The Pain Mastery Institute, which I’ve been blogging about for a couple of months, is shutting down due to financial considerations. Their courses have been useful to me but not nearly as useful as if they had survived long enough for me to get through the whole program.
The main thing I learned from the courses is that much of what is available for mastering chronic pain is drawn by observed people as they take actions or make decisions which assist them in managing their pain, or ameliorating the amount and intensity of pain.
While the course is gone, and the Institute website shut down, this doesn’t mean that I’m abandoning my pursuit of effective pain management strategies. So keep watch for my blog because I will coming back with a new approach soon.
Update on Intermittent Fasting
Starting on Monday this week I began a five day fast, which so far has been a bit frustrating and challenging. The second day and the third day I found myself absolutely starving, which is odd because up until now, fasting for three days a week, 36 hours, I have never been really hungry.
It takes a bit of a different strategy for longer fasts, like a five days on, four days off, but I’m learning and will be putting together a new primer based on somewhat longer fasts.
This has been a really sad and horrific week for me, and for many Canadians. 147 Canadian residents and citizens were killed this week by an airline shot out of the sky by Iran, either by mistake or by design. Either way, we have all lost so much and I can’t really even begin to make any sense of it. I am just sick over it, and I didn’t know anyone personally on the plane, although I do know some family members.
The Prime Minister of Canada has been highly visible in his demands for accountability for this disaster, both from Iran and the United States governments, who put into play the violent altercation that led to these deaths, whether by misadventure or by malice.
I don’t know whether to rage or to cry, or both. I’m not expecting any closure any time soon. Iran is virtually certain to lie through their teeth on this, and Trump will do no better. This is a terrible tragedy for everyone involved in the flight, and all of their country mourns their loss.
WEEK 2 More Relieving Skills for the Physical Intensity of PAIN
The second weekly lesson from the Pain Mastery Institute is about another set of skills designed to reduce the experience of pain in the body. These skills are to impact pain that is a result of muscles tightening up as a reaction to pain of any type, located in various parts of the anatomy.
What is taught is a series of tensing and relaxing of muscle groups, starting at the toes and working up to the head and neck of the body. I was told to tighten and then release systematically the tension I had created, and then relax after releasing, and then breath deeply.
These techniques are very similar to some exercises I learned many years ago, as part of creative visualization and meditation. Instead of focussing on achieving a receptive state of mental suggestibility, these relaxation techniques are designed for the specific purpose of releasing muscle tension underlying many of my experiences of pain – especially in major muscle groups in my body, such as cramps in my feet and calf muscles, lower back and upper back muscle aching and tensions, head aches from neck and head muscle tensions. And so forth.
After completing the lesson, and doing all of the tightening, releasing, and relaxing exercises for the various parts of my body I realize that this technique is intuitively a part of pain management strategy for most of us, but only used occasionally. The purpose of the course, I’m sure, is to create a conscious awareness of yet another technique that promises some relief from pain, which we have all practiced once in a while, and bring this technique into daily use, as a part of our Pain Toolbox of resources.
Even after only two of the weekly courses in the Pain Management Institute online course I am beginning to realize the efficacy of this program. It’s success will be in part a result of bringing into conscious control elements of knowledge and behaviour that help ameliorate pain. These techniques are a part of innate knowledge but without conscious awareness of their use and potential benefit we only apply them randomly, rather than on purpose to structure our response to chronic pain.
This is a good start to a realization than I may indeed have the ability to management and improve my experience of and control of pain, not necessarily all at once, or even ever completely, but incrementally somewhat better.
When I started this set of blogs related to pain I was looking for some real improvement in my experience of and control of pain. Even after only a few weeks of analysis and discovery I am more hopeful of making gains.
In this week’s lesson on managing pain, I learned some new concepts about how pain functions in the brain, as well as on how to take something I already knew, and provide a better and more purposeful way to use it to reduce my experience of pain in my body.
The main points of this lesson are as follow:
Pain is experienced in the brain, after information is sent to the brain through neurons transmitted through the spinal cord.
Passively attending to something in your body, other than the pain, will reduce the experience of pain to some degree or other. Sometimes this reduction in the experience of pain is significant, sometimes not.
Actively creating a mechanical distraction, especially in the area of the body which is experiencing the pain, can have a positive effect on that pain.
