Moments in my life #3: Dealing with Pain

If you read this blog regularly you will know that I am preoccupied with pain. There are at least ten posts wherein I address pain more or less directly. This one will make it eleven. What triggered my writing this post is a Zoom class I had yesterday on Somatics designed to help us deal with chronic pain. It comes from the Central Island Pain Program at the Nanaimo General Hospital, an organization I had something to do with several years ago after I experienced a lot of pain from kidney surgery. I’ll deal with Somatics at the end of this blog post.

Pain! There are a few people who do not experience pain at all (their condition is called congenital insensitivity to pain,(CIP) or also hereditary sensory and autonomic neuropathy type IV (HSAN IV). Those individuals who can’t feel pain wish they could because if they inadvertently put their hand on a hot stove element they don’t know about it until they smell burning flesh, that’s if their sense of smell is operative which it often isn’t. (There is some very interesting research reported on a Wikipedia site about the gene that is involved in congenital insensitivity to pain.)

So pain is not always a bad thing.

In fact pain is a signal that something is not quite right in our body. For instance, the sensation (pain) I feel in my left thoracic area is a result of surgery, as I noted earlier. I had my left kidney removed because of kidney cell cancer. That was in 2002 and the sensation has not gone away although it varies in severity. These days I don’t feel it that often but that’s because I don’t stress that area of my body by doing work or sitting inappropriately. A few years ago a doctor at the Pain Clinic at the Nanaimo General Hospital ultimately suggested that I have a tens machine implanted in that part of my thoracic area to relieve pain. I respectfully declined the invitation. In the Pain Clinic’s orientation session the staff told us that the pain we were experiencing in various parts of our bodies was really in our brains, not at the site of the trauma. Apparently it’s the brain that tells us that we have pain. If the brain doesn’t get a signal from the site of trauma, we don’t experience pain. I experience pain in various parts of my body these days and it seems that the pain receptors in my brain are quite active but the pain always seems to be located at the trauma site.

Pain is not just one type of bodily phenomenon or experience. If you go to the emergency department of the local hospital or to your family physician’s clinic you may very well be asked what kind of pain you are having. I always find that a difficult question to answer. Well, are you having stabbing pain? Or is it like electric shock? Or is it throbbing pain? My answer is often “yes” because I can experience several kinds of pain simultaneously. For example, my neck pain can be quite severe at times. I experience it as stabbing pain or what I call ‘charley-horse’ pain because of the cramping that accompanies it, but there’s always an underlying throbbing pain too that varies in severity. It’s caused by degenerative disc syndrome which is very common in older people and by arthritis. Simultaneously I’m having peripheral neuropathy and my legs hurt as well as my lower back. So I have lots of pain in various parts of my body. In fact, there are dozens of types of pain, some specific, some very general.

The Johns Hopkins Blaustein Pain Treatment Center website provides a list of pain types for our reading pleasure:

“At the Johns Hopkins Blaustein Pain Treatment Center, we provide treatment for the following types of pain:

  • Low back pain
  • Spinal stenosis
  • Vertebral Compression Fractures
  • Cervical and lumbar facet joint disease
  • Sciatica/Radiculopathy (“pinched nerve”)
  • Sacroiliac joint disease
  • Failed back surgery pain (FBSS) / Post-Laminectomy Neuropathic Pain
  • Neuropathic (Nerve) pain
  • Head pain / Occipital neuralgia (Scalp/head pain)
  • Hip pain
  • Intercostal neuralgia (Rib pain)
  • Peripheral neuropathy (Diabetic nerve pain)
  • Complex regional pain syndrome (Reflex Sympathetic Dystrophy –  RSD)
  • Herniated discs and degenerative disc disease (discogenic pain)
  • Neck pain
  • Shoulder and knee arthritic pain (osteoarthritis)
  • Myofascial (Muscular) pain
  • Post surgical pain
  • Cancer pain (pancreatic, colorectal, lung, breast, bone)
  • Pain from peripheral vascular disease
  • Anginal pain (chest pains)
  • Post-herpetic neuralgia (shingles pain)
  • Nerve entrapment syndromes
  • Spastisticy related syndromes/ pain
  • Spinal Cord Injury (central pain)
  • Pelvic pain
  • Thoracic outlet syndrome”

Well, shit, I can experience any ten of these types of pain at any one given time. So, if you ask me what kind of pain I’m having, take your pick. Don’t ask me to come up with just one, unless of course, at any specific moment a particular pain experience is taking centre stage as in my appendectomy.

