Skip to Accessibility Tools Skip to Content Skip to Footer

The War on Opioids Comes Home

“The primary cause of unhappiness is never the situation but your thoughts about it.”

— Eckhart Tolle

I ran across this quote recently. And, as quotes about living our lives often do, it struck me where I live.

Here’s why. I’d gone to my doctor (my primary care provider) for an annual checkup the day before I saw the quote. This was an important appointment. My rheumatologist had informed me a few weeks earlier that she would no longer prescribe opioid analgesics (with the exception of Tramadol) for pain caused by my rheumatoid disease. If I needed them, she said, I must ask my PCP to prescribe them for me.

This, of course, was a shock. My previous rheumatologist, who left the clinic last fall, had always prescribed opiates—at the lowest dose possible, and with caution and care—for my RD pain. After all, RD causes sometimes severe and unremitting joint pain—it’s one of the disease’s major symptoms, maybe even the major symptom. And while opioids have never completely relieved that pain for me, they’ve always damped it down and made it easier for me to get on with my life in spite of it.

I’ve never abused them, and I’ve never asked for larger doses.

After my annual exam, I told my doctor what the rheumatologist had said. To my surprise—and considerable consternation—she said that she wouldn’t prescribe opioids, either. Instead, she recommended large doses of fish oil and grapeseed extract in addition to a new prescription for gabapentin, and nerve-pain medicine.

When I protested, she launched into an explanation of the government’s recent crackdown on the diversion and abuse of opioids, the large number of opioid-related deaths, and how these drugs change the brain’s response to pain and lower pain thresholds in those who take them.

“This is in your best interest,” she said firmly, and went on to inform me that the right thing to do was to treat the underlying disease that was causing my pain.

I didn’t say “duh,” but I thought it. I told her I’m taking four powerful DMARDs, including a biologic, for my RD, and had been for several years. These had, so far, not relieved my pain nor cured my disease. It’s incurable, after all, and while I continue to hope for remission, the truth is that only a few RD patients actually achieve it. Those who do frequently continue to have sometimes severe pain because of joint damage. Others achieve remission only to have the disease become active again without warning. The body’s immune system is wily. In its misguided attempt to “protect” me from my own synovial tissues, it always finds ways to get around treatment.

This seemed to fall on deaf ears. My PCP blithely told me to eat a healthy diet, work on losing weight, and to exercise daily, since all three could be helpful in dealing with RD. She also recommended acupuncture, if I could afford it. I can’t.

I left her office gobsmacked and feeling more desolate than I’ve felt in years. I’ve had RD since I was 31, and I’m six month short of 60 now. With the exception of a blessed and very unusual six-year remission that spanned the late ‘90s and early 2000s, I’ve frequently had severe pain that only opioid medications could relieve, and then only partially. How, I wondered, was I going to live with this pain now? And for the rest of my life? After all, this hair-on-fire opioid prohibition won’t end anytime soon.

I have another appointment with my rheumatologist coming up. I’m going to ask her for a referral to a pain clinic. It’s possible (though not guaranteed) that they’ll prescribe opioids for my pain, and things will go back to normal. There will be a price, of course: constant monitoring, urine tests on demand, pill counts, and contracts. I don’t like the addict/criminal treatment, but I guess if that’s what I have to do in order to relieve enough of my pain to lead a relatively normal and productive life, then I’ll do it.

In the meantime—and into the future—I’m keeping Tolle’s quote: “The primary cause of unhappiness is never the situation but your thoughts about it” uppermost in my mind. Like most people, I can easily make a bad situation worse by being pessimistic and allowing myself to dwell on the negatives. How I think definitely influences how I feel.

Yet this situation is real, and the consequences of living without adequate pain relief are serious. Keeping pragmatic hope alive will make a real difference in how I handle it going forward.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Patricia Darstein
    3 years ago

    llzelm you are so right! I just would like to know how many people actually taking these Opioids for really pain issues overdose? It’s the people that don’t need them who abuse them isn’t it? I’ve tried Gabapentin and I can not deal with the side effects. I am now trying Cymbalta and suffering from the MOST painful leg cramps I have ever had in my life. It feels like a constant surge of “Charlie Horse” pain going up and down my legs making it difficult to walk and impossible to sleep. Guess I can’t take that now either. So my quest continues to find the right mix of non-Opioid meds to relieve my now diagnosed Fibromyalgia and Rheumatoid. Believe me, if Opioids didn’t help I wouldn’t take them!

