enforcement Agency decided that the hydrocodone I take should be reclassified to a Schedule II drug. That means I can’t get a prescription for the drug from a nurse, or a nurse practitioner. I can only get it from a doctor. It also means that I have to have an actual hand-written prescription to give to the pharmacy — no more calling or faxing it in from the doctor.

A lot of people in chronic pain, myself included, are really upset about this. But, if you’re not enduring agonizing pain on a daily basis, I can understand why you might not get what all the fuss is about.

So, below are some common questions those who don’t have chronic pain usually ask about hydrocodone, as well as some answers. Hopefully this helps to clear some things up about the whole situation.

  1. Why are you so upset about this?

I’m upset for few reasons. Personally, this means I now have to get my monthly hydrocodone prescription in the mail, which throws a bunch of new factors into the situation. (More on that later).

Also, those who live in rural areas and only have access to a nurse practitionerwill no longer be able to get prescription for the drug, regardless of how much they may need it.

But more generally, it’s also one more way that hydrocodone, and opioids in general, are being demonized by our society. For me, hydrocodone has been a life saver in the purest senses of the word.

It has helped me to keep my job, take regular showers, and even travel. Without it, I can assure you that I would be spending every day of my life in bed or on the couch. I see the medication as a miracle drug.

But as the DEA continues its fight against opioids in all forms, it not only gives the drug a bad name, it also gives its users a bad name — whether they’re a legitimate user like me, who only takes the recommended dose each day, or a drug addict or dealer who sells the pills for profit.

It also opens up the door for others to treat hydrocodone users as they would an addict or a dealer. Pharmacists already give opioid users the third-degree when they try to fill a prescription for morphine or other similar drugs. And some will even outright refuse to fill it, regardless of how much pain the patient is in.

The new regulations also will likely make doctors that much more gun shy about prescribing hydrocodone, which for many patients is the only path to any sort of relief. Those in pain shouldn’t be forced to endure a fight with the medical community to get the relief they need — the daily battle they’re having with their body is tiring enough.

  1. If you take hydrocodone every day, aren’t you an addict?

No, I’m not. There’s a big difference between “addiction” and “dependence.” My body does have a dependence on the drug after being on it so long, and yes, that would make it hard to go off of it cold turkey.

However, if I was addicted, I would take it for the “high” it can give rather than the pain relief, and thus I’d likely take larger and larger doses each day, and run out sooner and sooner each month.

I personally stick to my recommended dose not only because I’m not “addicted,” but also because I need the pills on a daily basis to help me function. If I took the whole bottle on the first day, I’d spend the rest of the month sinking into the couch in pain and despair.

  1. If you’re on an opioid like hydrocodone, shouldn’t you be seeing your doctor every month anyway? Can’t you just get the prescription then?

Actually, no, I don’t need to see my doctor every month. I have an ongoing chronic illness that has no foreseeable end.

I also have an ongoing relationship with my doctor. We often communicate via email and phone calls between visits, but unless there are any major changes in my health status, I don’t need to see him every 30 days.

Also, my condition is so rare that I have to be treated at a university hospital. However, I live in a small town, so the closest one is about two hours away. Driving such a long distance every 30 days wouldn’t just be impractical — it would be torture for my body.

And of course, there are many, many other patients out there in similar situations who are enduring long-term pain. Just like me, they need a monthly hydrocodone prescription, but they don’t need to see their doctor every single month.

  1. Well is it really that big of a deal to have the prescription mailed to your house?

Yes, it is, for a few reasons. One, the mail doesn’t always get here when it should, meaning I could go into opioid withdrawal if there was a delay.

Two, my morphine prescription also has to be mailed to my house each month. In the past, if there were any delays caused by the mail and my morphine prescription didn’t get here on time, my doctor was able to phone in a hydrocodone prescription so I wouldn’t go into withdrawal. Now, I will no longer have that option.

If you have never gone through cold-turkey opioid withdrawal, the best way I can explain is this: It’s feels like you are literally having years of your life sucked out of the very bones of your body.

  1. Can’t you just take a different medication? Why do you have to be on hydrocodone?

I’ve tried a bunch of other medications and none of them are as effective as hydrocodone at relieving the sudden bouts of strong pain I experience throughout the day.

But really, that doesn’t matter. All you need to know is that I’ve discussed it with my doctor, and he and I have agreed that it is the most effective medication with the fewest side effects for my health situation.

Think about it, if you were sick, isn’t that all you’d want to matter?

