An Untold Story About Prescription Painkillers (Mine)

I take prescription painkillers every day, but I am not an addict.

According to the Centers for Disease Control, we are in the midst of a “growing, deadly epidemic of prescription painkiller abuse,” marked by rising abuse rates along with rising rates of overdose and deaths by overdose. The CDC and others blame this epidemic on readily available opioid painkillers, thanks to a mash-up of legitimate prescriptions from legitimate doctors (for post-surgical or severe dental pain, for example, which often leads to leftover pills languishing in medicine cabinets where anyone in the household can divert them for nonmedical use), and unscrupulous doctors who prescribe meds to almost anyone, without screening for addictive behavior or potential.

Behind the statistics, of course, are stories—stories of people losing themselves to addiction, stories of the heartbroken loved ones left behind when addiction leads to death. Just this week, I read two such devastating stories. On the Huffington Post, Katie Allison Granju wrote about the public health “emergency” of prescription pill overdose, and wondered why drug suppliers are less likely to be prosecuted for homicide resulting from overdose if the victim was an addict, as her late son was. Over on Momastery, Glennon Melton wrote a gut-wrenching diatribe, in which she revisited her own alcoholic history after hearing from a reader whose sister died of a prescription pill overdose.

These are awful stories. Having married into a family with more than its fair share of tragedy linked to substance abuse, my heart breaks for those who have lost loved ones, first to the mess and lies of addiction, and finally to death.

But I’d like everyone who reads these stories, and other media alarms about the prescription drug abuse epidemic, to understand that there are other stories about prescription painkillers. Stories of life, and not death. Stories like mine.

When I was eight months pregnant with my third baby, I tore the meniscus (cartilage) in my knee. While I didn’t know it at the time, that knee injury was the beginning of a life with chronic pain. Six years later, at age 44, I have severe arthritis, along with regular soft tissue injuries affecting ligaments, tendons, and muscles—all fundamentally stemming from my genetic bone disorder, osteogenesis imperfecta (OI).

Surgery to repair my meniscal tear was only minimally successful, and near-constant knee pain, along with increased pain in my other joints, became my new normal. I went to a physiatrist, a doctor specializing in physical rehabilitation, looking for exercise or physical therapy recommendations. While he supported (and continues to support) any efforts I make to shore up my health, my doctor concluded that I was a logical candidate for ongoing use of opioid pain relievers. No amount of exercise or therapy, he reasoned, was going to undo the damage from living my whole life with a weakened, crooked skeleton.

I’ve been using opioids, under the direction of that same physician, for six years now. It has not always been an easy road. A number of times, I used a month’s supply of medication in less than a month, not because I was taking pills to get high, but because the pills weren’t doing their job. I took extras to try to get on top of the pain. When I ran out before I could get my next script filled, I would go through withdrawal, which occurs due to physical dependence, not addiction. Addiction involves physical dependence combined with other factors, such as compulsion and lack of control. Withdrawal feels like having the flu—nausea, fatigue, aches. But whereas if I got the flu, I would lie down and find help to care for the kids, I was too embarrassed to ask for much help whenever I dealt with withdrawal. So I’d tough it out, confiding only in my husband. And then the next time I went to see my doctor, I’d tell him that the doses and medications he was prescribing weren’t working, so we could problem solve together.

My doctor tweaked doses and medications over and over until finally, earlier this year, we settled on a combination therapy, including both opioid and non-opioid pain relievers, which together provide good-enough (not always complete) pain relief. I no longer run out of medication before my next prescription is due. Periodic withdrawal episodes are a thing of the past.

I am grateful for a doctor who stuck with me, who recognized the difference between someone who occasionally screws up her prescriptions because she wants to control her pain to stay active, and someone who abuses her prescriptions to get high.

