An answer to prayers! A request for help!

I know that since I have moved back to the Houston area, I have had many people praying with and for me to find a doctor nearby who can treat my medical disorder without me having to travel back to Georgia or Wisconsin. It took until I nearly ran out of medication, but I finally found one, and it is the best doctor I could have found. He's knowledgeable about my particular disorder, and is capable of writing prescriptions for my medications... and he can even replace my neurostimulator when the time comes for that.

Thank you if you were among those who were praying for me. I do believe that this worked out as a result of those spiritual pleas.

I am also posting to my blog to ask for your help. 

I have been "overcoming relentless agony" since January of 2004. Details of my health saga are posted on the web site www.relentlessagony.com and I loosely maintain this blog on both FaceBook and here. My condition, officially designated as Complex Regional Pain Syndrome (Type II), is the most painful condition known to medical science, and afflicts thousands of individuals, but--especially in today's era of the so-called "opioid epidemic," those with CRPS can go for months or years without even a proper diagnosis, let alone an effective treatment.

November is the official month selected to increase awareness for Complex Regional Pain Syndrome and push to raise money for a cure. I am reaching out to you know to ask for your support to help in one or more ways:

1. Join the "Relentless Agony" team of individuals participating in an official 5K Run/Walk/Roll event at a time of your own choosing during the month of November. Registration information can be found at this web site.
2. Sponsor me as a participant in this 5K event. I am signing up at the $50 level and would appreciate it if you could help me offset the cost with a donation of either $5 or $10. Any money given to me that exceeds the registration cost will be compiled with money given to my other family members and then donated to RSDSA who will use that money to provide financial assistance, conferences, grants, support programs and much more to individuals afflicted with CRPS across the United States. If interested, donations can be made through my GoFundMe site, or directly to us by using PayPal, Venmo, or Zelle (using donate@relentlessagony.com or 414-949-PAIN). You can also send a paper check through the USPS mail service if you wish; just contact me for our address.
3. Donate money directly to support me and my personal medical expenses. My ongoing treatment--needed not only to help ease my pain, but to allow me to continue working as a full-time, high school science teacher--requires our family to spend an average of approximately $350/month on doctor's visits, medication, and medical procedures. Donations can be made on a regular basis or a one-time submission. Just use one of the methods mentioned above in option #2 or reply back to me if you just wish to send a check through the mail.
4. Wear something (or deck yourself out in) ORANGE on Monday, November 4th which is the official "Color the World Orange" Day to help kick off the month of increasing CRPS awareness. Of course, you do not have to limit yourself to helping only on that day or only this month either, but please help, even if only to tell one other person about CRPS who did not already know about it.

Thank you for your friendship, prayers, and/or support, both in the past as well as any you give in the future. It really does make a big difference to me, my family, and my students.

Update on the OSKA Pulse device!

UPDATE: Recently, I tried using a new medical device, called the OSKA Pulse, that has been tried by many who share my condition, or something very similar to it. Although not everyone has experienced the same degree of success, there are many individual testimonials to the effectiveness of the device to relieve pain. While few experience total pain relief, several report the severity of their pain decreasing to a "2" or "3" on a 10-point scale, where "zero" means "no pain at all," and a "10" is "the worst pain imaginable" where speaking or even breathing can be difficult.

Once again, I was blessed to have a combination of former students, colleagues, and friends contribute money to cover the $400+ cost of the device. Unfortunately, the device did NOT have the effect for which I had hoped. Meanwhile, I am always listening and reading... hoping the "next big thing" might make the difference!

Please keep me in your thoughts and prayers!

Putting out fires is ALWAYS the highest priority!

