Pain

Pain and a note-rant about the opioid epidemic

Before I begin, I will cover the hospital saga at some point soon, but this felt like it just had to be written. I started months ago but now is the right time.

Pain

lets talk about pain for a minute. There’s a lot of different types of pain. Emotional, physical, chronic, acute, you get the gist of it.

But chronic pain is another world compared to the rest of the world. Let me explain.

This is no way is to downplay anyone else’s pain. Trust me, I know you’ve experienced it, hell most people have in some way shape or form. But pain that never goes away, never relents, causes you to feel insane, is a different creature.

Chronic pain means the world I live in involves a LOT of breathing, Now I am no expert but I’m pretty sure I could lead a Lamaze class at this point. Imagine going to a birthing class everyday, every week for like a decade (more like 13 years). You get the picture. But this doesn’t just mean I tend to know how to breath, it also means that if I’m screaming my head off in pain or laughing hysterically (one of the many odd ways that my body copes with extreme pain), it’s some next level shit.

Chronic pain means that no one wants to treat me. I’m considered high risk for addictions because the amount of pain medication required to make a dent in to me is much more than average. And of course, some idiot out there’s solution to chronic pain was “no serious pain meds, because it never goes away, lets give them nerve blocks or surgery or other terrible medicines with horrifying side effects”. And it doesn’t matter if I broke my foot, they’ll take one look at my chart and go “ah, a chronic pain person, you’re fine, here take Tylenol, you’re used to it,’

Of course I am used to it. I live with it every day, but that no excuse to not treat me. I’m not a drug seeker. I just want a five minute rest from the new additional pain.

My pain is a beast. It roars and overwhelms me. Sometimes I can ignore it and leave it growling in the background but sometimes it breaks through. The walls crumble and suddenly I’m screaming. Or laughing. Or crying. Who knows? I’ve got so many coping techniques that you’ve never even heard of that I must seem insane.

But dear doctor, treat me the same as the person in the next room screaming their head off over a bruised toe. Just because I’m not screaming and crying doesn’t mean I’m not in pain, I’m just better at managing it. My 10 is your 20. My 5 is your 10. Me being calm and collected and able to talk does not mean I’m in less pain, less severely ill, or have a less serious injury, I’ve just done exactly what you’ve begged every patient you’ve ever seen screaming their head off to do, “take nice slow deep breaths and stay calm”. So why am I not seen as being in more distress than someone else? Is it because I’m not hysterical? Should I be? Does that get me better results?

Every day I read in my support groups about patients just like me being abandoned in their hospital rooms for hours without X-ray or pain meds because “you’re so calm? How could you possibly have a serious injury?” only to learn HOURS later that someone is septic, or have 3 broken bones, or a serious injury. But we already deal with pain so we’re fine right?

I wouldn’t wish this shit on my worst enemy. It’s something inside you can’t control. You can control touching a hot plate, or a cold foot, or a bruise. You can’t control your entire body lighting up like a Christmas tree on fire inside of you. No one can. And if I could and was magically manifesting random conditions with my mind, I would have healed the world with that super power by now.

I don’t want half assed apologies or “oh I understand”, I want someone to take it and digest what I just said and accept it as my truth. Yes you can relate, or understand. Every woman who has given birth, especially SURPRISE BABY IS COMING NOW moms know, every broken bone sufferer, root canal, fallen off a ladder, person gets it to some degree. But there is a unique difference. You know it is going to end. You know one day you are going to wake up and it’s over. Normal is back. Your body has healed and you feel okay. Your knees will ache every time a storm comes or your muscle and bone will twinge with the wrong movement, but for that moment, then it fades. It will come again yes, but now you know when and why.

So doctor, please listen to me, my advocate,and look beyond just what you think you know.

Now, onto my rant. Get ready, it’s a doozy.

With the latest news about pain medication manufacturers being charged in court (still, this isn’t new, it’s been going on in cities and states for years now) for causing the opioid epidemic, I have serious thoughts and words that many may not agree with. Did the manufacturers and Pharmaceutical companies fail to inform the doctors who prescribe them fully about risks and side effects or addiction? Probably, but tell me this, has anything changed in 30 years with how drugs are repped? Nope. Try asking your doctor for a list of side effects for a medication they prescribe regularly (beyond the common ones which include “headache, nausea, drowsness, etc”) and how to come off the medication safely. I bet they can’t answer that one. We still do not have an adequate standard for coming off any psychological medication, especially SSRI’s which are notoriously hard to come off safely and often result in withdrawal. The current standard “coming off” statement? Cut the dose in half for a week then take it every other day for another week, then stop. Literally the worst advice I’ve ever heard FYI. Only steroids have a step down titration method. Why isn’t this the standard for opioid pain medication?

