Chronic pain, narcotics, and stigma – Community thoughts

An article in The New York Times published earlier this month reported that data from a study conducted by pharmacy benefits manager Express Scripts found that patients who are prescribed narcotic painkillers are getting more of them for a longer time.1 In fact, approximately half of the patients who were taking painkillers for 30 days during the first year of the study were still taking them 3 years later, which is understood to be a sign of potential abuse. As most of us know, there are established risks associated with long-term use of some prescription pain medications, including addiction and accidental overdose. However, for the hundreds of thousands of patients living with chronic pain, these medications are a critical component to managing their pain and overall quality of life. We recently asked our Facebook community members what they thought about this study, and we received an overwhelming number of responses! More than 200 of you were kind enough to share your thoughts with us! Here is what you had to say!

Pain medication is an essential part of my treatment plan

  • Until there is a cure, we will continue our pain meds to survive!
  • I am so frustrated by these new restrictions on opioids. I take vicodin for my RA pain. Regular Tylenol doesn’t help at all, and I’m allergic to NSAIDs. Some people actually need these medications to function.
  • I think that after fighting RA and its affects, degenerative disc disease, osteoporosis, scoliosis and other medical issues (some for over 50 years), I am doing the best I can to try to maintain some type of functional life. I challenge anyone to walk in these shoes without any type of pain meds.
  • I was diagnosed at age 7 and am now turning 29. I have three total joint replacements and a fused ankle. I also have two children (5 and 3) who keep me extremely active! Between taking and picking up from school, volunteering at school with a 3 year old on my hip, dance and every day life, I cannot imagine not having my steroids, anti-inflammatory medicines and pain killers!
  • If you don’t have severe RA you have no clue what the pain is like. It’s unbearable at times even with the high doses of pain meds. I for one could never function or live without them.
  • I’m bedridden if I don’t use pain medicine. So if diet and exercise help you, more power to you.
  • Living with RA is only tolerable with my pain meds… Anyone who judges me can try to walk a day in my shoes!!
  • Anyone who has lived with chronic pain understands how much it affects every aspect of your life. In order to live a normal life and do as we would be doing if not for this much pain, we need help. We should not be judged for that. It should be made easier for us so that we just don’t sit down and give up on life.
  • I have RA and I need my pain meds. Without them I would have no quality of life. I don’t abuse my meds and I certainly don’t want to need them but I do.
  • Some people would not be able to function, i.e., go to work without them sometimes just no other options. Who wants to be in constant pain?
  • I take pain relief to help me with pain and I refuse to apologize for this.
  • The pain is real! I was taking hydrocodone for my pain. Now with all these new laws my doctor will not give me any!! Tramadol is what he gives me which only make my stomach hurt. Something should be done for those of us who have chronic pain!
  • My rheumatologist told me they didn’t want to cover up any serious pain I may encounter while talking the pain meds for my RA. But I was sent to pain management for pain meds. I do get treated differently since starting hydrocodone and morphine. But I don’t care as long I don’t have to deal with the constant pain and I can function better I don’t take more than prescribed even though sometimes it is not enough.
  • As someone who suffers from chronic pain, I can understand this completely. Anything that you can find that helps relieve the pain, for even just a short time, you stick with.
  • As a person with RA, I am very grateful for my pain medications.

I’m frustrated by the stigma associated with taking prescription pain medications