  • llzelm
    3 years ago

    Patricia, I agree with you completely and I am not in nearly the distress you are in. I do take prednisone and oxycodone. I also take gabapentin. But frankly without the occasional tiny oxycodone, I would be pretty miserable and rarely sleep. The whole opioid thing has of course gone overboard again as most things seem to do. Remember cough medicine that you now have to turn over your first born child to get a bottle of? I have contacted my Senators and my representatives about this. Let my doctor be my advisor and not the government.

  • Patricia Darstein
    3 years ago

    I live in Buffalo NY and it’s even worse here. I have Rheumatoid Arthritis, Fibromyalgia, Osteoarthritis,and a host of other issues I can’t even spell let alone pronounce. My Rheumatologist also cut me off as far as pain relief goes after 10 years of help. He says there are people taking less than you in much worse situations. Isn’t everyone different? My biggest issue is there are NO pain management doctors available here. My doctor handed me a list of so called Pain Management facilities, I called all 5 on the list and they either do NOT take new patients or no longer practice. Also, at the bottom of the list was another list of “Opioid Addiction” centers, Aren’t you the doctors who put me where I am right now to begin with? Yes, I’m addicted but YOU put me here.
    I don’t know what to do. My Primary Dr. wants me to go to a Yoga Specialist (that is how I found out I had Rheumatoid to begin with). Severe swelling of several joints after a session. If Yoga were the answer I’d be teaching it. I’ve taken ALL the drugs available Biologics, Gabapenin, Methotrexate, Prednisone all gave me TERRIBLE debilitating side effects. I’ve tried Acupuncture (joke and expensive). Look, I’m poor, I just can not afford things. So here I sit two young boys and I can hardly move. I can’t sleep because my doctor took away my Morphine and I’m pretty sure I am going through some serious withdrawals after 10 years of taking these “highly addictive” helpful pain meds. I don’t know where to go, what to do, how to get any relief or help. Why do WE (the ones with pain) and disease have to suffer because of other people errors suicides, etc. United States is “officially” Communist. We are controlled by our government and the officials who do not and have no painful life debilitating illnesses. What happened to “by the people, for the people?”
    By the way, I can’t even go to an Emergency Room for help, they too will NOT distribute any pain medication without your doctor’s authorization who will of course deny me anything.
    Look, I don’t want to be addicted to anything, I truly do not but how am I supposed to function? Okay, so tell me I should move? Pick up everything, my husband has a great job (that pays little but provides some of the best benefits in our area) and my boys love their schools and are both excelling in their classes. My 7 year old has a learning disability and some underdeveloped muscles so moving is VERY difficult. We have family here who helps when they can. What do I do? Help….

  • Erin Rush moderator
    3 years ago

    Hi Patricia. I am sorry you are experiencing this. Your situation is the exact kind of thing that should *not* be happening! These new laws and restrictions were meant to curb prescription opioid abuse, but this should not restrict people with a genuine need from getting them. If you feel truly addicted to these meds, that is something to consider seeking help for. However, I think many in our community rely on these medications to function, but don’t consider themselves truly addicted. It’s a fine line. I mean, many asthmatics can function without a rescue inhaler, but does that mean that they should? Probably not. In the same way, people living with severe, chronic pain should be allowed to use these medications in controlled, responsible ways. I wish I had some great answer for you that would solve your problems. Unfortunately, I don’t. It sounds like moving is not a realistic option for you and your family and that’s ok. Please don’t give up hope. I don’t want you to think I am offering medical advice in any way, but New York is a state that allows medical marijuana usage. Please don’t take this as an endorsement of marijuana use. But, in the interest of having a decent quality of life, you might want to consider options that may have seemed unacceptable before. I will also include some information on natural treatments that can help with inflammation and pain. But, I am also realistic. Band-aids don’t fix bullet holes and green tea won’t make everything better for someone living with RA. Here are some outside-the-box ideas that merit some consideration — https://rheumatoidarthritis.net/natural-remedies/willow-bark-capsaicin-fennel-burdock-griffonia-simplicifolia/ and https://rheumatoidarthritis.net/natural-remedies/aloe-ginger-st-johns-wort-black-mustard-stinging-nettle-cannabis/. Some of these treatments (like turmeric) have honestly helped our community members. But, everyone responds differently to treatment, as you probably know! What works for one individual may not work for you. I sincerely wish you the best of luck. You are in a tough, tough position that defies quick fixes and pat answers. I hope you know you are not alone! Many community members are facing the same situation as you. Please don’t hesitate to reach out if you have any questions or concerns or even if you just need to vent! We’re “open” 24/7! Wishing you a good night, Erin, RheumatoidArthritis,net Team Member.