And I am frustrated with how increasing public and regulatory awareness of prescription drug abuse is making legitimate opioid therapy harder for  patients like me and our doctors. The “epidemic” outcry is not adequately balanced by concern for legitimate doctors treating patients for legitimate pain. My doctor has stopped taking on new patients needing pharmacological therapy, because managing these increasingly regulated prescriptions (along with ferreting out abusers) requires an inordinate amount of time and effort for him and his staff. Despite a supportive and skilled doctor, I have also dealt with overzealous, underinformed medical providers. For example, a new  pharmacist at the drug store where I’ve gone for years seemed determined to do everything in her power to make it hard for me to get my meds every month. One weekday morning, I was the sole customer at the pharmacy counter, and she told me I’d have to wait an hour. When my doctor allowed me to refill a prescription two days early to accommodate my vacation, this pharmacist insisted on calling him to verify his (already crystal-clear, completely legal) instructions…and then put my prescription aside. When I returned later to find she hadn’t even called him yet, I took my prescription back and brought it to another pharmacy, where they filled it in 10 minutes…with a smile even!

Stories like mine, of people living full and successful lives with daily opioid therapy, rarely make it into the news. Instead, time and again, I open some supposedly trustworthy news source to find hyperbole and misinformation. Most articles that mention the rising rate of overdose deaths fail to also mention that many fatal overdoses involve prescription painkillers taken along with other potent medications and/or alcohol—something that a person on legitimate opioid therapy knows not to do. A Time magazine article several years ago seemed to imply that middle-aged folks, with our aches and pains and routine surgeries, can turn into raging addicts after popping a few pills, referring to post-surgical pain prescriptions as “little opioid starter kit[s]” that “pickle” the brains of “users.” An article in the women’s magazine More featured a headline warning about women becoming addicted to opioids taken for migraine relief. The article, however, failed to profile a single addicted woman. Rather, it profiled women who had become physically dependent and/or tolerant of opioids (that is, they required higher doses to achieve the same amount of pain relief), but not addicted, and for whom opioid therapy was likely not the most effective therapy. A promising New York Times article last spring looked at how laws requiring closer scrutiny of long-term painkiller use might rob legitimate patients of their best hope for pain relief. Ultimately, however, the article focused more on the opinions of medical authorities intent on limiting access to these drugs, rather than on how such limits might affect people who rely on them.

Taking prescription painkillers long-term has helped me better understand the allure of addiction’s empty promises. When I was in the throes of sickening withdrawal symptoms coupled with untreated pain, I sometimes thought, “I would do anything to feel better.” Because my physical dependence was not a compulsive, uncontrolled addiction, however, I didn’t. I didn’t lie to my doctor, saying that I accidentally dropped all my pills in the toilet and needed a new supply. I didn’t head down to the high school parking lot to find some kid who would sell me his grandma’s leftover Oxycodone. Instead, I took lots of Advil, drank lots of water, napped during the day when I could, and then told my doctor what was going on. But I understood a bit better what might drive someone to do risky and stupid things, because they feel desperate to do something, anything, to feel better.

And I won’t pretend that I don’t notice the mild euphoria that comes with opioid use—the way a fresh dose smooths my rough edges and improves my mood. I don’t take medication because it makes me feel nice, but I appreciate feeling nice nonetheless, the way I might appreciate a medication with a side effect of making weight loss easier, even if I wasn’t taking it to lose weight. So I understand a bit better how an addict might justify their risky and stupid behavior, because their substance of choice smooths the rough edges and makes it easier to cope with life’s ups and downs. For a little while at least, until it doesn’t anymore.

I don’t want it to be easy for my kids, or anyone else’s kids, to get their hands on potentially dangerous medication, to be tempted by addiction’s empty promises. I support efforts to make it harder for people to obtain prescription painkillers for recreational use, and for unscrupulous doctors to enable addicts. But I also want to make sure that, as we talk about the best ways to limit prescription drug abuse, we include stories of people like me alongside stories of addiction, cheating, overdose, and death.

I take prescription painkillers every day, but I am not an addict.

My pain does not stem from a discrete injury that can be fixed by surgery or therapy, but from a lifetime of injuries, abnormal gait, and bones and muscles not quite working the way they are supposed to.

While I am conscientious about making good choices for my overall health, there is no diet, supplement, superfood, or exercise that can do for me what an adequate dose of opioids does for me.

My medications don’t make my pain disappear. But they lessen it enough that, most of the time, I can give my attention to what’s important to me rather to that nagging ache in my back or shooting pain in my knee. Prescription painkillers allow me to live a full, energetic life, to care for three children, to nurture a marriage, to clean and cook, to swim and hike and garden.