Interestingly, by creating a mechanical action, such as shaking your hand if you injure a finger or burn yourself, will reduce significantly the amount of pain actually experienced, by actively reducing the signal from the pain receptors in getting to the brain. This takes place in the spinal cord itself, rather than in the brain, so the reduction in the pain can be very effective.
Now, lets stop thinking about the theory of pain, and think about what the theory of pain is teaching me. If I can move my attention from focusing on a specific cause of pain to focussing on some other part of my body, such as my face or ears, for example, I can significantly reduced my experience of the pain. This reduction is my experience of pain is relatively mild, for me, at this point, but it serves to reduce my experience of neuropathic pain from excruciating to merely troubling, a huge gain since when it is only troubling I can often drift off into sleep, which is nearly impossible when my neuropathic pain in my feet is most extreme.
Through practice and the investment of some time I hope to increase the effectiveness of this pain strategy, which holds out some promise in being an active tool to improve my current experience of pain.
The second strategy in this chapter of the course on Mastering Pain, is about a more physically active method, and requires some mechanical actions to be taken. So, when the pain in my hands or feet is most severe instead of mentally focussing on another part of my body, I use an action to draw my attentions elsewhere. This action can be pretty simple, such as playing with my car keys or making a cup of tea, and really paying attention to what I’m doing, rather than dwelling on my neuropathic pain.
You’d be surprised at how often this helps reduce the experience of pain, sometimes by a lot, depending on how absorbing the actions being taken are, and depending on how seriously I focus on them.
Before I started taking this program I think I intuitively already knew some of this information, without knowing the underlying physiology of the spinal cord and the part of the brain responsible for experiencing pain.
A significant part of the benefit of taking this program is the development of a more organized and deliberate strategy for dealing with my everyday pain, in ways that improve my experience of life through my own conscious efforts, without taking opioids or other pain killers to deal with the pain. A major goal of Mastering Pain is to create a Personal Toolbox of resources to assist with what has become a major preoccupation of my life, the toleration and management of chronic pain.
For me, the alternatives to doing this program seem few and very unattractive. I have no willingness to go down the road of pharmaceutical solutions for my pain, unless I absolutely have no choice, in order to tolerate the ever increasing amount of pain in my life. It may be that at some point I won’t be able to function, whatsoever, without pain medications, but I intend to push that day off as long as possible.
Note on formatting
Up until this week I was using a Drop Cap for the first letter of each paragraph in my blog. I recently received feedback from a mobile reader, using her cell phone, that said that the Drop Caps were screwing up her ability to follow my blog, by throwing text all over the place, when viewed on her phone. So I’m not going to use them in this blog from now on.
The most important thing about the MPM program is that it is highly systematic and based on the scientific method. As a chronic pain sufferer I know that I have tried many different approaches to mitigate or deal with my pain. I tried pain killers, physiotherapy, exercise, anti-inflammatory drugs, sleep aids, music… even sex and other intense emotional and physical interactions to try to drown out the noise of pain. None of them make the pain go away, but sometimes I have felt some amelioration of the pain. For me the most consistently successful of these strategies has been distraction from the experience of pain by focussing my attentions on some other thing, usually an interaction with another person, or sometimes a creative visualization of an intense subject.
The key to the method taught in my course, however, is not the specific technique itself that worked, or didn’t work, but he careful examination of various approaches using the scientific method, to test a number of potentially helpful strategies, in an orderly manner. Those that seem most promising are then examined in the context of the other methods, with the eventual idea that some of these may be even more effective if combined together.
Interesting enough, the very fact of dispassionately examining what has worked in the past in an organized fashion itself helps to ameliorate some of the pain by lessening my fear that it will continue to be out of my control altogether. No matter how sever the pain seems at any given moment, it is made far worse by my imagining that it will only ever get worse, and the fear itself tends to increase my awareness and sensitivity to my pain. Analysis actually substantive reduces the experience of pain but bringing it into the realm of personal control. Believing that I can control the pain, to any significant degree, actually helps me control the pain, to a degree.
Here is a sneak peak at what is in store for me as I follow the Mastering Pain Management training program.
Activate Endogenous Opioids – Ever wish you could feel that “high” that runners talk about, but know you aren’t about to go run 12 miles? That high is from our body’s own opioid system and it doesn’t require running to trigger it. In fact, there are a number of ways to turn to the system on. The biological evidence shows that we can do this on your own in just a few minutes. While some of the skills might involve imagination, the effect is not imaginary, the opioids are real, the response is real, and the science to demonstrate the process is real. These are some of the most powerful IMMEDIATE RELIEF skills of the Mastering Pain Method. In person, we have witnessed an average of a 50% drop in pain intensity. Its now your turn to discover how well the skills work for you.
