N-Zone Update

Here are the latest developments regarding my experiment with low-dose naltrexone (LDN).

I’ve taken my medicine every night for 12 nights now; I have a 30-day supply, so I’m nearing the half-way point of this trial period. I was cautioned to not expect any improvement in my CMP symptoms too quickly, and that certainly seems to be wise advice. There has been no “miracle cure” here, for sure.

I believe I am experiencing small, but perceptible changes, however. The most problematic areas for me have been the tingling & numbness in my left foot and the pain my lower back. Although it’s somewhat difficult to tell (due to the “good-day” / “bad-day” nature of the disease), I’ve been starting to think that there is a little improvement. The primary way I have of gauging this is that, at some points during some days recently, I have realized that I’ve not been thinking about the pain. This is pretty incredible, given that most all of the time (in recent days, weeks, months and even years), awareness of the pain is always with me.

I’m hoping that there is some promise in this treatment, but there’s a long way to go. Especially, since I’ve developed additional pain symptoms recently. Given all the time I’ve spent at the computer in the last two to three weeks to address the problems with my former blog, and then getting this version ready to go online, I’ve developed pain in my right forearm and wrist that is consistent with my 1990 tendonitis diagnosis. Amazingly, though, the Trigger Point Therapy Workbook offers me hope that I can treat this with trigger-point massage therapy (and that this may not, after all, be tendonitis but rather part of my CMP condition).

The bottom line of my thinking for today is that there may be some hope for me and my CMP woes as I combine the self-massage and LDN therapies.

End of Life

I received word a couple of days ago that one of my high school classmates does not have long to live. Several years ago she was diagnosed with breast cancer but was able to survive the experience back then. The most recent memory I have of her is from a class reunion where I observed her smoking a cigarette. I must admit, I had a judgment about this. I thought: A cancer survivor. Yet she’s smoking. Incredible. She must have a death wish.

Linda was someone I shared rides with to school in the morning some days (via a carpool). I can’t say that we were really friends, though. We were acquaintances, mostly; we lived in the same neighborhood of our small, rural northern-Wisconsin town and our parents knew each other. She was at least one notch, probably more, above me on the social scale. She was a good looking teenager (rather hot, actually) and dated the jocks. I was extremely average looking, small, non-athletic, academic — and nerdy with a rather rebellious wild side. I didn’t fit. She did.

Now she’s in hospice care. So, again I’m left thinking: what’s this life all about, anyway?

The N-Zone

I’ve talked off and on here about my diagnosis of chronic myofascial pain, provided some thoughts about surviving this disease and the treatment process, and most recently, discussed the trigger-point injection therapy I began a couple of weeks ago.

Here’s a little addendum to the story that I’ll now share with you…

During the first appointment at the doctor’s office where we performed trigger-point injections , skittish-(around-needles)-person that I am, I allowed only four injections. The second time, a few days later, was a session with 19 injections. That extremely-intense ordeal was on a Monday morning, and, as it followed a weekend of suffering through some intense back and foot pain, I experienced some much-needed relief during the course of that day. However, by that evening, I had pretty much returned to “normal.” (This was not a good thing, of course…the pain had returned!) In fact, by the end of the week (on that Friday), I was hurting so much that I made and kept an appointment with my chiropractor in Eugene, where I obtained some pain abatement with the (for me, usual) treatment modes of ultrasound, light massage, and a small chiropractic adjustment.

My injection-therapy doc was going to be out of town for a bit, so the first chance I had to return to him was Monday morning of this week. While there, I reported on my status, including the few-hours-only relief I obtained as a result of the 19 injections last time.

Of course, I had been discouraged at not experiencing more relief as a result of that previous visit, but, still, was rather unprepared for the assessment that injections were not going to be the preferred treatment for me. The “typical patient” tends to respond much more positively than I did, apparently.