OK, yes, it has been well over a year since I last posted. I wish that I could say that my reasons for holding off so long are that I no longer have this condition or a need to promote its awareness, but today of all days, it is important to make sure that my message is not lost amidst important elections occurring tomorrow and other crises around the United States and the world.
Although I understand and empathize with those who feel the need to focus and promote things like the "Me Too" movement and "Black Lives Matter," when your own life is in personal crisis--for example, you have a debilitating pain disorder that causes you to be in constant, moderate to severe to excruciating pain--the important of nearly everything else is diminished.
As best as I can explain it, I think it is something like you are in danger of being terminated at work or perhaps failing a course in school. Now as critically important as that is, and important as it may be to address that matter right away, now imagine that you suddenly discover that your home is on fire or a pipe has burst and is flooding the lower level in your home. This distinction is what Stephen Covey categorized as "Quadrant 1" matters that are both important and urgent versus "Quadrant 2" matters that are important, but not urgent. Most social and political matters fall into that latter category, and for me, the pain I feel can so dominate my senses that other than deliberately distracting myself with work-related tasks or issues involving my wife, children, or immediate circle of friends, even some things that I would normally consider important turn instantly trivial.
For those who have felt offended by me or even friends who have felt abused or neglected at any point over the past 15 years, I can only partially explain my selfishness in this way. It has to do with something now affectionately referred to around the Internet at the "Spoon Theory." It is well explained at this site but I don't know whether someone who does not themselves suffer from some kind of chronic pain can really understand. In many ways, I think it is very much like Blacks telling Whites that they could never understand how it feels to be Black, or women (particularly those who may have been raped or assaulted) telling men that they could never understand how it feels to be a woman. While it is true that everyone knows what it is like to experience pain, to experience the worse pain imaginable and to have it persist over weeks to months to years... you just can't know what it is.
Now, I don't say it for the potential sympathy or pity that it may elicit, but rather just to point out that I have a perspective on life that most cannot understand and that it colors my view of everything--especially my future, but also my present, especially when emotions are involved. It has been easier for me to simply shut myself down emotionally, and it took some long and blunt discussions with Stacey for me to understand how being emotionless with those who care about you can be as bad as being mean or hateful with the things you say or do.
So I am sorry if you are among what I am sure is a large host of individuals to whom I could (or should) have paid more attention or given more of myself. The way I see it, that kind of thing is often difficult for some and missteps occur even among those who consider themselves outgoing and engaging personality types.
I will not ask for forgiveness per se because I do not think I need to from anyone, but I will ask for your understanding, and if our friendship has ever had any meaning for or importance to you, then perhaps you could reconsider the significance of whatever perceived offense you feel excuses you for being mad at me or not talking to me?

The Real Solution, Part 3: Climbing Back Down the Mountain

While we often readily imagine the challenges associated with a task like scaling a mountain, it does not come as readily to mind to remember that after feeling the catharsis that must assuredly come with achieving such triumph--particularly for those who decide to specifically tackle Mount Everest--that the victor cannot dwell on that moment for very long before beginning what must, in its own way, be an equally-challenging descent back down the mountain. Everyone knows that "you cannot get something (good) for nothing" and also that "if it sounds too good to be true, it probably isn't true." So here are some of the "cons" that go along with the decision to try Buprenorphine for chronic pain relief instead of other opioid solutions....

As is true for all opioid medications, the slight variations in the structure of the molecule means that for different people, some medications will work very well and some will not. There would need to be a way to determine quickly whether or not Buprenorphine worked for someone or not, and then a means of determine which would be the best "next alternative" to consider if it did not work for someone.

The harsh reality of my life is that because of the intensity of my pain, I have tried many different opioid medications. While most were weaker in their pain-relieving potency when compared with Buprenorphine, other opioids do not have any "ceiling effect" associated with them, so the more you take the more pain-relieving effects can be felt, and eventually, once the pain sensation has been completely blocked, the individual begins experiencing feelings of pleasure as well. That is almost never going to happen with Buprenorphine. In fact, Buprenorphine will likely not, by itself, completely relieve the pain of anyone whose pain is above moderate levels.

For me, this is acceptable because the trade-off is that Buprenorphine gives me back the mental strength that helps me to better cope with the pain on my own. To me, this is more valuable than raw pain-relieving power because I also need that mental clarity to continue teaching as well.

I have been fortunate, though, to have worked for many years with a progressing pain-management physician--one of the pioneers and leading experts in the field. He and I worked together to try nearly every opioid legally "prescribe-able" along with a few other medications that have been known to have secondary effects of pain relief. Interestingly, many of the medications that I tried, a few of which are even considered especially potent for pain relief (i.e., Fentanyl, delivered directly into the intrathecal space of my spinal cord), made it more difficult for me to fight off the pain because of how they robbed me of my higher brain functions. It creates an interesting dilemma: do I so want to rid myself of the pain that I am willing to just progress through the rest of my life in a mental fog, sleeping most of my day away and being a drain on society and on everyone who cares for me, or am I willing to sacrifice some pain relief to get back my mind and use that mind to fight through the pain and still be alert enough to live life, socialize with loved ones, and contribute to society? I ultimately chose the latter.