  1. Aren’t thousands of people dying from opioid overdoses each year? Won’t this new law help with that?

You are right. A lot of people have died from opioid overdoses. Starting with 4,030 deaths in 1999, the number increased to 16,651 in 2010, according to the Centers for Disease Control.

I do feel genuine compassion for those who have died from drug overdoses as well as their families. I have had many personal experiences with loved ones dealing with drug addiction and I wouldn’t wish that on anyone.

But, I also feel genuine compassion for the 100 million Americans living each day with chronic pain.

Right now, the pendulum has swung really far in one direction, and the needs of those suffering with chronic, as well as short-term, pain are being ignored at the expense of drug addicts.

Also, it should be noted that suicide rates among those with chronic pain are significantly higher than the general population.

In fact, “White men, white women, and white worker compensation men with chronic pain in the age range of 35-64 years are twice, three, and three times as likely, respectively, as their counterparts in the general population to die by suicide,” according to a study in the U.S. National Library of Medicine.

That’s a pretty dramatic difference. But I can tell you from personal experience that the right medication can go a long way in giving someone the will to survive.

  1. If pain patients really fell this way, why didn’t they voice their side of the story to the DEA?

Aside from the fact that it’s incredibly difficult to take on the DEA when you’re healthy, much less when you’re enduring chronic pain, it’s also been hard to get them to understand why anyone would want more access to a drug instead of less.

The anti-opioid community has done a great job getting their message out into the world — but just because they’re the loudest, doesn’t mean they’re right. Those of us suffering from daily, treacherous chronic pain may be quieter (we are dealing with daily pain after all), but we have a point to make too.

We just believe that if there are legal medications out there that can make a huge difference in our quality of life, that we should have access to them. And that access should only be dependent on a conversation with our doctor or nurse practitioner. No more, no less.

Crystal Lindell

Crystal Lindell

Crystal Lindell is journalist who lives in Byron, Illinois. She loves Taco Bell, watching “Burn Notice” episodes on Netflix and Snicker’s Bites. She has had pain in her right ribs since February 2013. It is currently undiagnosed.

Crystal writes about it on her blog, The Only Certainty is Bad Grammar.

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 represents 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.

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Don

Yet another case of the government trying to practice medicine leaving those of us with chronic pain to feel like second class citizens by their own doctors.

Didn’t seem to apply to former presidents or others in DoD

Kay

The DEA needs to think about what this new law is going to do to people like me in chronic pain who need meds. I was under a pain management doctor for 5 yrs until he closed up and moved 3 hrs away. My primary Doctor will not write a hard copy he said just to quit cold turkey. I have Fibromyalgia, spinal stenosis, arthritis and plantar fasciitis. The drug addicts will continue to get their meds while the ones like me will not. My doc told me to find another doc to give me pain meds but he will continue to give me a beta blocker and aciphex. So what am I supposed to do? I will not be able to walk after I ween myself off the hydrocodone which I take 3 a day 7.5. How can a doctor do this? For 5 yrs I never tested dirty on the drug tests I had every 3 months. My doc chooses to not give any of his patients any pain meds what so ever

Brian

I’ve had chronic pain from back injuries, neck, mid back and low back, since 2000 and intermittent since about 1980. I take Dilaudid but previously too slow release morphine and Demerol for breakthrough. I’m in Canada and I’ve always had to go to the doctor in person for a hand written script that lasts two months. And the pharmacy will only allow a month’s worth at a time. AND if I have a serious breakthrough and use a few extra pills, when I run out I have to go to the doctor because the pharmacy will not give me the “second half” ahead of the timing of the script. But it’s better than not getting some level of care as happens to some folks in the US.

BL

Terry Seale, it is against the law to give a prescription that is undated. It also is not medically wise. A dr can write on a second and third prescription the earliest date a pharmacy can fill a rx. States govern how long you have to get a Schedule II rx filled.

Terry Seale

“The government IS the problem.”

Kvetching is useless. You need pragmatic work-arounds. If your doctor agrees that you need it and understands your difficulty with the post office, he can give you one or two paper prescriptions undated for you to hold in case of emergency. Depending on your household situation, you may need to keep the script in a safe deposit box, but it is a contingency plan.

Good luck.