And because of all they do for me, I am afraid. I am afraid of what will happen to me and people like me if regulators insist on making painkillers less available to everyone, instead of seeking ways to thwart addiction and negligent doctors while still making valuable medications available, without stigma or hardship, to those who benefit from them.

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

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  • Jessica

    This was fascinating. I have a friend who recently developed chronic (and seemingly unexplainable) nerve pain, but who cannot get prescription painkillers because she is in her mid-20s and therefore a “prime candidate” to become addicted. They’ve given her a bottle of giant ibuprofen. Meanwhile, she can’t even wear a collared shirt without it causing her terrible discomfort, just from touching her skin. It’s really, really scary – to imagine that you could be in constant, severe pain and denied the tools that could help you.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      That’s a tough story, Jessica. Nerve pain is a whole different ball of wax, and one that I know nothing about. I hope your friend keeps looking for help, tries to find a pain clinic. There has to be something better for her than those giant ibuprofen.

  • http://Www.kewp.blogspot.com Katherine Willis Pershey

    So important that you are sharing your experience, Ellen.

    I take heavy painkillers on a very limited basis – for a few days once or twice a year for back spasms that are short-lived but excruciating. This summer I had not taken the pills with me on a vacation – because what were the chances I would need them that week? – and I had a terrible attack of back pain. I had to go to an urgent care place to get a new prescription, and my panic that the doctor would think I was an addict telling a story added to my panic about the pain. He didn’t, thankfully, but I am never going anywhere without the prescription again, so as to avoid the situation.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Thanks for sharing this story, Katherine. When I’ve talked tangentially in speaking engagements about this topic, I always have people come up afterward and admit they too have had to dodge the Soup Nazi pharmacists (“No pills for you!”) and deal with their secret shame about being on “those” drugs. There are lots of us, but we’re all afraid to talk about it!

  • Dave

    > But I’d like everyone who reads these stories, and other media alarms about the prescription drug abuse epidemic, to understand that there are other stories about prescription painkillers. Stories of life, and not death. Stories like mine.

    Just as there are stories of life, and not death, about guns: stories where people use guns to defend themselves and others against the pain of injury and death.

    Here are some numbers to ponder:

    Over 15,500 people died in 2009 from presciption pain killer overdoses. http://www.cdc.gov/vitalsigns/MethadoneOverdoses/#

    1,825 people were murdered in 2009 using knives. http://www2.fbi.gov/ucr/cius2009/offenses/expanded_information/data/shrtable_08.html

    348 people were murdered in 2009 using rifles (of which, I presume, assault rifles are only a fraction). http://www2.fbi.gov/ucr/cius2009/offenses/expanded_information/data/shrtable_08.html

    So for the greater good, would it be better to ban prescription pain killers, knives, or assault rifles?

    Or, for the greater good, would it be better to allow people to decide for themselves on their own path towards life, liberty, and the pursuit of happiness?

    “And because of all they do for me, I am afraid. I am afraid of what will happen to me and people like me if regulators insist on making less available to everyone, instead of seeking ways to thwart and while still making available, without stigma or hardship, to those who benefit from them.”

    • Dave

      P.S. Oops! In the last paragraph that I was quoting, the blog software deleted my inserted replacements:

      “And because of all they do for me, I am afraid. I am afraid of what will happen to me and people like me if regulators insist on making _whatever_ less available to everyone, instead of seeking ways to thwart _misuse_ and _criminals_ while still making _whatever_ available, without stigma or hardship, to those who benefit from them.”

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        Hey Dave. Did you post another comment besides this one? Cause it’s not showing up! Though I can totally guess what you’re going to say based on the quote you pulled. To which I would say, if people wanting to get guns had to put up with half the crap I put up with to get my medications, I’d stop whining about gun control. Fair enough? :)

        • Dave

          I posted a comment (which says at the top that it is awaiting moderation), and then I posted a reply to that comment that starts with “P.S. Oops!”.

          Fair enough about gun control vs your meds, but I think I got the better of that bargain because I already agree with you about your meds. I don’t think you (or anyone) should have to go through a big hassle to be able to function at your best, especially if part of the hassle is due to the arbitrary whims of a 3rd party.

          • http://www.ellenpainterdollar.com Ellen Painter Dollar

            Found your comment. Not sure why it was sent to moderation.