  • I think it is sad that recreational users have made is so darned hard for people in pain to get treatment.
  • I take oxycodone very occasionally, but when you have those really bad days there isn’t much that helps except the pain meds. I feel like a bus ran me over, and when I take the meds it mellows the pain out. So I can either sleep or continue my day
.
  • If you need it you need it. With diseases like RA it’s ridiculous. Stop making us feel like drug addicts.
  • I am so glad I am not alone. There’s nothing worse than a pharmacist asking me if I really should be taking my pain meds. I hate feeling ostracized at the pharmacy- it is the worst feeling in the world – being in terrible pain, not working due to physical restrictions and not sleeping- finding something that works, not abusing it, and being questioned every 30 days for the rx your doctor writes.
  • When I was in the ER few weeks ago, again I got attitude from the nurses and the pharmacy tech on being on long term pain meds. You get the snarky comments, the superior attitude.
  • I think it is fine for chronic pain and terminal illnesses. The chronic pain takes away from any quality of life a person can have. Adequate pain control helps patients live normal lives with less pain and happier lives as well. Pain raises the blood pressure and so many other issues. Just because drug addicts steal pain meds is no reason to limit people who have a genuine need for pain relief.
  • It’s ridiculous to talk about people who are in chronic pain becoming ‘dependent’ on pain killers- if the illness is not going to disappear neither is the pain and so you will continue to need the drugs- this may sound like dependence to those who don’t live with the constant pain but what are we to do? Take the drugs for a pre-determined amount of time and then we don’t get them anymore? What are we supposed to do then?
  • ‪Someone needs to tell these researchers that if we didn’t have pain meds we would not have any quality of life at all. I’m 66 years old and I’m tired of being treated like an addict.
  • It should also be noted that when you’re in pain, you don’t get high. The pain meds are working on taking care of the pain.

People who don’t experience pain don’t understand

  • Those with no pain don’t understand!
  • I wish I could live my life without pain meds, but my life is not worth living if I have to go without my medicine. The pain becomes so severe it makes me vomit, I hate that someone who has never had chronic pain tells me I do not need it, I hope they never have to feel what I feel on a daily basis.
  • Doctors, hospitals, pharmacies etc. all scrutinize us, but no one can even begin to understand this unbearable pain we are living with
.
  • ‪I think that no one understands the chronic pain of Rheumatoid Arthritis!!!
  • Until there is a cure for the disease that is terrorizing me, I will tell you to live one day in my shoes of pain then tell me pain meds are overrated, overused, and not needed. I get so angry to see these that I want to scream. Live with real pain and then talk to me.
  • I really hate to be judged by being compared with everyone. Walk in pain for days and lets see how you feel.
  • Chronic pain from RA or other conditions is a serious issue all on its own. I found that out this summer when my blood pressure was sky high and refused to come down until my pain was better controlled.
  • Stay out of my business until you walk in my painful shoes.

Don’t forget about some of the alternative treatments that are available

  • Taking prescription pain pills doesn’t make anyone “bad”. They take them because they are in pain and the pill eases a bit of that suffering. However, there ARE other options. Medical marijuana is a legitimate option that many people are benefiting from. The future is here, like it or not, the truth will be heard because the masses refuse to be quiet. You have every right to take prescription drugs. You should never feel shame about that. You should also have the option and choice of natural treatment.
  • Until legalization of marijuana nationwide to use in forms of oils, juicing and such to get the pain relief benefits of without the “high” – chronic pain patients have few long-term healthy options.
  • Medical marijuana is not an option for everyone, or everywhere. Although it was approved in New York this year it will not be available for another two years. And, the state government has only approved it for a very limited number of medical conditions. If you suffer from a chronic pain condition that is not on that list, you will not be able to get it.

I have mixed feelings about the use of prescription pain medicines

  • I have mixed feelings. These drugs can definitely lead to dependence even when taken as prescribed and not abused. But if someone has a chronic illness causing pain, aren’t they technically “dependent” on pain relief if it never goes away? Plus there is a downside to leaving pain untreated. It puts a lot of stress on the body (and mind), which leads to increased cortisol, which leads to weight gain and eventually central obesity, which creates other health issues. Maybe reducing pain (even if it means taking lifelong painkillers) is better if it means the patient can exercise?
  • I don’t take more than I need, and my Dr. trusts me to do that! These people who keep making laws need to walk in our shoes for a while! I hate being penalized for the drug addicts out there.
  • I have a prescription to hydrocodone and hardly ever use it. To be honest naproxen helps me more on really bad days than anything. I might take a hydrocodone once every 3-6 months.