Retrain Sensory and Motor Nerves – Learn how to have mastery over out-of-control sensory nerves and motor nerves that are keeping muscles guarded and tight or sending signals to the brain that aren’t helpful.
Rewire Agony/Suffering Circuitry – Change the patterns in your brain that make pain so unbearable. Clear cut evidence exists showing that we can change the way our brains respond to pain and only experience it as a sensation without all the agony and suffering that is usually associated with it.
Train Vagal Tone/Relaxation Response – Pain is so overwhelming and activates our danger sensors leading to adrenaline bursts from the fight or flight response. To calm this response we can train a special system, the Relaxation Response, that is associated with the Vagus Nerve.
Engage Pleasure Circuitry – Change the patterns in your brain that make pain so unbearable. Clear cut evidence exists showing that we can change the way our brains respond to pain and only experience it as a sensation without all the agony and suffering that is usually associated with it.
Engage Restorative/Anti-Inflammatory Systems – Our body produces inflammation when stressed. And the body is clearly stressed by pain. Regardless of the cause of the pain learning how to put a stop to the inflammation is critical – even more so when the cause of the pain is an inflammatory condition. Our bodies’ are amazing full of ifferent ways to stop and start inflammation. Learning to turn off inflammation and turn on the restorative systems.
Retrain Interpersonal Neurobiology – Our body responds when we interact with others. It has certain patterns of responses to different environmental cues. These patterns impact our sense of self and our relationships. Learn how retraining these skills can improve pain and begin the trend to change the cultural stigma of chronic pain.
It often seems highly hypothetical to consider that pain may be somewhat controllable by following a road map of different strategies in an organized and systematic manner. My sincerest hope is that the program is right, and I can learn to have a much higher level of control than I have at the present time. Many years ago I took a training course in personal development which taught me that “understanding is the booby prize” by which the trainers meant that it is in doing something rather than in understanding something that lies the potential for real change in human experience. However, without the “booby prize” of understanding the nature of pain, and systematically examining what works and doesn’t for me, I am highly unlikely to accidently come upon actions which will have any significant effect over the long run, or even have any real impact on a moment by moment basis.
How has pain been a complex problem in your life? How has pain interacted with your movement, energy, sleep, social life, finances, identity, memory, and mood?
Mastering Pain Institute
After listening to and reading the materials in the 1st leasson of the Pain Mastery Class it asks the student to answer the above questions.
How has pain interacted with my movement? As pain from various causes has increased over the past few years I have observed that my ability and willingness to move has undergone an uncomfortable metamorphosis. Simple tasks like walking, bending over, picking up items, getting dressed, doing my toe nails, making the bed… etc. have all become much more difficult.
Neuropathic pain has combined with arthritis to make steering the car for long periods increasingly painful. I alternate from my left to my right hand constantly as I drive, because the pain builds up in each as it is used. Eventually the pain is too great in both hands and I have to take a break. The pain in my legs and feet make driving hard as well, and certainly limited my pleasure from doing so. Driving a car is one of my great pleasures, or, it used to be one of my great pleasures and it represented a kind of freedom that is now gradually disappearing from my life.
The same can be said for a lot of routine physical tasks, all the way from making the bed to cleaning the mirrors in my bathroom. I didn’t used to mind housework or gardening but it is now so painful to mow the lawn that I’d rather let it grow twice as long as I used to. These type of restrictions have inevitably reduced my freedom of movement, and my interest in and willingness to do routine, simple life tasks.
How has pain affected my energy? Anybody who suffers from chronic pain will attest to the fact that constant, unrelenting pain is exhausting. There is almost no time when I’m not tired and so sore I feel like I really just want to lay down and sleep for a while. Even a nap would seem like a relief, if I can sleep, that is.
The net available energy is a function of pain in my body. The more severe the pain becomes, the less energy I have. And not only to do life in general, but in having the interest and energy to participate in the things of life. A lack of energy is behind so many other deficits experience by people with chronic pain that it tends to blind us to how serious it actually is. Without sufficient energy to function properly nothing actually works the way it is supposed to work. How the hell am I supposed to do my job at work, when I hardly have enough energy to get there in the first place every day?