            You make a good point (though I think you would need to add stats about gun-related suicides and accidents and such to your stats to make the argument stronger). And in both cases, guns and pills, I think we could do a much better job of making sure that people who obtain these potentially dangerous items are appropriately screened without limiting the rights of people who will use them legitimately. So, for example, you shouldn’t be able to buy a gun at a gun show without a background check/waiting period, and you shouldn’t be able to get prescription drugs over the Internet or with a sketchy prescription.

            I don’t want to take away your gun, and I don’t want anyone to take away my pills. And in both cases, I would like it to be harder than it is for people to get these items for illegitimate use.

          • http://www.ellenpainterdollar.com Ellen Painter Dollar

            And I’ll also say that, understanding these drugs’ potential for abuse, I’m willing to put up with a certain amount of hassle as a legitimate user. For example, I drive about 15 miles each way, once a month, to my doctor’s office to pick up paper prescriptions because certain types of drugs cannot be called in to a pharmacy. This is a hassle, but I’m willing to do it. I would gladly submit to other measures, such as bringing my meds in to my doctor so he could be reassured I’m not using too many and that kind of thing, or even random drug tests, if these measures helped prevent abuse. As I said in one of our gun conversations, “…many of our laws are built on the idea that it’s part of the social contract to take measures that lessen the harm from the action of irresponsible individuals, even if those measures also affect responsible individuals.” And I’m willing to be inconvenienced by such measures if they help prevent addiction and abuse.

            What I’m not willing to do is watch in silence as regulators talk about making it harder for anyone to take these drugs long-term, or as a pharmacist decides it is her job to make me jump through arbitrary hoops to get my perfectly legitimate prescriptions, or as journalists publish misinformation and hyperbole about what addiction is and who is at risk of addiction, thus fueling a popular misconception that these drugs are addictive for everyone.

          • Dave

            > I think you would need to add stats about gun-related suicides and accidents and such to your stats to make the argument stronger …

            I tried to find better stats for suicide-by-knife and suicide-by-assault-rifle (and knife accidents and assault rifle accidents), but I think that both of those are so rare that CDC/FBI/whoever don’t bother keeping stats on them. Although maybe they’re out there but I just couldn’t find them. Personally, I can’t remember ever hearing of anyone committing suicide-by-knife (ignoring razor blades) or suicide-by-assault rifle, or dying in a knife accident or assault rifle accident.

            However, I have heard of murder-suicides involving both of those. So, let’s make the assumptions that make prescription pain killers and knives look as good as possible, and make assault rifles look as bad as possible. Let’s assume that 1) no one ever commits murder-suicide or has an accident with a knife, 2) that all rifles used for murders are assault rifles, 3) that every murderer using a rifle kills only victim, and 4) that everyone who commits murder with a rifle then kills themself or has an accident with their rifle that kills them. Those assumptions leave the prescription pain killer deaths and knife deaths unchanged, but double the number of rifle deaths and ascribe them all to assault rifles.

            Then the numbers that make assault rifles look as bad as possible are:

            Over 15,500 deaths due to prescription pain killers in 2009.

            Minimum of 1,825 knife deaths in 2009 (assuming only murders, no suicides, no accidents).

            Maximum of 696 assault rifle deaths in 2009 (all rifle murders assumed to be assault rifles, only 1 victim per shooter, and the shooter then commits suicide or accidentally kills themself).

            So using the assumptions that make assault rifles look as bad as possible, prescription pain killers are over 20 times more deadly than assault rifles.

          • Dave

            > What I’m not willing to do is watch in silence as regulators talk about making it harder for anyone to take these drugs long-term, or as a pharmacist decides it is her job to make me jump through arbitrary hoops to get my perfectly legitimate prescriptions, or as journalists publish misinformation and hyperbole about what addiction is and who is at risk of addiction, thus fueling a popular misconception that these drugs are addictive for everyone.

            Load your pain-killers into bullets, call them “non-lethal tranquilizer rounds”, and invoke the 2nd amendment?

