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."
Right now, what RA tips would most be helpful for you?