The indispensable tools to cope with chronic pain

Preserving what we cannot live without

“Crabs” by Vincent Van Gogh, 1889.

I mentioned before that I tried epidural corticoid injections for a year, with uninspiring results. The last two applications were practically without effect. I was then referred to neurosurgery, and, while waiting, to a ketamine clinic. Ketamine was a no-go because of the exorbitant price, the invasive surveillance, and the fact that it is not covered by insurance. I still had some prescribed opioids until, at last, I had to give up on that as well because of serious misconduct in every clinic I saw involving pain treatment. Negligent, extremely authoritarian, abusive, and dangerous: the patient agrees to give up important individual rights through the “opioid contract” (Patient Prescriber Agreement on Opioid Treatment and here), including inspection of the patient’s property, as well as a drug test at every new script, with no refills. The clinic I used contaminated my urine sample and charged me for a second test on, I believe, a second sample. However, I never saw it, and the collection cup wasn’t even sealed in front of me as any drug test requires. Anyone can tamper with it. The same two clinics practiced billing fraud against me, as well as against the insurance company, as I terminated my relationship with them. How can I trust a system without accountability for this kind of behavior? And where even asking for proof of chain-of-custody in a drug test, which is legally mandatory, gets you on the black list of the management crew? Believe me, you don’t want to be under the malicious conduct of these people in the US in general, and certainly not in backward states like Oklahoma. I’ve seen too many tragedies caused by this particular corner of the sickest health system I’ve encountered, and I won’t lengthen their list of victims. It’s a fascinating research topic, and I’ll certainly dive into it, but not as a subject.

That’s it: I have none of the pain treatment alternatives indicated for my condition, either because health care in the US is 100% private and I can’t afford some of them, or because I can’t afford the high probability of harm that will be caused by the providers in this case. I am head-on into chronic pain management without the conventional effective tools.

I am dealing with a pain that required a good dose of opioids before, easily with a constant daily level of 6-9 during the long flare-ups, with my medical cannabis, a bunch of supplements, careful exercise, and what I believe might be as effective as an anti-inflammatory diet can be. Is it possible to live like that? I didn’t think it was, and I’m not entirely sure it is, but I’m still here, trying. There are periods of very intense pain, like the one I am in as I write this entry. On days like this, it might not be possible to go to work, for example, and peace goes a long way. But there are better periods in which I train well and accomplish some. Even in the very bad days, now, I am not entirely disabled as before. A friend asked me whether this better pain management could be the result of the diet. I think it’s either too soon or too late for an effect like that. It’s too late if the diet worked like a diet designed to exclude irritants and allergens for that person if he or she were eating a “hostile” generic diet. That’s something with immediate and dramatic effects, something the person would feel in hours, and nothing like that happened with my pain. What about a long-term effect? Then maybe it’s too soon to be because of the diet. I wouldn’t know exactly when to consider the beginning of this particular diet. I am going to assume that the first day I consistently began to add both soluble and insoluble fiber supplements to my meals is the starting point for the high-fiber diet, because that is when it jumped from very low (with periods of single digits fiber percentage) to consistently around or over 100% of the recommended fiber content both because of the supplements and because of the food choices. That was September 05, 2024, three months ago. For an acute effect, it’s neither soon enough nor strong enough. For long-term anti-inflammatory response, it could be at this point a small factor. Let’s hope it increases, but right now I don’t think the most effective tool in my pain control toolbox is the diet yet.

I think it’s mostly cannabis. The pain is still very, very intense, and I’m not sure naive patients would be able to tolerate it. And cannabis, with the formulation and dose that I use, can be highly effective, and I’m probably a lucky good responder. You could say that this is comparing apples and oranges, since diet is a long-term inflammation and pain management tool, and painkillers are short-term and immediate solutions. Yes and no: Cannabis induces or sustains a state of mind of emotional detachment so that I can “see” the pain “from the outside”. It makes the pain experience much more manageable, in this respect. It helps me cope with the pain itself, the part that I feel regardless of its analgesic effect, giving me enough distance from the experience of pain, in a way that I can observe it and not freak out with it. Not freaking out is a huge part of dealing with extreme pain.

The backbone of my pain management is what I discuss on this platform every week: exercise - not only lifting, but also balance training and grip training -, diet, and mindfulness. Mindfulness is where I made the least progress, really behind here.

I have several other tools to help me carry out my plans for the day despite the pain. You may think they are trivial, but each one adds a little to the larger struggle to cope with pain. The ones I talk about in this entry are my stretches, hot showers/baths, hot packs, cold packs, buffering, topicals, supportive belts (both elastic belts for everyday tasks, and tough lifting belts for lifting), foam rolling, walking, and trigger point ball.

