Dear Opioid Debaters

Dear Opioid Debaters

By Charis Hill.

Dear debaters,

I am a 30 year old who inherited a lifelong inflammatory disease called ankylosing spondylitis (AS). AS can cause the spine to fuse together from bone spurs and can affect organs and other joints. AS causes significant pain, to put it lightly.

I am also a former college athlete and marathoner. I know what it means to push through pain as an athlete. But I cannot push through the pain caused by my disease. Pushing through it causes the disease to progress and the pain to increase.

Charis Hill

My main treatment is a drug made from living cells (the same class of drugs that treats many cancers); it helps slow the progression of my disease. Because this treatment is [finally!] working, it also reduces some of the worst symptoms. But AS is a severe disease with no cure, so even with this specialty drug I still have plenty of pain.

And, like millions of chronic pain patients who fight simply to survive daily, I’ve tried everything to control the pain.

I’ve tried massage and acupuncture. They help, but I cannot afford a massage or acupuncture every day, which is how often I would personally need them in order to function. Even if I could, massage and acupuncture are not available in my bedroom in the middle of the night, when I often have the most pain.

I’ve tried the strongest anti-inflammatories there are. I’ve tried muscle relaxants. I’ve tried steroids. I’ve tried topical pain-relief patches.

I’ve tried over the counter remedies and I’ve tried homeopathic remedies.

I’ve tried mindfulness. I’ve tried yoga. I’ve tried diet. I’ve tried a different bed.

I’ve even tried CBD (marijuana) oil.

None of these treatments have been effective in treating my pain, but the low-dose opioid pain pill I tried as a last resort has made a big difference in my life. I take hydrocodone/acetaminophen (Norco) when my pain is the worst it can be and I take it to prevent the pain from reaching that “worst it can be” level, which is almost daily. I began taking Norco several years ago and my dose has remained the same since then, except during particularly severe flares when I increase the dose for a short time.

My doctor agrees that Norco is the most effective sustainable method of immediate pain relief for me:

When I can’t fall asleep because it feels like shards of glass are being rubbed inside my joints, Norco is my only option. Just so I can sleep.

When I somehow bend in the wrong direction and an explosion of pain shoots through my spine so intense that it takes a half hour to inch my way to my bed, actually screaming in pain the whole way, Norco is the only thing that will reduce my pain enough to be able to even talk again.

When I need groceries but I can barely turn my neck without grimacing, I take a Norco so I can do my shopping, then come back home.

I just took a Norco to finish writing this because of the increasing joint pain in my wrists and fingers from using the keyboard.

I do not take an opiate to feel high or drugged. I actually do not like having to take it; but I do because it is the only effective option to manage my pain just so I can function. The pain never goes away completely, but I cannot imagine having a sustained high level of pain without immediate access to an effective treatment that reduces that pain. I can imagine that I might not want to live with that pain.

It is difficult for many to imagine that trauma-level pain could possibly be a permanent part of someone’s life, so sometimes I refer to chronic pain as a series of lifelong short-term pain events. Sometimes that helps people understand.


Legislation proposals across the country would (some already are) forcibly reduce and in some cases completely remove access to prescription opiates in the name of reducing deaths by addiction, but without putting in place equally effective pain treatment options for chronic pain patients.

Some legislation mandates additional funding for recovery treatment for people for whom addiction is a problem. I agree – there will always be people who are addicted to something, so this funding is needed.

I also agree that prevention is important, and that programs should also be in place to keep addiction from happening in the first place.

I also realize some people become addicted to opioid drugs after using prescription opiates for pain after injury or surgery, and I agree that finding ways to manage temporary pain with a well-monitored tapering dose of medication is important. I also agree there should be consequences for doctors who prescribe recklessly. It is a no-brainer to look at ways to address such abuse of medications by both doctors and patients whose pain is truly short-term.

But Chronic Pain patients who rely on a well-managed, consistent treatment plan that includes opiates are not addicts. Many of us need long-term pain medications to function, to keep us out of the emergency room, to reduce our need for additional medical care, and, often, to keep us from becoming more disabled.

By restricting access to pain medications across the board, many chronic pain patients and our doctors – who agree we need these medications to function long term – are being targeted unnecessarily.