  • Marcie

    Ellen, As I said a few days ago, I too, have chronic pain. I’ve found Physiatrists who will give me what I need. So far, we have not had trouble with pharmacists. I’m also grateful that some of my most significant pain has been taken care of with permanent nerve blocks. When I was in HS, I shattered my right hip twice in 18 months. I overheard my Orthopedist tell the nurses and write in my chart, “Give her what she wants when she wants it, she’ll take herself off when she doesn’t need it.” And I do. My daughter, who is a Physiatrist, told us when in Residency, that people who take pain meds when not in pain *do* get addicted. People who take pain meds for real pain rarely get addicted. The difference there is that we do depend on the meds to help us live our lives. To me that’s totally different than addiction. When I have to come off some drugs pre-surgery, I can tell, I hurt. But I’m dependent on them for functionalitly. I’ve never gotten high on them. In fact, some I won’t take because they make me fuzzy and do nothing for the pain.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      I too have learned which meds, taken at what times of day, make me too fuzzy, and have learned to avoid certain meds at certain times (like after lunch, when I’m naturally kind of sleepy, but then have to go spend the afternoon driving my kids around and really can’t be any more sleepy than usual!).

  • Marlena

    Hi Ellen,

    Thank you for this well-written, informative article. You made your case well. Those that truly need help should be able to get it under the supervision of competent physicians. I hope your article helps others who are in the same position. I am grateful that you are able to do all that you can in spite of a painful, debilitating, disease.

  • Terry WysongRevtw

    So glad to have had the opportunity to share this “journey” with you. It cn be very lonely , especially living with the fear of zealots who may want to decide FOR US what is in our best interests,getting between us and responsible , caring doctors. Thanks for your words and the courage to be open about it. many Blessings

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Thanks Terry. Was hoping you’d see this one :)

  • http://leftbehindagain.com/homealone Linda

    I am a fibromyalgia sufferer, and my experience with attitudes toward maintenance medication has not been positive either. The Christian attitude toward medication seems to me even more suspicious than the culture at large, unless it is for some kind of infection or terminal disease. My own mother looks at me askance because I take medication twice daily to handle my pain. I imagine that if she and others would say exactly what they think, it would sound something like, “If your faith were really strong, you could just tough it out without medication.” There are multiple things wrong with this attitude, though. First, it is usually spoken (or alluded to) by people who do not suffer chronic pain and have no idea what it is like to accomplish simple tasks while the searing, throbbing, or burning of pain permeates one’s being. Secondly, why is it any different than a severely diabetic person receiving insulin or dialysis? Or a cancer victim receiving chemotherapy? It is what he or she needs to maintain health or limit the effects of disease. Thirdly, this attitude minimizes the good creation of humankind that deals with the condition of a fallen world filled with pain. Dimming the effects of evil (and chronic pain is a kind of evil) is a GOOD thing that has come out of the painstaking research of our age. Finally, why is it a mark of faith to reject medications? Could it not be an act of faith to humbly submit oneself to a regimen of pain-killers and prescription drugs for the sake of family, friends, and community? I believe, like you, that it is. I am a better wife with medication. I am a better mother with medication. I am a better friend with medication. I am a better Christian with medication. I am a better person with medication.

    Thank you for your blog post. I hope more people will familiarize themselves with this issue since it affects some of us very intimately.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Thanks for reading and sharing your story. You mentioned that people are often suspicious of medication taken for anything other than “infection or terminal disease.” That’s another pet peeve of mine when it comes to journalistic coverage of this issue. Often, the reporter will quote someone as saying how important these meds are to people suffering from painful terminal cancers. They ask, if the cancer is terminal, why are we worried about addiction? It’s a great question, and I certainly support people with terminal illnesses being adequately medicated. But by focusing almost solely on legitimate use of these meds for terminal illnesses, it again makes me feel like my experience is not being reflected, like my story goes unheard, and like the message is, “These are okay if you are dying, but not if you use them for living.”

  • http://www.ellenpainterdollar.com Ellen Painter Dollar

    “Load your pain-killers into bullets, call them “non-lethal tranquilizer rounds”, and invoke the 2nd amendment?”

    Nice one, Dave. Very, very nice!

    • Dave

      I’m actually kind of impressed by you. You have to deal with a genetic disorder, three kids, pain, a husband, blogging, responding to nuisance posters, and who knows whatever else. It’s amazing what a person can overcome when they are blessed with an incredible desire to be the center of attention. :)

      • http://rachelmariestone.com Rachel Marie Stone

        Um, that is over the line. You don’t know what you’re talking about.