The basic part of these short-term tools is a 60 to 90-minute walk on my treadmill every morning, during which I also do grip training, and stretching. Grip training is not hard to do during a light walk. During the walk, I stop frequently to stretch. I found this combination of stretching and walking the best to loosen up hip pain. Some of the pain becomes hardly important for a few hours after this. Others, unfortunately, either return much sooner or are never gone. As soon as I stop walking, I do a 20-minute session of balance training, and then the remaining stretches on the ground. There is no doubt in my mind that this particular morning combination is critical for my daily, short-term pain management.

I do the following stretches: butterfly stretch, calf stretch, cat/cow stretch, kneeling hip flexor stretch with full lounge and quad stretch, Iliotibial band stretch, neck stretches, reclined spinal twist, standing spinal twist with desk support, forward fold, wide-legged seated forward fold. I would love to have pictures of me illustrating each one, but I don’t, so a link will have to do.

If it’s a bad flare-up, the pain eventually returns to full power. At this point, I could walk again or take a hot shower or bath. These are incredibly effective short-term alternatives (shorter than walking and stretching). Lifting belts are essential to control pain during training, and they are very effective. I am not using belts for stability now but for pain. Everything else adds very little to the pain control effort, but I do them all the same. Hot packs provide comfort if nothing else. Cold packs can be helpful in peaks of pain. Buffering is nice, and so are the topicals.

Comfort is not a small thing, so anything that adds to it is relevant.

The one thing that I am failing miserably at is mindfulness. For some reason, it is very difficult for me. When I’m too tired, I don’t last more than two minutes doing any of the practices. I tried different approaches, and am still trying, but I’m not making any progress yet. Unfortunately for me, this is not optional: there is strong evidence about the importance of mindfulness in pain management, whether through the indirect, long-term effect of improving self-regulation (also here), or through direct, immediate action of the mindfulness exercise (here as well). Whether I enjoy it or not (I don’t enjoy any mindfulness practice, not even a little), I have to do it, and I have to master it. No matter how I looked at this problem, I ended up with the same challenge: chronic pain creates a higher demand on any person’s executive functions. It is critical to have good self-regulation to manage intense and sustained pain situations, especially considering that self-regulatory capacities are limited resources and do seem to be exhausted by fatigue. There is a quasi-consensus in the chronic pain community concerning the pivotal importance of mindfulness in maintaining the patient’s now vulnerable executive functions.

Having reached this point, I concluded that chronic pain forces some important choices that are not as shallow as I first thought them to be. The first question you ask yourself when excruciating pain lasts too long is “How much can I take, and how much am I willing to take of this?”. These are two different questions. The first is direct and easy: how much is beyond your ability to endure, that will make you either pass out, lose all rational control, or kill yourself? Everyone has a limit. I’ve been more times than I can count beyond that limit when you can’t move, your body is tight and curled up, and you scream uncontrollably, puke, or convulse. How much before this limit can you endure, in real life? That’s another limit: it’s whatever is before the total breakdown. But there is a harder question to answer: how much are you willing to endure, for whatever reason? And that’s what finally tips the scale in favor of more invasive approaches (both in physical and legal/personal terms): they are the most effective short term. They are also very invasive, and how much invasiveness you are willing to accept is the relevant question. I am probably willing to take much less than someone who hasn’t had my experiences with or has my knowledge about the health system I have to use.

I had my initial answers to these questions, and as they changed, I went through the inevitable “dance with death”, that insistent background question: “With all this, is your life still worth living?”. The answer was yes and continues to be yes, so that means I have the other variables to play with. If I want quality of life, I can’t afford to adopt a multi-disciplinary, multi-function management strategy. I can’t afford not to have a strict high fiber, calorie-restricted diet, I can’t afford not to exercise - pain or not -, and I can’t afford to not insist on practicing mindfulness, and more: becoming good at it. Finally, I cannot afford not to be self-reliant, and the absolute executive director of my own health care: providers work for me, and their opinion has very limited value for my decision-making, which I share with no one. The alternative is giving up, and signing up for “prisoner on probation” to the Oklahoma and federal health system, providing absolute power to providers I don’t trust; the alternative is also giving up cannabis, because under the “opioid contract”, you must take a drug test where cannabis is considered banned; finally, the alternative is being permanently concerned with what clinics and managers can do to pain patients, and frequently do. That’s the choice. As long as I am not entirely disabled by pain, I will avoid the second alternative like hell.

It’s a tougher and lonelier road, but not one entirely unknown to me.