Much of the legislation that I have read proposes cutting access to prescribed opiates without including a provision for how to adequately address lifelong pain management needs for people whose pain will never improve without adequate pharmaceutical intervention.

Is it ethical for chronic pain patients to be effectively punished, and possibly die medically or by suicide as a result of loss in treatment? If the goal is to save lives by cutting access to opiate medications, a strong message is sent to the chronic disease community that our pain and our lives do not matter.

What would help?

Here are some ideas:

  • Legislate funding for the expedited creation and approval by the FDA of pain medications that treat pain in the same way as opiates, but without the same addictive properties.
  • Mandate insurance companies as well as Medicaid and Medicare to cover complementary treatment options like massage, acupuncture, medical devices, physical therapy and water therapy at an equal level that it covers pharmaceutical treatments. Often doctors and pain management specialists prescribe these treatments, but many patients who live with chronic pain cannot afford them. If patients who rely on pain medications are expected (and physically able) to take them less, the alternatives must be just as affordable and accessible.
  • Create provisions for certain types of doctors to be permitted, perhaps through a series of mandated Continuing Medical Education (CME) courses, to bypass opiate restriction clauses through a formal process with the intention of expediting the delivery of opiate medications for chronic pain patients and others who need them long term.
  • Create the infrastructure and mandate universal digital medical records nationally.
  • Fund research at a much higher level to create better treatments and future cures for people living with severe, incurable diseases.
  • Create a healthcare system that provides more incentive and an intentional framework that allows doctors to spend more time with their patients, thus safeguarding mistakes that are made when 5, 10, or 15 minutes is not enough to gauge a patient’s actual pain needs (whether that is remaining on opiates or not).

These approaches will not halt the need for pain medications to exist, but they will reduce the need while providing access for the millions who legitimately need them. Restricting access across the board will only encourage those who are addicted to seek different substances – often more dangerous, while creating an environment where chronic pain patients who need opiates will either find unsafe alternatives or a way out of the pain by attempting or completing suicide.

Targeting people who struggle with addiction is one thing. Helping those who are addicted without also having a plan in place to continue to adequately treat people who live with incurable, severe chronic pain is inhumane and frankly dangerous. We cannot trade one life struggle for another.

If the country moves forward with legislation that restricts access to pain medication with the intention of saving lives, it will be a mistake. Because it will also be restricting access to the same medications that keep millions of chronic pain patients alive and functioning. I agree that we need to address addiction – it is indeed a problem. But we need to find a way to prevent and treat addiction that that does not also restrict chronic pain patients’ access to the most effective treatments for our pain.

Charis Hill is a writer, model, and chronic disease advocate in Sacramento, California. Her story has been featured in dozens of publications, including Arthritis Today Magazine, Mother Jones, and CNBC. You can follow her blog at www.BeingCharis.com.

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Authored by: Charis Hill

There are 19 comments for this article
  1. Maureen Mollico at 5:44 pm

    @Jim in PA….I am so interested in your comment. I recently saw another person’s comment on ‘weak’ meds!
    Lately my gut has been telling me that my meds are not the same either (weak!)! and therefore not helping my pain levels like they used to!
    So, do you think the pharm co’s are doing that on purpose?!!!
    Also, how lucky are you that your rep even called you back! Kudos to her!

  2. Jim in Pa at 11:14 pm

    I have anklosing spon. too, my back has a lot of problems, cervical stenosis and spinal stenosis, plus last year I got scoliosis. I can’t sleep very much. On a good day,4 hours. I have been on opioids for about 16 years. I was working between 2000 and 2012, so I got oxycontin. Now I just get generic stuff so it is weak. I got a real bad batch of oxycodone this month, it is bad, I complained to Mallinckrodt, their meds are usually decent. At least I am not getting Rhodes oxy. I have been e-mailing my state rep about the opioid war. She called me today and we had a talk about how it hurts the chronic pain pt. She agreed with me telling the story of a relative who had a toe amputated and only got enough meds for one day, the surgeon told her that he was afraid of getting in trouble. It took her a couple of days, but she found a doc to give him pain meds. So, keep in touch with your local representatives.