Is it acute or chronic? Well, yes!

Acute pain is the result of injury. Chronic pain is the result of disease. That may be a classificatory simplification, but it’s basically accurate. To me, my neck pain seems to be both. There’s definitely disease going on in there, but if I move my neck suddenly or if I try to do something like draw, paint, or work on my canoes, the resultant pain feels like pain caused by an injury. If I (or you) have chronic pain from one or more sources, that doesn’t mean I can’t also experience acute pain, and vice versa.

And what about the intensity of the pain? Well, goddamn it, that’s another tough question to answer. Doctors and other sundry medical types generally trot out the ten point scale to measure pain intensity, but there is a list of ten scales here, so it’s not simple. Pain clinics are everywhere and are very busy these days. I’m currently attending the Pain Clinic at the Nanaimo Regional Hospital (again!). Well, I’m not really attending, yet. So far all interactions with the clinic have been by Zoom. But on October 6th I’m going to Nanaimo to have a steroid injected into my neck to see if we can attenuate the pain signals to the brain. That’s a good solution because surgery is not really an option and it’s so common among old folks like me that it’s hardly worth the bother to consider. Palliative care is the goal. It’s interesting, though, that the decision to inject the steroid is a tacit recognition that pain starts at the site of trauma. I have bone pain. It’s clear that that’s caused by multiple myeloma and its propensity to cause bone lesions. The bone lesions in my femurs result in pain signals to my brain where I’m told pain is experienced. So how can this kind of pain, or any of the pain I’m experiencing, be treated? Well, let me count the ways!

Just to be clear, I mentioned palliative care in the above paragraph. As this website notes, palliative care is all about pain management. It’s not the same as hospice care or what we sometimes refer to end-of-life care. So palliative doctors (there are some in the Comox Valley) focus on pain relief mostly for chronic severe pain. They offer a number of treatments for pain relief.

Overall, there are many treatment options for severe chronic pain. Medications are commonly used for pain relief. Opioids like hydromorphone are quite often used. I take hydromorphone orally every day. Gabapentin and nortriptyline are two I’m familiar with but there are hundreds or meds used for pain relief (Google it). Surgery is often used to relieve pain as are injections of various kinds like the one I’ll be getting next month where a steroid will be injected in my neck. There is a procedure where a cement is injected into vertebrae to relieve pain and there is a procedure where a balloon is used to open up the spaces in the vertebrae blocked by compression.

The Pain Clinic at the Nanaimo General Hospital offers many options for classes designed to help one address pain by conscious activation of the autonomic nervous system with gentle ‘exercise’. Somatics is a practice used to slowly and consciously re-program the nervous system to deal with pain. I’ll give it a try. Muscle tension is a major source of pain so anything that can relieve tension is worth a try. So far, for me, medications have been the major treatment I’ve received for pain relief. They haven’t always worked that well. Hydromorphone works but to relieve pain I need to take so much that it leaves me cognitively impaired and that’s not something I’m willing to entertain. So I put up with some pain so that I can retain some cognitive and psychic sharpness.

That’s enough for today, and maybe I’ve written enough about pain. Thanks for reading my posts.

