Health & ME/CFS

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?

2 thoughts on “Frank Talk, Part 2: Pain Management Myths and Misconceptions”

  1. Indeed! A very clear and concise post, again. Thank you.

    It is good to point out the rules a pain patient most often must follow. Laws vary from state to state, as mine are a bit different from yours, but I will say again, and agree with you, that having a doctor who treats pain is good. It should not be luck, you know.

    When I was diagnosed with fibromyalgia, the expert told me that doctors can be sued for not treating pain patients. I had never heard this or considered the view. He said it was wrong to not treat pain when we have the medication to do it.

    Perhaps drug companies, such as the ones who make Lyrica and Cymbalta, want to make a lot of money. Those are very expensive drugs last I checked. They often don’t work for pain, and the side-effects and/or adverse events that can and do happen are outrageous for some patients. Compare the effects of well-managed pain medication; an opioid for instance, and they are much less problematic.

    I think the government puts too much pressure on doctors regarding treating pain patients. I don’t believe the doctors or patients are responsible for most of the drugs, particularly Opioids, that make it to the ‘streets’. There are people in much higher positions that get large quantities of these medications/drugs to the Black Market. The ‘Mob’ isn’t fiction and really does rule the Black Market.


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