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Just Add Exercise?

I recently found myself suddenly in the middle of a heated debate about opioids and pain treatment via an E-mail thread, surprisingly made up of other patients and patient advocates. The arrogance and condescension with which one particular person tried to tell me that opioids don’t help chronic pain kind of shocked me. As a fellow patient, shouldn’t he know that each patient, each body, is different?

Here’s an excerpt from the E-mail:

“No one, will not develop a tolerance to these medications if they take them. Some call this addiction. For chronic pain, these medications long term make the pain worse, causing aggressive seeking behavior. Yes, they will temporarily relieve pain, but when the drug effect wanes the pain comes back worse. They are not indicated for chronic non-cancer pain. The CDC is correct about these recommendations.”

If I argue that opioids do help my pain in ways that other treatments can’t–shouldn’t he believe me? I was continually dumbfounded by the comments of this person, and I got more and more riled up, trying to explain about the people I know, my friends, who are suffering because of the opioid crisis and government crackdown limiting access to these drugs. It didn’t matter. Feeling as though my pain and struggle of 20 years with RA meant nothing, I fumed, trying to figure out what to do.

Well, what I wound up doing was nothing. I quit replying and just left it alone. Was that a cowardly way out? No, I don’t think so. It doesn’t mean that I can’t and won’t come back to the conversation; I just realized that I was getting very angry and emotional and I want to have rational and positive conversations about this topic.

My final E-mail response:

“Again, with PERSONAL EXPERIENCE, I have to disagree with you. Opioids help me, mostly on an as-needed basis. A lot. Especially while traveling or when I have to be on my feet a lot. They don’t make my pain worse. They haven’t yet, anyway. Telling someone who lives with a painful autoimmune disease who has years of experience taking several different medications, opioids included, that they are wrong is really offensive. I have to say it. I feel like my experience and my intelligence is being dismissed. It’s your choice whether to believe me and other people like me, of course. We are not being believed or validated and that’s a big problem in general.

I am also aware of the biologic and scientific mechanisms to how opioids work on the brain and body. My pain clinic provider is also aware of this and we discuss it quite a lot when talking about the state of my RA, my RA treatment plan, and my pain treatment plan.

*AND – before I began taking opioid medications, exercise, and yoga, etc, were still NOT effective treatments for the type of severe pain that RA caused/causes. Not even close.”

RA chronic pain and the opioid crisis

How the opioid crisis is affecting chronic pain patients is a serious matter and one that needs to be discussed carefully and intelligently. People are suffering, and not just the opioid addicts. We chronic pain patients, who are not addicts or criminals, also need to be acknowledged and heard. While I completely agree that opioids can be dangerous and can ruin lives (and they have), I don’t agree that they should be rigidly limited and restricted for everyone in the same way–not unless there is something just as effective available that can take their place. And no, exercise and endorphins aren’t going to cut it.

During this E-mail exchange, my opioid opponent kept throwing out links and scientific information about how opioids work and what they do to your pain receptors, etc. He also very helpfully included a link to an NPR article about exercise and natural endorphins working “better” than opioids. While I would love to believe this, my real life experience tells me otherwise.

But first off, I started feeling a bit condescended to when he began educating us (me) because I already know how opioids work and I’m well aware of their potential long and short-term effects, which aren’t good. That isn’t what I was talking about. I was trying to stress the plain fact that there are many people suffering from severe constant pain now who have little or no way to get relief. And I think this is a problem.

I also know that when I’m having an RA flare-up, no amount of exercise, yoga, or meditation will help. Exercise can hurt, actually. This is bone-deep, I-want-to-scream pain. This is sobbing, breakdown, I-want-to-die pain. This is cursing God pain. Don’t belittle or diminish it. And until you have walked a millimeter in my ugly orthopedic shoes, don’t tell me what my pain feels like.

See? I’m still angry. But we need to keep talking about this, despite anger and passionate feelings–or maybe because of them. It’s crucial we keep discussing this issue and that all voices are heard and believed. This includes patients who genuinely and desperately need opioid medication right now.

We are losing lives every day to opioid addiction and I do fully support patients finding ways to not take these drugs. But I wonder, how many lives will be lost because people can’t cope with their pain? There’s no simple answer. I just really don’t want to “throw the baby out with the bathwater” before we get a new “baby.”

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

  • MaryB
    10 months ago

    Angela, I’ve had the same experience with Crohn’s, There are those people who “know” all about things without asking or researching anything. Luckily because I’ve had this with the Crohn’s, I was already for this same thing with RA. It gets to be annoying but ignoring this attitude/person really does help sometimes. I don’t get a “high” from my pain med, and it is used as needed. i have a lifetime of experience with meds,etc. but some people know more!! I’m sure you know what I mean. Hang in there. You have lots of company.