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Moments in my life #2: Withdrawing from opioids

It’s now 5:11 AM on Friday, August 27th, 2021. I just came downstairs to my recliner/writing station. I’ve been awake since 2 AM in a dexamethasone induced insomnia and decided that it was unproductive to just lie there thinking about nothing in particular (or a multiplication of musings about my life and career) when I could be downstairs at my computer where I could retain in writing some of the musings that had come to mind as I was lying in bed with my hands behind my head in a position not particularly inducive to bringing on sleep. So, if I had no possibility in my Dex determined insomnia to fall asleep, I might as well come downstairs. Princess Pretty Paws seemed to have no objection so here I am. She does expect that if I come downstairs, I will give her some “kitty crack”, marketed as cat treats or whatever. She’s addicted to her treats and will not be denied so I obliged and before sitting down I laid out a few bits of her favourite crack to munch on. She was appreciative if I can deduce that from her silence and aloofness. She’s now sitting in the kitchen awaiting another few bits of crack, but they’re not coming. She isn’t complaining so I won’t pay any more attention to her. If she meows a lot I may get up and indulge her. Oh wait, she’s just come over and is threatening to march all over my keyboard, so I’d better get up and give her a few treats. So, that’s that. Now I can get to the topic at hand, that is, withdrawing from opioids.

Some readers of this post might consider this offering as a confession of failure. It may be viewed that way, I guess, but it’s more, in my mind, a reflection on the vagaries of life and responses to unintended outcomes and life-threatening events. I was first diagnosed with multiple myeloma (bone marrow cancer) in the fall of 2019. It was clear to Carolyn and me that I had been suffering from the effects of myeloma for many years and the resulting MRIs and CT scans confirmed that: for one thing, my femurs were being excavated by myeloma and my left femur had a ‘lytic lesion’ of 10 centimeters in length at the distal end closest to my knee and that the whole-body chronic pain I was dealing with which was clearly an effect of myeloma. That explained why I was in such constant pain all the time and increasingly unable to engage in the kinds of wonderful activities I had anticipated being able to engage in after my retirement in 2012. Of course, age plays a huge part in a body’s preparation for death, its entropy. We inevitably get weaker and have age-related physical symptoms that preclude strenuous activity. I don’t think that evolution had in mind (so to speak) that we would live so long. So now most of us over seventy have back and neck problems that tell us it’s time to slow down and forego the strenuous activities that were the hallmarks of earlier life. 

When I was finally diagnosed with myeloma, I was prescribed pain medications on top of the chemo meds I would be taking for the foreseeable future to deal specifically with my cancer. One of those meds was hydromorphone, a synthetic opioid much stronger than morphine. After some time, I was also prescribed other meds to deal with the neuropathic pain I was suffering brought on by myeloma. I was offered and take gabapentin. I was offered, took nortriptyline, then stopped taking it a few months back because I couldn’t stand the side effects it produced: unable to taste my food, enjoy eating, and I had dry mouth all the time. Enough of that. 

So, I’ve been taking a low dose of hydromorphone in two forms since late 2019. One form is a slow release 3 milligram tablet taken in the morning and 6 milligrams in the evening. It’s designed to produce ongoing relief from pain. I was also prescribed 2 milligram tablets of hydromorphone as a ‘breakthrough’ med if the pain got out of hand. I did take the breakthrough hydromorphone occasionally especially after I had indulged in some activity more strenuous than was good for me. It always worked if I took enough of it. The most I ever took was 18 milligrams, and that was only a couple of times. Taking the hydromorphone in that form eliminated some of the more egregious types of pain I endured, mostly in my thoracic area, lower back, neck, and legs, well in my whole body is what I’m saying.

Lately I’ve been feeling that I might be able to forgo some of my pain meds because I’ve been feeling pretty good. My neck pain is still nasty and prevents me from painting and drawing. Sculpting, especially with a chainsaw, is out of the question. I tried backing off gabapentin and soon realized that that was a mistake. My neuropathic pain returned with a vengeance. I’m now taking a bit more Gaba than I had been. The reality is that every med I take has side effects. None are purely capable of producing pain relief without negative consequences. Dexamethasone, for example, one of my chemo meds, is a powerful pain killer, but has huge negative consequences over time resulting in severe bone deterioration. It’s a glucocorticoid (Google it). It is not to be taken lightly although in my desperate state over the pain in my neck, I will go to the Pain Clinic at the Nanaimo Hospital in October and have some Dex injected into my neck. According to the doctor there, it may help, it may not. What have I got to lose at my age by giving it a try?