How does pain affect my sleep? To most of us with chronic pain sleep is seldom deep or really very restful. Not a single night of sleep goes by without being disrupted, again and again by waking fully or partially because of pain in the body. For me it is all sorts of different parts of the body and different types of pain, but it all hurts, and it all makes me awaken at some point during sleep. If I wonder why I’m so damned tired all the time, I simply have to remind myself that I really haven’t had a decent night’s sleep in years.
I’ve been diagnosed with sleep apnea, but sleep apnea really isn’t the reason I’m awake half the night. It’s the pain, the pain. Snoring is a part of it. Blocked airways aggravates it. But pain causes sleep interruption, over and over again, every single time I go to sleep.
How does pain affect my social life? What social life? Who really has the energy to maintain a social group or friendships when you’re in constant pain? It takes energy I don’t have and mobility that is a constant struggle, simply to get out and visit with people. I’m no longer the happy go lucky guy I used to be. I try not to spread my pain around, or make my kids and grandkids suffer from my experience of pain. But I wonder if my increasing isolation from them is at least partly because I do longer know how to overcome my pain for long enough to actually properly engage with people.
And being socially isolated also increases my experience of pain, because lacking real human contact with others is not only uncomfortable, but it’s also actually harmful physically because it encourages inactivity and passiveness. Instead of getting out and doing things with the people I love, I stay at home, watching television, at least partly because it’s less painful than the alternatives of getting out of the house, and doing the things necessary to have a life.
How does being in pain affect my finances? This is one of the things that is most humiliating about being in pain. Instead of being vibrant and capable, I’m tentative and withdrawing from challenges. I used to love going to the office and taking on new challenges, meeting new people, creating new financial opportunities for myself, and for my staff. Now I have no staff, and I’ve been afraid for years of taking on jobs that I know I’m qualified to do because I’m afraid that I’m going to let them down, or worse, prove myself to be incapable of handling the physical and emotional demands of the work.
In addition, my increasing health problems cost a lot of money, which I am now having to pay with a lot less income, due to my reduced employment capabilities. I struggle to manage my prescription deductibles and copays. And that’s for the prescriptions, which doesn’t actually include any pain medications I can trust. Nothing the doctor has prescribed for pain has actually helped very much, if at all. I know that opioids would be more effective than OTC drugs but I also know that they are highly addictive, and have major other problems that I don’t need to add to my pain.
And being chronically short of money, as well as in pain, means that I can’t take advantage of one of the things I used to do a lot, which was going out to nice restaurants and have good meals with friends. Shortage of money means that I’m socially isolated by it, as well as by my resentment over finding myself in this situation. I never wanted to be dependant on anyone else but I find myself in a situation that make this every more a fact of life.
How does pain affect my sense of identity? Truthfully, I don’t really recognise myself any more. I no longer feel like the man I used to be, and I certainly don’t have the confidence I have always had. I’ve always thought of myself as a highly charged, somewhat hyperactive and oversexed Type A personality. If I had faults they were likely the faults of thinking that I could do anything, be anybody, accomplish anything. A little bit of humility probably wasn’t a bad thing for me to learn, but pain has driven me to distraction. The amount and persistence of pain has now reached proportions that are disabling my sense of self to a point of no return. I don’t actually know what it would look like for me to be me, the way I have always been. So damage to my sense of identity is a real cost of being a victim of chronic pain.
How does pain affect my memory? My partner says that I’ve become a lot more forgetful than previously. I’m not sharp anymore, and I don’t automatically pick up on things so quickly. I don’t think I’ve lost my marbles, but I get confused more easily and mix things up, despite my best efforts to not do so. It means I slow down, because I can no longer count on my memory for important information. I’m a lot more cautious than I used to be, if for no other reason than I hate being unable to remember even the simplest facts or common words.
I’ve always been a prodigious reader, at one point reading more than a book a day, not to mention newspaper and magazines. Now it takes me a week to read a novel, and a month to work through a non-fiction title, no matter how interested I am in the subject. I don’t remember names very well, I never did, but I’m also losing the ability to remember what books I’ve read or which ones I liked or didn’t like. I find myself half way through the first chapter of novels only to realize that I read the damned thing six month ago. So yes, memory is being affected negatively, if only because I’m so distracted by the constant pain interrupting the flow of my thoughts and feelings.