  3. Maureen at 4:37 pm

    Dear Penny, please let us know where you get your Kratom…. I need to try it as well. Thank you! Or feel free to email me at: moneuro@hotmail.com
    Maureen

  4. M.Billeaudeaux at 1:36 pm

    Thank you, Mr. Marty, for the email address also. I just wrote a letter. Please, everyone, do the same, if we do nothing, nothing will be done to help our concerns and our suffering.

    I suggest printing copies of related articles for your pain management physicians also, or you GP, whoever is in charge of prescribing your pain medication.

    Get proactive, not reactive.

  5. Danny at 6:55 pm

    Penny, how do you know where to get some that’s legit? I’d like to see if it works for me, but I don’t know where to begin.

  6. Penny Patmon at 10:37 am

    I have Been taking Norco for 25 years for my fibromyalgia. I got sick of being treated like an addict! I researched and found Kratom. I have not taken any Norco for six months and Kratom ! It has been a lifesaver !

  7. DJ at 11:27 pm

    Tragic but excellent life stories from each of you! I myself am a long term CPP and pray that this witch hunting madness will end, The actual stats do not support the governments conclusions, 90% of the suicides, accidental deaths, and overdoses are from illegal narcotics !
    Thank you for educating the ignorant public and politicians, and please keep up the good work !
    If your able, fellow CPP,res, please donate to help our righteous cause.

  8. Maureen Mollico at 8:30 pm

    @Mr.Marty, Thank you for providing the link…I immediately clicked on it and sent a short and to the point email.

  9. terry at 2:20 pm

    Hello all. First of all I really would like to know if anyone knows of a march or anything I can get involved with to help myself and others. Would be nice if a big lawyer firm would file a class action suit for those of us that are suffering. I’d certainly join and donate as I’m sure millions of others would do also.

    I have been cut down even below the guideline and I just can’t take the pain. Comp had stopped paying for my meds because they didn’t agree on what my dr was giving me. Medicare agreed to cover my pain meds 4-30 oxy’s a day. I’m relieved dr is fighting for me and Medicare stepped up. After 3 months my dr says I talked to comp and they agreed to 50mg. a day, won’t do 60mg which is the guideline. I get screwed out of an extra pill that would make a BIG difference had he just told comp he can’t drop me that low.

    I was on 240mg. daily for like 10 years. Cut down to 160mg and then to 120mg. So on 120mg. I’m certainly not as comfortable as I was but 120mg. is keeping the pain down enough where I can still function and don’t want to put a bullet in my head. So from 120mg. he cuts me to 50mg. which of course is more than half which is ridiculous to do IMO all at 1 time. No weaning at all.

    I have banked all of my extras through 17 years so I have enough to get through about 9 months along with my script. I just can’t get by on 50mg. a day. I’m trying my hardest but it’s impossible. So I got 9 months at most to try and get a pain pump. That looks like my only option otherwise I’m checking out. How can they literary make us suffer when there’s a cure? I can get by with 80-90mg. a day. Still in a lot of pain but again not suicidal pain. So because I can’t get 30-40 mg a day I’m going to have to end my life. I’m only 54 BTW.

    They have to start looking at these cases separately. Someone like me and so many others who have had multiple back surgeries and tried EVERYTHING else shouldn’t be messed with. I was on 240mg., how in the hell is 50 mg. going to work? You’d think cutting me down to 80-90mg would suffice, that’s a third of what I was taking.

    I have the same story as so many. 3 back surgeries, epidurals, handful of therapies, nerve burn surgery, trigger point injections, muscle relaxers, etc. Nothing helps but the opiod. Never asked for my pills early, quit drinking totally years ago, and followed all the rules. They wouldn’t let an animal suffer like this.

    I guess only the rich people who can buy a year supply of pills with cash illegally are the only ones that won’t suffer. I’m scared to death and all I can think of is the pain I will have when I run out of my extra pills. BTW I was able to bank those pills by cutting myself down by myself and enduring more pain. When the dr. warned me he would be cutting me a pill next month I cut myself down 1 month ahead of time and banked 30 pills. Or if I got them on time every month (28 days) I could bank a few because they were a 30 day supply. I did that because I thought this BS might happen.