I had been warned that this (injection) path might be more problematic for me than others, though. In reporting my medical history, I of course had disclosed that I had been taking lorazepam (“Ativan”) during the last several months in an attempt to cope with the anxiety-factors of my life (job loss, interviewing, moving…that kind of stuff). As it turns out, and as I had been informed, taking a drug in the bezodiazepine class can sometimes (oftentimes) seriously get in the way of having a successful outcome from trigger-point injections. And this doctor, while having treated only a few individuals who were taking (or had taken) this type of drug, had first-hand experience in seeing such cases as mine “fail.” I had been off the drug for a full three weeks at the time of my injections (and, now, as I write this, it’s been over five weeks), but the effect that the drug can have on the body (at least as far as trigger-point injections go) can be much longer lasting than would typically be predicted from the elimination half-life .

So, what to do now? (was the question) I had been studying the Trigger Point Therapy Workbook and doing my own self-massage of trigger points (with the help of a variety of massage “tools” that I now own). But this approach seems to have yielded little progress, especially regarding my back pain. (It’s possible that the condition in my left leg and foot is somewhat improved.)

I asked the doc what we could to do to pursue an alternative treatment path. Fortunately, he had some ideas (several of them, actually). One possible approach that emerged was to take small doses of a drug, naltrexone , once a day (at bedtime) for thirty days. Naltrexone is an “anti-narcotic” usually prescribed to manage alcohol and opiate addiction. However, in low doses (3 mg vs. the typical 50 mg), the drug has been found to be advantageous for a variety of ailments. The hypothesis regarding this drug’s biochemical mechanism (magic?) is that it produces an increase in endorphin levels in the body, which positively impact muscle tissue (and myofascial trigger points, in my case). In people with diseases that are partially or largely triggered by a deficiency of endorphins ( CMP and fibromyalgia are thought to be in this category), or are accelerated by a deficiency of endorphins, restoration of the body’s normal production of endorphins is believed to be the major therapeutic action of (low-dose) naltrexone.

Now, I had never heard of this drug prior to two days ago. But, I admit, this theory and approach are fairly attractive: a low dose of a drug purported to have “no side effects” and that does not involve frequent, multiple and painful needles in my body. Further, the success rate of this approach for individuals with my condition is supposedly quite high (the pharmacist said that, in his experience, this approach works “about 90% of the time”).

I took the first dose last night at bedtime, after discovering that “low-dose naltrexone” (LDN) has its own website and listserv on yahoogroups . I have started to do the reading and the research, though it may be several days before I have any “results” of this experiment to talk about.

Stay tuned for further updates on my naltrexone experience...

Prime Time Wisdom

The popular TV show Grey’s Anatomy is filmed in Seattle, and maybe its Pacific Northwest roots are part of the appeal for me. (This season the show made a move to 9:00 p.m. on Thursdays, so it is on ABC an hour before ER airs at 10:00 p.m. on NBC; I tape them both and watch them on the weekend). Aside from its obvious (and frequent) quirkiness, the show has real and touching moments that occasionally tend to unearth some truths about life and relationships.
 
Last Thursday’s Sometimes a Fantasy really caught my attention. Most episodes are filled with several different story lines, with some, not uncommonly, continuing from week-to-week. And the story of Izzie’s loss resumed this time. She had fallen in love with a heart-transplant patient who had asked her to marry him. However, shortly after he popped the question (and after Izzie had made an ethically-questionable call about his care), he died. Izzie’s story was juxtaposed with one about Megan, a young girl who came to the emergency room with multiple injuries. Although she was bruised, beaten, scarred and had stapled a wound on her arm with an office stapler, she claimed to feel no pain. The ultimate diagnosis for her was “chronic insensitivity to pain.” (Who knew there was such a thing!?)

So, he we had: Megan, dramatically physically damaged, who claimed to “feel no pain.” And Izzie, who stood immobilized outside the hospital, unable to motivate herself to return to work, when asked where it hurt, said “everywhere .”

The array of possible human experiences always tends to amaze me. In this dramatization, one person feels immense, debilitating, chronic, paralyzing pain, and the other, none at all.