  • Kat
    3 years ago

    What a timely post for me. My husband has chronic migraines and I have JRA and both of us have needed to use opioids at various times for severe pain related to our chronic conditions. Just last week we were at an MD appt. (GP) for my husband and asked for a new bottle of hydrocodone. His last request was a year ago- even so we were hit with the exact same lecture you were. He mumbled some things about trying to manage stress along with his lecture about the opioids not really helping anyway. Meanwhile, my husband is allergic to all migraine meds and lives with a pain level of 5-6 when no migraines are happening, and goes to a 10 during a migraine episode. This issue is not a new one, I recently did a bit of homework and found out this is the 3rd time since the early 1900’s that we have had an “opioid epidemic.”The problem of pain is not a new one and not going away any time soon. Yes, opioids change your nervous system over time resulting in more pain, but so does pain itself. Living with chronic pain can result in central pain syndrome. Another point is that opioids are not unique in this effect- many, many medications that are commonly prescribed, including prednisone, change the body in ways that we become dependent on that drug, or need higher doses for the same effect. I wrote a blog about this myself- http://www.katelton.com/blog/49-Chronic-Pain-and-The-Opoid-Controversy-What-People-In-Pain-Need-To-Think-About.html
    I also use MMJ for my sleep because my pain has created chronic insomnia, and I can attest to the positive and for me, nearly miraculous response my body has to this natural medicine. Sending hugs and positive thoughts your way!!!

  • Wren moderator author
    3 years ago

    Hi, Kat,
    Thanks so much for commenting. I’ve also read about how the use of opioids has come full circle at least twice over the last 100 years or so. They’re either “evil” or “beneficial,” and we can never seem to reach a happy medium. My hope is that over time, perhaps we will. And you’re so right about pain being at least a big a problem as the use of opioids to treat it. I think it’s much bigger, myself.
    I’ll take a look at your blog post. Thanks for sharing it and for sharing your and your husband’s experiences. I’m loving the virtual hugs and sending some back your way. 🙂

  • Kathy B.
    3 years ago

    You should have good luck with your pain doctor. I know I did. Since I started seeing him, he has gone out of his way to make sure I have what I need. Yes, I have to do the urine test at each visit. That is the least of my worries, because I know I am not abusing the Hydrocodone and Tramadol ER that he has prescribed. He even suggests other options for meds that my Rheumatologist has prescribed in that they are extended release and/or a topical for my knees to help with the pain. I have had injections in my back and so far they have helped some. It was a sciatic issue that prompted me seeing him as my RA Dr. and my PCP would not or did not want to do anything about it. He has been a Godsend. I have had RA since I was 22 and I am now 49. I have recently had the pleasure (sarcasticlly speaking) to add Fibromyalgia to the mix. I am still in pain on a constant basis, but not nearly as bad as I have been. I have good days and bad days and then the “OMG I want to die” days. But I still keep plugging away. Have 3 kids still in school (and not college).

  • Harry Gruene
    3 years ago

    I gave up on my pcp as all they could prescribe was 500 mg of ibuprofen.
    I go to the ER,since I have severe RA and the only thing that helps it at all is prednisone, there I can get 20 tylenol 3’s, that is typically good for 2 or 3 months when the prednisone isn’t able to help with the pain. also can get 20 valium at the same visit as I now had a sciatica attack down my left leg. and I thought RA was the most painful thing i’ve ever experienced, that pain was on another page entirely and I contemplated killing myself to stop that sheer agony, but dilaudin and toradol stopped it thank god.they also gave me 5 days of 50mg of prednisone, just finished the last dose, so im back to my regular 20, which I often break in half as I hate prednisone and take as little as I can get away with. I have come to find out the ER is a much better avenue in the need to having pain treated.

  • Connie Rifenburg
    3 years ago

    First, I am so sorry you were treated so poorly by your Dr. I have been with my same Rheum Dr. for 13 yrs and can’t imagine her denying me the oxycodone I take twice a day for the past 3 years.

