The Fibrochondriac

What’s LDN and why would I care?

Have you ever heard of Low Dose Naltrexone? It’s called LDN (because like everything, it’s got an acronym!).  I’ve been reading about it for the past few months and I think it’s a path I might just go down.

The first I heard of LDN was this  press release put out by Stanford University that they had just completed a small study of LDN. Ten women, all with Fibromyalgia, were given very low doses of a drug that is normally used for opioid addiction. Of the ten, seven experienced a 30 percent reduction in pain. That was interesting.

Then I started googling LDN. I found a few web sites:

• http://www.lowdosenaltrexone.org/
• http://www.ldners.org/

Message boards:

• http://health.groups.yahoo.com/group/lowdosenaltrexone/
• http://ldn.proboards.com/index.cgi
• http://health.groups.yahoo.com/group/LDNforFibro/

And a book:

The Promise Of Low Dose Naltrexone Therapy (which I, of course, bought, because that’s just what I do)

There’s even a (long winded, but interesting) video from Stanford University on Fibromyalgia that mentions their study…but only at the end of the video does Dr. Mackey talk about LDN and the phenomenal success of their small study. Well, when 7 out of 10 women have a 30 percent reduction in pain it’s phenomenal compared to FDA approved drugs which have huge side effects and can help perhaps three in ten people. But we knew that already, right?

Narcotics versus LDN

So I’ve been reading and taking notes and trying to make an informed decision about this drug. I’m on narcotics, which I’d have to come off of because Naltrexone, even in miniscule doses, is an opioid receptor antagonist which means it would throw me into withdrawal. And that would hurt.

I’m plenty happy to come off of the narcotics except that it rocks my little world when I do.  I’ve been on oxycodone since 2007. Usually 15mg two or three times a day. I also take Morphine Sulfate extended release 15mg twice a day. So if my pain level isn’t high and I don’t take the oxycodone, because I’m taking the MS ER, I don’t go into withdrawals.

Since moving down to California my pain has relented quite a bit. Instead of, on a scale of one to ten, a six being a good day…six is a really bad day. So I don’t need the oxycodone as much.

However, I am finding that when I don’t take the oxycodone at all, I have NO energy. We’re talking glued to the bed. Profound fatigue. Getting up in the morning, making and eating my breakfast, doing my dishes and taking a shower can take me all day. I had no energy for anything, even showing emotion. I was a lump.

This was a huge surprise for me. When it happened the first time I thought it was because of the drug changes that the UCSD pain doctor made (more about her in a minute). But the next time it happened I figured out it was a deficiency of narcotics in my system that made me fatigued. This made no sense.

Endorphin Deficiency Syndrome?

So I started researching that. And guess what? My research on the fatigue brought on by opioid deficit intersected with my research on LDN.

Ever heard of “endorphin deficiency syndrome”? Me neither. As far as I can tell, it’s not a term used in medicine. However, it does seem to exist. Maybe? This deficiency causes a specific type of depression.

There’s a fascinating blog www.prohibitionkills.blogspot.com that explains a lot about depression and the different types of depression. Did you know there were different types of depression? It was news to me. But apparently some types of depression cannot be helped by SSRIs (no surprise, they’ve never made a dent in mine!) but instead are alleviated by opioids.

That explained so much of what I’ve been going through to me. I feel more “normal” when I take the oxycodone than when I don’t. I don’t know how to explain it except that I’m anxious and lethargic when I don’t take them. Isn’t that an odd combination of feelings?

However, taking opioids on a long-term basis, as I did, can kill off (if I’m using over-simplified explanations, it’s just how I understand it) your ability to make endorphins. Endorphins make you feel good and without endorphins…there would be no “highs”, only “lows” and a person would probably turn into a lump. Hmm…perhaps there is a connection.

It is possible, even normal, for the body to return to being able to make endorphins, but sometimes not. And through anecdotal evidence, it is possible for LDN to help the body create the endorphins needed to not be depressed…and to feel “normal”.

LDN and a “real” Doctor

So about a month ago, I took all the information I had found on LDN to my first appointment with a pain management doctor at UCSD (yet another acronym. This one stands for University of California San Diego).  I had decided to go to the doctors at the university because it made sense that they’d be more “cutting edge” and might have some knowledge of LDN (or anything else that would help me). After all, it was at a university (Stanford) that the LDN Fibromyalgia study was done.

OH BIG MISTAKE! She wanted absolutely nothing to do with me, much less the LDN. Because I’d had issues with so many of the anti-depressants that I had been put on she told me the only thing she could do for me is send me to their psychologist and maybe get me into physical therapy.

Doctors. Argh. I really don’t understand them, and trust me, they ain’t explaining. So we try to fix things our own way. Blame us?

So in the interest of getting myself off the narcotics and un-depressed (and hopefully less anxious and lethargic), I found a person on the LDN list who gave me the name of several doctors in the area that are willing to prescribe the LDN. So…I’ll let you know what happens.

For more information on LDN, take a look at this article at Suite 101.