During the operation on Megan, the surgeon observes that “everybody wants a life without pain. What does it get you? She needs to be on a poster somewhere to remind people that pain’s there for a reason.”

I know, I know. This is a TV show. But the writing this week seemed incredibly good…and provided a degree of wisdom than one typically does not encounter during prime time.

Of course, these observations extend my previous commentaries. You know that I think about pain a lot ; and an episode of a medical drama focusing on the topic is bound to attract my attention and dwell in my thoughts. Six days ago, in an attempt to address my chronic myofascial pain issues (including my long-standing chronic lower-back pain), I allowed a doctor to inject me 19 times with small amounts of Marcaine in my first major attempt at trigger-point injection therapy. Although I experienced some short-term relief that day, by the evening I was back to “normal.” And, as my back pain has been the predominant factor in my existence the last couple weeks, I drove to Eugene to see my chiropractor on Friday.

If “pain’s there for a reason,” I ask, “what is it ?”

I struggle with this question.

Anxiety Factors

I suggested yesterday that the pace I kept leading up to the start of classes was an energy-depleting one. For me, of course, it’s not only the job that tends to wear me down, it’s the entire rest of my life. For example, in addition to commencing the school year this last week, I had two doctor appointments. The anxiety resulting from this schedule contributed to my fatigue, I’m sure.

The first of these appointments was with my urologist. As I’ve aged (I’m now almost done with my fifties), I have had to increasingly struggle with BPH; this is a condition I monitor carefully. Consequently, I have blood drawn for a PSA test every six months to assist in this process and to rule out prostate cancer (as my PSA level continues to slowly rise). About four years ago, my PSA number was of sufficient concern that I underwent a prostate biopsy. The rigors of this every-six-months examination, as well as the ever-present specter of cancer (or, simply, another invasive biopsy), probably are the reasons my blood pressure was up slightly for this appointment. Luckily, my PSA was more-or-less unchanged from last time and there are no obvious indicators, from the physical part of the exam, that I have cancer. This kind of news is always such a relief!

The second appointment of the week was the follow-up to my CMP diagnosis of last month. The blood work that I’d had done came back with an array of acceptable numbers, including my cholesterol and triglycerides. My HDL (“good cholesterol”) result was especially encouraging to me (I must be doing something right!). And my blood pressure at the beginning of this appointment was much better news than a couple days earlier.

At the previous appointment, I had been advised that I should stop the anti-anxiety medication I had been taking (to help with sleeping) if we were going to make progress on the chronic myofascial pain issues. I have since weaned myself from this drug successfully, and am now able, apparently, to pursue a treatment path. The treatment recommended is trigger-point injections, as this physician has been doing such therapy with his patients for about 15 years and reports many stunning successes.

So, I have now started down this road. Typically, he states, about 18 trigger points are injected during a session. I allowed him to do only 4 injections during my appointment (and only after a one-hour talking consultation), however, as I’m not totally convinced, after doing my research, that this is the best route to go. But, I got modest, temporary symptom relief on Friday and I’m going back tomorrow for the next step. We’ll see how this all works out.

I guess the last thing to report (for this entry anyway) about current experiences contributing to my anxiety and fatigue, is the noise element in my life (and the resulting, somewhat-tenuous relationship with my neighbor in this apartment complex). The bass vibes from the stereo keep coming through my living-room wall. The kids keep screaming as they run up and down the stairs. The adults keep slamming their door. And I keep feeling like I need to run away.

After a few weeks now of talking to my neighbor as frequently as once a week, when I handed in my rent check yesterday to the office, I mentioned my uncomfortable living situation to the manager on duty. Unfortunately, I did not get the sympathetic, good-listener ear I was hoping for. I was told, though, that they would give the neighbor a written notice about the complaint. I’m betting that this has happened already, as the reception I received on the stairs this morning was quite a cool one.

For now, though, I’m sure I can live with an unfriendly neighbor as long as she’s a quiet one.
Work, health, pain, doctors, needles, noise, neighbors. My life. And anxiety.