Anyway, getting back to hydromorphone. Of course, I knew that taking an opioid was fraught with issues, not the least of which is addiction. However, faced with severe chronic pain in most parts of my body, hydromorphone produced some relief and allowed me to resume some of my former activities. I can still write. Problem is that there is a balancing act when taking opioids for pain relief. Take too much and you become brain-addled and incapable of much in the way of coherent thought. Take too little and the pain relief objective is undermined.

In the face of the negative consequences of taking a powerful opioid like hydromorphone, I decided recently that I would try to withdraw from it. I knew that I shouldn’t try going cold turkey, so I decided to do the right thing and go cold turkey. Go figure! I stopped taking it last Sunday. I figured that since I was on such a low dose, how could I possibly be addicted? Well, I am addicted and the proof of that was how my body reacted to the withdrawal. I’ve never experienced in my life the effects of withdrawal. I didn’t experience some of the more horrific effects like vomiting and diarrhea, but after a while I just couldn’t stand the overall drastic body dysphoria that was the outcome of withdrawal. There’s no way I could sleep. I was agitated to the point of distraction. I could not relax or stay still. I paced. I sat down. I paced again. It was awful.

Consequently, Carolyn and I decided that I should probably resume taking hydromorphone in the usual way until my appointment at the pain clinic to see what my cortisone injections might produce in the way of pain relief. At that time, I will consult with my family doctor to develop a proper plan for withdrawal. I am prepared, though, for the possibility that I will not be able to live without some chemistry enabling a life with a modicum of relief from the grinding chronic pain that is my constant daily companion. My pain meds, so far, have proven effective. It may be that I’m suffering from some sort of moral panic. I’ve done some self-psychotherapy and have concluded that there is a distinct possibility that I may be in a moral existential crisis. How could a big, strong guy like me need opioids? The answer to that question is still blowing in my mind’s wind and may be the subject of another blog post. 

 

And the beat goes on…

Yes, it does. Sonny and Cher knew what they were singing about what seems like a lifetime ago now. I don’t know why, but the fact that Sonny died slammed up against a tree on a ski slope in Lake Tahoe the day after my birthday (January 5th) 1998 has my current attention. I guess it’s because his is a good example of a quick, unpredictable, death. Sonny had no time to sweat it. Death just happened to Sonny. No time to ruminate about it. Go Sonny go! I must confess that in some ways I envy Sonny his quick release.

Moving on, in my last post I told you that there was no longer any trace of multiple myeloma in my blood. I’m happy about that, but I must attach a disclaimer to that fact. The multiple myeloma will return. As I’ve repeated over and over, multiple myeloma is incurable although it is treatable. My oncologists have suggested to me that myeloma is a lot like type 2 diabetes in the way that it is treated by the medical profession. 

So, I can reasonably expect to make it to my eightieth birthday, although, frankly, longevity is not the holy grail here. And, of course, the six years from now until my eightieth year are not years owed to me. They are purely hypothetical time, years I might live, and years I might not. Moreover, as far as I know, after I’m dead, I won’t be able to regret anything about my life, how I lived it and for how long. “I” will not be so it’s ridiculous to speculate on what “I” might do after “I” am no longer. After I’m dead, “I” enter my immortality stage. 

I was not going to explore the whole business of mortality in this post, but I changed my mind. Bear with me. I just want to introduce here some ideas that I’ll come back to it in an upcoming post. These are not simple concepts to grasp, but, if you make the effort, it may help you understand life and death as I see them. So, here we go:

Humans are mortal, but only as long as we’re alive. To be blunt about it, it’s only when we are alive that we can die. Once we die, we are no longer mortal, we now become immortal, that is, we no longer change, and we consist only of what others remember of us. Our lives are complete. Simply put, immortal means not mortal. Well, once we’re dead, we are no longer mortal, by definition. We’ve arrived! We’ve become immortal! That doesn’t mean that we will live on forever in some form or other as defined by most of the religions that exist on this planet. No. “We” exist, after our deaths, only in the minds of others. 