    My brother died of abuse of presc. drugs, so I am acutely aware of addiction. But I have been on the same narcotic dose for 3 yrs. Yes, I believe I’m addicted to the oxy – I know because if I should sleep late and my time between the two pills I take runs more than 8-10 hrs or so, I begin to have (what my Dr. calls, beginning withdrawals–sniffles, pain, nervousness). I was horrified at this the first time it happened. But she assured me that I was not an ADDICT.

    Yes, I was addicted to a particular drug for the relief I get from the pain and the fact that I am taking “just” enough to dampen the worst of the pain. But I’m not ‘seeking’ drugs. I’m not trying for the ‘high’. I know that I can get relief from one 15mg in the morning and one at night. But could I just stop? No. And that’s what worries me.

    It is why I waited as long as I could before starting my first narcotic. But as many of us know, there comes a time when nothing else works. I finally came to the conclusion that I had to accept that I would probably have to take a narcotic the rest of my life.

    Once started, it’s very difficult to stop. I had been given Klonipin, Lyrica, Vicodin, Valium, and other muscle relaxers and I never wanted to stay on any of them due to the way they effected my thinking and feeling. I was able to come off of all of them slowly, so I know it is possible to do. But Oxycodone is one of those that I may never be able to come off of unless they discover a cure for RA. (even then – yrs of disease has already done permanent damage so I will always have pain)

    So what is the answer? I will say that my son’s friend who was diagnosed at age 30 w/RA is purchasing MJ thru the mail. (it’s still illegal here) and so she endangers her family by purchasing it. But she has sworn to me that she tried all the mentioned healthy things, eat, exercise, etc. and nothing helped after 1 yr she was getting worse and so she tried MJ. She says she uses it once in the morning and is pain free all day. She is not ‘high’. She has 3 children/husband. I wish I had the wherewithal to move to a state that it is legal just to try it. Maybe one day it will be found to be helpful for all. But until then, oxycodone is legal and MJ is not.

    Those of us on a narcotic can only hope that this new crackdown on restricting narcotic pain relief for chronic disease will be short lived and the real possibility that MJ could one day be a legal alternative to pain relief for all of us.

    Meanwhile, please let us know whether you have been able to get back on your pain meds as you need. I can only pray for your relief.

  • RHPass
    3 years ago

    Gobsmacked is an understatement! I left my primary docs office in tears when this started! not only had my rheumatoligist given me ‘the word’ on the pain meds, but it had only been a year that I was with my primary. she hardly knew me. the ‘rheumy’ had been my doctor for the 17 yr journey since day 1! I am one of the most straight forward people I know of (I don’t even have a ‘poker face’…i simply cannot lie!) and when I was handed the 4 pg contract I lost it. HOW was I going to deal with this pain? luckily, I did leave with my paper (prescription) in hand. the attitude our leaders have that if they can’t stop the criminals and abusers, they will clamp down on the ones that need it most is absurd. I realize there is a major drug problem in this country. I live in an area that has an astronomical drug problem (and high poverty rate).
    I now see a pharmacy specialist every 3 months, alternating with primary doc visits. BE VIGILANT! BE INSISTANT! someone does need to stand up for those of us that NEED relief…why not us ourselves?

  • quq79g
    3 years ago

    Instead of addressing the problem of illegal users they penalize the ones who use their prescriptions as written. I feel as you. I believe my pain management Dr is about to cut mine. Good luck and know you are not alone in this battle. ✝

  • wheaten
    3 years ago

    First of all, I feel so badly for you regarding the pain meds. Yes, Eckhart Tolle’s quote is a very good one. I have been in remission for a few years, who knows how long this will last, but fortunate that I am not taking any meds at the moment. When I was taking the biologics, etc. I had to be taken off due to extreme side effects. Outside of pain meds or NSAIDS for pain, when my joint pain is bad due to disease destruction or from surgeries on my joints. Everyone has a different story when it comes to this disease and what works for me may not work for you. I’ve found that being very strict with my eating habits, exercise, sleep and keeping stress to a minimum have been very beneficial for me. Also, using meditation. I do take supplements but try to get most of my nutritional needs from whole foods. I guess I wanted to write a note just so that you would know that I and others understand what you are going through and to tell you that you are in my thoughts. Hopefully, the pain clinic will help you, and if not with opioids then in another way.