How does pain affect my mood? I was diagnosed as being bipolar when I was about thirty years old, after a major breakdown and depression. After being hospitalized for six months I came out of the hospital with somewhat better emotional management tools than I had previously. Relatively quickly I abandoned the prescriptions for bipolar I had been given, because they made me feel like I was living in a fog. And I reconciled myself to living with vivid emotional ups and downs. So depression and mania have long been a part of my nature, and my life. I’ve done well in managing to live a full life despite these problems, but now it feels like depression stalk me, without the accompanying manio to provide any balance to it.
There are two kinds of depression with which I struggle, one of which is a direct result of serious and chronic pain. It’s tough to get out of being depressed when you feel like you’re under a constant pressure cooker caused by physical and mental pain. This past weekend, in addition to chronic neuropathic pain in my hands and feet, arthritic pain in my shoulders, fingers, hands, I was also slayed by a serious migraine headache. I haven’t suffered from migraines on a regular basis for years, ever since I started practicing a form of self-hypnosis that seemed to be effective at shortening their duration, and eventually led me to being able to predict and prevent the worst of them.
Even that ability seems to be beyond my control these days, because it’s pretty hard to meditate when I’m in so much pain that I can hardly sit still.
I don’t know if this exercise in counting the ways that pain affects me is supposed to make me feel better, but it hasn’t yet. I also suppose that to defeat an enemy I first have to understand the enemy and all the territory it has staked out in my life. This is the exercise from Chapter 1 in my program to begin to manage my pain. I hope the next exercises don’t leave me here.
Welcome to the orientation course for the Mastering Pain Method training. These are the core lessons of the Mastering Pain Method, providing insight into the overwhelming problem with pain in our society, the biological root of all pain experiences, the key scientific principles of pain mastery, and the biological rationales for each and every tool taught.
To be able to describe the primary physical systems we can change to change the pain experience.
To be able to identify how these primary systems match the complex components of pain on our pain compass.
These core lessons are aimed at providing the framework for all future lessons. We developed these lessons to give you clearer understanding of the Mastering Pain Method, the rationale, the ins and outs of the approach, the goals, and the basics of biological basis for the skills training.
In response to reading my blog, one reader suggested that I might consider changing my point of view about pain, and perhaps stop fighting it. Instead it is suggested that perhaps changing this might actually improve my long term experience of pain, and perhaps make it more something I can live with and accomodate rather than something that continues to drive me crazy every day.
After reading his response to my blog I decided to go online and see if there were any other approaches to pain management I could take on myself. I should say, non drug treatment that might hold out hope for a better life in the future for me. Needless to say, this is a newer approach for me, but one not without precedence. For years and years I believed that diabetes was a disease about which I could do little, except take the medications prescribed for me by my doctors and try my best to accept that it was inevitable. The truth is that I always had more control over the disease than I was willing to exercise, and if I had really understand it, I could have begun addressing my diabetic behaviour years and years ago.
Maybe I could have avoided diabetic neuropathy and a whole host of other problems I’ve had as a result of my diabetes.
But I failed to listen to options which might actually have helped, and now am faced with having to make substantive changes I should have made years ago.
The same thing may be true about pain. Pain is happening in my body. Whose body? Mine. As it has increased over the past five years I have merely been dreading it’s inevitable progress as I have experienced more and more pain. Well, that’s done.
My first step towards managing my pain is for me to understand it better. Thus the Mastering Pain Institute, and their program of study to better understand our pain, and to do something about it.
I am adding this to my journey of fasting and lifestyle changes in order to save my own life, and to improve it as much as is possible from what I learn.
DIABETIC NERVE DAMAGE (neuropathy) affects approximately 60-70 percent of patients with diabetes. Once again, the longer the duration and severity of diabetes, the greater the risk of neuropathy.
There are many different types of diabetic nerve damage. Commonly, diabetic neuropathy affects the peripheral nerves, first in the feet, and then progressively in the hands and arms as well, in a characteristic stocking-and-glove distribution. Damage to different types of nerves will result in different symptoms, including
• tingling, • numbness, • burning, and • pain.
The incessant pain of severe diabetic neuropathy is debilitating, and the symptoms are commonly worse at night. Even powerful painkillers such as narcotic medications are often ineffective. Instead of pain, patients may sometimes experience complete numbness. Careful physical examination reveals decreased sensations of touch, vibration, and temperature, and a loss of reflexes in the affected parts of the body.
