Frank Talk On Pain Meds: Introduction – Jumping Off Into The Vast Unknown

Those of you who know me know I am all about being 100% honest and real, all the time. No little white lies. No quiet deception. Well, it’s not going to get any more real than this series, Frank Talk On Pain and Pain Meds, and what’s to follow in the next few months.

The issues of pain, pain meds, and the relatively new medication, LDN (Low Dose Naltrexone), have consumed my world for the last 3 weeks, as I wrestled with, and then came to what, to some, will seem like a rather drastic and risky decision: to get off the opioid (sometimes called opiate, or, erroneously, narcotic) pain meds that I have been on for the past ten or eleven years, in order to give LDN, a trial run.

You can’t have it both ways – it’s one or the other.

This was not an easy decision, nor one to be made lightly.

The pain that ME/CFS and FM (fibromyalgia) patients like myself experience is very real, very intense, and a constant part of our daily life.

Even with opioid pain management, there is no such thing as a day without pain. It’s a matter of degress, of where does it fall on the 0 (no pain) to 10 (excruciating) pain scale. I haven’t had a single moment at less than a 3 in as long as I can remember, with 4, 5, 6, and sometimes, even 9.5, being a regular part of my daily life.

Those of us who are lucky enough to be on opioid pain medications know just how lucky we are, as we all have friends who aren’t so lucky. Chronic pain is both emotionally and physically draining.

As I discussed my idea with a few famly members and friends, and reflected on the past, I realized exactly how much misinformation, misunderstanding, and what a terrible stigma there is around the use of opioids in chronic pain patients.

It turned out I had a lot to say about it, but, as I started weaning myself off the opioids I have been on for more than a decade on March 25th, maintaining a clear and rational thinking pattern has been quite challenging at times (perhaps the understatement of the year). Believe me, I’ve tried to whittle this down, but am tired of editing, so here it is:

Frank Talk On Pain and Pain Meds:

My stated goal:

To go from 80mg Oxycontin daily with up to an additional 10mg of oxycodone IR for breakthru pain, to LDN, and to do it as fast as I can physically and mentally handle it – and to share this journey into uncharted waters with you.

Because I don’t know of anyone who has gone from 10+ years of opioid use and then onto LDN, I feel a certain responsibility to share this experience with you, my friends and fellow patients, in case you, too, are contemplating the same choice.

Withdrawal is not fun, I can tell you that now, but then, you didn’t think it would be, did you? What I’ve been experiencing will be the subject of future posts.

As of today, April 14th, I’ve cut my dose down to about 40mg a day. Just about half way there, but possibly going a bit too fast – more on the delights of withdrawal in future posts.

My Reasoning

The stigma that surrounds opioid use is one reason behind my decision, as my PCP, who has been handling my pain management, was out on maternity leave for 3 months, and I was faced with uncooperative members of her practice who left me wondering, day to day, whether I was going to run out of my meds or not. During an appointment with another provider, I was treated like a drug seeking addict.

I am not addicted to my pain medications, as I explained to her. I am physically dependant. There’s a huge difference, one she should have known. I explore these differences in Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance.

I left feeling absolutely humiliated, and with only a few days worth of meds. My awesome PCP soon came to my rescue, despite being still out on leave, but the experience left me pondering the precariousness of my situation.

The other reason behind my decision was recent research and articles I have read touting how effective LDN is, not only for relief of pain, but also possibly for assisting the immune system to re-balance – something I am increasingly in dire need of.

I spent several days in deep contemplation and research, before finally deciding to take the plunge.

Much to my relief, my awesome PCP is behind whatever decision I make. As her large practice’s fibromyalgia specialist, she has already put several patients on LDN, with good results.

Read on, please, and feel free to share and comment!


Frank Talk, Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance

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:

  • Addiction is a primary, chronic, neurobiologic disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.
  • Physical dependence is a state of being that is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.
  • Pseudo-addiction is a term which has been used to describe patient behaviors that may occur when pain is undertreated. Patients with unrelieved pain may become focused on obtaining medications, may “clock watch,” and may otherwise seem inappropriately “drug seeking.” Even such behaviors as illicit drug use and deception can occur in the patient’s efforts to obtain relief. Pseudo-addiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.
  • Tolerance is the body’s physical adaptation to a drug: greater amounts of the drug are required over time to achieve the initial effect as the body “gets used to” and adapts to the intake.

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.

Please leave your thoughts below.

Frank Talk, Part 2: Pain Management Myths and Misconceptions

Frank Talk On Pain and Pain Meds:

This is Part 2 of a 5 Part Series on the Use of Opioid (Opiate) Pain Meds for ME/CFS and FMS. This part is primarily written for the benefit of family members and friends of patients on opioids – we patients already know all this, although I welcome hearing from other patients and your thoughts about all this!

I request you read Part 1: Pain, Opioids, Addiction and Dependance, first.

