Until this summer I had taken opioids for decades of hellish pain due to the complications of Behcet’s Disease, an auto immune disorder that mistakenly attacks my body.

For years I did everything imaginable to reduce the pain that parked me on disability 17 years ago.

In 2007 I finally asked my provider about opioids. After a long discussion, I decided to try a low dose of oxycontin. It was miraculous. The level of pain took a nice, slow but steady drop from 7 to 9 down to around 5 or 6 on the 10 point pain scale.

My constant companion, the wish to die or my constant plotting to do myself in simply ended. I was really pleased by that.

My life changed. I was no longer angry and depressed, could volunteer with the American Pain Foundation and was able to spend more time finishing my memoir and eventually landing a column with the American News Report.

But a few years ago I noticed that the pain was reasserting itself like a long gone lover who returns to make your life a living hell.

In consultation with my physician we decided not to up the oxy but to switch to Subutex.

Subutex was even more miraculous. Whatever was left of the depression fled my brain at the very sight of the opioid molecules swimming resolutely towards them.

But with the relief came the awful side effects. I developed Death Valley dry mouth, constant sweating, testosterone dried up, no sex fantasies, no desire and worst of all, no erection. This was especially hideous as I have a very beautiful and desirable wife.

Over a period of a few months, the dry mouth succeeded in giving me a host of cavities as well as destroying the enamel on my teeth. My teeth literally calved like glaciers in Greenland. I looked like I had meth-mouth.

I decided that I couldn’t live like that, it was too much. I thought I’d take my chances with the pain. It took several months to come off of the Subutex; some of the symptoms I would only recommend to an enemy. It was difficult but I managed it.

By last July I was opioid free and the pain, surprisingly, was tolerable. I was happy with the results.

But, you guessed it. Gradually, at first not noticeable, the pain began its return. Not only the pain, but all the strange symptoms of the Bechet’s Disease.

Here’s what I noticed about myself as the pain slowly reasserted its dominance in my life. Instead of being outwardly engaged with the world, I found myself thinking increasingly about the resurgence of the pain-1st in my lower spine where the arachnoiditis lives, then my cervical vertebrae, my left nut began to throb again courtesy of epidydimitis, the return of painful collagenous colitis, mouth and genital sores; the whole lovely gang gathering again in my living room for another party.

As this increased I found myself not able to do the things I had been able to do during the 5 years of opioid treatment. I slowly dropped out of many things I was able to do before. The remarkable thing was that I  found that my thoughts were slowly turning from the world to the interior of my body. I could see myself withdrawing my participation in the world.

In the last two weeks I started thinking of going back on an opioid. I talked about it with my wife, Judie, and she urged me to go back on it as she said I was changing again for the worse She was right, I could see that, too. I hated the thought of pain wracked loneliness.

My blood pressure turned the tide in favor of an opioid. For several months I’ve been going for dental care to the University of California, San Francisco(UCSF) Each visit my blood pressure has been taken and it was dangerously high. At first I thought I simply needed to change my blood pressure meds to fix the problem.

However, it slowly dawned on me that my blood pressure had been climbing since I’d stopped the Subutex. My body was responding to the pain and emotional distress that pain hauls along in its wake.

Monday I was back for oral surgery to remove two destroyed molars. But when my blood pressure was taken the surgeon wanted to walk me down to the emergency room saying that my blood pressure was over the danger line. I was able to talk him out of that promising I would see my physician about the crisis.

By the time I saw my provider later that afternoon my BP was down to 140 over 100. Still high but no longer a crisis. He agreed with me after I told him about the pain boomeranging back on me that the pain was probably at the bottom of this.

This morning I was back at UCSF for the oral surgery. With the new BP medicine that my provider gave me, my numbers were a much more normal-138 over 83.

It isn’t just the pain that weighs us down, it’s the attendant isolation that pain hauls around with it. I found myself living most of the time in an internal world of hectoring pain and slow, slavish withdrawal. I’m physically present, but mentally I’m in a cave.

This afternoon I will start using a Butrans Patch. I know it will help with the usual Behcet’s pain, but I hope it will also give me some relief from the post surgical pain.

I wish I could say I am hopeful, but I’m not, not really. Living like this is a bit like playing Whack-a-Mole 24 hours a day.

But as with millions of others like me, I’ll just take what comes my way and whack as many of those damn moles as I can.




About left0089

Columnist at American News Report. Pain care activist. Poet, memoirist.
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  1. Erica says:

    Dont give up, this medicine has worked wonderful for me – through 2 dozen very serious spine and central nervous system surgeries in the past 16months and daily pain from the underlying storage disorder I have that affects all joints and organs. I take 15mcg and then as needed breakthrough MSIR and is really good. Dont give up, Mark there is something to help you!


    • left0089 says:

      Ah, thanks, Erica. We all need the words of experience to fall on our hearts like rose petals, at least when the words are encouraging. My mouth already feels better and I hope for a night of sleep, but you know how difficult that sometimes is.

      I think about giving up, Erica, but I’ve learned over time that giving up is not really in my spirit. I wonder what it is that keeps us going? Faith, hope, charity? I think in the end, it’s loving others that keeps us from shuffling off. That or my life long futility in loving the hapless Cubs! The Cubs-I used to live one block from Wrigley Field-are my carrot and pain is the stick; I prefer the lowly Cubs.

      Have a slow pain low weekend, Erica.

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