While a loss of sensation may seem innocuous, it is anything but. Pain protects us against damaging trauma. When we stub our toes or lie in the wrong position, pain lets us know that we should quickly adjust ourselves in order to prevent further tissue damage. If we are unable to feel pain, we may continue to experience repeated episodes of trauma. Over the years, the damage becomes progressive and sometimes deformative. A typical example is the foot. Significant nerve damage can lead to the complete destruction of the joint-a condition called Charcot foot-and may progress to the point where patients are unable to walk, and may even require amputation.
Dr. Jason Fung, The Diabetic Code p.28
Diabetic neuropathy has led directly to my willingness to undergo a radical lifestyle change, including intermittent fasting, and major changes to my overall dietary behavior. In particular, major pain to my hands and feet has increased exponentially in the last couple of years.
This type of pain is almost invisible to the people around a diabetic. They often wonder, I’m sure, what the hell is wrong with me, as I stumble from step to step, at times looking for all the world like a drunk after one too many.
Despite my best efforts to appear normal, it is sometimes impossible for me to avoid an outburst from a sudden onset of sharp pain in my hands or feet, without any advance warning that my chronic pain will suddenly become extreme, even if only for a few moments.
Dr. Fung mentions that it is worse at night while a diabetic sleeps or rests. Well, there are many times when neither is really possible, and my partner lays across from me worrying as I toss and turn in pain. And neuropathic pain is only one of the causes of pain in my body at night. Others are arthritis, bursitis, and severe muscle cramps.
Combine these with fibromyalgia and I guess that I have won the sweepstakes of pain, so far without winning the big prizes, premature death or paralysis. Even without the immediate threat of dying, chronic intense pain is exhausting, often leaving me so tired that days go by without being able to accomplish even the smallest things. Even I tend to feel like a lazy sonofabitch because my progress in so many things is fractional or even non-existent.
I wish I were faking it, of which I have been accused at times. If I could make it go away, I would indeed. The best thing my doctor ever told me about neuropathy is while I can still feel the pain, it is still at least possible that my nerve damage may partially recover as I reduce my diabetes and stop making it worse. Once the nerves are deadened to the point where my feet are simply numb, there would be no hope of ever recovering any of the la\ost sensitivity in my feet or hands.
This is one of the reasons why I am so determined to take any measure that has even a promise of helping me eliminate or radically reduce the effects of diabetes in the future.
It is Friday afternoon, and I’m sitting at my desk thinking about the past week. Wow! What a week it has been, and despite everything I’ve kept to my Intermittent Fast.
It has been a struggle, not to keep up with my fast, but to keep my blood glucose in tight control. I try to maintain my readings in a range between 4 and 7.8 mml, from my Free Libra meter. Twice in the past week my readings have been wayyyyy too high, up as high as 15 mml for a few hours after a meal, and even as high as 10mml all day long on my fasting days. Ouch! But I need to explain that in order to keep my levels in the right zone, it isn’t as simple as it seems.
I have to control not only my food intake, which I’m managing by eating low carb healthy meals on my eating days, without being obsessive about it, and fasting my three days a week, but also adjusting my insulin and other medications to balance off my fasting and feasting.
This week, for the first time, I haven’t been taking my jentadueto which up until I’ve been taking twice a day, once in the morning and once at dinner time, even though I’ve been skipping on my fasting days. This week I’ve stopped taking them altogether, largely as a result of concerns about chronic pain, which seems to have become much worse since I switched from pure metformin a couple of years ago. My pain this week has been terrible, and I’ve thrashing about trying to figure out what’s triggering it.
Metformin itself can cause chronic pain, either as a standalone drug or as a component in Jentadueto.
I probably should have increased my insulin even more than I did, both on my fasting days and my eating days. As an adjustment for not taking the metformin I increased by long acting insulin to 35 g from 30 on my fasting night, and 40 to 45 g on my eating days. On both days my blood glucose levels were high all day, above 8mml but even higher, up to 15mml.
Tonight I’ll increase my insulin long acting to 50 units, and see if that does the trick, along with controlling my carbs. I’ll get it right, sooner or later.
However, what made me say “Wow” to my week is that this is the first time in my life I’ve actually been a paid actor in a documentary tv series. I don’t know if my scene will end up on the cutting room floor, although I hope not, but in some way it doesn’t matter. I’m now officially an “actor” because someone has paid me to appear in a movie or tv show.