        • Dave

          > Um, that is over the line.

          I think lines are interesting; on the other side are new frontiers. Or monsters. :)

          > You don’t know what you’re talking about.

          It’s worse than that. I don’t even know if I don’t know what I’m talking about. When in doubt, I’ll often just blurt out the first thing that comes to mind. Sometimes I hit the nail on the head. Sometimes I hit my thumb. But if I hit Ellen’s thumb, then I’m really, really sorry and I hope she’ll forgive me.

          • http://www.ellenpainterdollar.com Ellen Painter Dollar

            I’m going to give Dave the benefit of the doubt and assume that he was making a very subtle joke referring to my #1 point in this post: http://www.patheos.com/blogs/ellenpainterdollar/2012/07/the-six-most-annoying-things-that-people-say-to-and-about-bloggers/

            If that’s not the case, then please do try harder to be nice.

          • Dave

            > I’m going to give Dave the benefit of the doubt …

            Thanks!

            > If that’s not the case, then please do try harder to be nice.

            I must confess that I didn’t read your post until after I posted my “subtle joke”, so I’ll have to try harder to be nice. I hope our definitions of nice aren’t too divergent! I tend to tease my friends and relatives, which I may not have the skill to pull off on the internet without sometimes sounding like I’m going “over the line” (for example, instead of saying “Thanks!”, I was sorely tempted to say “Whew, saved by the belle!”).

  • http://www.dorothygrecophotography.com dorothy greco

    Thank you for risking rejection, being misunderstood, and or judged by folks who have not walked this road (or fundamentally disagree). As one who has suffered chronic pain for more than 11 years, I so get this.

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  • Rhonda

    I am weeping as I am finishing reading your post. And I don’t particularly want this to be available for all to see and perhaps criticize. Your comments echo exactly the feelings my husband had during 20 years of chronic pain. I say had because he took his own life in February because of his despair of ever finding relief. He (we) had gone to doctor after doctor trying to find relief from his neuropathy and other chronic pain. His pain management doctor had just required that he complete a new “therapy” consisting of biofeedback, physical therapy, and psychiatric care. He began it hopeful, as he always was, that THIS might offer some relief. But mainly he feared that his doctor would withdraw his methadone if he didn’t show that he was willing to try anything beyond opioids. Our lives centered on his pain management, dictating all his activities. And he felt so little support from family and friends that the pain was as excruciating as it was. They mostly thought he should just “buck up” and deal with it. So thank you for your attempt at educating others that there is a legitimate need for opioid use. And I need to stress that my husband didn’t die from an overdose, intentional or otherwise. Please continue to stress to the uninformed how essential access to pain medicine is for legitimate pain relief.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      I am so sorry for your loss. I don’t think you need to worry about being criticized here, as I have a pretty good group of readers and tend to delete posts that are overly critical. But if you decide you don’t want this up publicly I can take it down…just let me know. Again, you have my sympathies. I am so sorry your husband suffered as he did, and that you are suffering now without him.