For many months during the first few years of the onset of my condition, the tandem of Methadone for long-lasting (8-12 hours) relief along with Oxycodone for "breakthrough" (more intense) pain (2-4 hours) worked best for pain relief. It was not perfect, but it was the best combination of opioids that took the edge off the worst of my pain and got me through my school days well enough so that I could get home and collapse from exhaustion. (Amusingly, despite the fatigue from fighting off the pain all day and the sedation of the medication, I have always struggled to get any significantly restful sleep since the pain started. As a natural cynic, I appreciate the irony that I am completely exhausted and yet struggle to stay asleep for more than 30-45 at any time.)

Well, as I continued to try different medications, without significant success, it finally came time to try one final medication, this Buprenorphine. However, unlike the others, my doctor said that I would have to completely wean myself off of the existing regimen of medication before I could try the Buprenorphine. I would need to go without any pain relief except for what I could get from my spinal cord stimulator for 48-72 hours while my body worked through the existing supply of Oxycodone and (particularly the) Methadone. It was a scary prospect for trying a medication that might not have any relieving effects for me at all, particularly because it would take another 48-72 hours following my last dose of Buprenorphine before I would able to restart my original opioid regimen.

You see, Buprenorphine doesn't get along with other opioids. Unlike my previous regimen of taking both Methadone as a slow-release medication and Oxycodone for the most intense, "breakthrough" pain, Buprenorphine is only for long-lasting relief and cannot be combined with any other pain relievers. It will completely block the pain-relieving effects of the other opioids in your system so well, that it is now replacing Methadone as the drug of choice to help people overcome addiction to narcotics.

Having very few options, because the status quo was simply not acceptable, I waited for a longer break during the school year (I believe that it was Christmas time) to cease those regular opioids and try the Buprenorphine. Fortunately for me, I noticed other benefits right away, as did my family. Within two days of switching to Buprenorphine, while my pain was reduced a little less effectively, my thinking ability, memory recall, and even my personality (which I hadn't even noticed was as affected as it was) came back. For the first time in a couple of years, I felt like "me" again, and while the medication did not relieve the pain as well as the Methadone-Oxycodone tandem, with my mental faculties back again, I was better able to cope with the moderate pain I was still feeling. The combination of the spinal cord stimulator and Buprenorphine had brought me to a point where I was able to reclaim much of what had been lost with the onset of my pain disorder!

Making the switch to Buprenorphine and reclaiming my thinking, memory, and personality was like reaching the peak of Mount Everest, but I needed to muster up all of my courage and put together a safety net of loved ones around me to support me through the process. Without those things in place, the temptation to just give in and go back to my regular meds without even trying the Buprenorphine would have been the most likely outcome. However, now that I achieved that, I am still enduring the process of scaling back down, a journey I suspect will last me the remainder of my lifetime. 

I still struggle daily to fight off the moderate to severe pain I am always feeling, but I know from experience that without the neurostimulator and Buprenorphine, my pain is both constant and so excruciating that I doubt I would last more than a couple of days in that state. As it stands now, I have enough of my mental faculties to use my own coping skills to make up the difference I need in pain relief to get through my day until the next day begins anew. It may not be the kind of life that I imagined, but it is a life and I am grateful to be around and coherent enough to appreciate the feeling of helping a student do well in my class or playing catch with my son or watching a movie together with my family. None of this would be possible if I gave into the pain and laid in bed all day.

So my miracle drug is, I believe the solution to this so-called opioid epidemic. It will not only greatly decrease the amount of other opioids in circulation, but there would be virtually no incentive or appeal for those seeking to get high to obtain Buprenorphine.


It would mean a significant movement in re-education though--both for society at large (especially those in pain) and also for the entirety of medical professionals and pharmaceutical companies. More on that in the next blog.

The next blog ("In Conclusion: How the Medical Profession Needs to Change") will be posted on or around Sunday, July 2. Please do whatever you can to refer others to this blog series, especially if you happen to see a TV report or read an article anywhere regarding this so-called opioid epidemic.

UPDATE: This series and my concluding thoughts on the matter of Buprenorphine is currently on hold. I will seek to resume it and conclude it shortly after the 1st of January 2019.

The Real Solution, Part 2: Climbing Everest

In May 2006 I had had a successful surgical intervention with an implanted neurostimulator, but by December of that year things started slowly worsening again--a consequence of this genetic defect within me, this strange variant of Complex Regional Pain Syndrome. I was at a low point in my life--afflicted with constant, severe pain and taking a regimen of Oxycodone and Methadone that was negatively impacting my ability to teach at the level and quality I desired to deliver to my students as they prepared to face their future academic challenges in college.

