Storify: Chronic Pain, Disability, and Opioid Access

Storify is shutting down in May and has informed users that we have to migrate our content elsewhere if we wish to save it. This is one of my old threads.

[Content Note: Pain, Disability, Addiction, Self-Harm]

First, I'd like to talk about what chronic pain sufferers currently live with under the CDC's rules of mandatory 3-month doctor re-evaluations and 1-month prescription limits on opioid scripts.

I couldn't sleep until 2 am b/c of a plain flare up. Had to take an extra opioid. Cried because I'm trying to save them. Still have to work. Alright. I'm hurting and late for work, but I promised a rundown of how hard it currently is to get my meds.

I live with a chronic pain condition. I'm on a lifelong prescription to Norco, an opiod. (Hydrocodone cut with Acetaminophen.) The rules have changed in the last year such that I have to get 1-month prescriptions and 3-month doctor reevaluations. The doctor "reevaluation" is a joke that costs over $200 each time, is physically difficult to attend, and exposes me to germs. Sick people are in my doctor's waiting room and I essentially have no immune system after years with my condition.

The doctor isn't allowed to call in an opioid prescription. I have to physically take it in once a month. More driving, more germs. Fortunately (!) I have a "mail-in pharmacy" option that will give me 3 months at a time. Let's talk about that. Because most opioid abuse are STOLEN pills/scripts, disabled people are being treated as acceptable losses. Let me explain:

If the paper with my prescription is lost, stolen, or damaged, my doctor CAN'T write another. If the pills are lost in the mail or stolen (the bag CLEARLY contains pills), my doctor CAN'T write a new script for those 3 months. If the pills, once in my home, are stolen or damaged, my doctor CAN'T write another script to replace them. I need these pills to live. The scariest moment of my year was when my pills spilled on the floor near a dropped drink.

The @CDCgov knows that opioid abusers STEAL our pills, but we're considered acceptable losses in the War on Drugs. Now I'm having to look into buying a fireproof/floodproof safe just to protect my pills. The ones I need to live. I'd love to see @HillaryClinton or @BernieSanders talk about how we people with chronic pain are acceptable deaths to the @CDCgov.

Note: Doctor-Patient confidentiality does NOT exist for those of us on opioid prescriptions. This makes it difficult for us disabled people to talk about the issues we have, and makes it nearly impossible for able-bodied people living with addiction to seek the help they need, due to the specter of legal intervention in the room with us. Oh, and you have to sign a waiver with your doctor. They can contact the police if they think you're abusing your drugs. Which obviously makes it difficult to even TALK about drug effectiveness, because you're afraid of looking like an abuser. HIPPA doesn't protect us from being reported to police by our own doctors. This is life with chronic pain.

@civilwarbore: doctor-patient privilege isn't recognized at the Fed level in the US anyway & many states limit it already.

Note: All of the above is what we ~currently~ suffer through under the rules of mandatory 3-month re-evaluations and 1-month prescription limits. Below are the new CDC guidelines which are WORSE in a pretense of addressing opioid addiction among able-bodied users. I want to note that the above is what I ALREADY go through. Here are new (worse) guidelines.

@thelionmachine: CDC recommends a "3-7 day opioid prescription" are you fucking kidding me? I cannot go to the doctor every week.

I also want to note that a 3-day prescription even to just "check and see" at first is laughably insufficient. When you've been suffering for weeks, months, years, 3 piddly days on an opioid may not even register at first. So then the doctor now will say "oh that didn't work, thank goodness we didn't waste a longer script on you". When you need more time!

@Auragasmic: They view chronic pain as something most people will "get over", as though opiods are being given like candy. (They're not.)

*nods* This myth that people are going in with new pain and getting 90-day scripts for opioids is bunk. The onerousness of the process is treated like a feature. "Only the REALLY sick would do this!"

Note: Opioid deaths among able-bodied people abusing these substances do happen! But restricting access to pills does NOT reduce those deaths. Rehabilitation, counseling, and addressing the underlying causes of the addiction ~does~ work and saves lives, but the process is expensive and insurers don't want to cover it. Deaths are cheaper, and hurting people with chronic pain is a way of making it seem like the CDC has "done something".

Lastly, there are known effective treatments to opiod addiction for able-bodied people. Insurers just don't want to pay for them. The @CDCgov knows this, too. Hurting chronic pain sufferers to pretend they've addressed the problem is cheaper than a real solution. I need EVERYONE to answer "we have to do SOMETHING" with "there are proven treatments to opioid addiction that insurers won't pay for".

@RutiRegan Rehab, counseling, and addressing the underlying cause of the addiction. High rate of recovery--but it's expensive.

I repeat: These policies to limit access to medication result in more LOSS of life. Able-bodied people struggling with addiction die from lack of access to rehabilitation AND disabled people struggling with chronic pain die from lack of access to pain relief. If I seem very passionate about this, I apologize; it's literally a matter of life-or-death for many of us. Self included.

[TW: harm] Almost every chronic pain sufferer I know has a death plan in place for if their meds get cut off and they can't get back on. I know that probably sounds dramatic and very Ophelia-in-the-water, and I'm sorry I can't make it more plain. Chronic pain is just THAT bad. This is difficult for us to talk about, because we risk being labeled suicidal when we're just being realistic about life quality.

Note: Pain pills aren't "addictive" in the sense most people understand the word. I need people to understand that opioids like Norco aren't "addictive" in the classic sense you may be thinking. Most of us with an opioid prescription actually UNDER-medicate ourselves because we try to "save" pills or because of stigma. The pain we feel when off our medicine isn't "withdrawal" in the classic sense; it's just our condition reasserting itself. The CDC talks about addiction to hydrocodone like you get the shakes or something if it's taken away. That's false and stigmatizing. A lot of the narratives around medicinal opioids are, well, like pretending that marijuana is the same as cocaine. Fear mongering and false. I've been on the same prescription to Norco for years. This isn't something that I have to "escalate" in order to get the same effect. Nor do medicinal opioids make us "high" or "stoned" or whatever mental state you associate with drug use.

CORRECTION: I have since heard from opioid users who DO suffer classic withdrawal symptoms when their medications are denied to them. This is different to my experience described below, which should be read as my individual lived experience and not a universal truth. Physical dependency is different for every individual. I apologize to anyone rendered invisible by my framing of the situation below. Thank you.

If you want to contact your government representatives, you can find them here. Sample script: "I oppose the @CDCgov guidelines restricting patient access to medicinal opioids, a policy that harms chronic pain sufferers. For the problem of opioid addictions, I support government-funded rehabilitation and counseling, which is effective and saves lives."

Anyway, thank you all for listening today. It means so very, very much to me.

An update added later in the month here follows. I'm having to spend this week doing my three-month "check in", so this seems a good time to rez this thread. Even the own nurses are confused why I'm coming back in if "nothing has changed". CDC rules make no sense to ANYONE.

Theoretically, the doctor is supposed to check if maybe I don't need pain pills anymore and then back me off. This will NEVER be the case. But if she decides it is? I can't effectively argue. The only "appeal" is shopping for new doctor. There's no "confirmed chronic pain" list.

So this is an expensive and worthless 3-month exercise in dread, fear, invalidation, and dehumanization until I die. Thanks, @CDCgov! *sigh*


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