MaryAnn

Thank You for summing up how many of us feel. We all have different conditions but we have one common problem– PAIN. I tell my husband if I were a DOG they would humanely put me to sleep. A Human Being with a Proven Pain Condition Should be treated for Pain. I had a physician who treated me for pain for years. He moved to another state from Ohio and since then I have been in pain. My story is quite long , with Hydrocodone 10/650 I was able to care for my children, work a full-time job and care for my home and saw him every three months. No Problem. Now I am disabled, broken, depressed, in fear of losing my home and need help. I am currently under the care of a pain management doctor, injections failed and he gives me Norco 5, I was in pool therapy and stated my pain was not managed. The PT said to tell my doctor my pain was not managed, so this last week I did and he said “You are taking enough”. So I am 53 and if it were not for my faith would give up for good. I could write a book. Central Ohio is Terrible for the Suffering. My daughters want me to use Marijuana but it is illegal. Hydrocodone takes away my pain , I know what works for my pain, please allow me to enjoy life, not being able to do the things I love is Cruel. I might as well be in Prison. If you ever need a witness I will bring 27 years worth of medical records and recent MRIs to prove I need more than Norco 5. But at least it is something. Anything. I am slowly killing myself eating Excedrin all day. If I am not entitled to pain relief then I wish they would allow us to be put down like our pets, out of compassion. Sorry for the rant.

They’re doing this in part based on CDC death rates for opioid ODs. Here’s why the DEA is wrong: http://www.dontpunishpain.com/journal/2014/6/30/a-good-article-that-misses-the-point

Sharon McAdams

Like Julie said, has anyone every mentioned Chostochronditis to you? I have dealt with it for years. Starts under my right rib and radiates around to my back. I have COPD and Asthma and when they are acting up the pain is unbelievable on that right side. Nothing helps it for me. Only thing that soothes it a little is if my mom rubs it or if I put the heating pad on which I do most nights. I also have severe migraines, fibro, and am waiting for 2 knee replacements. Just for starters. Thanks for speaking up. I go to my Dr. Every month for my scripts. Such a pain but that’s how it has to be. I am currently at out summer home in another state and I have to see a Dr. Here as well. I brought my prescription bottles and my computer printout from the pharmacy and my Drs office so they could see I wasn’t lying. Weather the checked with my Dr. at home I don’t know.

Patient Patient

I’ve suffered debilitating migraines since my early 20s (I’m nearly 40, now), & after trying Maxalt, Imitrex, & a host of other abortives & preventative medications that had no effect, very little effect, or caused side-effects almost worse than the migraines, I’ve found almost complete relief with a prescription cocktail of Fioricet, Norco (10mg), & Marinol (5mg).

Perhaps most surprising to many people & these researchers is that in the 14+ years I’ve been taking these meds, my dosage of each has not increased over time nor have the migraines become more severe or frequent. In fact, I take less of each now than I did 5 years ago despite taking this cocktail 6-15 times per month.

With this regimen, I’ve been able to earn three graduate degrees (each with a 4.0 GPA), multiple professional certifications, write a textbook, & work full-time as a well-respected professional. But most importantly, since I’ve found this highly effective combination of meds, I’ve escaped the fate of my father (who committed suicide largely because of his migraines), my grandmother (who was disabled by the time she was 30 because of her migraines), & my great-grandfather (who would often fall unconscious due to his severe migraines), & have been able to raise a beautiful, intelligent daughter with my supportive, wonderful wife.

To think that of this all might someday be taken away from me because of some well-meaning broad-brush, one-size-fits-all hysteria is horrifying to say the least.

BL

Dwayne DeLozier, did PCOM say why they were discontinuing your meds ? Are they doing this with all their patients ? You may be able to find a pain management dr who will continue to give you the same meds at the same dosage, but there are no guarantees. Most drs start new patients out on the mildest forms of meds and go from there. If you have had any problems with your drs at PCOM, a new dr will know about it because they get previous medical records. You may want to get a copy of your medical records from PCOM so you can be sure of what the drs have written.

hello my name is Duane DeLozier I’m 53 years old I live in Manayunk Pennsylvania I be going to PCOM for the past three and a half years I have end plate sclerosis of the spine degenerative joint disease spurring of the spine as wellI also have vertebrae problems in my desk I’ve been taking percocets between 10 milligrams tablets one every 5 hours without this medicationI would not be able to walk or do daily activities and now PCOM decided to cut me off of my medication as of February the first of 2015 trying to find a new doctor and trying to find pain management to continue the medication that I need for my chronic pain is it possible I never did drugs in my life I never did heroinI would possibly like to get some feedback

Dr. P

Thank you for writing this, I have been spending so much time since my dr switched me to oxycodone from hydrocodone (due to concern about acetaminophen) which she used to be able to phone in. I’ve been so frustrated with the monthly stress of picking up prescription and dealing with pharmacists that I was thinking of going back to hydro but now that is also a hassle.

