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 weeks.
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:
Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance
Part 2: Pain Management Myths and Misconceptions
Part 3: My Personal Journey
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.
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!