It was then that I had a hard conversation with my doctor and was willing to make a desperate attempt to save my career. My doctor told me about a medication that worked differently than other opioids. This medication, Buprenorphine, is unique among all other narcotic pain-relievers in existence. It is what doctors call a "partial agonist." There is an excellent graphic that explains the difference in how Buprenorphine works in the body and why it is better than other opioids that you can see by clicking here.

In short, the way Buprenorphine is processed in your body is not unlike how it processes Vitamin C (in the most general sense--it's obviously a very different chemical processed by a completely different system, but the analogy works). You can take tons of it, but your body can only handle so much and it then funnels the rest directly into "waste extraction." In essence, it is extremely difficult to "get high" on Buprenorphine. For me, in terms of the pain relief, we initially took a few months to determine how much of the medication I needed to get equivalent relief, but Buprenorphine is much more powerful than most other opioids despite the fact that it metabolizes so differently than other opioids.

Morphine is the typical standard that is used from which to compare opioids, and even though there is a lot of personal factors associated with metabolism and height and weight that need to be considered, but all things being considered equally, Buprenorphine is considered to be about 40 times more potent than Morphine and Vicodin, and about 400 times more potent than Codeine. There is a very comprehensive chart at this link that shows the relative strengths of pain relieving effects in the body including some synthetic drugs are are only used to sedate large animals.

I have now been taking Buprenorphine for about nine years and it still continues to meet my needs--that is, along with my neurostimulator this medication makes what is considered the most intense pain condition known to medical science tolerable enough for me to maintain a full-time position as an educator teaching physics to college-bound high-school students. To me, this is a miracle drug and has restored my life. While I know that each person's metabolism is different and this may not work for everyone and every kind of pain, you have little to lose and so very much to gain.

I remember feeling an epiphany ...a moment of tremendous clarity when I realized that my personality had changed radically along with the loss of my higher levels of thinking and memory. Once I started exclusively on the Buprenorphine, I felt like I was emerging from a fog and I could see the Sun again after literally months of deprivation. It hasn't been perfect, but it has definitely been worth it and the best decision I have made even above my decision to get the neurostimulator.

However, like the decision made by a few daredevils in this world, I liken this decision to climbing mount Everest because it requires significant mental and physical preparation and building up an endurance to make the long haul of what I believe will be several more decades of my life living in constant moderate to severe levels of pain interspersed with occasions of excruciating pain. I imagine that there are some would willingly die to sooner end the torment not unlike those whose corpses litter the path to Everest's peak. Indulge me a little longer while I describe the pros and cons of making this choice....

Next blog post ("The Real Solution, Part 3: Climbing Back Down the Mountain") will be posted on or around Wednesday, June 21.

Post-script note: For those who are being treated with Buprenorphine for addiction, I think that there is a reason why so many centers that used to use Methadone are making the switch. By interfering less with the higher brain functions, in the same way that I now rely more on my own ability to cope with the pain, those who are truly interested in recovering from addiction will appreciate having the mental strength to do so.

Methadone was once the only real option for heroin addicts wanting to clean up their lives before an overdose ended them, but Methadone--despite being synthetic--is still, itself, highly addictive, and heroin addicts in the past were often only trading on one addiction for another that was only regulated better without necessarily being better. I believe that Buprenorphine holds the same potential for a miracle for addicts as it does for chronic pain victims, and greatly increases the probability that a "former addict" can reclaim much of what was lost of their past and who they were as well as hope for being a positive contributor to society.

I would love to hear from any former addicts who are now taking Buprenorphine, particularly those who once took Methadone, but any experience--even if it does not perfectly validate my position--would be a welcome contribution to this blog.

Post as a comment or email me at info@relentlessagony.com if you would prefer to maintain your anonymity, and just write your words in such a way that there is nothing personally identifiable so that I can pass it along without having to paraphrase it.

The Real Solution, Part 1: Bedeviled by Forbidden Fruit

[After further contemplation, I opted for a different title, and reorganized the blog so that it was not as long. It is my intention, however, to complete this series by the end of June and then edit and compile all blogs-to-date in a PDF brochure-type document that can be printed and shared.]

Everything really serious with my condition started really in early 2004, but it was only a couple of years into its progression that things really . The exact diagnosis had not yet been ascertained and I was not even sure that I would even live much longer. From the procedure that first set off this condition of mine, it took relatively little time for me to progress from Vicodin (a combination of Acetaminophen and Hydrocodone) to much more potent medication like Percocet (Acetaminophen and Oxycodone) and then eventually to just Oxycodone. Then I started taking progressively higher doses of Oxycodone, but the intensity of the pain would return every few hours and when it did, it was a miserable block of time waiting until my next dose could be taken and then "kick in." Finally, the best solution was to combine the Oxycodone with Methadone. Without experiencing any benefit from the pleasure-filled, euphoric effects that makes drug users seek so intensely after these very medications, I continued needing more and more of each medication--less because I was building up a tolerance to them, but more because the intensity of my pain continued to significantly increase as time when on.

