If there is one subject that is the least spoken about in the ME/CFS and Fibromyalgia (FM) communities, both between patients and also between patients and our own family members and friends, I think that subject must be the use of opioid (sometimes erroneously referred to as narcotic) pain meds to treat our pain issues.
There are so many misconceptions about the nature of pain in our illnesses, and even more about the use of opioid pain medications, I think it is time for some frank talk about these subjects.
Frank Talk On Pain and Pain Meds:
Pain: The Problem
The pain of ME/CFS and FM is very real, very strong, and usually constant: a deep aching in the muscles and bones; frequent, if not constant, headaches and migraines; tenderpoints and triggerpoints – knots easily felt by anyone in the muscles and the fascia, the covering of the muscles (myofascial pain syndrome).
There is also a generalized tenderness, and in some cases, extreme sensitivity. Sometimes, the weight of the bedsheet is too much, too painful, to bear. Sometimes, the lightest touch, like the gentle brush of a lover’s hand over an arm, burns like a scald from boiling water.
There are complicated medical reasons: too much “Substance P,” the chemical that transmits pain signals; an over-active neurological system; the build-up of excessive amounts of lactic acid (that stuff that makes you healthy people have sore muscles after working out); and even more, convoluted, biological reasons that I can’t pretend to understand.
To top it off, we often have many other co-existing factors: deep muscle spasms; osteochondroitis (inflammation in the tissues between the ribs, making just the act of breathing incredibly painful); inflammatory arthritis; restless-leg syndrome; gout or pseudo-gout; injuries that don’t heal; incredible foot pain (plantar’s fasciitis comes to mind)… the list goes on and on.
Our pain is real.
It is intense.
It never let’s up.
It keeps us awake at night, thrashing in bed, trying to find a comfortable position – an impossibility when you hurt everywhere.
Pain Meds: No Easy Solution
Because our pain is not simple, and has multiple biological and neurological causes, treating it is also not simple.
We almost all take a cocktail of meds designed to have some impact on our pain levels, from Lyrica (an anti-seizure medication) to a variety of different antidepressants. These all work to alter our brain chemistry in ways that are sometimes not even understood, to help reduce our perception of pain.
But the simple reality is, those barely scratch the surface for the majority of us. One in six Lyrica users finds it to be moderately useful, for example. Hardly an astoundly good result.
So, what about Aspirin, Tylenol, Advil, and Aleve?
For the overwhelming majority of us, they have ~zero~ effect on our pain. Our pain is of a different origin than what they are made to treat.
Pain Meds: What Works?
The new med in town is LDN, Low Dose Naltrexone, currently in clinical trials, for fibromyalgia. But for many of us, this comes years too late – many of us have been sick and in pain decades. (Note: You can’t take LDN if you are already on opioids.)
There is only one class of pain medication that reliably works: opioids, or, as they are sometimes called, opiates.
What are we talking about? For the vast majority of us, if we have a compassionate and knowledgeable doctor, we are prescribed two different formulations of the same medication, oxycodone. The first is Oxycontin, which is a time-release form, to cover the bulk of our pain.
The other is an immediate release oxycodone, in a much lower dose, for “break-thru” pain – the pain that roars up like a lion, irregardless of the Oxycontin. One example: periodically, I have to leave the house, for doctor appointments, etc. Being vertical sets off the pain in my back, which locks into rock hard spasm. It feels like I’ve been stabbed with a butcher knife & someone is slowly twisting the blade. Literally.
There are a number of other opioid pain medications, like methadone, hydrocodone, etc. But they aren’t prescribed as often.
According to one study I ran across, Oxycontin is what approximately 40% of Fibromyalgia patients take.
What about the other 60%? Good question.
Doctors are more and more hesitant to prescribe opioid pain meds, as the FDA cracks down on doctors running “pill mills,” and good doctors get investigated in the process. Every patient asking for opioids is treated like a drug-seeking addict, and often turned down flat out.
So, the rest suffer, their pain untreated. Even the ones lucky enough to have a doctor who will prescribe for them may be undertreated, as tolerance develops fast, and doctors resist raising the dose.
The Opioid Stigma: Oxycontin & Oxycodone
Most of the time, the only time the public hears about Oxycontin is when a celebrity goes off to rehab for Oxycontin addiction, or there’s a high-profile overdose of somebody who was not a pain patient, who was buying it off the street. Often, in those cases, Oxycontin is referred to as a “narcotic.”
“Narcotic,” however, is more a legal term than a medical one. Many drugs are legally classified as narcotics, and some have nothing at all to do with pain management.
Medically speaking, the medications we take for pain control are opioids.
But all this sets up a stigma in the public’s mind, which is why we patients, desperately in need of pain management, and offered Oxycontin and oxycodone, don’t speak of it much, to anyone.
The reaction of even close family members can be terrible, with accusations we are addicted to our pain meds, and threats of intervention or rehab.
It’s often extremely difficult – or impossible – to get people to understand that we have a right to live without constant pain, and that pain meds, including opioids like Oxycontin and oxycodone, can be prescribed and used responsibly, without our becoming drug-crazed addicts!
So we stay silent.
Addiction vs. Physical Dependance
This is what we most need you, our family and friends, to understand: the very big difference in addiction and physical dependance.
In 2001, the American Academy of Pain Medicine, the American Pain Society, and the American Society of Addiction Medicine jointly issued “Definitions Related to the Use of Opioids for the Treatment of Pain.”
Please read – and re-read if necessary – until you understand the terms involved with pain management and addiction:
Before you accuse or insinuate that someone taking opioid pain meds is “addicted,” learn what that term really means, I beg you. Oxycontin and other pain meds are sanity-savers for those of us with ME/CFS & FM. We become physically dependant, yes, but many meds cause dependancy, including blood pressure meds, antidepressants, seizure meds, and many more.
It is a small price to pay for relief of the never-ending pain.
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