One of the things I’m determined to do is to try new experiences, and to expand my capacities. Having shot one show suggests that I can do more, if I want. And I think I do. It’s important for me to make some money, of course, since I don’t think anybody can live on their Canada Pension Plan and Old Age Security checks. But I don’t need to make a lot of money, just enough to take the edge off, and be able to afford the luxuries of life, like food and housing.
The fact that my acting debut happened the same week as my excruciating pain, and all my adjusting of my meds is perfect. Fasting doesn’t interfere with life, it is simply just another part of life. Pain interferes with life, for sure, but I won’t allow it to stop me from doing something fun and interesting.
Yesterday I began a critical review of my current health situation, with a view to improve my future results by making some new decisions based on the current facts and trends.
Here is a recap of the situation as I see it now. I am taking the symptoms I listed yesterday and discussing each of them in the context of my current method of dealing with them, and/or discussing the cause of each of them as best I can, given that I’m not a doctor or scientist trained in this.
Frequent urination – especially at night, interrupting my sleep.
The whole issue of urination and bladder control is interconnected with so many of my other underlying issues so it’s probably a good place to start.
Problems with urination are a little bit like the canary in a mine that warns of trouble. One of my earliest indicators that I had a problem, (and it might be diabetes) was having a need to urinate frequently, both during the day and at night. This started in my thirties, almost thirty-five years ago.
Diagnoses of the problems with my urination were complicated by a discovery, in my thirties, that I suffer from a relatively mild form of spina bifida, which despite it not being debilitating does have some significant neurological effects on my lower body, including sexual response and bladder control. This wasn’t great news to hear when I was only in my thirties, but everything the doctor told me about the possible side effects of spinal bifida occulta has surfaced from time to time since then.
Like many other men with any problems with their genitals and urinary systems, including urination or sexual performance, I generally tried to ignore the problem as much as possible. After discussing the potential effects of the problem with my lower spinal column with the back specialist I tended to ascribe any problems to the back and nervous system, including periodic difficulties with both urination and sexual performance.
In the spring of 1985, when I was 32 years old, I also exacerbated the problem, by choosing to undergo a vasectomy, without understanding in advance that the operation could have unintended side effects. Unlike what I had expected, the operation resulted in swelling of my prostate and my testes and an infection in my urethra and bladder. For more than a year I suffered severe pain from both urination and sexual expression, and my soreness persisted for several years before fading away completely. A prescription was given to me to reduce the swelling of my prostate, but it took some time to take effect, and as it was significantly swollen, there were physical effects on both sexual function and urination.
As one might expect, given the pain, there were also emotional effects and a significant impact on my intimate life, in ways I would not have normally expected.
My reasons for having a vasectomy still seem as valid today, as they were at the time, however, part of the decision to go for it turned out to be less true than it is in most cases. My medical results included significant pain, reduced enjoyment of life, and a much higher level of anxiety about the whole subject than was probably warranted.
The argument for having a vasectomy is that it is generally considered a relatively benign surgical procedure, done in the doctor’s office as a day surgery. For a woman to have sterilization surgery is much more invasive, not to mention that it results in huge hormonal changes. My wife and I both thought a vasectomy would be less problematic, and we were probably right, despite how frustrating and painful it turned out to be.
It continues today, as so I suppose I’m used to it. However, continuing declines in muscles and nerves is also contributing to further problems, which require a certain fastidiousness to avoid embarrassment because of weakness in bladder control. It’s not promising for the future, because if it continues to decline I can see a future including adult diapers. It may be already as bad as it is going to get, at least that’s my current hope.
So my problems with sexual function and urination really started then, and it was only somewhat later that I realized that my need to urinate more frequently as I was getting old might have a relationship to diabetes.
Poor sleep – several things wake me up at night, variously including frequent urination, frequent cramps in my feet and calves, pain my shoulders and hips, dry mouth and nasal congestion, sleep apnea, hay fever, and difficulties breathing.
I’m not sure that I’m doing this analysis in the right order, but this is the order I listed my symptoms yesterday, so I will follow this list and get to the underlying stuff as it comes.
I have a lot of trouble sleeping through the night. I have a CPAP machine to help me deal with my sleep apnea, with which I have been having problems. The problems with the CPAP machine aren’t really with the machine itself, but with on again off again sinusitis that makes it almost impossible to sleep with the device forcing me to breath through my nose. So when I’m congested I don’t put it on. So it doesn’t do anything if I don’t use it.