  • Angela Lundberg
    3 years ago

    P.S. Eckhart Tolle is great. 🙂

  • Angela Lundberg
    3 years ago

    I can relate to your article so much; my doctors have become much more strict about prescribing opiates–even at a pain clinic. I’ve also tried Lyrica and Gabapentin and both didn’t work, plus I was worried about what THOSE drugs were doing to my brain and body. You’re right, sometimes you just need SOMETHING that WORKS to provide a little relief. Fish oil, grape seed, acupuncture even…is all a b.s. and ineffective way to treat really severe pain. I probably would have left that appointment feeling incredibly irritated and insulted. “Duh” is right! Don’t these doctors realize that we are doing everything we can to get and feel better without having to resort to pain medications? I agree with you–being treated like a criminal is NOT okay.

  • Bob
    3 years ago

    I have only been diagnosed with RD for a little over a year. In that time, I have tried cannabis and found that it has a profound affect on inflammation as well as pain and far fewer side effects than opioids. Perhaps, you may wish to try edible cannabis products, or take up vapeing the medicinal green weed. It is much safer than opioids.

  • Kathy P.
    3 years ago

    Wren, I’m so sorry you have to put up with this additional “jump through the hoops” just so you can have *some* pain relief. I hope the pain clinic will help.

    I have to agree with Bob about the MMJ. I’ve always had terrible side effects from the RA meds (the last one screwed my liver). I was on a cane 100% of the time and having to look into moving so I could have a wheelchair. My husband researched a lot of stuff and decided we were going to go to Colorado, just to see if it worked.

    It worked very well. In fact it worked so well, I only needed my cane to get up and down steps. So we made some adjustments so we could go to Colorado and get the “medicine” so I could continue to function upright and not break the law.

    Let me say, I’ve been on a lot of different pain meds throughout the years, and nothing worked as well as the MJ. In fact, if I have a preference, I’ll take the MJ. Unlike pain meds, it doesn’t make me shaky, doesn’t make me nauseous, actually reduces the pain AND inflammation significantly, and I don’t get loopy. The loopy part on the MJ took some adjustments of the MJ.

    Saying that, CBD, a cannabinoid compound, is the healing part and is non-psychoactive, but needs at least some THC to work effectively. CBD is legal in all 50 states, however THC is not. Recently I found that THC-a is also non-psychoactive unless it gets activated by heat. So, THC-a will be my next try when in CO, because I do not want to be “under the influence,” especially at my age.

    If the DEA reschedules it (decision soon), MMJ will be available with a prescription from a doctor. I don’t know how long it will take for doctors to become educated about it and which compounds will treat various ailments, but hopefully it will be a step forward.

    If you’re using it for pain, just remember to use the THC-a and CBD so you don’t get high. Marijuana might not be the panacea for everything and for all patients, but it might be just the ticket for many of us to function and to not be under the influence of any psychoactive effects.

  • Carla Kienast
    3 years ago

    A major part of this situation is that the FDA and professional organizations are enforcing this war on opioids through pressure on the physicians who prescribe the drugs. While physicians were once patient advocates for pain medication they are now in the position of potentially protecting their professional licenses by only prescribing the drugs for severe circumstances such as post-surgical and cancer pain. Your strategy of seeing a pain-management physician is a good one. The American Academy of Pain Management Physicians (which is a strong voice of sanity in this seemingly one-sided discussion) has a number of position papers that invite reason and compassion as well as the appropriate prescription of opioids. They can be found here: http://www.painmed.org/press/position-statements/

  • Wren moderator author
    3 years ago

    Thank you so much, Carla!

  • Beth E
    3 years ago

    Wren, I’ve read your thoughtful posts for over a year, but I had to respond to this one. The panic over prescribing opioids is really problematic — so many people truly need them, not just for RA but for many medical issues. Yet, once again, instead of judging each case, we are handed a “one size fits all” policy, which means that doctors will resist prescribing pain medicine to people who need it and recommend diet, exercise, and acupuncture instead. If yoga would take care of my RA pain, believe me, I’d be doing it 14 times a week! I think it’s important to get the word out that opioids are sometimes absolutely necessary. I am currently on methotrexate and a low dose of prednisone, and it’s worked miracles for me — now, but I know that could change. Thank you for sharing your story. – Beth

  • Poll