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.
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 oil and cannabis.
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 opioid 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 opioids 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 opioids 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 opioids 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 opioids 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 opioid 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 opioids, 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 to 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 opioid restriction clauses through a formal process with the intention of expediting the delivery of opioid 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 opioids 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 opioids 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.
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22 thoughts on “Dear Prescription Opioid Debaters:”
I have never posted anything on a blog in my entire life…but as I sat here at 4:30am in pain and read this blog by charis, I had too many tears streaming down my face to barely be able to see the letters on my keyboard. My God, I thought I was the only person out here not understanding how the “opiod crisis” is not our fault… it is being caused by people willing to abuse drugs, not by people living with chronic pain! I’m so sick of hearing every single day about the opiod crisis. My Son’s best childhood friend is addicted to pain killers, he takes 20 pills or more a day but he is not in pain from a chronic illness, he is an addict. He is buying his pills on the street and HE AND MILLIONS LIKE HIM IS WHY WE HAVE AN “OPIOD CRISIS” IN AMERICA!!! I’m so sick of being made to feel as if I am an “addict” because of my need to have a legal prescription (that I take only as prescribed) to help with the awful, never ending pain of my RA…. if the Government takes away pain medication for those of us who legitimately need it, the REAL ADDICTS will still continue to purchase their need to get high-illegally. It is not that I am unsympathetic for addicts …but come on people, why is it “our fault” ??? I’m simply angry over this “opiod crisis” crap that I am subjected to listen to every single day because of people that choose to take drugs that they don’t PHYSICALLY NEED.
Much love and best wishes to all living with chronic pain diseases.
Thank you for posting this. It is so well written and perfectly expresses the concerns that most chronic pain patients have. I use opioid pain medication. I am not an addict. I’m just trying to live my life like everybody else even if I have to do it a little differently. Once again, thank you!
Great read, sometimes I feel so alone and afraid of what’s coming from the fda, the thought of being without the meds I have been on for 11 years is absolutely terrifying. Thank you. I just pray that our voice is heard and we don’t become victims of another problem.
Thank you so much for this thoughtful and well-written argument. I’m definitely going to be sharing this widely.
Thanks for such a smart, thoughful essay, Charis. I’ve taken opioids, off and on, for my rheumatoid arthriis for 30 years now. I take them today: low-dose as “suggested” by the widely misinterpreted 2016 CDC guideline. I am not and have never been addicted, though I’ve been through some mild withdrawal symptoms many times over the years.
I’m beginning to see more media stories about the detrimental effects of the punitive “opioid crisis” mitigation, which gives me hope that the pendulum is starting to swing back toward sanity, however slowly. I can only hope that it will do so before many more chronic pain patients’ lives are ended by either the physical/mental side-effects of their pain, or by their own, despairing hands.
Thanks Wren. And thanks for reblogging!
Reblogged this on RheumaBlog and commented:
A smart, serious essay on the continuing “opioid crisis” and its terrible effects on long-term pain patients, starting with how it affects the writer. But Charis doesn’t leave us without solutions. She’s spelled a heaping handful of them, all of which require simple, level-headed, and compassionate action from the medical and insurance industries, and common-sense action from our government. Well worth a read–and a share with others, if you can.
Thank you for putting in
I’m 34, and I have severe As. I used to be 6’1 now I’m 5’7, my spine has completely fused from the disease. I’ve tried everything you have mentioned, all the biologics nothing worked I caught the disease way to late. I rely on pain medication to live to have a little quality of life, and to keep my job to support my family. If I didn’t have the pain meds the pain would be so severe I wouldn’t be able to move. Your story was spot on. I’m sick of being treated like a druggy, I’m not I’m not chasing a high, I just want to feel somewhat normal and have a quality of life to continue this struggle of life with this horrific disease. Thank you putting this into words.
Charis, good job making this clear including offering suggestions as to what other things can and should be done to help pain sufferers. I an no longer take NSAIDS due to kidney damage (Renal Papillary Necrosis from taking copious amounts of NSAIDS through the many years I have suffered with AS symptoms). I have tried other pain killers but Norco is the only one which helps. I was under the care of a pain management clinic and they had me on Fentynal patches and a higher dose of Norco than I take now. I requested help weaning down from the Fentynal patches and reducing the Norco dose. They refused claiming I was on a low dose compared to many patients. I wound up weaning off the Fentynal and cutting my norco in half. I left that practice and found a new GP who is willing to give me Norco monthy including a pain contract. I fear the Norco being taken away completely by overzealous politicians and citizens who don’t comprehend what my life and the life of others like me is like. If access to opiod pain medication is severely restricted, I predict a future where suicides becomes epidemic among chronic pain patients. I am not a depressive person and am not suicidal but there have been times when my pain is so bad I have thought about ending my life to escape the pain. Norco is a saving grace to me and gives me minimal quality of life.