My definition of immortality is clearly not the one espoused by most religions. The Abrahamic religions, for example, get around the problem of death by coming up with the idea of the soul. According to Christianity, the soul is the immortal aspect of human existence and is continuous before and after death. The body may return to the planetary store of compounds, atoms, and molecules, but the soul, well, the soul lives on in some kind of ill-defined relationship with a deity, “God” in the case of Christianity.  My definition of immortality does not acknowledge the bicameral nature of the person as consisting of body and soul. I see no evidence for the existence of a soul. Therefore, it does not ‘fit’ into any explanatory scheme I concoct. 

I could go on and on about death and dying as most of you well know, and as I promised I’ll get back to it in a subsequent post, but for now I’ll drop the philosophizing about immortality, death and dying and take up an issue that I’m currently faced with given the fact that we’ve tamed my myeloma. 

A few months ago, while I was still struggling with active myeloma, the pain in my bones was severe, and it was compounded by peripheral neuropathic pain. At that time a priority for me was pain relief. It still is to a large extent, but now, my priority is to see how far I can go in weaning myself off pain medications that were crucial for me for the time I was under the full effect of myeloma.  Now, I’m on two prescription pain medications and I take acetaminophen when I think of it. I was on three prescription pain meds until just recently, but I quit one of the medications cold turkey. Along with several annoying side effects, one of the more insidious side effects of that medication is dry mouth. My sense of taste was affected. I could barely taste some of my favourite foods and some I could not taste at all. I was anxious to try life without this med and as it turns out I’m quite confident that I’ll be fine without it. 

That leaves me with two pain meds. Gabapentin is a med I take for neuropathic pain. I’m currently cutting back on it to see how it goes. I’m not going cold turkey on Gabapentin, but I am determined to eliminate it from my pantheon of drugs. Hydromorphone is the drug that is the backbone of my pain treatment. I take it in slow-release form twice a day to deal with the daily predictable pain I get from myeloma’s excavations of my femurs as well as from sciatica and degenerative disk disease. I can also take hydromorphone in what’s called a pain breakthrough mode. That is, if the slow-release form of hydromorphone isn’t doing the job, I can take a more fast-acting form of the drug in any amount I feel is needed. I have taken breakthrough hydromorphone, but only sporadically, and as a last resort. I take as little of this drug that I feel will do the job. Taking more than a few milligrams of breakthrough hydromorphone leaves me hallucinating, not something I enjoy.  

The problem is that I’m seventy-four and at my age, the degenerative process is well under way. There’s no stopping it, and it’s not satisfied until it’s done. At my age, just about everybody has back pain and sciatica. These are conditions endemic to the species. It serves us right to have evolved from an arboreal species to one that is bipedal and an upright walker. Monkeys don’t have back problems. 

So, my challenge at the moment is to reduce my intake of pain meds to the point where I get pain relief without experiencing all the negative side effects of the various meds involved. So far so good. We’ll see how it goes.

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I’m writing this post on one of the hottest days of the year so far with tomorrow promising to be even hotter yet. Thankfully we have air conditioning, so the house is staying at a very acceptable 24.5˚C. Outside today, according to our weather station, the temperature has topped out at around 40˚C. Tomorrow, the prognosticators have promised us temperatures of 40˚C at mid-afternoon, so the beat goes on. 

I’m not complaining about the weather. The weather is what it is. It doesn’t respond to our needs, but instead requires that we respond to it if we’re not happy with it. Good luck with that. On to the next post now. Maybe I’ll take less time to get it out than it took me to get this one out. No promises. 

Check out this article Carolyn found for me. It’s a great discussion of chronic pain:

https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?CMP=Share_iOSApp_Other