    That just shows I’m not a junkie and never abused my script or sold them. Now on such a low dose I have no choice but to dig into my extras and take an extra 10 mg. every 8 hours. Just that extra bit makes all the difference. I’m hurting right now like crazy but I’m going to wait until it’s unbearable. I’ve only taken 25mg. in 9 hours so that’s good for me. That’s less than 75mg. a day if I can do the same the rest of the day. I was taking 120mg. daily just a few days ago.

    I know some have it worse, it’s mind boggling. My pain level is a 10 without meds. I’m not talking uncomfortable. I mean crying in agony pain. I’ll quit babbling, lol. Again if anyone knows of a nation-wide march or anything going on in MI. I can attend please post it here and anywhere you can. We can’t let them make us suffer!

  10. Mr Marty at 6:32 am

    We can all start by emailing our representatives in the House and Senate. Most importantly we need to voice our opinions by the millions, to the White House. I’ve done all of the above and here is the White House email. (ppo@who.eop.gov)
    This is a great forum that brings all of us together. We as cronic pain patients MUST have the right representation in Washington if we want to be heard. I’m hoping someone here on this forum is aware of a planned march on Washington DC in the future(.!? ) We need to show our numbers. We must combat this infringement on our freedom to take control of our own bodies.

  11. Marna Janette Parker at 7:24 pm

    I just wish your article could make it’s way to Trump and all of his so called drug czars hands. They are the ones who need to know! I have severe fibromyalgia, RA AND PsA, degenerative disc disease with five protruding discs and one slipped disc, IBS, hiatel hernia, diverticulosis, carpal tunnel, and more. I’ve already gone through having my former rheumatologist offices take me off everything cold turkey, even ultram! Fortunate to have found a new pain clinic where I signed a contract, get drug tested, and have to find someone to drive me to the pain clinic every month to get my paper refills. Now they’re talking about taking me off f my fentanyl patches and Norco. Don’t know what’s going to happen now. Hate being so afraid for my future!

  12. Cal at 5:52 pm

    I don’t know why we post how we feel. They don’t care about the CPP and whether we live or die. They are all evil! We are just little rats being controlled by out of control men/women which is actually run by a shadow government that consists of entities with a 3 letter acronym.

    I don’t expect my statement to be posted but just wanted to rant.

  13. Sharon coffman at 7:52 am

    I take norco every day as i have no disc in my spine. My knees are so bad ,i need new ones.i have kidney disease. I have had double bypass. I have stents in my heart and neck. My brain is shrinking according to my m.r.i.. i take these pills to function. They tell me im terminal . Anywhere from two months to one year. Now the govt wants us to go without pills. Three of my friends have committed suicide,because of the govt. The govt says suicide is best then they wouldnt have this problem. I take 6 norcos a day just to function. I have done this for 10 years. I you have a better answer than suicide. Ill. Listen. Sharon

  14. Kyrie irvingson at 5:23 am

    Well put. Difference between ‘dependent’ and addiction. I am dependent on pain management, but im also dependent on TbI and mood stabilization medication. Together I take them and I do not get ‘high’. It kills my pain as the mood stabilizers stabilize psychosis. I get neither. Have a state or federal database that shows people go to 1 dr. Only. I agree with that. But like anything you cannot lump and fix everything in a one prong approach of just stopping legitimate pain management clients. Put an age number of 37-40 on them. Keep the limit to a reason noble amount: most states do now and pharmacies. I think the curve has changed from pain management patients overdosing (doubt hardly any) to the fentayl laced her ion who probably don’t go to pain management do to blood and or urine testing. Please smart regulation and careful consideration.

  15. Deborah at 9:36 pm

    I have multiple physical issues which my doctor, after sending me to two different specialists, prescribed me the same med as you take-the Oxycodone HCL. I have been using it for the past 13 years, when needed and never have had a feeling of being high. I have had however, some release from the pain and been able to lead my life almost as I used to. Do these opioids take the pain away? Not at all-they do bring it down enough so I can have a fairly normal quality of life.. I asked my doctor if she thought I was now addicted to these pills. She replied saying she knows my body is reliant on them to carry on in a manner I am used to.
    Thanks for a great article and some amazing suggestions, Charis!