  • pugpen
    11 months ago

    Thank you Angela for a well written article that expresses many of my own concerns regarding opioids. I was dx with RA in 1999, had to take social security disability a year later and leave my well paying job as a result. I have been on opioids for most of that time. They have always worked well for me (at taking the edge off of severe pain) & I have never once taken more than the prescribed amount, nor have I ever felt “high” as a result of the pills. Plain and simple they work for me and now all chronic pain patient’s like us have to face all of these issues surrounding this opioid ‘crisis’. I pray, everyday, that there will be a effective, affordable resolution to this huge problem. But when the government is involved, I doubt that’s going to happen.

  • kat-elton
    11 months ago

    Angela, Thank you for this article! I’ve been paying attention to all of this too, and like you, I’m very frustrated. I’m reminded of when biologics were first discovered, or when steroids were found to be so effective, and the medical community pumped their arms in victory claiming we would all fare much better if not be cured. With the developments in understanding pain, it is now, “all in our head,” because that is where pain is processed, so the answer must be to think positively, do yoga, and our chronic pain will be cured. I understand the enthusiasm, but shudder when I hear some of the confident proclamations about chronic pain from people who haven’t experienced it. Bottom line, like RA, chronic pain is a complicated issue, and although we know more about it than we did 10 years ago, we have a long way to go to figure out how to really help. Thanks again for this article.

  • rockcandi
    11 months ago

    It is astonishing to me that a fellow patient would be so judgmental and condescending! Exercise?!!! I wish I could! There is no way I’d be able to take care of my son OR MYSELF without using an opioid pain medication. I’m 36 years old and have had JRA for 30 years already! Can you imagine what damage that’s been done to my joints, tendons and ligaments? I take something that’s only partially activating in the brain therefore it only partially helps my pain. I know that no opioid would take care of all of my pain but would still like to try something different. Only, I’m afraid to go to a different doctor or a pain management center bc of the government crackdown and the possible disbelief of a physician about how much pain I’m actually in. My current doctor won’t prescribe anything different but at least he believes me even though it’s “invisible” to him. I’m sorry you had that kind of reaction from someone who should be more understanding and considerate.

  • susan.nasuti
    11 months ago

    People who say things to me like that person did to you simply become ex-friends and receive a lovely facebook block. There are too many stressors in our lives already for them to be allowed to make our stress pile higher. Continue to protect yourself!

  • karenkaye
    11 months ago

    I appreciate your response/ comments, Angela…excellent job!
    I have been on a opioid patch (every 3 days) for years for chronic pain. I am dependent not addicted and not tolerant. It allowed me to live with a 2-4 level on a daily base which was great for me. My body apparently worked well with opiates. Every body is different!!!!
    I am now titrating down on my opiate use with the goal of going off completely. I want to do this before the government forces me to do it. Also I’m concerned about long term effects on my brain so I made the choice to go off them.
    Opiates worked for my chronic pain….period.
    I hope my pain level stays manageable without them. I exercise three to four times a week for years now….while on opiates. Exercise helps me emotionally more than anything else.
    Why do people have to judge others that are like them? I hope that support and respect would be the options we choose…not judgement. I send healing energy and compassion to all of us, as we are each doing the best we can for ourselves.

  • Indigo2
    11 months ago

    My doc will not prescribe opioids or prednisone which are both very helpful with a flare up…just suck it up…warriors we are!

  • Linda
    11 months ago

    Sigh. I need my opioids. Do I want them? No. Do I want the low grade nausea and the constipation? No. The sleep disturbances? No. How about the dependence – not addiction – issues? No. Pain patients do not get a “high” from their opioids. We have no reason to take them other than the staggering, life altering pain. Of all deaths in 2017 only 3% were from pain patients under care of a doctor. We need to address the issues, not pile on the legitimate pain patients. The only thing that will increase if opioids are taken from pain patients is the suicide rate. Yes, that IS how bad this hurts. I’ll gladly flush the opioids if you find me something that works better. No, Bayer Back and Body is not it.

  • Carla Kienast
    11 months ago

    Excellent article, Angela. While these won’t help your arguments with people who won’t listen, I keep coming back to two key points. (1) We need to separate the data/focus from illegal opioid use — like heroine — from the legitimate needs of patients in chronic pain — the numbers are astounding; and (2) the war needs to be against ADDICTION, not opioids. Thanks for continuing this important conversation.

  • Lawrence 'rick' Phillips
    11 months ago

    Angela, there are no good answers. I wish there was. I have to believe that many of us enjoy the benefits of opioids while at the same time wishing we never had to use them.

    Perhaps someday soon these crazy email exchanges and the need for opioid pain medication will both be long ago memories.

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