I know from my experiences that people have no idea what pain patients life is like, they just don’t understand. I probably was the same before the pain. But as you note our lives are hard enough without battling more than the pain.

When I first got pain I refused opiates for two years. When I finally got over my prejudice these drugs helped me regain control of my life. I finished my phd and worked at a prestigious university for a few years before being hired as a professor at one of the top schools in my field where I teach and run a science lab. It’s hard even with pain meds, i don’t think I would be here without them. I am hardly the deadbeat addict loser people seem to think all pain medicine users are. No, we are all ages, sizes, colors and we just want to have a bit less misery in our lives.

Thank you for writing this,

Brenda Alice
Kristi

Thank you, thank you, thank you for having the courage along with willing to advocate for the millions of people living with chronic pain! I commend the honesty and sinsarity (sp?)of your words. I have lived with chronic pain due to multiple issues for 10 years now. I filled for disability at the age of 31 due to no longer being able to perform my RN duties. I would never wish this amount of pain on anyone. Yes, we all know too well about the addicts but nobody had even thought to ask us what or how we feel. And thank you for pointing out that there is a difference between addiction and dependence. For people who don’t care to do their research it is a HUGE difference! And now that we are starting to Madge a little noise we are being treated like addicts. We are simply standing up fit what we deserve! My chronic pain stays around a 5-6 on the pain scale with my Oxycontin. Anybody who does not have chronic pain would be visiting every ER crying to get some pain relief for those numbers. Anything over a 6 on “our” pain scale is utterly unbearable and so we require the prn narcotic for breakthrough pain. Conditions like Fibromyalgia and Chronic Fatigue Syndrome are affecting more and more people every year. Every year we get more narcotic regulations. This needs to stop! I’m willing to be an advocate for everyone and stand in front of Congress, FDA etc to fight for our rights. I certainly didn’t ask to be stricken with multiple conditions. I would have been glad to be an RN until retirement, but it wasn’t in the cards dealt to me.

Jerry

BL is exactly right. Although I have not had a pain doctor do this. I have another Schedule II medication prescribed this way for about 10 years.

Brenda Alice

I am sorry that you are sick and in pain. Most don’t realize that the pain medication doesn’t take all the pain away. Here in heartless Tennessee I have had to go every 30 days for the last 8 years for my prescriptions. I have tried everything from surgery to tens units. Thank you for speaking up for those that can’t get their medication either from a specialist or the pharmacist that likes to discriminate. I had 6 refuse to fill my prescriptions in one day. The DEA does not care about suffering or quality of life. Chronic pain patients are not the ones committing crime. I have a failed fusion that found both nerve roots compressed and damaged. Constant sciatica and pheriphral neuropathy. I have constant gastritis with frequent ulcers. I have autonomic nervous system failure. I can walk or stand for just a few minutes with the medication. I do wonder if the statistics say what overdoses were from people prescribed the medication or the ones that came from the street corner? I pray that the DEA and politicians come to their senses and go for the illegal dealers as they should rather than attacking the pain patients, pain specialists and force pharmacies to fill legitimate prescriptions without the rude unnecessary comments that all in the store can hear. I also hope that the E.R. will be forced to treat us as patients and humans with rights. As a retired disabled R.N. this would have never been allowed 20 years ago. Thank you for your article and sharing. Blessings.

BL

Crystal Lindell, maybe if you explain to your dr how far you must drive, they will write your rxs for two or three months. Federal Law states that the dr can write up to three 30 day rxs at the same office visit. They do not have to do this, but it is an option. You must see your dr at least once every 90 days if you are prescribed a Schedule II, although most drs require their patients to come in every 30 days.

Jerry

Mrs. Sandra L. Weidner – I too have also been on Morphine Sulfate ER, Fentanyl and Exalgo. I only saw my doctor every 90 days, but did have to physically go to the office and see a nurse for a pill count and receive my prescription with a “wet” signature. These medications are all Schedule II which require a new original prescription every 30 days.

Hydrocodone, until now, was a Schedule III medication, meaning that a patient could receive a prescription (depending on the state) for 90 days which was usually a 30 day supply with 2 refills. Hydrocodone previously being a Schedule III medication could have the prescription “called in” or faxed by a physician. Such as on a weekend or after hours. The prescription therefore did not require a “wet” signature.

Just FYI!!