  16. Judy Harmon at 9:09 pm

    I have been saying this from day one ! Years ago when my Rheumatologist started to “wean” me off of my pain meds !! I have SLE LUPUS , RA , FIBROMYALGIA , NEUROTHOPY IN MY HANDS AND FEET !! I have many many ” complimentary diseases ” to go along with my health issues ! I suffer from CHRONIC MIGRAINES , I NEED HIP AND KNEE REPLACEMENT , I HAD A STROKE IN 2008 !!! I could go in and on listing health , but you get it by now , I’m sure !! My doctor spends a lot of time with me , she’s mentioned swimming to exercise to me !! I need spine surgery and neck surgery as I have several collapsed disks and pinched nerves , plus bad SCIATICA ON BOTH SIDES !! Medical testing proves all of these issues , not just me writing down a laundry list so people feel sorry for me ! I don’t even mention anything anymore , people ask ” how are you feeling ??” I just say ok , as I know they really don’t want to know, and I don’t care to sit and list all my health issues !!
    I get people abuse Opiods , I get it , I understand it ! I feel bad for families having to bury their sons daughters, mothers fathers nieces and nephews From drug abuse
    I had to sign a PAIN CONTRACT TO MY DR !! Any pain meds or treatment must only be given or administered by their office ! I also know that ANY GIVEN TIME I CAN GET A CALL TO BRING MY PILL BOTTLE IN FOR A COUNT DOWN AUDIT AND IT BETTER MATCH TO THE LETTER OR I WILL NOT GET ANY OTHER PAIN MEDS PERIOD !!!! I get it , I signed it and I FOLLOW IT !!! DO NOT PUNISH THOSE OF US WHO HAVE CHRONIC PAIN AND IT WILL NEVER GET BETTER , ITS NOT A BROKEN ARM , OR LEG ! It’s our new way of life !
    I AM TIRED OF BEING MADE TO FEEL I AM A JUNKIE BECAUSE I NEED MY MEDS ! I’ve done all the other , massage , water therapy , chiropractors , physical therapy too !!!
    Taking away our pain meds to , GET THE OPIOIDS OFF THE STREET ??? You idiots in Washington are PUSHING PEOPLE TOO HEROIN NOT AWAY !! I lost my father in law due to uncontrolled pain , drs wanted to cut his pain meds down or off to the point he had no quality of life …… HE TOOK HIS LIFE !!! I guess WASHINGTON FEELS , PROBLEM SOLVED , NEXT !!!

  17. Maureen Mollico at 7:17 pm

    Beautiful Charis, Bravo! Very well written, informative, to the point and excellent!
    I’m so grateful for your post. It surely needs to get into the right hands!
    I wish you bright and better days ahead. Maureen Mollico

  18. D.kraus at 10:39 am

    The radio and tv is spouting out the action of the president to mandate funds to pay for the treatment of addicts and the families of addicts that took a trip to the other side and did not return.Thats fine.Thats needed.Thats what we need to do as a country that does not stop heroin and fentanyl from crossing the border.This is what we must do since we have no protection from our DEA and CUSTOMS BORDER PATROL.But what about me! Not a word about CPPs NOT A GOSH DERN WORD!What I think we have witnessed these last two years is how our government creates a money making industry to boost the economy and put money in the pockets of those who control our politicians.Its a no brainier,DEA CBP let the drugs in the country,ppl use the drugs,ppl get addicted to the drugs,ppl need help to get un-addicted, supposedly millions of ppl and WHA LA we have created a new 20 billion addiction industry.And no I am not a conspiracy theory nut,only a CPP that can add two plus two and come up with four.Drugs can be stopped at our borders,this is the real problem!DOES IT NOT MAKE MORE SENSE TO STOP THE DRUGS FROM ENTERING OUR BORDERS THAN TO TREAT ADDICTS???????IT SURE AND THE HELL DOES.I don’t want these drugs in my country! I want the DEA and CBP to do this job.I want these agencies held accountable.They have billions of our tax dollars given to them and they run around busting low level dealers getting mere grams of drugs and call it a success.They get 50 lbs of dirt weed at the border and think they saved lives and call it a day.Build the wall.Stop the drugs.Treat the addicts,and give me my medicine back!

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