What do you think about this study? How do you think it affects those who take prescription medications to manage their pain? Please share with us in the comments!

View References
  1. Thomas K. Patients Prescribed Narcotic Painkillers Use More of Them for Longer, Study Finds. The New York Times. December 9, 2014. Accessed December 23, 2014. Available at: http://www.nytimes.com/2014/12/09/business/patients-prescribed-narcotic-painkillers-use-more-of-them-for-longer-study-finds.html?ref=health&_r=2.

Comments

View Comments (12)
  • 4 months ago

    I have been dealing with degenerative disk from my time in the military service. but over the years i started to not be able to move like lift my arms or bend and i was becoming bedridden. Mornings became hell for me. I found out i had something further than just my injuries. After a few tests i found out i had this arthritis and it was all over in my mind. I am young, so i was desperate for relief. Pain meds have been out of reach no one will prescribe me them. it is like they literally push you to the streets. i only need 20 a month for the bad days but they over prescribe and when i dont come back for four months because i dont need 60 pills they wont prescribe me anymore. I said you guys want to kill me? I know my body and what it needs and i dont need 60 pills a month!! i need 20!! they said sorry we cant. so i found kratom. In addition to the sulfasalazine i need something for the pain. I mean i am in pain everyday but i dont need pain pills everyday. I can suck it up sometimes you know? I will get insurance eventually again to maybe find a doctor to help me with pain but for the time being without help Kratom has saved my life. literally without health insurance its all i got.

  • RHPass
    3 years ago

    This issue has been front and center for me during the past year. my long time rheumatolagist retired and the new doctor wants my primary doc to handle the pain meds. she tries to understand, but is so restricted! and for me, as a person who is known my family & friends to be a brutally honest person, the pain med battle has changed me! I am treated like a criminal, but accept my fate if it means the pain might be bearable for awhile. the stresses of having had RA for close to 20 yrs now, the toll it has taken on my body & soul is more evident than ever before. I seriously do not believe that ANY politician has the right to decide what I NEED to have any semblence of a life! walk a mile (or a few feet most days) and let me know what you think then! those of us in pain 24/7/365 do not deserve to be treated as criminals, have relief taken away from us (or live with the threat of it), beside dealing with our RA!

  • 4 months ago

    man i hate that criminal mentality. just because they are restricted doesnt mean as a doctor they cant use judgement. I cant understand how intelligent people like doctors who school so intensely just falls victim to herd mentality like this? it is amazing i thought they were scholars? So what happens that they lost the ability to judge their patients?

  • Kayla Gallo
    4 years ago

    Thank you for this! Most people don’t understand that there is no living with debilitating chronic pain, only existing. My quality of life should not be sacrificed because there are people out there that abuse these drugs. I shouldn’t feel ashamed to say that I need my pain medication, yet with all the stigma out there I do. I’m tired of being treated like a junkie every time I’m honest about my pain. It’s just nice to see so many others feel the same way!

  • Kim
    4 years ago

    Wow…when I read the article I was floored….but after reading all the comments, I calmed down. Like so many I would not be able to function without morphine…I started of course with NSAIDS but as time went by and other medical issues joined my life my drs and I started with Tramadol and proceeded thru the rest…ended up with Morphine and Naproxen is my magic combo….went thru a pain management program which was very helpful…but the fact is pain meds only help with about 40 percent of our pain….I desperately need my pain meds…I am a 59 yr old responsible adult who did nothing to get this disease…I manage my illness and keep myself educated…but without pain meds I literally would be curled in a ball in bed, pleading with Godto take me home….no one understands like so many other comments mention, until they live your life…

  • Carlene Hansen
    4 years ago

    I sincerely appreciated this story. At times I feel lonely fighting the diseases that plague my body with medication. However,I could not make it through the day without them due to the number of disease processes in my body.
    Thanks for this article!