Your story is just like so many others, and yet we don’t seem to be heard…Keep talking about it, keep sharing your story!
Eloquent argument for something that should not have to be argued. People dealing with chronic pain conditions need to be treated for their pain, even with opioids, otherwise we’re being inhumane and unethical to person(s) in our community. Addiction is a separate issue that needs to be treated as well.
As someone who suffers from moderate back pain from scoliosis, I can empathize with those who require pain medication for chronic conditions in order to function in their daily lives. I’m fortunate not to suffer severe pain from my condition, but it is enough for me to understand how debilitating and demoralizing chronic pain can be. OTC painkillers barely touch my back pain, and I’ve only ever felt free of pain when I’ve been prescribed opioid medications. I’m fortunate not to have severe enough pain for me to need strong medications in order to function, but, more often than not, I feel that I am merely enduring my life, rather than living it. I know it can be much worse than this. I feel afraid for my future, as my pain worsens with age and degeneration, and I feel afraid and very sad for those suffering worse conditions as I see the attitude shifting on prescription pain medications. I am so sorry that people don’t understand the effect severe, chronic pain can have on someone’s life.
Thank you, Jill. I hope you are able to find the relief you deserve to be able to live, not just endure life.
Very well said, with thanks from a fellow chronic pain patient. I’ve already lost two pain medications because my insurance will no longer cover them, and was told it was to reduce opiate use. I can still get the meds – IF I pay for them myself, which obviously is impossible.
We are casualties in a war we didn’t create.
Oh my goodness, I love how you’re allowed to have them if you have the money for them…how telling that the debate is more about privilege than anything else.
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Exactly. So “reducing opiate use” is a complete sham of a lie.
(But we knew that.)
Wow. Thank you for putting this into words that most will comprehend. I’ve been afraid to ask my pain management doctor what all this means for us. I’m not as afraid anymore.
I have Adhesive Arachnoiditis, and I could not have written a better or more accurate refection of my own situation, in dealing with chronic, incurable, severe, intractable, neuropathic PAIN …. I wholeheartedly agree with everything said here and we are FAR from alone , as to date, approximately half of the 10 million people suffering with severe chronic pain , who use opiates daily, have had their medications forcibly tapered or discontinued as a result of the misleading hysteria surrounding the so-called “opioid epidemic”. This is torture, affecting, disproportionatly, the old and Veterans, but EVERYONE it effects is suffering from something they did not choose (unlike addicts seeking a “high”), PLEASE, HAVE MERCY. What does it say about people who could inflict such a brutal policy on its weakest citizens ??
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I agree 100%. I do not understand why those of us who need strong pain medication are being punished because other people abuse it. This makes no sense. I have been on the exact same Regiment of pain medication for almost 10 years. I have never asked for more. I have never used it illegally. Why am I going to be punished because some people choose to use it in an illegal manner? I was prescribed Soma for several years and it was working great as an anti muscle spasm medicine for me. I was taken off of it just like that with no weaning at all at one point. I was told it was being taken off the market I’m not sure about that. I later read an article that you’re never to stop taking that medication as quickly as that. Lots of bad things can happen like seizures and death. I realize that was the fault of my Dr. We had a long talk about it and he agreed that was not the way it was supposed to be done. I’m not sure what happened there. I now take a muscle relaxer that I can only take once in a while because it just makes me fall asleep. Needless to say I live with muscle spasms in several different parts of my body several times a day. I have ankylosing spondylitis and I have multiple sclerosis. These medications are the only thing that helped me get up and get going in the morning because as we all know with ankylosing spondylitis if you just lay around you will fuse. Thank you for your thoughtful blog about this subject. I hope it hits the right ears.
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Thank you Carla, I too, hope it reaches a lot of people who can do something to help.
Carla I had terrible muscle cramping and spasms and found that I was severely deficient in magnesium. I now take 600 mg a day of magnesium and it has been much better. The minute I miss it I have the spasms and cramping again. Have your doctor check your potassium and magnesium levels.