A little more than two years after the initial incident, I was faced with the very real prospect of having to retire early from teaching. I had reached a point where I was taking 10-15 mg of Methadone and about 30 mg of Oxycodone every day and relying heavily on stirring up my own Adrenaline to punch my way through five consecutive work days so that I could recuperate over the weekend. Even at those dosages, however, it still only took the sharpest edge off of my pain, and my ability to think clearly and remember things accurately was fading in very obvious ways. That, along with the intensity of the actual pain, made solving physics problems quite challenging, even for me with both a college degree and a natural gift for physics and math.

Following the surgery in May 2006 to implant my spinal cord stimulator, I was able to enjoy a few months following the surgery where I went down to just a half dose (2.5 mg) of Methadone and only using a single Oxycodone (5 mg) when the pain was at its worst, but it was so much better (relatively speaking) that I thought I might be able to go back to a nearly normal life. Unfortunately, it took less than a year before I was back on a regimen of Methadone and Oxycodone that was again interfering with my thinking and memory recall.

This is the perpetual danger that those with chronic pain conditions must face: there is an ongoing temptation to rid yourself of pain, but the only way to effectively do it is to take so much opioid medication that you effectively change your personality and lose your ability to think as clearly. While the pain eats away at you and takes away the things that make you human, the medication that eradicates the pain does little better. While functional, when using the traditional (what doctors call "full agonist") opioids, your personality is radically altered and you lose bits of your working memory, so you become a different person. Either way, you are no longer you.

Either way, once you become afflicted with a pain condition, your life will change. The only thing over which you have some control is how it will change. As is true with so many other things in life, you are faced with determining, and then subsequently choosing, the lesser of the evils.

But what if there was a third option? One that required sacrifice, but one that was the "least" evil?

Next blog (to be posted on or around Wednesday, June 14th): The Real Solution, Part 2: Climbing Everest

Bad Solution #3: Just Deal with It

Another way to look at this solution is just to not look at it, or let the status remain "quo." 

The most popular way of dealing with this problem is to simply ignore it. It's the path of least resistance because most people who have a chronic pain condition slowly fade out from the lives they used to have. They stop going out with friends. Many lose their jobs and are no longer able to work at all doing anything because employers are no required to accommodate conditions that are completely intermittent and unpredictable in their intensity and duration, nor should they be. However, one consequence is that those with chronic pain soon become a forgotten people and no one remembers them who do not go out of their way to maintain those bonds.

That, of course, is hard to do because if you do care, you feel helpless when you cannot do anything to comfort that individual and you may even think that you are harming the situation to visit and remind your friend of the life that they used to have. While there is certainly some of that, it wouldn't be inappropriate to have that conversation directly with your friend. Just ask the friend directly; they'll be glad you recognized the need and cared enough to ask.

Other than the incident of a person who overdoses (and apparently was some kind of angel right up until that incident), the media and society don't seem to care much about those with chronic pain. The issue of opioids and who is taking them doesn't seem to matter until someone gives in to their addiction and takes too much.

You won't, however, often see a pain victim overdose on opioids. We can't afford to risk that. If we are at that point of being genuinely suicidal, most will do something far more abrupt and more likely to be successful than taking pills. Pain victims also live in fear that any act of straying from their prescribed regimen might put them at risk for a doctor cutting them off from more medication, making suicide the only option left.

Sadly, depending on how bad the pain is, some chronic pain victims can't reach that euphoric state that makes opioids so tempting for others. Without even considering issues involving tolerance build-up, chronic pain victims first have to relieve their pain before any pleasure can be felt. The amount of medication needed to achieve that would be enough to cause serious problems and slowing respiration.

I hope that this series has been informative for you thus far. My next few posts should be more regular now that the school year is ending... not that don't work over the summer months. Even after 20 years, I still spend many days over the summer preparing things and planning lessons for the coming year.

As the blog continues, I will present my thoughts on a real solution for the so-called opioid epidemic. My solution is not complicated and it is a genuine solution. My solution is one that doesn't blame or hurt those already dealing with a legitimate pain disorder and and also one that acts prohibitively against abuse from those seeking to get high leading to the complications of overdose.

Next post "The Real Solution, Part 1: Remove the Temptation," will be published on or about May 28, 2017.