Those of us with ME/CFS and FMS try multiple modalities – routes – to pain relief as part of our pain management.

These can include an array of different prescriptions, from antidepressants to anti-seizure medications (Lyrica, Gabapentin), anti-inflammatories (like Celebrex), etc.

We also make liberal use of physical therapy and massage when we can afford it, biofeedback, hot and cold packs, as well as modifying our environments. We often need extremely soft beds with thick, fluffy, mattress toppers, curtains and dark sunglasses to block the light the hurts our eyes, and a family that tip-toes habitually due to our sound sensitivity.

Every little bit helps.

Dispelling Some Myths

Oxycontin and other opioids have the potential to be addicting and to be abused, there’s no debate there.

But that does not mean that someone who is prescribed it for pain management and taking it as prescribed is necessarily going to become addicted (remember the true meaning of that very loaded word – see Part 1), no matter how long they use it.

They will, however, become physically dependant.

There is a world of difference between the two, and if you are still unclear, please go back to Part 1 and re-read the definitions.

You may be surprised to know that opioids like Oxycontin do not make you feel “high” when used daily, long-term, at the prescribed dose, for pain management.

Yes, you read that right – I’ve been on opioids (Oxycontin & oxycodone, mostly) for over 10 years. If anyone would know, it would be me.

It just relieves some of the pain, which is the point of pain management.

Even with opioid pain management, there is no such thing as a day without pain. It’s a matter of degress, of where does it fall on the 0 (no pain) to 10 (excruciating) pain scale. I haven’t had a single moment at less than a 3 in as long as I can remember, with 4, 5, 6, and sometimes, even 9.5, being a regular part of my daily life.

In my case, opioids actually increase my energy level – chronic pain is both emotionally and physically draining. Muscles tighten into spasm around the painful areas, and that takes away my precious energy.

Finding a Pain Management Doctor can be very difficult.

Pain doctors are very strict – because the FDA makes them be. Doctors who write scripts for opioids are (usually) carefully watched and many doctors will simply flat out refuse to write any rx’s for opioids at all.

I was recently, erroneously, as it turned out, told my PCP would no longer be able to prescribe my pain meds. She was out on maternity leave at the time. This set off a mad scramble of researching doctors online, and phone calls.

An example: One doctor would only agree to even make an appointment with me after I had had my last years’ worth of medical records sent to him for review. He charges $300 for the initial visit and $200 for each monthly visit. A problem for someone with no insurance. And he’s not prescribing opioids for anyone new, but only taking over patients who are already on opioids.

If you do find a pain management doctor who will treat you with opioids, it is likely there are a lot of rules:

  • By law, you must pick up your written prescription in person, and can never have more than a 30 day supply.
  • Most doctors require you actually see them for an office visit every 30 days before they will give you that rx.
  • Most doctors require you to sign an “opioid contract” spelling out the rules you must follow. Break the rules, and you will be dismissed from the practice.
  • That office visit may include a “pill count” – they keep a tally of how many have been prescribed, and how many you should have taken, and you had better show up with exactly the right amount left on hand.
  • If your prescription or any pills are lost or stolen, and you don’t have a police report, it will not be replaced, and you will be dismissed from the practice.
  • You may be subject to random drug testing. Have too much of your prescribed medication in your drug screen or any illegal drugs and you will be dismissed from the practice.
  • In some states, the state monitors how many opioid prescriptions you have gotten filled, so as to catch people who go to multiple doctors hoping to get multiple prescriptions (usually with the intent to sell them – Oxycontin fetches a high price on the street).

If you manage to get yourself dismissed from a practice, you will have a very hard time finding another doctor to prescribe for you, as they will want to know why your previous doctor dismissed you.

A Pain Specialist With A Remarkable Story

Dr Heit is quite literally world re-knowned in the field of pain management, and was my specialist for several years. His story is quite interesting.

He was an intern in an entirely different speciality when he was injured in a car accident, and left in a wheelchair. Despite his terrible injuries, he found his pain was profoundly undertreated, and he was often in agony.

He decided to change his speciality to pain management, and has been a crusader for several decades, fighting for the rights of those with chronic pain to receive adequate pain medication, including the use of opioids.

He has frequently testified before the FDA and Congress, and is widely recognised as an expert in his field. He has also written numerous articles and chapters in medical textbooks.

He was a demanding but compassionate practitioner, who ultimately handed me off to my primary care provider, because I was a trustworthy patient with absolutely no sign of addiction or abuse. I took (and take) the proper number of meds, exactly as prescribed.

Dr Heit has proposed to the FDA a tier fashion of categorizing patients, based on their potential to abuse their medications or showing signs of addiction. I don’t know if this has been adopted yet. His goal was to make it easier for patients with the least risk of abuse to receive treatment for their pain through their primary care providers.

I hope this has helped dispel some of the misconceptions about pain management that many people have. That’s my goal, anyway. What did I miss?