  • Laura

    My mom is 54 yrs old. She is overweight. She is 5’9″ and about 250lbs. Doctors tell her to excersize but she can’t. Her job of 14 years consisted of standing in one place for 10-12 hours per day. She got carpal tunnel from that job. She has carpal tunnel in both hands and wrists. Her left knee is rubbing bone on bone. She has cronic back pain also. She had her left hip replaced. Her right hip also needs to be replaced. She has arthritis in both knees and both hands and wrists. When she had her hip operation they denied her prescription painkillers before the operation. The operation was delayed three times. When she went in for one of her physical therapy sessions (alone) the Dr. prescribed a massage for her left knee and also a shot in her knee to reduce the bone on bone contact. The physician did not do what the Dr. prescribed. He instead made her execise heavily. She came home crying. She refused to go back due to the incorrect treatment. No one in our family can get her to go back. These specialists have all of her x-rays and know the extent of her pain. They refuse to give her a prescription of any kind. So she takes 5 Tylenol arthritis and 5 Excedrine Migraine pills every 3 hours. Everyday all day long. Because of all the caffeine in those pills she has a very odd sleeping schedule. There are times when she wakes up just to take the pills and goes back to sleep. I am afraid for her life. My husband says that her body can’t process that amount of acetominofeine per day. She won’t let me take her to the doctor. She has insurance but she gets denied prescriptions everytime. Around the time she had her hip operation they gave her 1 script before the surgery and then delayed the surgery for 5 weeks. After the surgery they gave her a 2 month supply of painkillers. My mom is not a junkie. Although to me it seemed like she is addicted to acetominofeine. Until I read about physical dependence. After they annexed her job she became a homemaker. Her pain got worse. She is unable to get a job because of her pain. They won’t accept her application for disability. When we go shopping she uses the electronic wheelchairs. She won’t go to a store that doesn’t provide one. My brother and I are extremly worried about her. She just seems too young to be so disabled. I believe her job took a great toll on her body and it has only gottem worse. I don’t know what to do. I’m afraid if I finally get her to go back to the doctor they will look at me like I’m trying to score some pills. She is not assertive on her own hence the reason I want to be there for her. I want her to get tested for like fibromyalgia or something that might be causing the majority of problems. She has the kind of insurance that won’t test for certain things unless asked to. We have no idea what needs to be tested. I’m so frustrated. All the while I am watching my mom deteriorate day by day. Please help if you can.

    • Laura

      Also I’d like to add that she has been taking all those pills for at least 5 years. That is way too long to be taking 80 pills of acetominofeine everyday.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Laura, I’m so sorry to hear of your mom’s struggles! I can’t provide any kind of medical advice, but I certainly share your concern, both about the level of your mom’s pain and disability and the amount of tylenol (acetominophen) she is taking. That does seem excessive and potentially dangerous. It sounds like she is reluctant to go to new doctors because of previous bad experiences. But the best advice I can offer is to see about getting her into a pain clinic of some kind. They are trained to look at the whole person and consider various ways of reducing pain, including physical therapy and appropriate exercise, weight loss, and medication if needed. I certainly think a doctor needs to be aware of the amount of over the counter meds she is taking. If she doesn’t have a pain clinic nearby, then you might help her get in to see a physiatrist. A physiatrist is a doctor specializing in rehabilitation medicine. Their job is to help people with injuries figure out how to function as well as they can within whatever limitations they have. Again, they can help with therapy and exercise, adaptive devices (braces, canes, etc.), and medications if they decide that’s needed. I wish I could offer more advice but that’s the best I can do! I certainly understand how difficult this must be for her, as someone who also lives with a great deal of pain.

  • Kellie

    Thank you! I have recently (finally) been diagnosed with severe OA of my neck and both shoulders and have been suffering with unrelenting pain for six months without proper medication pain relief. Finally, finally I am under the care of a wonderful rheumatologist who has helped me and prescribed a painkiller that works for me – with absolutely no hesitation. You are correct about the stigma and I myself have been upset and reluctant to take the opioid prescribed to me. I have surrendered at last and feel so much better. It’s been hard because my parents were of a generation where you sucked it up and didn’t take anything for pain. Well I am not that strong and the pain has been extremely debilitating. I know that I will be on these or some type of painkiller for the rest of my life and I am only 49. It’s kind of scary, but reading your article made me feel so much better about it and I thank you. I’m tired of trying to tough it out and tired of doctors looking at me like I’m making it all up. Thankfully there is now radiological proof so they can’t do that to me anymore. I am so happy I found your article and again thank you for making me feel more positive about this. I hope that you do an update on how you are and I will visit your website to read more pieces that you have written. Take care! :)

    • http://ellenpainterdollar.com/ Ellen Painter Dollar

      Hi Kellie – I’m glad to hear you are finally getting some relief, and that this post helped relieve some of your guilt/shame/embarrassment. It’s such a tricky, tricky issue. Clearly, there is much work to be done to curb the growing problems of misuse, addiction, and overdose. But I am hopeful that we can find ways to do that without punishing those who use these meds legitimately, for whom opioids provide relief that allows us to live active and full lives. Best of luck to you.

      • kando

        Thanks for your reply Ellen. I just realized today that you replied LOL! Sorry, not paying attention. Thank you again, it is heartening to have your feedback. Hopefully it will help with the guilt I feel every time I go and refill my prescriptions. Take care, Kellie

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