  • Jeannie Lopez
    4 years ago

    I have been living with a flare now for 3 months. No matter what I do it wont disappear. The pain is horrid.. I am on tramadol too. And that is like putting a band aid on a cut that isn’t bleeding . It doesn’t actually do anything.. I cry every day , walking is a joke and I am getting very depressed.. My question is how do you approach a dr for help. My rheumy does not do the pain med thing , so I will have to go to my personal Dr.. But I am scared to ask for a supply of pain meds.. Will he do it ? Will he treat me different .. How do you approach a dr for what will be a constant supply of what the world now deems BAD !! I am at wits end , diagnosed in 2000 , I have tried everything and was allergic to all biologicals. Right now The Orencia has stopped working . The methotrexate , steroids hydroxychlor and ibprofins are not working any more. I am depressed and just to my wits end in dealing with pain.. I have had to stop watching my grand babies and driving , just living a normal life is out !

  • Connie Rifenburg
    4 years ago

    Jeannie Lopez, after reading your post, my eyes teared up. I am so sorry for your situation right now. Please try and find a different RA doctor. You need management of your pain as well as management of your RA symptoms. You generally can’t have one without the other.

    A Dr. who refuses to deal with narcotics for their patients is selfish and has no right to call themselves a true doctor. I can’t imagine my RA dr. not talking with me about all areas of my RA including treating my pain. Do you have someone that can be your medical advocate right now while you are in a flare?

    I know I lived through a 2-yr flare and during that time, I don’t know what I would have done without my sister working with me and my doctor – making decisions for me when my pain was so severe I was writhing on the bed. Do you have a daughter, son, friend that can step in and help you find a new dr who also deals in narcotic pain management?

    The only kind of pain mgmt my RA dr. won’t (can’t) do is the type of injections into the spine. She does injections into my knees, shoulders and without those and also finding a narcotic (which I fought taking for several yrs) that worked for me (oxycodone 15mg, twice day) I think I would have given up on life by the end of my 2-yr flare.

    I do understand how you are feeling. Please let us know if you have gotten any relief by this time. And if possible, get someone to be your ‘health surrogate’ during the most difficult times.

    Don’t give up. There will be a light at the end of the tunnel, just try to keep moving forward. Any one of us with RA could be in your shoes at any time, due to a Flare.

    Sincerely,
    Connie

  • Torrie Arnold
    4 years ago

    I’m so sorry you are in so much pain right now. Please don’t be afraid to talk to your doctor. He is supposed to help you. Take control of your care. If for whatever reason your primary won’t, find a pain management specialist. Don’t give up, don’t ever give up.

  • Jane Burbach
    4 years ago

    My rheumatologist will not prescribe narcotics. Finally during a bad flare over the holidays, she prescribed 50 mg tramadol. It doesn’t help much for RA pain but it definitely helps with my attention and fatigue issues. Strange. Turns out it is chemically similar to Straterra, which is used to treat Adhd.

    Most of the people I know with RA are prescribed some level of narcotic for pain relief. Some have complained about being treated like druggies at pharmacies. Family members often don’t understand either.

    It is really sad that people who need pain meds due to chronic illness are stigmatized in the media because of recreational drug use which can devolve into heroin addiction.

    We need a consistent voice to lobby for us.

  • Wren moderator
    4 years ago

    Rheumatoid arthritis is a life sentence of variable, often severe, pain, even when the disease is being successfully treated. That means those of us who have it need a lifelong, variable prescription for narcotic pain medications. Maybe one day they’ll come up with a form of pain relief that 1) doesn’t have dependency as a side-effect, 2) isn’t as dangerous as narcotics, and 3) works as well or better than they do to relieve RA pain. Until then, I want to have reasonably easy access to my pain-relieving medications, take them responsibly, when I need them, and do it without any side-eye or self-righteous guff from others who don’t live in my skin or know what my pain is like.

  • Jane Burbach
    4 years ago

    You nailed it. Most of us live with some level of pain on a daily basis despite treatment. And it is not fair for us to be treated as drug seeking, hypochondriacs, or worse.

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