Add on to that, the standard drug rep (no hate to them, they do their job but they aren’t a medical professional who studied the pharmacology behind how a drug works or read the entire FDA report in most cases) has about 5 minutes to see a doctor IF they get in, and usually they dump pamphlets and samples or host a lunch and hope someone actually comes to ask questions. So really I can’t fault them. Their companies should have a standard that they require to be said and taught to doctors and doctors should follow through. But back to the main issue. The pharmaceutical companies are responsible for doing research and publishing it for public record and the FDA. However, they currently do NOT have to report what occurred AFTER the trials ended and what patients experienced coming off the drug or even how to get them off it. This to me is a system wide failure. Why would you do something if you don’t know how to stop? Would you drive a car if you didn’t know how brakes worked? Or even where they were located? No way, that’s a terrible idea right?

But by holding the pharmaceutical companies responsible for the ENTIRE epidemic and then trying to fix the “opioid crisis” by heavily restricting it so only pain doctors can prescribe them and even then they won’t, is ridiculous. True chronic pain patients do NOT want to live off pain meds, it makes you feel sick and dizzy, constipation and a dozen other problems usually come with it but some days it’s a must. So why is there no approval method for a patient who only needs them for emergencies and can make a 30 days supply last 90 days? No, the real failure here is placing the blame solely on a complex mix of patients desperate for help with real medical conditions and being denied and thus turning to non legal means to acquire help, often dangerous drugs unfortunately, the patients who where given high doses of pain meds but no plan after on how and when to come off, and an even more unfortunate group of individuals who are actual addicts and drug seekers who deserve support and help but often don’t want it.

I could rant on for DAYS about how frustrating this entire mess is. Everyone wants to blame the manufacturing companies who developed these drugs yet there was an actual need for them. When was the last time you had major surgery and woke up with ZERO pain relief after being sliced open? The problem became when these drugs weren’t listed as addictive as they are, some doctors made bad choices for profit (go watch The Pharmacist on Netflix if you want to REALLY dig into this crisis), and the research regarding how to come off never happened. And why would it? It works, that’s the point, it did the job it was meant to do so why waste more money on such concerning topics?

And since many other drugs were deemed illegal, there was a lack of research on why those “street” drugs were so effective and the potential some held, thus researchers in a chemical lab had to synthesize drugs to make it work. I’m still reeling over marijuana being listed as a SCHEDULE ONE narcotic aka no medical usage what so ever and should never be utilized. Yes, it’s listed higher than Oxy, codeine, and even fentanyl. But muscle relaxers and nerve pain meds (my personal vendetta) aren’t listed as addictive….yes they are, news flash.

Regardless of this outcome and the insanity surrounding it, I pose one simple question, why isn’t there some kind of requirement about education for ALL medications for all doctors as well as the money the courts demanded from these pharmaceutical companies instead going into research about how to come off them safer and ways to avoid the body addiction that occurs naturally without your own mental consent. Your body becomes addicted before you know it and you, a chronic pain sufferer, don’t want that, never did. Now you get to battle coming off and if the medication given to you is enough to safely titrate off.

Before I go, I leave you with one last note. Pain is real in so many ways. It can be physical, emotional, mental, and beyond and thus manifests in many ways. I’m not saying hand a pain pill to every Tom, Sue, and Joe that walk through the door, but I am saying, look deeper. Someone calm but in pain is going to be your real in need cases. I can’t count the number of times I’ve laid in bed sobbing over the pain I feel and knowing not a single doctor among my laundry list nor a hospital would do a thing about it, most because they are blocked from rpescribing but others because they fear the “addiction statistic” and my history of chronic pain. I don’t want to spend my life carefully balancing pain relief with my chronic gut problems and Gastroparesis, but somehow they have yet to find a way to alleviate that pain and not force me to be my own doctor of balance. So I call to you the Pharmaceutical companies of the world, the doctors, PAs, NPs and Nurses, educate yourselves and ask the questions. Take the notes and fight for your patients. Fight for people like me who break their parents heart every time I end up in a fit of tears screaming while they know there is nothing they can do and a hospital won’t help (trying to choke down a massive oral pain medicine while puking does NOT go well and I’ve said I would rather just live in pain). Fight for the chronic patients who deserve better and less stigma. Fight for better answers and more research. Fight for us because we are tired, worn down from insults and pain, exhausted from sleepless nights debating what could even be done.

Fight for me.

Stay strong my friends