So one of the new decisions I’m making as I do this analysis is to start using the damned CPAP every night possible. When I was using it, it did improve my blood sugars and I suppose it improved my sleep, although I didn’t feel much more rested then that I do now. In other words I’m still exhausted most days, regardless of the CPAP.
The problem with cramping in my legs and feet is another thing that wakes me up in the middle of the night fairly frequently, although not every night. When it first started up a few months ago, I asked a doctor and she advised me to use Magnesium and Calcium together to help. I started taking them every day, and my cramps in my calf muscles has been reduced to once or twice a month, instead of every night. However, this remedy has not improved the cramping in the arches of my feet, or the muscles in my toes.
Other body pain and neuropathic pain are also problematic in getting a decent night’s sleep. Arthritis and rotator cup problems wake me at various times in the night, and make it difficult to get back to sleep. Neuropathic pain which is merely irritating during daylight hours seems far more painful when I am at rest. Ergo, more interrupted sleep and more pain.
Chronic pain during waking hours – moderate to severe pain in my feet, neuropathic pain as well as mechanical distress, including pain caused by walking on supersensitive soles of my feet, as well as my toes.
I am taking Gabapentin, an anti-seizure medication which has shown to help with neuropathic pain. It may be providing me with some relief from the neuropathic pain, but the benefits are still uncertain to me. Would the neuropathic pain be worse if I were to wean off of Gabapentin, due to the numerou side effects cited in the literature?
Also… periodic moderate pain in my back and shoulders, and more serious pain in my lower back and hips when walking more that 1,000 to 2,000 steps.
Various types of chronic pain plague my waking moments, including arthritis in my hands, shoulders, hips and legs. Tendonitis has my hands bound up with pain. Inflation combines with ongoing pain.
Persistent breathing problems – mild to severe asthma on a continuing basis, almost always somewhat symptomatic but much worse when exercising or physically stressed. Sometimes exacerbated by emotional stress or conflict. Of all my symptoms my breathing problems are the most intrusive, making ordinary activities difficult or impossible. I am currently taking three separate inhalers to remediate the asthma and borderline COPD. All of them have side effects which make my sinus and throat problems worse, and while they help me breathe, they make my singing voice harsh.
Chronic physical exhaustion and fatigue – comes and goes during the day but is worse during periods of relative inactivity (sense of exhaustion) and during periods of exercise (weakness and muscle fatigue).
Addressing these symptoms is something I haven’t really been able to address, yet.
To close the blog for the day, I’ve decided to stop here and pick it again tomorrow or Friday. All of this thinking is making my head hurt, but I realize that I haven’t really given enough thought to the role of the many drugs in my system, and how their many potential side effects may be effecting me.
I have not been diagnosed with fibromyalgia, at least not yet. However, the development of chronic pain has paralleled my diabetes over the past twenty-five years. For most of these years I have taken metformin or other compounds including metformin, which may have been providing some mitigation of the numerous forms of pain I have battled with over the years.
So, in addition to the pain potentially caused by “dysfunction within the brain’s small blood vessels” caused by insulin resistance, as noted in the report on this study, I think researchers should also study the link between inflammatory diseases and diabetes, to determine any causality, either way.
Having had a lifetime of inflammatory issues, starting with chronic allergies to a multiplicity of substances, arthritis, tendonitis, asthma among other painful inflammatory symptoms have laid the groundwork for neuropathy and muscular inflammation. The pain in my feet and hands has nearly become disabling from a combination of pain from neuropathy, arthritis and tendonitis.
In the meantime, my medical practitioners have their hands full trying their best to assist me in dealing with the symptoms, as well as with the underlying issues related to diabetes. My muscle and skeletal pain issues are largely untreated while I struggle with diabetes, as an insulin dependant diabetic.
From this report, among other studies I’ve read, it is clear that there is little that can be done to reduce my experience of chronic pain that does not also improve my A1C levels on an ongoing basis.
Three things need to change in order for there to be a significant reduction in both – a substantial reduction in my current weight, exacerbated by using insulin, better A1C blood sugar management, which may be a result of changing the form and administration of insulin to a much more intense dose management more closely related to my blood sugar levels and meal times, and a more appropriate combination of reduced caloric intake with a physical exercise regime which focuses as much on increasing flexibility of my skeletal and muscular systems, as on weight loss or caloric output.
I think, from my own experience, that the cited report offers some valuable clues to fibromialgia, its causes and some potential treatments. But I also think that these relationships are more complicated that they appear on the surface, and may require much more than a magic bullet to help deal with the pain.