Mrs Sandra L Weidner

Forgot to add that if you are on morphine Sulfate ER, you have to be seen monthly by the Dr, so why can’t they write the script for the break through at the same time????
I am 6 months post op, additional spinal fusion of L 2 added on to my fusion of L 3 to S! and fusion of the Left SI joint. I have fibromyalgia, severe osteoarthritis of all major joints, and degenerative joint disease of my hips. So I know what pain is, but I am now on tramadol as needed and if it doesn’t work have oxycodone instant release to use. So I do know what pain is, but I work towards getting it under control and keeping it there.

Mrs Sandra L Weidner

I am so curious? Since when was hydrocodone aka vicoden and Lortab been able to be prescribed by anyone other than a DR and be faxed to the pharmacy??????? A nurse practitioner or Physician Assistance work under the supervision of a Dr. and DO not have the legal authority to write and sign a prescription for a narcotic medication.

Julie

This is good. It is nice to have people, ecspecially writers and doctors, who have and understand chronic pain. I assume they have looked at diagnosing you with costochondritis? I have that – can feel like your having a heart attack and your not. I also have DJD (or DDD) in my whole spine with six herniations and retrolisthesis. I can not tolerate morphine (causes weird hallucinations) or Hydrocodone – so I was put on Tramadol BUT they recently changed it’s class making it harder to get – it is so frustrating to be in pain and then to be given a hard time when trying to treat it the way you and your doctor have seen best. Good luck to you.

Justin DeArmond

im in the same boat as you are. I have 3 ruptured and removed discs in my lower back and a fourth one that is bulging 4-5 cm (cant wait for that one to rupture too!!) I was 23 at the time of my first surgery (2 discs removed S5 and L1 I think)and 28 at the time of my last one. there are no words to describe how much it hurts some days. the fucked up part is that some days its far worse than others so I don’t need pain meds all day every day…try explaining that to a doctor, “hey doc I need a lot of painkillers…but not every day” see how far you get, most will show you the door. here in Kansas you have to take a piss test to get your meds, and if you use something like say cannabis, then you don’t get your meds. I would use cannabis alone as its much more effective but in Kansas its illegal and its expensive and you never know of the quality. All I hear from doctors is painkillers are dangerous and we don’t like to prescribe them…yeah dangerous…like asprin or cigarettes, or alcohol…I can buy a thousand things at Wal-Mart that kill me but I cannot have medicine that can help me. what a ****ed up society we live in. Colorado here I come!

denise

Crystal, everything and I mean EVERYTHING you said is so true !! I have had suffer pain for over 12 ys. I have been to every pain tx center in town hoping that someone would do something to help me….they only give meds and injections. I have been takin shot and ablations for 12 yrs!!!! I finally after being asked to come in for a random pill count when I was sicker than death on a corpse..I told them NO i cant….and so they dropped my contract…. now this contract “allowed” me to have random pill checks, monthly pill counts at appts…monthly UA’s and of course monthly appts. my insurances have spent litterally over a million dollars for all the crap they have done to me and I still am nearly bed ridden with debilatating pain….i cant work, i have no life, im depressed and i get NO pain meds because of addicts….yes like u i am DEPENDENT on the meds…..i dont have a pill issue i have a pain issue and im tired of being treated like a second class citizen. I daily pray to just die….so i can be out of pain..so i totally can relate to everything you said…thanks for letting me know im not alone!

I so hope you find relief from the horrible pain. I have been telling the story of my mother’s journey through her chronic pain and chronic disease.

You are absolutely right…….it’s hard enough to take things like this on when you are healthy and feeling great, but when you are in extreme pain (especially with no answers) it’s impossible.

As a caregiver to my mother I can not tell you how many times I just wanted to smack people who didn’t understand and didn’t care to try!

May God be with you!

homesbythecase.blogspot.com I am my mother’s keeper

I too, can relate to the pain written about in this article.Mine is basically nerve pain, caused by a disc nudging against my spinal column,and therefore causing severe nerve pain—in spinal column area—up and down to bottom of foot. Big toe is now numb.At present, surviving on pain killers (opiates) and nerve pain blockers in my hip area.Couldn’t walk before I received the nerve pain blockers I travel 200 miles(one way)every 3 weeks for the injections…No fun,I can tell you.God bless as you wage your own private war .I’m on Hydromorph contin,Northyline(not spelled correctly, plus Ex Str.Tylenol between the 8 hour periods for Hydromorph…GREAT FUN NOT!!!!!Hope you get better help and soon.Marie

Kurt W.G. Matthies

Crystal,

Your final point reminds me of an old poem attribute to pastor Martin Niemöller (1892–1984) in response to the Nazi’s round ups of the 1930s. It’s known as “First They Came”

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

Myron Shank, M.D., Ph.D.

I agree with everything you wrote.